The Journey Begins

November 2007. The diagnosis is lymphoma. Oh my god! Now what? Just retired from my working career and now looking squarely at the end of the journey, interrupted and in mid sentence. I have set this blog up to keep my friends and family updated with the moments, months and years (god willing) of this, my most challenging journey. Please support me with your wisdom, insights, experiences and maybe some jokes for levity.



For about 2 years a innocuous looking lump grew under the skin on my right forearm. It started out the size of pimple and became larger that a nickel by summer 07. A biopsy showed that this was some form of lymphoma. Alarms and bells. Off to see the onc (Oncologist). Tests. Complete blood, bone marrow sample (some have said this test is awful, not so for me, it was a breeze) and CT scan. On November 2nd the lump was removed surgically along with a lymph node from my groin. These samples were sent for lab testing and diagnosis. The results were anaplastic large t cell lymphoma (ALCL), CD30+ and ALK-1 negative. This is a rare lymphoma that is diagnosed (the best I can tell) in only a few hundred people in a year. I have been searching for months now and have only found a handful with it. I must admit that it was hard for me to believe. I felt great, my blood work was normal, the bone marrow test was normal and I had no symptoms of this often fatal disease. However, after a visit to Stanford and after they reviewed all the samples and confirmed the diagnosis I had to accept it.



The question was what to do now? Here is where it gets dicey. Stanford recommended treatment and in my opinion never changed or wavered from that. Stanford offered my enrollment in one of two clinical trials that they were running. My Kaiser onc, on the other hand, said lets take another CT scan and see what is going on now, as it was now early January and 2 months had passed since the initial scan. This scan confirmed that there was little activity or growth. I admit I was scared about the idea of being treated, by now I had read too much about chemo therapy and I did not like what I read. My Kaiser onc suggested that it would be OK to Watch and Wait since the lymphoma was not growing. In fact this is a recognized strategy, just not usually seen in ALCL since this is normally aggressive. So we decided to give it a couple of months and see.

In March I had another round of blood tests and a CT scan. Again these showed that there was small growth on one lymph node and no growth on others or in fact they could no longer be seen at all. More watch and wait. In hindsight I should have been more concerned about the one node that did show some growth. I believe I was a willing partner in self deception.

I decided at this point to get on with my life. Planning a trip to Yosemite and Hawaii. Heck I felt great. I was eating well, I was exercising a lot, I was skiing and hiking and felt as good as I had in years.

In the mean time I was also studying everything I could and reading books and articles about the latest in lymphoma research and treatment options and clinical trials results for new drugs. I was talking to doctors, emailing with researchers and in May I went to the American Society of Clinical Oncologists annual meeting in Chicago. I felt like I knew what I was doing and that I was better able to help myself this way. I went on a couple of different regimens of supplements for a couple of months at a time, trying to see if I essentially could cure myself. The mind is a powerful tool and I was convinced my own knowledge was power.

To make a long story shorter all this changed the weekend of June 7th. I went for a hike on that Saturday at Echo Summit to help prepare for the Yosemite hiking trip that was coming up. By that night the area under my left arm where I had been tracking the only lymph node I could actually feel suddenly exploded and swelled up and became painful. By Monday I could barely lower my arm to my side.

I immediately set an appointment with the onc for Tuesday. He looked at it and wanted to remove it now. The surgeon looked at it on Thursday and said no it had to be shrunk before that could be done. A Pet/CT scan followed on Saturday and a follow up bone marrow test on Monday along with a heart function test needed before you can start chemo therapy to see how strong your heart is. The Pet/CT scan results viewed on that Monday were frightening, there was evidence of activity in several new places. Chemo was needed and needed immediately. So on Monday 6/16 I was admitted to the hospital for an overnight stay so that chemo therapy could be administered.

I was given the standard of chemo that has been the same for the past 25 years. It is called CHOP and consists of (3) poisons administered by IV and Prednisone that is administered orally in a high dose for 5 days. Some of the poisons are so toxic that the nurse has to wear protective clothing in case any spills or splashes on them. If it leaks outside of your vein it can cause permanent tissue damage.

The good news is that I tolerated the first round reasonably well and the visible tumor under my left arm has shrunk dramatically in the past 2 weeks. It is still there but much smaller than two weeks ago. I experienced only very mild nausea (thanks to mitigating medication) and was even able to go to the gym the first week and have been walking almost every day. The biggest effect is the hard fall from Prednisone. After 5 days you are pretty much slammed to earth with fatigue and depression for (in my case) 2 days. Since then I have recovered steadily each day with more strength and stamina. So that after 2 weeks I pretty much feel normal. There are other potential side effects of the chemo which I have not experienced (this may change after subsequent rounds of treatment). I still have my hair.

After the initial panic subsided and Carol and I had a heart to heart talk with my onc we decided that I will enroll in a clinical trial at Stanford. I am going to visit the doctor there tomorrow and complete the enrollment. This will mean that I will be receiving the standard chemo therapy along with an investigational drug that has a newer mechanism of action. It has been demonstrated to help to block the growth of new blood vessels to the tumor, thereby helping to deny the tumor oxygen and helping to kill it. There are potential side effects of this also, so we will have to wait and see how I react to it. There is no free lunch with any of this. I will be receiving 6-8 rounds of treatment every 3 weeks at Stanford. Next treatment will be on or about 7/7/08.

Longer term, assuming I achieve a complete remission, I am probably going to proceed into an autologous stem cell transplant. This is a technique where your own stem cells are harvested and filtered. You are given additional high doses of chemo therapy to hopefully kill any remaining lymphoma cells in your body and then your own stem cells are reintroduced to rebuild your immune system. The results of this are still controversial however the research I have done suggests it will likely improve my long term survival.

I will conclude this first post at this time. I will keep updating this as new chapters are lived. Please make an entry to let me know you were here. It does mean a great deal to me to be able to share this journey with the friends and family I love.

Thank you,

Richard