In His Own Words (more or less) - chapters 2 and 3

Chapter 3 (February 14, 2007)

Hi guys:

I just came back from the oncologist. . . He is reluctant to start me on any chemotherapy BECAUSE I'M SO STABLE RIGHT NOW and he's concerned about . . . the side effects . My platelet count is still low (38) and getting lower. I'll be getting another test tomorrow, and if it drops to about 30, I'll be starting on a short course of steroids to boost them up.

The pain in my hip has been diagnosed as spinal osteoarthritis. Besides seeing a physical therapist, I'm also seeing an acupuncturist and a chiropractor. The chiropractor says that with exercises and spinal manipulation, I should be close to normal in 6 to 8 weeks. I've already begun to feel better with doing
the exercises.

Chapter Two (January 17, 2007)

I saw my hematologist/oncologist today. Again, everything is stable. Two test results have still not come back regarding gene's & chromosomes which would allow me to be treated with a drug called Gleevac. The one
result that did come back was negative.

I'm having alot of problems with pain from gout and arthritis which impinges on my quality of life. The last 2 nights I've had to sleep on a chair because it hurts too much to get out of bed. It's my hand again as well as my hips. I got a decent explanation of what happens with my leukemia that causes these problems. I've been restarted on steroid therapy.

Tomorrow I start my accupuncture treatments, and my oncologist has referred me to a rheumatologist to get my gout attacks under control. I see him next week This guy has also studied chinese medicine, so I may
be able to to discuss the herbs I'm taking with him.

There's also an MD I know where I work at the Native American Health Clinic who specializes in herbs and such. He inadvertantly found out of my diagnosis and I plan to talk to him also.

This month between doctors visits, labs, etc I will have gone to Kaiser 13 times. There are appartments across the street. Maybe I should rent one.

I also have an appointment in March at UCSF with my doc there, who is helping direct my doc at Kaiser as to what to do. This guy is a researcher as well as a clinician and offers me my best hope if things begin to deteriorate in the future. He's had me send some blood to Stanford (another lab visit) so that they can type me in the event I need a mini cell stem transplant in the future.

January 2007

Matt continues to suffer from painful and all too prevalent gout attacks. The stats on the Leukemia have remained fairly steady. An appointment with Dr. Anderson, Matt's oncologist, is scheduled for next week. Matt will is also scheduled for acupunture treatments to deal with pain in his hips.

In His Own Words

Here is an excerpt from something Matt wrote in response to birthday greetings he received on another site:

After the initial shock of my diagnosis and all the poor me's I could
muster, I've settled down with a real positive attitude. All my blood
values have been fairly constant these last 3 months. I'm off all
chemotherapy right now, and have been working with a clinical
nutritionist to help strengthen my immune system so that my body can
fight the disease. Any of you guys ever have wheatgrass juice? It's an
experience. I'm also going to UCSF to explore the possibility of a
mini-cell stem transplant. This is an experimental proceedure which
has the possibility of curing me, but could also kill me. The more
knowlege I have, the more power I have to help control my own fate.

Settling Into Appropriate Treatments

Matt made a graph of the various components of the blood tests he's taken since his diagnosis and a year earlier when he had the disease but was unaware of it. As a whole, these various components have fluctuated within a range that has remained relatively stable. Where there has been instability, particularly with regard to his fluctuating platelet levels, the primary cause may not be leukemia. He may have a condition the oncologist called ideopathic thrombocitapenia. This "is a condition of reduced platelet count arising by . . . excessive platelet consumption after their release into the circulation."

The oncologist, Dr. Anderson, has advised Matt to continue with the periodic Dexamethazone treatment to keep up his platelet level. Dr. A. recommended that Matt go back to taking Colchicine for his gout. Additionally, Matt continues to consult with the nutritionist regarding appropriate diet and cancer fighting herbs.

Dr. Anderson said that leukemia and ideopathic thrombocitapenia are rarely found together. He has not seen it in his practice. He discussed this with Dr. Lake, the more experienced oncolgist whom we consulted a number of weeks ago. Dr. A. said that Dr. L reported that he hadn't seen it in his practice either. Dr. A. reiterated that Matt's condition CMML is a relatively new subcatagory with much individual variation among the people diagonosed with it. He said that it would be quite possible for Matt to live another five or ten years. That is what I choose to believe, five or ten years, and I would add "or more."

Exploring Options

Matt's weekly blood test revealed that his platelet level is higher, in the 80's. Unfortunately, the number of cancer cells has also increased slightly. He's been talking to a nutritionist about dietary changes that might slow down the progress of the disease. Her advice thus far is to choose organic produce and to limit the amount of sugar he consumes. Also to discontinue using products with artificial sweeteners in them. He is also exploring the possibility of getting a mini stem cell transplant, a procedure that he tells me has been curative to about 60% of the people who have undergone it. He describes the procedure as the only real cure about which he is aware. He is anxious to be pro-active with this horrid disease and continues to be in touch with his feelings while maintaining a generally more positive attitude.

Sloan Kettering and Beyond

The short version:

Matt’s platelet level has been low and the docs and us are trying to figure out why. Matt’s been in a better mood these last few weeks.

The long version:

Sloan Kettering is currently rated as the top cancer treatment facility in the country and possibly the world. Matt's appointment there was scheduled for 2 p.m. on Tuesday, October 7. We registered mid-morning and also went up to the doctor’s office to let the staff know we had done so. I should mention that the doctor we were scheduled to see, Dr. Nimer, is the head of the hematology department at SK. When we returned for the appointment, Matt was told to go into a room for a blood test. We were ushered into an examining room 20 or 30 minutes after that. A visiting physician from Italy, accompanied by an intern, interviewed Matt and gave him a brief physical exam. Fifteen or twenty minutes after that, Dr. Nimer came with the other two docs, talked with Matt, and made his recommendations. He allowed ample time for Matt and me to ask questions.

On our way out, Matt asked the receptionist for a copy of the lab results. He noticed that his platelet level had gone down to 27, significantly lower than at any time since his diagnosis. His initial platelet level had been around 67 and the most recent California lab test had shown a platelet level of 138.

During the consultation, Dr. Nimer had said that Matt's lab tests showed that the Hydrea he'd been taking was working. He'd also commented that this was unusual since this drug often causes the platelet level to go down. With the revelation of a platelet level of 27, Matt and I obviously had major questions. Matt spoke to Dr. Nimer's nurse. She told him that Dr. N would look at the test results and get back to him. About an hour later, someone from Dr. N's office called and told Matt that he should go to Urgent Care the following day to get a transfusion. Flying with a platelet level below 50 is dangerous, he was told.

Sooooooo, we returned the next day with many questions, one of which was: Did Dr. N even look at the lab test that HE has ordered? And, if not, how valid were the recommendations that he had made at the previous day? Dr. N was not scheduled to come in, his nurse told us, but she would call him. Meanwhile, it was important that Matt get the transfusion done.

The process of getting the transfusion going involved a number of steps and a bit of a wait. At one point, we were told that we could go the hospital cafeteria. As we returned from lunch, we ran into Dr. N. He'd returned to the hospital and was looking for Matt. We sat in the corner of a waiting room and discussed the situation with him. The SK test results weren't available before yesterday's appointment, Dr. N told us. The SK test results changed everything. As the 3 of us talked, Dr. N. came to the conclusion that Matt's higher platelet level was probably due to his taking Prednisone for his gout. The lower platelet level was due to both the Hydrea and Matt's discontinuing the Prednisone after he'd completed the course of treatment. Dr. N told us his revised recommendations and that he'd be in touch with Matt's California oncologist. He also gave us his personal cell phone number.

Unfortunately Dr. N. was unable to call Dr. Anderson, Matt's regular hematologist/oncologist before his appointment on Monday, October 23. Matt had mistakenly given him the wrong number. The doctors were apparently playing phone tag on Tuesday when Matt saw another h/o in the Kaisar system. Dr. Anderson had set up this consultation with Dr. Lake because of his more lengthy experience dealing with the disease.

Both Kaisar doctors advocate an approach that is basically "wait and see," weekly blood tests with no pharmacological treatment. They point out that Matt is currently symptom free and that there is no treatment for his type of leukemia (CMML). Dr. Lake said that the Hydrea Matt has been taking can show "cosmetic" improvement, i.e. more normal red and white blood cell levels, but that it doesn't really affect the disease itself. The biggest issue right now is the low level of Matt's platelets. This could be caused by the Hydrea, by the leukemia, or by an unrelated process by which Matt's body is destroying its own platelets. Matt sees a correlation between his platelet levels and his use of Prednisone for his gout. Both Kaisar doctors discount this, but have agreed to Matt's request to see if Dexamethasone elevates his platelet level. Dex is a steroid and is similar, but stronger, than Prednisone. As it stands now, Matt embarked on a four day Dex treatment, using huge doses of the drug, today. He's not taking the Hydrea, but would like to use it in smaller doses than he'd been taking it once his platelet level has risen. He's also taking some cancer fighting herbs, something Dr. Nimer had discouraged. Interestingly, Dr. Lake told us that he thought the platelet transfusion was unnecessary. He said that the actual platelets in a patient with a low platelet level are individually more powerful because they are younger. I wonder about this even though Dr. Lake seemed highly competent to me.

I'm writing this on Friday, October 27. Matt had another blood test this morning. His platelet level had fallen to 32. (He's able to get the result on line.) Last Friday, the platelet level was 47. It will be interesting to see the result of next Friday's test.

A word about Matt's mood: He seems more upbeat and optimistic than he'd been in the early weeks after his diagnosis. Also happier. He's been experiencing some back pain and some pain in his wrist. Nothing agonizing, like the gout. That helps. Also the beautiful California weather that we've been experiencing. Tomorrow we'll go together to the farmer's market and then to Costco and Trader Joes. We may see a movie on Sunday. Small pleasures. During our consultation with Dr. Lake, I asked if he could check back over past lab tests. A quick check of Matt's records, stored on some Kaisar computer file, revealed that there were some signs of his having the disease as early as 2003. The level of the cancer cells a year ago was about the same as it is right now. To me this suggests that the cancer is proceeding slowly. On the other hand, it might also suggest that Matt is further along in the disease process than we'd thought. On one hand, I look at how Matt was able to enjoy his life in the ignorance of what his body was doing. Since there is currently no cure for the disease, Matt has paid no penalty for this prior ignorance. On the other hand, is there value in the knowing?

Sept. 27 Blood Test Results

The results of Matt's Sept. 27 blood test are ambiguous. His white blood cell level is up (bad) , but his platelet level is also up (good). The oncologist told him to get another blood test today to see the effect of a new medicine (hyroxyurea) that he's started taking for his gout.