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.