I am on day +8 since receiving my stem cells. The first few days were tolerable, but now I am in the thick of it. I have asked Laraine to type this for me since my energy and general well being are pretty low. They have started me on a couple different antibiotics to stop some bacterial infections that started. I am on a regular schedule of anti-nausea medications, one of which makes me quite sleepy. I am now experiencing the worst of the worst when you think of a transplant situation. My days have a sort of "zombie like" feel to them. I have lost track of which day it is. At this point I can't keep any food down, so I am on a fluid IV and also a nutrition IV. This is all quite normal and to be expected. My white blood cell count is 0.02, so I have no immune system to speak of. Hopefully within the next few days that count will make its way back up and I will start to feel better.
Thank you for all of your visits and concerns. I so appreciate all the prayers and love that have been sent my way. I will keep you posted on how the next few days go.
5.28.2013
5.17.2013
An Update to Our Continuing Journey
It's been four
months since my last post. Obviously, I was not born to be a blogger.
Nevertheless, here's a quick update to what has happened since last
January.
The Velcade I began in November was effective at first but soon the cancer counts started to go back up. After a few weeks it was clear the Velcade was not working any more so Dr. Nibley decided to try a new drug approved last year by the FDA, which is a newer version of Velcade, one which does not cause neuropathy. I started on carfilzomib--trade name Kyprolis--around the middle of February until the end of March. Happily, the cancer counts started to go back down, although they had reached a very high level by the time we started on Kyprolis and had a long way to go to get down to safe levels.
At this point we arrived at a decision we had thought about for a long time. Feeling we needed a more aggressive approach, we switched our oncology care to Huntsman Cancer Institute and Dr. Maurizio Zangari, who specializes in multiple myeloma.
After initial testing, they immediately began the process for a second stem cell transplant. I had a central line surgically inserted in my chest on April 2nd and on April 3rd entered Huntsman Cancer Hospital for the initial "D-PACE" chemotherapy regimen. That's an acronym for five different chemicals, which I received intravenously around the clock for four days. I tolerated the treatment fairly well; the nausea was minimal but as expected I became physically weak and also neutropenic (no immune system).
After the D-PACE I had a couple of episodes in the ER and a night in ICU. I was having some heart arrhythmias and also had developed pericarditis, which is an inflammation of the sac that's around the heart. I also had a fever very briefly, but every fever has to be responded to. I was given a Holter monitor to wear for 30 days and was prescribed a daily baby aspirin. Because the aspirin works as a blood thinner, I had to maintain my platelets at a level of 50 or higher. So that meant I had to have transfusions of blood and platelets every few days for a while. I also had to be given IV antibiotics for a week for a possible infection.
After the D-PACE it took me a little longer than expected to "engraft" and start making my own white cells again. So Dr. Zangari gave me a couple extra weeks to get my levels back up and gain some strength before heading into the actual stem cell transplant procedure. He hadn't got a final report from the cardiologists about my heart, but based on preliminary data got an OK to proceed with the transplant.
Today is Friday, May 17th and I am in Huntsman Cancer Hospital once again. Yesterday I was admitted and received my first round of chemotherapy, which included Melphalan, Velcade, Dexamethasone and Thalidomide. I chewed on ice chips for 30 minutes before, during and 30 minutes after receiving the Melphalan, which is supposed to help decrease the mouth sores. It worked last time and hopefully will this time too. Today I receive only Dexamethasone and Thalidomide. So far I have had no nausea, but it will probably come in the next day or two. I am wearing a heart telemetry monitor, which I will probably wear through my whole stay here. Last night I had heart rate readings as high as 130 and as low as 40. Each time someone woke me to make sure I was OK, although there's not much they can do until after the transplant, when they might consider beta blockers or a pacemaker.
Well, this will be my home for about three and a half weeks. Huntsman usually does this as an outpatient procedure, but because of my heart and other issues I will be inpatient the whole time. Wish me luck! I will try to do a better job of keeping you updated.
The Velcade I began in November was effective at first but soon the cancer counts started to go back up. After a few weeks it was clear the Velcade was not working any more so Dr. Nibley decided to try a new drug approved last year by the FDA, which is a newer version of Velcade, one which does not cause neuropathy. I started on carfilzomib--trade name Kyprolis--around the middle of February until the end of March. Happily, the cancer counts started to go back down, although they had reached a very high level by the time we started on Kyprolis and had a long way to go to get down to safe levels.
At this point we arrived at a decision we had thought about for a long time. Feeling we needed a more aggressive approach, we switched our oncology care to Huntsman Cancer Institute and Dr. Maurizio Zangari, who specializes in multiple myeloma.
After initial testing, they immediately began the process for a second stem cell transplant. I had a central line surgically inserted in my chest on April 2nd and on April 3rd entered Huntsman Cancer Hospital for the initial "D-PACE" chemotherapy regimen. That's an acronym for five different chemicals, which I received intravenously around the clock for four days. I tolerated the treatment fairly well; the nausea was minimal but as expected I became physically weak and also neutropenic (no immune system).
After the D-PACE I had a couple of episodes in the ER and a night in ICU. I was having some heart arrhythmias and also had developed pericarditis, which is an inflammation of the sac that's around the heart. I also had a fever very briefly, but every fever has to be responded to. I was given a Holter monitor to wear for 30 days and was prescribed a daily baby aspirin. Because the aspirin works as a blood thinner, I had to maintain my platelets at a level of 50 or higher. So that meant I had to have transfusions of blood and platelets every few days for a while. I also had to be given IV antibiotics for a week for a possible infection.
After the D-PACE it took me a little longer than expected to "engraft" and start making my own white cells again. So Dr. Zangari gave me a couple extra weeks to get my levels back up and gain some strength before heading into the actual stem cell transplant procedure. He hadn't got a final report from the cardiologists about my heart, but based on preliminary data got an OK to proceed with the transplant.
Today is Friday, May 17th and I am in Huntsman Cancer Hospital once again. Yesterday I was admitted and received my first round of chemotherapy, which included Melphalan, Velcade, Dexamethasone and Thalidomide. I chewed on ice chips for 30 minutes before, during and 30 minutes after receiving the Melphalan, which is supposed to help decrease the mouth sores. It worked last time and hopefully will this time too. Today I receive only Dexamethasone and Thalidomide. So far I have had no nausea, but it will probably come in the next day or two. I am wearing a heart telemetry monitor, which I will probably wear through my whole stay here. Last night I had heart rate readings as high as 130 and as low as 40. Each time someone woke me to make sure I was OK, although there's not much they can do until after the transplant, when they might consider beta blockers or a pacemaker.
Well, this will be my home for about three and a half weeks. Huntsman usually does this as an outpatient procedure, but because of my heart and other issues I will be inpatient the whole time. Wish me luck! I will try to do a better job of keeping you updated.
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