Today, Thursday, June 19, 2014, was the fourth day of the second round of Vidaza treatments. Todd has surprisingly responded much better this time around. He has had less nausea and has been able to eat much more than last time. While he is still experiencing digestion and stomach cramp issues, it is more tolerable than the nausea.
One last treatment tomorrow (Friday), then two days off, with new blood work and treatment resuming again on Monday, June 23, and ending on Tuesday, June 24, 2014.
We can do this!
Thursday, June 19, 2014
2nd Round starts with bad news
Well we went in for the first treatment of the second round of Vidaza on Monday June 16, 2014 feeling pretty relaxed, only to be hit with disappointing blood test results.
Before beginning treatment they take his blood to check his white, red, platelets, ANCs, among other things. We waited for the treatment to start for some time until Todd's nurse came over and told us that Todd's blood counts were very low and she was waiting for his local oncologist to review the blood work results and make a decision whether to proceed with treatment today. The concern was that blood counts typically drop the first week of treatment. If they are already very low to start with, they are very likely to go even lower, maybe dangerously lower. The doctor needed to evaluate this risk first.
We were in shock. We were still riding the high from the news of his elevated platelets.
We quickly learned that the platelets had already started to drop before treatment because on his last appointment his local oncologist was looking at his results from the prior week without waiting to see that day's result before the consultation. In reality, his platelets had already dropped from their all-time high of 136,000 on June 2, 2014 to 85,000 on June 10, 2014. While this number was still good, it showed a quick decline.
So, on the day he started this round, his platelets had dropped to 75,000, but this was not as bad as his white blood count that had dropped from a 3.5 on June 2 to 2.0 and his Absolute Neutrophils (ANCs) had gone from 2.4 on June 2 to 1.1 on June 10 to .4 on the first day of this treatment, June 16, 2014. All his numbers had dropped below the normal range lows according to this day's results.
He was in disbelief. He questioned the results and I reassured him that there was no manipulating blood counts. We both quickly realized that the Vidaza's positive results were short lived. I began to cry realizing that the Vidaza was not likely to keep him a state of "remission" for long. The need for the transplant was still there if not more so. I think that fact became a true realization at that point: the transplant was inevitable.
While sitting there, Todd looked at his messages from his transplant doctor at the Cleveland Clinic. The cytogenics results were back confirming the same chromosomal abnormalities and deletions. It was her desire to continue the Vidaza for at total of 4 rounds. I said he would likely be ready for the transplant after numerous rounds of feeling bad from the Vidaza and knowing the results would be short lived.
The nurse returned with the green light from the doctor to begin treatment. While the doctor was concerned that his blood counts were very low, he wanted to continue treatment with the hope that eventually the Vidaza would begin working and would bring his numbers up quickly after the initial first-week dip. She began with his pre-treatment medication of the Aloxi (which he will get every other day for nausea) and then began the 30 minute treatment of Vidaza.
Blood work will be repeated next Monday.
So, on the day he started this round, his platelets had dropped to 75,000, but this was not as bad as his white blood count that had dropped from a 3.5 on June 2 to 2.0 and his Absolute Neutrophils (ANCs) had gone from 2.4 on June 2 to 1.1 on June 10 to .4 on the first day of this treatment, June 16, 2014. All his numbers had dropped below the normal range lows according to this day's results.
He was in disbelief. He questioned the results and I reassured him that there was no manipulating blood counts. We both quickly realized that the Vidaza's positive results were short lived. I began to cry realizing that the Vidaza was not likely to keep him a state of "remission" for long. The need for the transplant was still there if not more so. I think that fact became a true realization at that point: the transplant was inevitable.
While sitting there, Todd looked at his messages from his transplant doctor at the Cleveland Clinic. The cytogenics results were back confirming the same chromosomal abnormalities and deletions. It was her desire to continue the Vidaza for at total of 4 rounds. I said he would likely be ready for the transplant after numerous rounds of feeling bad from the Vidaza and knowing the results would be short lived.
The nurse returned with the green light from the doctor to begin treatment. While the doctor was concerned that his blood counts were very low, he wanted to continue treatment with the hope that eventually the Vidaza would begin working and would bring his numbers up quickly after the initial first-week dip. She began with his pre-treatment medication of the Aloxi (which he will get every other day for nausea) and then began the 30 minute treatment of Vidaza.
Blood work will be repeated next Monday.
Tuesday, June 10, 2014
Appointment with New Oncologist: Vidaza follow-up
Todd met with the new local oncologist on Tuesday, June 10, 2014. He was so pleased! The oncologist's bedside manor made it easy for Todd to discuss his medical condition, current and future treatment.
First, Todd had his blood work done, which showed another all-time high platelet count of 136,000 which is completely in the normal range. His other CBC counts were about the same but stable.
The local oncologist reassured Todd that fatality rates for allogenic bone marrow transplants with a donor that is a perfect match/family member are less than 10% versus the higher 20-30% mortality rates were we told initially. Those rates were too high and made made us uncomfortable doing the transplant any sooner than absolutely necessary.
The opinion of this oncologist is that Todd is in "remission" right now with the Vidaza treatment. He will gladly work with Todd's doctors at The Cleveland Clinic to administer the additional rounds of Vidaza however they prescribe it. He is also willing to work with Todd during and after transplantation.
We want to thank our friend Bud Mays who recommended him to us. We feel very grateful for this doctor.
First, Todd had his blood work done, which showed another all-time high platelet count of 136,000 which is completely in the normal range. His other CBC counts were about the same but stable.
The local oncologist reassured Todd that fatality rates for allogenic bone marrow transplants with a donor that is a perfect match/family member are less than 10% versus the higher 20-30% mortality rates were we told initially. Those rates were too high and made made us uncomfortable doing the transplant any sooner than absolutely necessary.
The opinion of this oncologist is that Todd is in "remission" right now with the Vidaza treatment. He will gladly work with Todd's doctors at The Cleveland Clinic to administer the additional rounds of Vidaza however they prescribe it. He is also willing to work with Todd during and after transplantation.
We want to thank our friend Bud Mays who recommended him to us. We feel very grateful for this doctor.
So, where do we stand? A second round of Vidaza starts Monday. Todd is going to do the same 5+2 day outpatient treatment. They discussed why this local group of doctors only schedule 5 days of treatment instead of the prescribed 7 days.
He stated that 7 days were not well tolerated by most patients because by waiting over the weekend to do the additional 2 days on the following Monfay and Tuesday makes it like having the treatment for 9 days (since the chemo is still in the patient's system over the weekend). But he is willing to do whatever his transplant doctor prescribes.
Todd's MDS is still there even though the word "remission" was used. It's not going away permanently. There is a good chance it will stop responding to Vidaza at some point. In addition, it is tough going through the treatment every 28 days. The only long-term cure is the bone marrow transplant.
The new local oncologist called these pre-transplant treatments of Vidaza "pre-loading" or getting the body in the best condition (lowering blast counts) to help insure a successful bone marrow transplant.
Todd is well rested from vacation. We will enjoy celebrating Father's Day tomorrow and be ready for the first dose of the second round of Vidaza on Monday, June 16, 2014.
Tuesday, June 3, 2014
The Vidaza is Working!
Two positive results are giving us great feedback from Todd's first round of Vidaza. First, he had bloodwork done this week, showing his platelets had bounced back from an all-time low of 16,000 the week after the chemo treatment to a record high of 79,000 three weeks after treatment.
Second, we got the bone marrow biopsy results back today showing an unbelievable result of a 0% blast cell count! Cytogenetic testing results were not back yet but it is obvious that these results are showing us that the Vidaza is working.
While this is great news it doesn't mean he is cured or anything like that. It changes his risk assessment and treatment options. At this time, the
Bone marrow transplant is still the only "curative" treatment. However, the Vidaza is halting the progression of his MDS for now.
So we do we go from here? Well for starters we meet with the new local oncologist on Tuesday, June 10, 2014. Then he will begin a second round of Vidaza that next Monday, June 16, 2014.
Why another round? Well usually 3-4 rounds are the "prescribed and preferred" method of treatment with Vidaza. Todd is still making "bad" or ineffective blood cells, but the Vidaza targets them. So, we aren't sure what will happen once the Vidaza rounds of chemotherapy are completed. Some patients have been fortunate enough to go into a short-term remission, while others have experienced resumed progression. Vidaza is usually used in two main instances: first, for patients without a bone marrow match or who are too old or too unwell to undergo a transplant. For others, it is used pre-transplant to get patients into optimal health conditions, by reducing the blast counts, so they respond better to transplantation.
So, will Todd still need a transplant? Most likely. I understand that there may be a chance he could go into a short or maybe even a long-term remission. However, chances are it will begin to progress again at some point.
The advantages of putting off transplantation include a good quality of life if he is not too symptomatic. It also buys time for new cures to be researched and implemented. We were told from the start by several doctors that the research in this area is moving rapidly. Many hope for a safer alternative cure than bone marrow transplantation.
The main disadvantages of putting off transplantation is the possibility that his MDS could progress quickly to Acute Myeloid Leukemia without any warning. This in itself holds many scary outcomes, including proliferation to other parts of the body.
Another would be that there won't be a newer, safer cure by the time he needs it. Meanwhile, he is getting older and the MDS could progress making him symptomatic or if progression would go to AML, it would require additional chemotherapy to put it into remission before transplantation can be attempted. Even if his blast count went to say 15% which isn't technically AML yet, he would still have to lower his blast count to begin the transplant.
So, for now we are cautiously optimistic that the multiple rounds of Vidaza will continue to affect his MDS positively. Remission would be ideal! Todd is still young enough that we are wiling to wait for a newer, safer cure if we can. If it becomes absolutely necessary he will do the transplant, but as a last resort.
This is all conditional upon the results of his most recent cytogenetic report which we should receive in about another week.
We are taking things a day at a time trying not to get ahead of things. We are listening to his doctors and weighing their advice and treatments regimines. We are rejoicing and thanking God for this good news.
Thanks again for your support!
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