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!!

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.

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.

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.

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.

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.

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.