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.

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.

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.

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!

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.