Recovery and Fundraising

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

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.

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!

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!