I am writing at the end of May. This was not a good month for me. What I thought was going to be an easy journey of treatments, took a bad turn during the second week of May. My energy level had always been low, but now just walking up stairs put me out of breath. I had to sit down to just dry my hair, put on my makeup (which got less and less) and taking a shower was exhausting. The doctor had now put me on the "miracle drug" Revlimid, which cost a fortune. I played poor and got a grant to cover the cost at least short term. Then I would find something else until my drug coverage had gotten to the threshold where they pay everything. It is amazing to me how many programs are out there if you do your research and look for financial support. You could run a business just on finding and helping people pay for medical costs through grant programs, etc. The good news was that my numbers were all beginning to come up, not gradually, but as the doctor said, in great increases, to her amazement (and my delight). Although she attributed to the Revlimid, it may just have been the whole combination. But I wasn't feeling too great. The pain in my ribs started to increase, so the doctor gave me percoset for the pain, which only made me sleepy all day. She changed it to Oxycontin time release, which lasted 12 hours and helped somewhat, but then my joints started to become very painful and stiff. Thinking it was the arthritis flaring up, it got worse and worse to the point I could hardly move without pain. At the same time, on a visit to the doctor, I just didn't feel right, very weak and a little unsteady on my feet, she took my blood pressure to find it was very low (for you BP people 78/40). And she found a rash on my back and stomach. So I had to stay for two hours while they infused a liter of fluid to bring my BP up to at least 90 before they would let me drive home. She also gave me benedryl and told me to watch the rash. The pain in my joints got worse and the rash turned to welts all over, arms, legs, stomach, back. And I felt really tired.
As a side note, one of the things I need to worry about is my white blood count is low and therefore, I am very susceptible to infections, and should stay away from sick people. (now I'm a bubble child!)
Over the next few days, I barely moved from the couch, to the point I had to call the doctor and say, something is really wrong here. We figured out that one of the medications she had taken me off of for the arthritis was the reason, so she prescribed strong doses of Prednisone and changed my Oxycontin to Vicoden, thinking the rash was from the "codone". Well the joints got better and the pain began to subside, but the rash got worse, now traveling up my neck. We are now at Memorial Day weekend and of course the office is closed, so I made a personal decision to stop taking the Revlimid. It was now the only drug, other than Prednisone, that I was taking. So it must be the "miracle drug" that I was allergic to. And I was right, over the next few days, the rash/welts started to disappear, my energy began to rise and my blood pressure was going back to normal.
On Tuesday I called the doctor and she agreed I did the right thing. She now wanted me to see an allergist to be tested. And so I am off to see another doctor who confirmed I was probably sensitive to the Revlimid. My choices were to stay on the Revlimid and they would treat the reaction with high doses of benedryl and steroids or not take the drug. The former was not appealing at all and I feared not being able to take the Revlimid which everyone said was the best fighter of Myeloma today.
One thing I forgot to mention is that there is a very strict regimen for drug therapy with Myeloma that has been proven to be successful. Dana Farber Hospital in Boston is the leader in research and trials on drugs with Myeloma and they have established this process. The Bennett Cancer Center works closely with them and has adopted all of their protocols. Therefore, you do two weeks on chemo drugs and one week off. The chemo is a combination of pills and IV fed vial, twice a week. So over a two week period, I get four treatments and then one week off. In the beginning, I felt great on the treatment days and then a couple of days after, then the energy and pain would slowly come back until the next treatment day. The week off was tough, but as time went by, this became less and less apparent. (of course, until the May episode). Now the doctor has decided to change the regimen and take me off the Revlimid, but keep me on the other two drugs twice weekly for a 6 week period. So we will see how this new drug therapy works.
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