Since my last entry, I had my surgery which went very well. There were no complications and the surgeon was able to remove all the aforementioned organs without “going open”. He did have to make the main incision a little larger which extends about three inches straight up from my belly button and curves around the belly button. There are three visible scars one up and to my left from the main incision and the other two flanking the main incision, which were used to insert the instruments during the laparoscopic surgery. The only two surprises were the need to remove 18 inches of small intestine vs. the 8 that were originally planned, and the degree of disease in my gall bladder. The larger amount of small intestine removed was solely to eradicate the entire affected portion, which appeared to be larger than originally thought. The gall bladder was swollen and slightly adhered to my liver due to inflammation, but the pathology tests were negative so there was nothing else fishy going on.
My recovery was long; in all I was out of work for five weeks. I at first thought I would return after four weeks but an unexpected sharp pain popped up at the end of the fourth week which prompted me to take it easy and stay away from the office. I was assured by the surgeon at my post-op appointment that the sharp pain was likely some slight tearing of the mesentery tissue, and not a hernia or something more serious. The pain medication that was given, Percocet, was very effective at not only relieving pain but also making me quite loopy. I definitely understand why people become addicted to that stuff!
Now I have recovered almost completely, although I am still not doing any sit-ups or other abdominal exercises because of some occasional lingering pain. I have decided to help raise funds for the American Cancer Society by participating in a fundraiser called “Climb to Conquer Cancer”. It is a fairly simple hike around Castlewood Canyon but the main purpose it to accumulate sponsors to raise funds. I hope I am successful in reaching my goal of $1000, and I hope to participate in this and other fundraisers in the future. My fundraising page is:
http://main.acsevents.org/site/TR?pg=entry&fr_id=17953
Friday, August 7, 2009
Tuesday, April 14, 2009
Goodbye Terminal Ileum, Ascending Colon, Gallbladder, and Appendix
I have scheduled my surgery, which will be May 4th. I learned that in order to remove the terminal ileum, my surgeon will also have to remove my ascending colon. This is due to the arteries feeding that section of my intestines and the fact that he cannot leave any portion after the feeding arteries have been disconnected. I am attaching a hyperlink to a picture of the arteries of the intestines to get an idea of how things are connected.
http://l.yimg.com/fz/ls/he/mayoclinic//images/image_popup/r7_ischemiccolitis.jpg
I am also attaching a hyperlink to the webmd.com explanation of the surgery that I am going to have. I am having a Distal Small Bowel Resection to remove the terminal ileum, a Right Colectomy to remove the ascending colon, and a cholecystectomy to remove gallbladder. It was determined that I have a gallstone in my gallbladder, which has not caused any problems, but the stones will likely get bigger and cause problems later. So, while my surgeon is "in the neighborhood" he is going to go ahead and remove that as well.
http://www.webmd.com/colorectal-cancer/removal-of-right-colon
Hopefully, these work.
Saturday, March 14, 2009
Prior Foreshadowing Being Realized
In my final blog entry of 2007, just after finishing chemotherapy I mentioned the transition that I am now experiencing in going from treating cancer back to treating Crohn’s disease. This was relevant because my medications may have contributed or even caused my lymphoma, especially the immunomodulators. It has now been approximately 15 months after chemotherapy, and my Crohn’s disease has progressed to the point where the standard anti-inflammatory drugs are losing the battle. I am still within that two year window where a recurrence of Hodgkin’s Lymphoma is most likely, and if there are a few remaining cancer cells that have survived, going back on the immunomodulators could weaken my immune system enough to allow the cancer to spread once again. The immunomodulator Remicade was the only drug that I have taken during the eleven years since my Crohn’s diagnosis that has effectively controlled and prevented symptoms. My recent colonoscopy revealed that the inflammation in my terminal ileum has progressed to the point where the scope could not even safely navigate through to inspect the extent of the disease. I am at risk of a blockage induced by long fibrous foods becoming trapped through the bottleneck into my colon. Now I have to make a difficult decision. My gastroenterologist feels the best option is to have an intestinal resection surgery to remove the affected portion of my terminal ileum. I have agreed. Because my doctor was unable to physically see the entire affected portion during my colonoscopy, I had a small bowel follow-through procedure. This procedure is a fairly simple radiological procedure. I drank a barium solution and then waited for it to travel through my small intestine. After a startling short twenty minutes, the barium solution had traversed the entire 30 feet and I was ready for the radiologist to start filming. He took several pictures of my innards while I watched him prod me with a device that was invisible to the X-ray. He told me that it appeared that the affected portion was approximately 7-10 inches traveling upstream of the terminal ileum from the connection point of the colon. He said otherwise he could not see any fistulae or other affected portions.
My next step is yet to be determined. I am awaiting an appointment with my gastroenterologist who will refer me to a surgeon. I will then learn exactly what to expect from my upcoming surgery. I know that these procedures are very routine and typically are performed by general surgeons as apposed to a specialized gastrointestinal surgeon. They are commonly performed laproscopically followed by a 4-5 day stay in a hospital. I don’t know if there is an extended bed rest period following the hospitalization or how many days I will be required to use a colostomy bag. There are a million questions running through my brain and I cannot wait until my pre-surgical meeting with my surgeon, whomever that will be. In the mean time I have been ordered by my doctor to go on a low residue/low fiber diet. That means I am not allowed to eat raw fruits and vegetables or whole grains. Imagine a doctor telling you to go on a “all hostess product diet” and that is my reality! I am at risk of a blockage every day until my surgery so I have to be careful. I am preparing to fly to Buenos Aires for a 10 day vacation next week, and I am a little worried about the possibility of incurring a blockage and needing emergency surgery while I am in Argentina. Hopefully, that fear will not ruin the trip. I have been put on a large dose of Prednisone to bring down the inflammation, which hopefully will keep me out of the hospital until my scheduled surgery.
And so the struggle continues of controlling my Crohn’s disease while still not inducing a recurrence of Hodgkin’s Lymphoma or another cancer caused by immunomodulators. Fun stuff!
My next step is yet to be determined. I am awaiting an appointment with my gastroenterologist who will refer me to a surgeon. I will then learn exactly what to expect from my upcoming surgery. I know that these procedures are very routine and typically are performed by general surgeons as apposed to a specialized gastrointestinal surgeon. They are commonly performed laproscopically followed by a 4-5 day stay in a hospital. I don’t know if there is an extended bed rest period following the hospitalization or how many days I will be required to use a colostomy bag. There are a million questions running through my brain and I cannot wait until my pre-surgical meeting with my surgeon, whomever that will be. In the mean time I have been ordered by my doctor to go on a low residue/low fiber diet. That means I am not allowed to eat raw fruits and vegetables or whole grains. Imagine a doctor telling you to go on a “all hostess product diet” and that is my reality! I am at risk of a blockage every day until my surgery so I have to be careful. I am preparing to fly to Buenos Aires for a 10 day vacation next week, and I am a little worried about the possibility of incurring a blockage and needing emergency surgery while I am in Argentina. Hopefully, that fear will not ruin the trip. I have been put on a large dose of Prednisone to bring down the inflammation, which hopefully will keep me out of the hospital until my scheduled surgery.
And so the struggle continues of controlling my Crohn’s disease while still not inducing a recurrence of Hodgkin’s Lymphoma or another cancer caused by immunomodulators. Fun stuff!
Friday, December 12, 2008
One Year and Counting
Yesterday I met with my oncologist to go over the results of my latest PET scan which was one week ago today. The short story is there was no sign of recurrent Hodgkin’s Lymphoma. YEAH!! The longer story is that once again the radiologist wrote in his report that there was progressive disease meaning again he/she was unaware that I have Crohn’s disease. The metabolic activity that exists in the inflammation of my terminal ileum looks the same on a PET scan as cancerous cells. Once again, my Crohn’s disease is complicating things. After meeting with the radiologist my oncologist confirmed that there are no enlarged lymph nodes and no unusual activity in the spleen or other organs commonly susceptible to lymphomas. The blood tests also show no signs of lymphoma.
The scan did indicate that a larger portion of the terminal ileum is inflamed in comparison to my last scan approximately six months ago. The wall of the ileum is also thicker with inflammation. This indicates my Crohn’s disease is more active than it was six months ago. It is worth mentioning that PET scans are rarely, if ever, used to study Crohn’s disease. PET scans are very expensive and insurance would never cover it. It is possible that if multiple PET scans were taken days or even several hours apart they may show that the level of inflammation can vary significantly. In other words, this PET scan could just have been performed at a time of relatively high inflammation. I have an appointment with my gastroenterologist in early January, so we will again discuss my treatment options to keep the inflammation at bay while hopefully staying away from immunosuppressants.
That slightly bad news aside, the appointment yesterday was very encouraging and I am hopeful that I will successfully avoid a recurrence.
The scan did indicate that a larger portion of the terminal ileum is inflamed in comparison to my last scan approximately six months ago. The wall of the ileum is also thicker with inflammation. This indicates my Crohn’s disease is more active than it was six months ago. It is worth mentioning that PET scans are rarely, if ever, used to study Crohn’s disease. PET scans are very expensive and insurance would never cover it. It is possible that if multiple PET scans were taken days or even several hours apart they may show that the level of inflammation can vary significantly. In other words, this PET scan could just have been performed at a time of relatively high inflammation. I have an appointment with my gastroenterologist in early January, so we will again discuss my treatment options to keep the inflammation at bay while hopefully staying away from immunosuppressants.
That slightly bad news aside, the appointment yesterday was very encouraging and I am hopeful that I will successfully avoid a recurrence.
Wednesday, October 8, 2008
Chicken or the Egg?
Recently I have had separate appointments with my gastroenterologist and with my oncologist. My gastroenterologist clarified one detail that I had either missed or misunderstood. The consultations with Mayo clinic experts resulted in a recommendation to avoid Remicade and Azathioprine for as long as possible. The detail I missed was the reason why. The recommendation is not based on a theory of the drugs causing cancer cells to begin growing; rather they are worried that if any lingering cancer cells exist or if recurrent cancer cells begin to grow the immunosuppressant drugs may retard the immune system’s natural ability to fight them off. They are not sure if either drug actually caused my initial bout with cancer. No one is sure of that. My appointment with my oncologist further confirmed that mystery. Even the hematological oncologist experts are not sure what caused my cancer. My oncologist also discussed my case with experts and none of them had a definitive answer. Everyone is in agreement that the longer I can avoid going back on the immunosuppressant drugs the better. The question is: if I find no other alternative and must go back on either one, will that possibly cause cancer cells to begin growing or will that simply allow cancer cells that may or may not already exist to spread? I may never know.
On the bright side, I am doing very well. Physically, my strength is back, although my muscles frequently are sore for several days after physical activity. I don’t have difficulty during the activity, such as climbing a 14er or biking, but afterward I realize my body does not bounce back like it used to. Also, the neuropathy in my feet still has not gone away, and after 9 months it is likely that it never will.
On the bright side, I am doing very well. Physically, my strength is back, although my muscles frequently are sore for several days after physical activity. I don’t have difficulty during the activity, such as climbing a 14er or biking, but afterward I realize my body does not bounce back like it used to. Also, the neuropathy in my feet still has not gone away, and after 9 months it is likely that it never will.
Friday, August 8, 2008
Mayo Clinic Gastroenterologists Weigh In
Almost a month ago, I had an appointment with my gastroenterologist to begin strategizing my future treatment of Crohn’s Disease now that the remission period had ended. I had begun to have episodes of considerable pain in my abdomen which has become all too familiar over the last ten plus years with the disease. At that appointment we discussed options the least extreme being oral medications including Pentasa (mesalamine) which is an anti-inflammatory that I began taking prior to that appointment and has been a staple of my treatment for the last decade. It is not effective enough to use alone, and in the past I have relied upon Prednisone, a corticosteroid, to quell bouts of high inflammation. There are long term negative side effects associated with long term use of Prednisone; so unfortunately, I cannot stay on it for very long. My gastroenterologist instructed me to begin taking Entocort, which is another form of steroid that has a lower prevalence of negative side effects.
During the appointment, my gastroenterologist called my oncologist in private and they discussed future options. The topics of discussion were the two immunosuppressive drugs that I was taking prior to my Hodgkin’s diagnosis. They include Azathioprine (Imuran) and Remicade(Infliximab). Remicade is a TNF inhibitor that I actually signed a waiver at the onset acknowledging the risk of cancers such as lymphomas. Obviously, I am concerned about restarting drugs such as these which may have been the cause of my lymphoma. Another topic of discussion was the option to surgically remove the affected portion of small intestine, which is approximately a foot long located at the terminal ileum.
After their discussion, my gastroenterologist gave me a quick summary. He said that both doctors agreed to seek expert opinions in both lymphoma oncology and gastroenterology as well as the manufacturers of Remicade to investigate any possible correlations. My Gastroenterologist has previously said that he was aware of a possible correlation between Azathioprine and lymphoma. On a different occasion, my oncologist had indicated that to his knowledge the only believed association with Remicade and lymphoma was with Non-Hodgkin’s lymphoma. My perception was that my oncologist believed my case of Hodgkin’s lymphoma was independent of the Remicade that I had been taking. He also expressed his opinion that resuming Remicade would have no impact on whether I could or would have a recurrence of Hodgkin’s.
I left the appointment with instructions to begin Entocort and wait for my two doctors, both of whom I trust and respect, to conduct research and get back to me. Yesterday my gastroenterologist called me with the results of his research. He stated that he contacted the medical director of Remicade who recommended against resuming Remicade. My doctor said that this was not surprising given the fact that the Remicade medical director has the goal of minimizing the negative side effects associated with that drug. My doctor also contacted gastroenterology experts at the Mayo Clinic. They also recommended avoiding Remicade “as long as possible”, and to instead consider Entocort on an extended basis. They also advised to never resume Azathioprine. The Mayo Clinic experts were not too enthusiastic about recommending surgery, but did not discount it.
So what does all of this mean? I still want to find out the results of my oncologist’s research, because his early opinion was that there likely is no lymphoma risk in resuming Remicade. Hopefully I will be able to visit with him when I go in next week for a CBC.
The good news is that Entocort does appear to be effective so far. The episodes of pain have been less severe and far less frequent. I am not sure yet how long I can stay on Entocort without negative side effects, but at least the early result is optimistic. Perhaps, I can avoid the need of surgery and investigating other medications if the success with Entocort continues.
During the appointment, my gastroenterologist called my oncologist in private and they discussed future options. The topics of discussion were the two immunosuppressive drugs that I was taking prior to my Hodgkin’s diagnosis. They include Azathioprine (Imuran) and Remicade(Infliximab). Remicade is a TNF inhibitor that I actually signed a waiver at the onset acknowledging the risk of cancers such as lymphomas. Obviously, I am concerned about restarting drugs such as these which may have been the cause of my lymphoma. Another topic of discussion was the option to surgically remove the affected portion of small intestine, which is approximately a foot long located at the terminal ileum.
After their discussion, my gastroenterologist gave me a quick summary. He said that both doctors agreed to seek expert opinions in both lymphoma oncology and gastroenterology as well as the manufacturers of Remicade to investigate any possible correlations. My Gastroenterologist has previously said that he was aware of a possible correlation between Azathioprine and lymphoma. On a different occasion, my oncologist had indicated that to his knowledge the only believed association with Remicade and lymphoma was with Non-Hodgkin’s lymphoma. My perception was that my oncologist believed my case of Hodgkin’s lymphoma was independent of the Remicade that I had been taking. He also expressed his opinion that resuming Remicade would have no impact on whether I could or would have a recurrence of Hodgkin’s.
I left the appointment with instructions to begin Entocort and wait for my two doctors, both of whom I trust and respect, to conduct research and get back to me. Yesterday my gastroenterologist called me with the results of his research. He stated that he contacted the medical director of Remicade who recommended against resuming Remicade. My doctor said that this was not surprising given the fact that the Remicade medical director has the goal of minimizing the negative side effects associated with that drug. My doctor also contacted gastroenterology experts at the Mayo Clinic. They also recommended avoiding Remicade “as long as possible”, and to instead consider Entocort on an extended basis. They also advised to never resume Azathioprine. The Mayo Clinic experts were not too enthusiastic about recommending surgery, but did not discount it.
So what does all of this mean? I still want to find out the results of my oncologist’s research, because his early opinion was that there likely is no lymphoma risk in resuming Remicade. Hopefully I will be able to visit with him when I go in next week for a CBC.
The good news is that Entocort does appear to be effective so far. The episodes of pain have been less severe and far less frequent. I am not sure yet how long I can stay on Entocort without negative side effects, but at least the early result is optimistic. Perhaps, I can avoid the need of surgery and investigating other medications if the success with Entocort continues.
Friday, July 18, 2008
Picture of Reassurement
This is my most recent PET scan image. There are a few sections that are bright which represent areas that were attracted to the radioactive glucose. One is my heart (center bright spot), one is my bladder (low brightest spot), and another is my brain (top bright spot). All of those organs naturally attract glucose. Another wavy section above my bladder and to the left is my inflamed terminal ileum. This is a good visual of the affect of Crohn's Disease. This image is visual proof that my Crohn's Disease recession period has ended. :( Too bad, that was the best part of chemotherapy!
Thursday, July 3, 2008
Radiologist vs Oncologist: and the winner is....
I recently had my latest PET scan (Friday June 20th) and my oncologist called me last week to give me the the results. He said that the radiologist who read the scan wrote in his report that the findings were "recurrence of lymphoma". This obviously concerned my oncologist but he was skeptical having recently met with me and having seen my progress and strong health. He met with the radiologist and the two doctors went through the images together. When my oncologist ordered the scan, he had tried to give a medical history including lymphoma and crohn's disease. In the relay of that message the crohn's disease portion was omitted. During their meeting my oncologist clearly saw that the positive indications of the PET scan showed inflammation of the terminal ileum, which is the exact site affected by my crohn's disease. With this new information in hand, the radiologist agreed that the results of the scan indicated crohn's inflammation, not a recurrence of lymphoma.
A slight scare, and all because not all the information was properly relayed from one doctor to the other. Rebecca and I spoke to my oncologist in person today, and he assured us that he is absolutely positive there is no recurrence. I trust my oncologist completely.
I will now go back for a CBC in about 6 weeks, and assuming I remain asymptomatic I will not go in for another PET for another 6 months. So sometime around Christmas time I will hopefully repeat this entry with an update of continuing to be cancer free.
Who-hoo!!
A slight scare, and all because not all the information was properly relayed from one doctor to the other. Rebecca and I spoke to my oncologist in person today, and he assured us that he is absolutely positive there is no recurrence. I trust my oncologist completely.
I will now go back for a CBC in about 6 weeks, and assuming I remain asymptomatic I will not go in for another PET for another 6 months. So sometime around Christmas time I will hopefully repeat this entry with an update of continuing to be cancer free.
Who-hoo!!
Thursday, May 8, 2008
Welcome back, Hair!
It has been a long time since my last post, and I have been doing very well. My neuropathy has not improved, but I have stopped taking Lyrica, and the pain in my feet has not returned. That is a good sign that the nerves may be able to repair themselves. My chemo brain effects my memory and concentration, and I am constantly having that feeling when you walk into a room and you don't remember why you are there. But, I am dealing with it pretty well. I finished another class, which was a difficult class, and managed to beat the class average on both tests and the overall grade. I am also doing very well in my new job at Williams. Oh, yeah, I never mentioned that. Adam Aircraft went out of business Feb. 11, 2008 and everyone was laid off. I spent about two months looking for a job and then was hired as a Facilities Engineer at Williams. I also worked for REI for a short period to make sure I was not without insurance for too long. Adam Aircraft is being restarted, and I was offered to return, but I can't afford the risk of losing my job and insurance again. I will stay with Williams.
Otherwise, things are progressing nicely. I visited my oncologist recently, and he is impressed with my progress. I have had a few scary instances where I have had labored breathing, and even wheezing, but Dr. Kenney is not concerned enough to run tests just yet. I will go in for my first 6 month post cancer PET scan in early July, and will inform Dr. Kenney if the breathing situation persists or gets worse. If needed, I will have some lung tests performed to see if I have sustained any lung damage due to chemo. I was actually more scared of a recurrence. I had a plural effusion as one of my early symptoms of Hodgkin's and I was afraid that it was returning. I used to be optimistic, but the first thing I thought of was cancer. Besides a recurrence or lung damage, it is spring time and the symptoms could simply be due to allergies or some sort of pulmonary virus or bacterial infection. However, I don't have a stuffy nose and I have not been sneezing.
Anyway that is all of the updates I can think of right now. I am posting a picture of my hair, which has made a full recovery. It is the same color it was before, but is softer. When it first grew in, it was sooo soft, like baby hair. It is slowly getting coarser, which actually makes it easier to comb. I will update again after my PET scan.
Wednesday, February 20, 2008
Cancer-free party
Nick may wish to say that he shaved his head in support, but actually he shaved "to bald gracefully."
Thanks Nick for your emotional support :)
I really wanted to post this picture to show how much of an impact eyebrows have on one's appearance. I think this was the epitome of illness for me, even though I had been declared cancer-free and I had stopped chemotherapy weeks prior to this picture.
Wednesday, January 16, 2008
Cancer Free Me!
Today it is official...I am cancer free! I met with my oncologist this morning and he informed me that my latest PET scan was negative. This does not come as a surprise because my PET scan midway through my chemotherapy was also negative, but it is still very welcome news. The only hurdle left is to remain cancer free. That is where things get complicated. My oncologist and I definitively decided today to forgo radiation treatment. This decision could prove costly because all the data from clinical trials with the Stanford V regimen involved chemotherapy in conjunction with radiation therapy. Therefore it is unknown how critical radiation is to the success of Hodgkin’s Lymphoma treatment. The statistics are good, but again they are based on both treatments.
So why did we decide to skip the radiation knowing all of that? Mine is a unique case. As I have stated in previous posts, my cancer was spread out to lymph nodes throughout my abdomen, and none of those were very large. Some individual cancerous nodes clumped together and the largest of those clumps were about five centimeters in diameter. The general rule is to radiate lymph nodes larger than five centimeters. Most Hodgkin’s Lymphoma cases involve large masses instead of a large spread. In those cases it is easier to decide whether or not radiation is advised by adhering to the five-centimeter rule. It can be argued to radiate just to be sure so that the standard protocol is followed. However, in order to do that in my case, almost my entire abdomen would need to be radiated because of the vast spread.
What is the possible harm in radiation therapy? Radiation therapy, while it had improved over recent years by utilizing three-dimensional imagery and a more focused beam, there are still many significant risks. Heart disease has been associated with radiation and so has many secondary cancers including lung cancer. This occurs when those organs are subjected to radiation due to the proximity of the targeted cancer. In my case, since the entire abdomen would require radiation, my heart, lungs, liver, and even intestines would be exposed. So in essence I would run the risk of developing any of a large number of secondary cancers as well as the risk of heart disease.
So my choices became clear: run the risk of a Lymphoma relapse vs. run the risk of secondary cancers. If I were to get a relapse, I would be treated by an autologous bone marrow transplant in combination with severe chemotherapy. This treatment is very intense and I would likely be hospitalized for months, but the success rate is very high (~75%). On the other hand, the secondary cancers including lung and liver do not carry as high of a success rate. In addition the radiation exposed to my intestinal tract could cause complications with my Crohn’s Disease. As I said, we decided to forego radiation. My oncologist did say that my chances for relapse are higher with this decision, but he could not estimate a percentage.
My next PET scan will be in approximately six months, so until then it is a waiting and hoping game. In the mean time I have been instructed to continue taking Lyrica to treat my neuropathy symptoms. My oncologist also informed me that many of his patients experience the symptoms for years after chemo and sometimes they are permanent. In those cases, the patients are forced to learn to cope with the numbness and pain. I return to visit my oncologist in two months so he can monitor my progress.
Finally, I asked my oncologist what to look out for in-between PET scans that would indicate a recurrence. As I suspected, he told me to watch for the classic symptoms of frequent fevers, extreme night sweats, weight loss, and enlarged lymph nodes. The last one I did not experience the first time, but it is the most commonly noticed symptom. I hope to never experience it, as it will likely indicate bad news.
So why did we decide to skip the radiation knowing all of that? Mine is a unique case. As I have stated in previous posts, my cancer was spread out to lymph nodes throughout my abdomen, and none of those were very large. Some individual cancerous nodes clumped together and the largest of those clumps were about five centimeters in diameter. The general rule is to radiate lymph nodes larger than five centimeters. Most Hodgkin’s Lymphoma cases involve large masses instead of a large spread. In those cases it is easier to decide whether or not radiation is advised by adhering to the five-centimeter rule. It can be argued to radiate just to be sure so that the standard protocol is followed. However, in order to do that in my case, almost my entire abdomen would need to be radiated because of the vast spread.
What is the possible harm in radiation therapy? Radiation therapy, while it had improved over recent years by utilizing three-dimensional imagery and a more focused beam, there are still many significant risks. Heart disease has been associated with radiation and so has many secondary cancers including lung cancer. This occurs when those organs are subjected to radiation due to the proximity of the targeted cancer. In my case, since the entire abdomen would require radiation, my heart, lungs, liver, and even intestines would be exposed. So in essence I would run the risk of developing any of a large number of secondary cancers as well as the risk of heart disease.
So my choices became clear: run the risk of a Lymphoma relapse vs. run the risk of secondary cancers. If I were to get a relapse, I would be treated by an autologous bone marrow transplant in combination with severe chemotherapy. This treatment is very intense and I would likely be hospitalized for months, but the success rate is very high (~75%). On the other hand, the secondary cancers including lung and liver do not carry as high of a success rate. In addition the radiation exposed to my intestinal tract could cause complications with my Crohn’s Disease. As I said, we decided to forego radiation. My oncologist did say that my chances for relapse are higher with this decision, but he could not estimate a percentage.
My next PET scan will be in approximately six months, so until then it is a waiting and hoping game. In the mean time I have been instructed to continue taking Lyrica to treat my neuropathy symptoms. My oncologist also informed me that many of his patients experience the symptoms for years after chemo and sometimes they are permanent. In those cases, the patients are forced to learn to cope with the numbness and pain. I return to visit my oncologist in two months so he can monitor my progress.
Finally, I asked my oncologist what to look out for in-between PET scans that would indicate a recurrence. As I suspected, he told me to watch for the classic symptoms of frequent fevers, extreme night sweats, weight loss, and enlarged lymph nodes. The last one I did not experience the first time, but it is the most commonly noticed symptom. I hope to never experience it, as it will likely indicate bad news.
Monday, January 7, 2008
Delayed Reaction
I am not a fan of this picture, but it is effective at showing that I have recently lost my eyebrows and most of my eyelashes. I don’t like the picture because I look tired (probably from hiking up the steep streets of Seattle) and because my eyebrows look grey. I think they look grey because my new eyelash buds are lighter colored, and my skin below is white. Those two things in combination with my few remaining dark eyebrow hairs and the end color mixture is grey. At least that is my theory.
I am not sure why my eyelashes and eyebrows waited to fall out until almost a month after my last chemo treatment. Maybe the hairs died a long time ago but did not fall out until the new hair growth, which is itchy, caused me to scratch. The scratching may have forced the hairs out. I will ask my oncologist during my appointment that will follow my PET scan, which is tomorrow.
Otherwise, I feel less tired than I did a month ago. Things are improving with two exceptions. I have had two occurrences of a strong stomach pain during the night. Both times I went to bed feeling normal, and then awoken with extreme stomach pain. The first occurrence was Christmas Eve/Christmas Morning, and the second was the night before Rebecca and I flew back to Denver (Jan 5th). Both nights the pain lasted over an hour and slowly dissipated enough to fall back asleep. The second night I was awoken twice and both times the pain lasted about an hour. I will ask my oncologist what he thinks this could be, but it could be associated with Crohn’s, not my cancer or cancer treatment. If necessary, I will ask my gastroenterologist as well. I will meet with my gastroenterologist after my PET scan because fortuitously PET scans are very effective at showing inflamed sections of the digestive system. These pain occurrences could be an ulcer, a symptom of my GERD, a symptom of my gallstone, or something else entirely...we will see.
Thursday, December 20, 2007
Cancer Shmancer transitioning to Crohn's Shmohns
It has been two weeks since my last chemo treatment, and I am starting to see some improvements. My energy level is slowly increasing and some new "hair buds" are appearing on my head. Sometimes after chemotherapy new hair can be a different color or can be curly instead of straight. This is because some of the chemo drugs alter DNA. The change is usually temporary and typically lasts about a year before the hair returns to normal. At this point, it is hard to tell what my hair buds are going to become. In some types of light, they look blonde, in others they look my usual dark brown. I am hoping they turn out blonde and curly. I've done the dark brown thing; it would be interesting to have something else.
My neuropathy has not changed, which is to be expected. My new drug, Lyrica, makes the pain in my feet bearable, but I have recently developed an itchy rash that may be an allergic reaction to this new drug. The rash started on my forehead, then moved to my face, and is now on my forearms and neck. It is really strange because it literally moves throughout the day. My doctor asked me to do some experimenting by stopping the Lyrica to see if the rash goes away. If it doesn't the Lyrica is not the culprit. If it does go away I will have to weigh the pros and cons and make a decision of which one I would rather deal with.
Another side effect that seems to be lingering is my hoarse voice. I think that it has improved slightly, but it is still difficult to hear or understand what I say by the end of the day. If it continues, my oncologist will refer me to an ear-nose-throat doctor. Otherwise my port was removed on Monday so the only thing remaining is my final PET scan which is scheduled for Jan 9th. My oncologist is very confident that it will be negative.
On the bright side I am very excited about starting to feel better, especially my energy returning. Rebecca and I recently joined a gym so that I can start to strengthen my muscles which I feel have atrophied somewhat. I am excited about regaining my strength and finally begin enjoying this beautiful state to which I was so excited to return. I am looking forward to skiing during the winter, and then hiking and maybe rock climbing in the spring and summer. A lot of my colleagues at Adam enjoy rock climbing, and they have already tried to bring me along.
Rebecca and I are flying to Seattle on New Years Eve to celebrate both ending chemo and beating cancer. We are renting a car and will spend a couple of days in Portland as well. We may even take a day trip to Canada. We both have had a rough few months so we decided to take a week to recharge our batteries.
Today I also met with my gastroenterologist to discuss our plan for my future Crohn's management. Because of the immune suppressing chemotherapy, my Crohn's is practically in remission. So for now, I am not going to be on any medications. My upcoming PET scan will show the extent of my affected intestinal tract. More decisions will be made after my doctor reviews that scan. We discussed surgery to remove the affected area and start fresh, and we discussed drug management. One thing is certain: immunosuppressant drugs will not be considered unless all other options are exhausted.
My neuropathy has not changed, which is to be expected. My new drug, Lyrica, makes the pain in my feet bearable, but I have recently developed an itchy rash that may be an allergic reaction to this new drug. The rash started on my forehead, then moved to my face, and is now on my forearms and neck. It is really strange because it literally moves throughout the day. My doctor asked me to do some experimenting by stopping the Lyrica to see if the rash goes away. If it doesn't the Lyrica is not the culprit. If it does go away I will have to weigh the pros and cons and make a decision of which one I would rather deal with.
Another side effect that seems to be lingering is my hoarse voice. I think that it has improved slightly, but it is still difficult to hear or understand what I say by the end of the day. If it continues, my oncologist will refer me to an ear-nose-throat doctor. Otherwise my port was removed on Monday so the only thing remaining is my final PET scan which is scheduled for Jan 9th. My oncologist is very confident that it will be negative.
On the bright side I am very excited about starting to feel better, especially my energy returning. Rebecca and I recently joined a gym so that I can start to strengthen my muscles which I feel have atrophied somewhat. I am excited about regaining my strength and finally begin enjoying this beautiful state to which I was so excited to return. I am looking forward to skiing during the winter, and then hiking and maybe rock climbing in the spring and summer. A lot of my colleagues at Adam enjoy rock climbing, and they have already tried to bring me along.
Rebecca and I are flying to Seattle on New Years Eve to celebrate both ending chemo and beating cancer. We are renting a car and will spend a couple of days in Portland as well. We may even take a day trip to Canada. We both have had a rough few months so we decided to take a week to recharge our batteries.
Today I also met with my gastroenterologist to discuss our plan for my future Crohn's management. Because of the immune suppressing chemotherapy, my Crohn's is practically in remission. So for now, I am not going to be on any medications. My upcoming PET scan will show the extent of my affected intestinal tract. More decisions will be made after my doctor reviews that scan. We discussed surgery to remove the affected area and start fresh, and we discussed drug management. One thing is certain: immunosuppressant drugs will not be considered unless all other options are exhausted.
Tuesday, December 11, 2007
Going Back in Time
I realized the other day that I do not have a blog entry that explains how I was diagnosed and the symptoms that I experienced before my diagnosis. I would like to add that now while I still have a good memory of what occurred. The intention of this blog is to act as both an update for friends and family and as a record of my cancer experience so I can go back and refresh my memory for years to come.
My first experience of cancer started in August of 2007 when I still lived in Texas. I did not realize it at the time, but I began feeling my first symptom of cancer. I had a strong pain in my lower back that was activated every time I was standing up straight. Due to the abdominal pain I frequently experience with Crohn’s Disease, I have learned to tolerate a good deal of pain without complaint. However, this new pain drove me to hunch over or sit down after just a few minutes of standing. Even though the location of the pain was nothing I’d experienced before, I shrugged this new pain off as a symptom of the Crohn’s flare-up that I coincidentally was experiencing at that time.
The back pain continued as I packed boxes in preparation of the move and even as moving day arrived and it was time to load the Penske truck. Rebecca could sense how much the pain was affecting me, and she lovingly packed and loaded considerably more than her share of boxes. This pain continued throughout the move.
The next cancer symptom that I experienced started the week after I had arrived in Colorado. I began having night sweats that occurred most nights. I mistakenly attributed that as a side effect of the Prednisone I was taking to combat the Crohn’s flare up. Prednisone had caused me to sweat at night before, so this was logical. But the back pain continued and Rebecca finally was able to convince me to go to the emergency room one Saturday. When we arrived, I told the nurses and doctors that I expected the pain was Crohn’s related. They ordered a lower-abdomen CT scan to be done, and gave me pain meds and steroids intravenously. The CT scan showed enlarged lymph nodes, which the ER doctor instructed can be a result of a Crohn’s flare-up. However, the radiologist noted in the report that lymphoma could not be discounted. This was the first time that the possibility of cancer was considered, but because the steroids and pain meds relieved my pain; I was released from the ER with an order to see my gastroenterologist on Monday. The radiologist also ordered that I have a lymph node biopsy performed on one of the lower-abdomen enlarged lymph nodes, which would require visual assistance with a CT scan.
I visited my gastroenterologist as ordered, and we discussed different treatment options because obviously my Crohn’s was not being controlled. The only immediate actions taken were an addition of Entocort to the oral medications I was already on, and scheduling the CT-biopsy. One suggestion was made that I increase the dosages of Remicade and Azathioprine. Ironically, these two drugs may have caused my cancer, or at least aided in its spread.
Finally, a few days later, I began running fevers. On the Friday before Labor Day I had a fever of 103.1 after running a fever of 102.5 the night before. Rebecca convinced me to go to the emergency room again. I was embarrassingly admitted to the ER with a diagnosis of “Fever” in a room next to heart attack and car accident patients. Again, I instructed the nurses and doctors that I was experiencing a Crohn’s flare-up and that I suspected the fever was a result of a blockage causing an infection. Because of my short time between ER visits, the ER doctors decided to admit me to the hospital, even after a second CT scan showed no blockages.
I stayed at the hospital for the Labor Day weekend with little more done than fever and pain management due to reduced hospital staffing. The second CT scan was of my entire abdomen and showed enlarged lymph nodes scattered throughout my abdomen, which stumped the gastroenterologists. Finally, on Tuesday, the staffing needed to perform a biopsy was in attendance. They chose to perform the biopsy on a lymph node in my neck, because it was more accessible. The original plan was to biopsy a lower abdomen lymph node before the full CT scan showed the other possibilities. The majority of the duration of the biopsy was prep using the ultrasound probe to determine the optimal path to avoid large blood vessels. Only local anesthesia was given for the prodecure, which was quick and relatively painless. A large needle was inserted into my neck under ultrasound guidance. After an audible click, which felt like a little pressure within my neck, the biopsy was taken. The doctor took five separate biopsies, which is standard procedure. I was released from the hospital right after the biopsy, with an appointment with my primary care physician that Friday to discuss the results of the biopsy. I was feeling better, because the intravenous steroids had cured my Crohn’s flare-up.
Two days later, on the evening of Thursday, Sept 6th my gastroenterologist called me with the biopsy results. He informed me that I had Hodgkin’s Lymphoma and that he and my primary care physician would refer me to an oncologist. The next day I met my primary care physician for the first time, and was referred to Dr. Kenney. I made an appointment with him for the following Thursday, when he spent over an hour with Rebecca and I explaining Hodgkin’s to us and answering our questions.
The next week was a blur as Dr. Kenney insisted upon beginning treatment as quickly as possible. The following day he performed a bone marrow biopsy right there in his office. I simply laid down on my stomach with my pants slightly down to reveal my hip, and gripped on the examining bed to endure the pain. Despite the local anesthesia that was used, the pain was extraordinary. First, Dr. Kenney had to penetrate and core out a section of my hip bone, which he did by literally using his own body weight as force. That pain felt like extreme pressure on my hip. After he removed an inch long cylinder of my hip, he had to extract some marrow. I was worried when he gave warning of the pain that was coming especially after the pain that had already occurred. He did not disappoint. The pain from the marrow extraction felt like my soul was being sucked/yanked out of my body. Thankfully it was over very quickly, and I left with just a bandage across the small of my back.
That same day I visited the Advanced Reproductive Center at the University of Colorado Medical Center. Rebecca and I decided to bank before treatment, because chemotherapy can cause infertility that can sometimes be permanent. I returned on the following Monday as well as recommended to increase the chances of future success. That was an awkward experience.
Two days later, on Wednesday, I had both a MUGA scan and my first PET scan. The MUGA (MUltiple Gated Acquisition scan) is a scan of the heart where the ejection fraction of the left ventricle is measured. The left ventricle is the major pumping chamber of the heart so the ejection fraction a basic measure of the overall health of the heart. The MUGA is performed because Adriamycin can be toxic to the heart muscle, and can lead to heart failure. I will likely get another MUGA now that treatment is over, to determine if any damage has been done to my heart. The PET scan was also performed prior to chemotherapy to use as a baseline comparison to the PET scan after treatment.
The next day, Thursday Sept 20 was my first day of chemotherapy. The first week of treatment includes Nitrogen Mustard, which is very caustic to veins. At this point, my port had not yet been implanted, so the chemotherapy had to be given intravenously through a standard catheter. My veins in my right arm hurt for several weeks as a result of this treatment.
The following Monday, I had the port implanted. This procedure was done in radiology so the doctor could see the tube placement during the procedure. Again, only local anesthesia was given, so I was able to talk to the doctor during the procedure. It was not too painful, even after the anesthesia wore off, and it was definitely worth it.
Sometime early in the chemo regimen, I am not too sure when, my cancer symptoms stopped. I had experienced most of the classic symptoms including night sweats, unexplained fevers, and weight loss. By the time my cancer symptoms ceased, I had lost 20 lbs, going from 155 lbs to 135 lbs. I did not notice this symptom until I went to the emergency room because I don’t normally weigh myself very often. I did not experience persistent itching or the most common symptom of a noticeable lump caused by an enlarged lymph node. Typically, this is found in the neck or armpits. I did have one unusual symptom of pain in my lower back.
This brings me to about the time that I started the blog with my first entry during week three of the treatment.
My first experience of cancer started in August of 2007 when I still lived in Texas. I did not realize it at the time, but I began feeling my first symptom of cancer. I had a strong pain in my lower back that was activated every time I was standing up straight. Due to the abdominal pain I frequently experience with Crohn’s Disease, I have learned to tolerate a good deal of pain without complaint. However, this new pain drove me to hunch over or sit down after just a few minutes of standing. Even though the location of the pain was nothing I’d experienced before, I shrugged this new pain off as a symptom of the Crohn’s flare-up that I coincidentally was experiencing at that time.
The back pain continued as I packed boxes in preparation of the move and even as moving day arrived and it was time to load the Penske truck. Rebecca could sense how much the pain was affecting me, and she lovingly packed and loaded considerably more than her share of boxes. This pain continued throughout the move.
The next cancer symptom that I experienced started the week after I had arrived in Colorado. I began having night sweats that occurred most nights. I mistakenly attributed that as a side effect of the Prednisone I was taking to combat the Crohn’s flare up. Prednisone had caused me to sweat at night before, so this was logical. But the back pain continued and Rebecca finally was able to convince me to go to the emergency room one Saturday. When we arrived, I told the nurses and doctors that I expected the pain was Crohn’s related. They ordered a lower-abdomen CT scan to be done, and gave me pain meds and steroids intravenously. The CT scan showed enlarged lymph nodes, which the ER doctor instructed can be a result of a Crohn’s flare-up. However, the radiologist noted in the report that lymphoma could not be discounted. This was the first time that the possibility of cancer was considered, but because the steroids and pain meds relieved my pain; I was released from the ER with an order to see my gastroenterologist on Monday. The radiologist also ordered that I have a lymph node biopsy performed on one of the lower-abdomen enlarged lymph nodes, which would require visual assistance with a CT scan.
I visited my gastroenterologist as ordered, and we discussed different treatment options because obviously my Crohn’s was not being controlled. The only immediate actions taken were an addition of Entocort to the oral medications I was already on, and scheduling the CT-biopsy. One suggestion was made that I increase the dosages of Remicade and Azathioprine. Ironically, these two drugs may have caused my cancer, or at least aided in its spread.
Finally, a few days later, I began running fevers. On the Friday before Labor Day I had a fever of 103.1 after running a fever of 102.5 the night before. Rebecca convinced me to go to the emergency room again. I was embarrassingly admitted to the ER with a diagnosis of “Fever” in a room next to heart attack and car accident patients. Again, I instructed the nurses and doctors that I was experiencing a Crohn’s flare-up and that I suspected the fever was a result of a blockage causing an infection. Because of my short time between ER visits, the ER doctors decided to admit me to the hospital, even after a second CT scan showed no blockages.
I stayed at the hospital for the Labor Day weekend with little more done than fever and pain management due to reduced hospital staffing. The second CT scan was of my entire abdomen and showed enlarged lymph nodes scattered throughout my abdomen, which stumped the gastroenterologists. Finally, on Tuesday, the staffing needed to perform a biopsy was in attendance. They chose to perform the biopsy on a lymph node in my neck, because it was more accessible. The original plan was to biopsy a lower abdomen lymph node before the full CT scan showed the other possibilities. The majority of the duration of the biopsy was prep using the ultrasound probe to determine the optimal path to avoid large blood vessels. Only local anesthesia was given for the prodecure, which was quick and relatively painless. A large needle was inserted into my neck under ultrasound guidance. After an audible click, which felt like a little pressure within my neck, the biopsy was taken. The doctor took five separate biopsies, which is standard procedure. I was released from the hospital right after the biopsy, with an appointment with my primary care physician that Friday to discuss the results of the biopsy. I was feeling better, because the intravenous steroids had cured my Crohn’s flare-up.
Two days later, on the evening of Thursday, Sept 6th my gastroenterologist called me with the biopsy results. He informed me that I had Hodgkin’s Lymphoma and that he and my primary care physician would refer me to an oncologist. The next day I met my primary care physician for the first time, and was referred to Dr. Kenney. I made an appointment with him for the following Thursday, when he spent over an hour with Rebecca and I explaining Hodgkin’s to us and answering our questions.
The next week was a blur as Dr. Kenney insisted upon beginning treatment as quickly as possible. The following day he performed a bone marrow biopsy right there in his office. I simply laid down on my stomach with my pants slightly down to reveal my hip, and gripped on the examining bed to endure the pain. Despite the local anesthesia that was used, the pain was extraordinary. First, Dr. Kenney had to penetrate and core out a section of my hip bone, which he did by literally using his own body weight as force. That pain felt like extreme pressure on my hip. After he removed an inch long cylinder of my hip, he had to extract some marrow. I was worried when he gave warning of the pain that was coming especially after the pain that had already occurred. He did not disappoint. The pain from the marrow extraction felt like my soul was being sucked/yanked out of my body. Thankfully it was over very quickly, and I left with just a bandage across the small of my back.
That same day I visited the Advanced Reproductive Center at the University of Colorado Medical Center. Rebecca and I decided to bank before treatment, because chemotherapy can cause infertility that can sometimes be permanent. I returned on the following Monday as well as recommended to increase the chances of future success. That was an awkward experience.
Two days later, on Wednesday, I had both a MUGA scan and my first PET scan. The MUGA (MUltiple Gated Acquisition scan) is a scan of the heart where the ejection fraction of the left ventricle is measured. The left ventricle is the major pumping chamber of the heart so the ejection fraction a basic measure of the overall health of the heart. The MUGA is performed because Adriamycin can be toxic to the heart muscle, and can lead to heart failure. I will likely get another MUGA now that treatment is over, to determine if any damage has been done to my heart. The PET scan was also performed prior to chemotherapy to use as a baseline comparison to the PET scan after treatment.
The next day, Thursday Sept 20 was my first day of chemotherapy. The first week of treatment includes Nitrogen Mustard, which is very caustic to veins. At this point, my port had not yet been implanted, so the chemotherapy had to be given intravenously through a standard catheter. My veins in my right arm hurt for several weeks as a result of this treatment.
The following Monday, I had the port implanted. This procedure was done in radiology so the doctor could see the tube placement during the procedure. Again, only local anesthesia was given, so I was able to talk to the doctor during the procedure. It was not too painful, even after the anesthesia wore off, and it was definitely worth it.
Sometime early in the chemo regimen, I am not too sure when, my cancer symptoms stopped. I had experienced most of the classic symptoms including night sweats, unexplained fevers, and weight loss. By the time my cancer symptoms ceased, I had lost 20 lbs, going from 155 lbs to 135 lbs. I did not notice this symptom until I went to the emergency room because I don’t normally weigh myself very often. I did not experience persistent itching or the most common symptom of a noticeable lump caused by an enlarged lymph node. Typically, this is found in the neck or armpits. I did have one unusual symptom of pain in my lower back.
This brings me to about the time that I started the blog with my first entry during week three of the treatment.
Thursday, December 6, 2007
Final Chemo
I thought it would be fitting to have a picture of my final chemo treatment to compare with the first. There are some obvious differences to put it mildly!
I’M DONE!!!
This week was another rough week in comparison to weeks of the past. I am very fatigued all the time, my voice is slightly stronger than a whisper, and my neuropathy is difficult to deal with. But on the bright side, today was my last day of chemo, which means all of those things will be gone soon. Neuropathy is likely to last the longest, but it has improved slightly from when it was at its worst. It hurts to walk still, but at least I am sleeping a little better. Before there was enough sudden twinges of pain that it took me a long time to fall asleep. In the end I think fatigue just beat out the neuropathy and I would fall asleep. Today, my oncologist omitted the Vincristine from my treatment because he does not want the neuropathy to get any worse. He also gave me a prescription that should relieve some of the pain.
If my voice does not improve in the next few weeks my oncologist is going to refer me to an ear/nose/throat specialist to perform an indirect laryngoscopy, which is a minor and not too uncomfortable procedure during which he/she pulls at your tongue a little bit, and uses a small mirror to inspect your larynx and vocal cords.
What happens now? I am not so sure of that myself, as everything will depend on tests. I am getting another CBC test next week to determine if I need another transfusion after the last chemo treatment. After that I will have my port removed. Finally, I will have another PET scan. My doctor has already said that he cannot imagine a scenario in which I would have a positive PET scan since my last one was negative. If for some reason it does come back positive, most likely it would be a false positive and I would then get a biopsy. Only a positive biopsy would indicate that the chemo did not completely eliminate the cancer. This is also true down the road to signal a relapse.
But, I am very confident based on the information my oncologist has given me that the worst is behind me, and I will hopefully never have to deal with Lymphoma again.
If my voice does not improve in the next few weeks my oncologist is going to refer me to an ear/nose/throat specialist to perform an indirect laryngoscopy, which is a minor and not too uncomfortable procedure during which he/she pulls at your tongue a little bit, and uses a small mirror to inspect your larynx and vocal cords.
What happens now? I am not so sure of that myself, as everything will depend on tests. I am getting another CBC test next week to determine if I need another transfusion after the last chemo treatment. After that I will have my port removed. Finally, I will have another PET scan. My doctor has already said that he cannot imagine a scenario in which I would have a positive PET scan since my last one was negative. If for some reason it does come back positive, most likely it would be a false positive and I would then get a biopsy. Only a positive biopsy would indicate that the chemo did not completely eliminate the cancer. This is also true down the road to signal a relapse.
But, I am very confident based on the information my oncologist has given me that the worst is behind me, and I will hopefully never have to deal with Lymphoma again.
Wednesday, November 28, 2007
Nearing the End
Today Rebecca and I met with my oncologist. First we addressed my increased neuropathy. He decided to completely omit Vinblastine from my chemotherapy this week. Next week I am scheduled to get Vincristine which also causes neuropathy, and we may or may not omit that as well. Vinblastine is the larger culprit of the two, so hopefully we will just omit that. Obviously if we omit the drug, I am not able to get the benefits associated with it. But my neuropathy has gotten pretty bad, and it is painful to walk toward the end of the day. My doctor does not want it to get any worse, especially since it may last for a year. On rare occasions, it is permanent. I hope omitting the Vinblastine today will reduce the neuropathy, because I am really dreading having this sensation in my feet for up to a year.
We also discussed my voice. Again there is no definitive explanation, but the worst possibilities have been eliminated. There is no indication of lung damage which is a possible side effect of Bleomycin. Thrush is another possibility but there is no indication of that either. It could still be allergies, acid reflux, a bacteria infection, or a viral infection. Either way, I am likely to be stuck with a hoarse voice for the remainder of my chemo regimen plus however long it takes to recover.
We also discussed radiation. An absolute definitive answer was not made, but my oncologist specifically stated that if it were he or a family member he would opt to not radiate. The expanse of my cancerous lymph nodes was such that they would need to radiate a large area. This would greatly increase my risk of secondary cancers later in life. At this point, although not absolutely certain, I would be shocked if I end up getting radiation therapy.
We also discussed removing my port. I can get it removed whenever I wish. Typically, it is not left in long term (anticipating the possibility of a relapse) because there is a risk of developing a blood clot, and a small chance of infection. I will likely get the port removed two weeks after my final chemo treatment (week of Dec 17th). That week I will get another CBC to see if I need another transfusion. If I need one, I would get it that week, and then get the port removed. After the transfusion there would be no need for the port unless I have a relapse.
Finally, we discussed my post PET scan. The date of the scan is not yet set, but it will likely be in January. If the scan is negative, which is expected because my last scan was negative, I would get scans every six months to check for a relapse. If the scan is positive, my doctor said it would likely be a false positive and a biopsy would follow. Only a positive biopsy would prove that cancer still exists. Again, this is not likely.
Today was obviously a big day, and I am down to eight days until my final chemo treatment.
We also discussed my voice. Again there is no definitive explanation, but the worst possibilities have been eliminated. There is no indication of lung damage which is a possible side effect of Bleomycin. Thrush is another possibility but there is no indication of that either. It could still be allergies, acid reflux, a bacteria infection, or a viral infection. Either way, I am likely to be stuck with a hoarse voice for the remainder of my chemo regimen plus however long it takes to recover.
We also discussed radiation. An absolute definitive answer was not made, but my oncologist specifically stated that if it were he or a family member he would opt to not radiate. The expanse of my cancerous lymph nodes was such that they would need to radiate a large area. This would greatly increase my risk of secondary cancers later in life. At this point, although not absolutely certain, I would be shocked if I end up getting radiation therapy.
We also discussed removing my port. I can get it removed whenever I wish. Typically, it is not left in long term (anticipating the possibility of a relapse) because there is a risk of developing a blood clot, and a small chance of infection. I will likely get the port removed two weeks after my final chemo treatment (week of Dec 17th). That week I will get another CBC to see if I need another transfusion. If I need one, I would get it that week, and then get the port removed. After the transfusion there would be no need for the port unless I have a relapse.
Finally, we discussed my post PET scan. The date of the scan is not yet set, but it will likely be in January. If the scan is negative, which is expected because my last scan was negative, I would get scans every six months to check for a relapse. If the scan is positive, my doctor said it would likely be a false positive and a biopsy would follow. Only a positive biopsy would prove that cancer still exists. Again, this is not likely.
Today was obviously a big day, and I am down to eight days until my final chemo treatment.
Monday, November 26, 2007
Tryptophan and Chemo, a Tiring Combination!
This weekend I was able to get a lot of rest, which was greatly appreciated. Nausea was not a problem, and I was able to eat way too much at Thanksgiving dinner. The tiredness you feel with the combination of tryptophan and chemo is a unique experience! My chemo treatment on Wednesday went smoothly without any major side effects. My only concern is that my neuropathy has progressed, and the numbness in my feet has gotten worse. My voice has also become more and more hoarse each day. In the past, my voice would recover over night and in the morning it would sound normal. This morning, the first words that I spoke were hoarse and weak. By the end of the day, it is difficult to understand what I say.
This week my oncologist will likely reduce my dosage of Vincristine and Vinblastine for the last two chemo treatments. These are the drugs that cause neuropathy. Almost all patients on these drugs experience neuropathy, and most have their dosages reduced during chemotherapy. The dosage reduction will not be significant enough to threaten the cancer killing effectiveness, especially after 10 weeks at full dosage.
My voice, on the other hand, will likely remain hoarse until after my body is no longer being poisoned. My oncologist could not definitively determine what is the cause, but he ran some tests to rule out any possibilities that would be detrimental. The worst-case scenario, which has been ruled out, was that the Bleomycin was damaging my lungs. The likely cause is a viral or bacterial infection causing a nasal drip, which has affected my vocal chords. Another possibility is acid reflux that is common for chemo patients. To combat these possibilities, I am taking a daily antibacterial and a daily antiviral prescription. I also take Prilosec OTC for acid reflux. All of these are just not enough to cure the problem because of my weakened immune system. Oh, well, it is a small price to pay to kill the cancer.
This week my oncologist will likely reduce my dosage of Vincristine and Vinblastine for the last two chemo treatments. These are the drugs that cause neuropathy. Almost all patients on these drugs experience neuropathy, and most have their dosages reduced during chemotherapy. The dosage reduction will not be significant enough to threaten the cancer killing effectiveness, especially after 10 weeks at full dosage.
My voice, on the other hand, will likely remain hoarse until after my body is no longer being poisoned. My oncologist could not definitively determine what is the cause, but he ran some tests to rule out any possibilities that would be detrimental. The worst-case scenario, which has been ruled out, was that the Bleomycin was damaging my lungs. The likely cause is a viral or bacterial infection causing a nasal drip, which has affected my vocal chords. Another possibility is acid reflux that is common for chemo patients. To combat these possibilities, I am taking a daily antibacterial and a daily antiviral prescription. I also take Prilosec OTC for acid reflux. All of these are just not enough to cure the problem because of my weakened immune system. Oh, well, it is a small price to pay to kill the cancer.
Monday, November 19, 2007
No more Mustard Gas
My last dosage of mustard gas (Nitrogen Mustard) was given on Thursday. This chemo drug has thus far been the worst for inducing nausea. So far I have made it through the weekend without needing any anti-nausea medication. Hopefully this will be the last exposure to mustard gas of my lifetime!
My red blood cell count is much improved after the transfusion, although I am still below normal. Instead of a hematocrit level of 22.4% of total red blood cells, I was up to 33.0. Normal is between 35 and 60. My overall red blood cell count was lower than normal, but again an improvement. I still don’t feel any substantial improvement in energy, but I know I am better off after the transfusion.
This week I get chemo one day early, to avoid the Thanksgiving Holiday. I am taking Wednesday, Thursday, and Friday off of work. A nice long weekend will be greatly appreciated. My body needs the extra rest.
My red blood cell count is much improved after the transfusion, although I am still below normal. Instead of a hematocrit level of 22.4% of total red blood cells, I was up to 33.0. Normal is between 35 and 60. My overall red blood cell count was lower than normal, but again an improvement. I still don’t feel any substantial improvement in energy, but I know I am better off after the transfusion.
This week I get chemo one day early, to avoid the Thanksgiving Holiday. I am taking Wednesday, Thursday, and Friday off of work. A nice long weekend will be greatly appreciated. My body needs the extra rest.
Tuesday, November 13, 2007
Disappointment, Hoarseness, and Numbness
I received an infusion of two units of red blood cells on Friday morning. The process took over 4 hours and afterward I decided to take the rest of the day off of work. I had high hopes that the infusion would give me some of the strength that I have been lacking the last few weeks. So far, I have only felt a slight improvement. It has been over 4 days now, so I expect if I were going to notice a large improvement, I would have by now. I probably was a little over optimistic expecting a large improvement.
On Thursday I start the last third of chemotherapy. I also have another appointment with my oncologist that morning. I will try to get an answer regarding the cause of my hoarse voice. I do not have a soar throat, and it does not hurt to talk, but it is frustrating because it is difficult to communicate. It is possible that the hoarseness is no major concern and may just be something that I will have to get used to. Another symptom that I have had to adjust to is neuropathy. Neuropathy is nerve damage, which commonly results in numbness. My neuropathy is slight in my fingers and is only in my fingertips but is a little more extensive in my feet. The numbness makes walking interesting. It is difficult to explain, but it is not painful, just a unique feeling that is similar to when your feet get really cold. Typing and handwriting also feels very different with very little feeling in the tips of my fingers. If the numbness spreads or gets worse, my oncologist may reduce the amount of Vincristine and Vinblastine that I receive each week. Usually neuropathy is temporary and the feeling returns after chemotherapy, but occasionally it is permanent.
On Thursday I start the last third of chemotherapy. I also have another appointment with my oncologist that morning. I will try to get an answer regarding the cause of my hoarse voice. I do not have a soar throat, and it does not hurt to talk, but it is frustrating because it is difficult to communicate. It is possible that the hoarseness is no major concern and may just be something that I will have to get used to. Another symptom that I have had to adjust to is neuropathy. Neuropathy is nerve damage, which commonly results in numbness. My neuropathy is slight in my fingers and is only in my fingertips but is a little more extensive in my feet. The numbness makes walking interesting. It is difficult to explain, but it is not painful, just a unique feeling that is similar to when your feet get really cold. Typing and handwriting also feels very different with very little feeling in the tips of my fingers. If the numbness spreads or gets worse, my oncologist may reduce the amount of Vincristine and Vinblastine that I receive each week. Usually neuropathy is temporary and the feeling returns after chemotherapy, but occasionally it is permanent.
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