Most of this year, I have been just holding off on checkup visits and none of my doctors called or contacted me about any maintenance therapy -- except for my guru of pain control, Dr. Isi.
So as my pain began returning, I got a sneaking suspicion that the only news would be the bad kind, so I tried to see how long I could hold out. That didn't go too well and it pulled me down into a really nasty cycle of frustration and sadness. Looking back, I can say my mood started turning negative right at the beginning of July. Then I started really getting upset for most of August. I kept telling myself that I didn't really have any desire to know anything about whatever was going on that was causing my pain to start getting worse again. It just seemed like a dumb question to ask. I figured I knew what was causing the pain without asking. So I didn't.
It took me until the beginning of September to make the phone calls so I could get some blood/urinalysis work; followed by an MRI and eventually a PET scan.
My oncologist prescribed Revlimid/Dexamethasone right at my first visit for lab works. That was not a bad guess, and the lab results DID show a trend upward in microglobulin beta indicator (back up to 2.15, but lower than the 2.37 I'd had prior to my surgery in August 2010). But when his office called and invited me to come and get the Revlimid (Celgene has committed to a very high level of material control since Revlamid is lenalidomide - a daughter drug of thalidomide, responsible for horrifying birth defects), I postponed -- not because of side effect risks. I postponed because there was NOT ENOUGH rationale to select THIS drug.
Based on my earlier treatments, I have been rewarded when asking for proper lab works to provide a better set of data for analysis / diagnosis. Rewards for me mean (a) proof of what needs treating; (b) baseline data for later comparison subsequent to treatment; (c) sense that I am not being 'practiced upon' -- rather that my treatment is as close to the proper use of a therapy as we can get based on my actual need.
So I insisted on a prescription and reading of an MRI. That was the first negative lab result. The radiologist's findings came back WITHOUT a robust/strong indication of renewed activity in the tumor at the base of my spine. So possibly that tumor had become more active without changing in appearance. It could also possibly mean that the tumor in my sacrum was no longer alone.
The only way I could get an overview of where else the myeloma could be active would be through a PET scan. Have you ever seen one? They're cool. See; about 60% of myeloma likes sugar. Mine does. So if I hold off on eating for a few hours, then get an injection of glucose (fancy sugar syrup for my blood stream) laced with radioisotopes, after just 45 minutes, the radioisotopes will be vacuumed up along with the sugar straight into the ravenously sugar addicted myeloma cells. Then I go and lie down inside a huge white cone that can sense the sprays of energy coming out of the radioisotopes. After a while enough of the rays will have been captured to create a picture. When you look at it after the software has pulled it together into an recognizable image, it looks like a faint outline of my body with gatherings of stars where the radioisotopes are collected and spraying out their tiny energy rays. Brighter clusters show higher glucose uptake. My new picture shows 5 new clusters of myeloma. They're called "lytic lesions" bone tumors for short -- two in my spine, one on the tip of my left shoulder blade, one in a rib right in front of my heart and then one behind my right lung in a rib. The one in my sacrum is all hyped up too.
Suddenly the Revlamid/Dexamethasone prescription was clearly not what is needed. There's just too much going on and it will take more than that to get it back under control. Dr S and I talked it over and we agreed I needed to work with a team that was going to be able to handle the complete range of treatment options -- whether I would try clinical trials or transplants again. So I took myself on a tour to visit the three big hemotology oncology centers: Memorial Sloan Kettering (Basking Ridge, New Jersey), John Theurer Cancer Center (the new name for where I did my double transplant in 2006) and the Cancer Institute of New Jersey/Robert Wood Johnson Medical Center (New Brunswick, NJ).
Since my lab works were fresh, and my symptoms (deep bone pain, fatigue and depression) were significant, it didn't take long for me to get appointments even with these hard-to-schedule Wonder Docs.
My next post will give the details of what I got out of those interviews. Meanwhile, I'd like to pass along a few pointers from a guest blogger David Haas who has some information on Physical Fitness for Cancer Patients. He has an excellent blog and offered to help me out with some key information. Please take a look and then check out his other articles too.
- that's all for now, MjK
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