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Clinical Trials Considering or participating in research studies

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  #1  
Old Thu Sep 8, 2011, 06:05 PM
Al's Wife Al's Wife is offline
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Day 15 of Sapacitabine Clinical Trial

Wow, I'm not sure what I expected, but it wasn't for his numbers to all go WAY down, including his WBCs, which have never been down before. Yesterday was Day 15 of Cycle 1 and the nadir for Sapacitabine is 14 days. So I was expecting low numbers, but not that low. He basically had no platelets, the lab report said less than 4. So he had his first transfusions ever yesterday - one of platelets and one unit of blood. They had ordered two units of blood, but because the lab took so long in getting the blood to the infusion center, he was only able to get the one unit. We will go back next Wednesday and have labs and get additional blood, if needed.
I am just so stressed with these numbers. I'm hoping that this is the way this is supposed to work - the numbers go down and then back up. But I wasn't expecting them to take that much of a dive, especially all the lines.
I've trying reading online about Sapacitabine but it is way beyond my understanding.
So all I can do is wait and pray and hope that things will improve. He is to get another bone marrow biopsy before he begins Cycle 2, which will be on September 21st. I know that may tell us if the clinical trial is working or if he is getting worse or progressing toward AML. The waiting is tough.
But on the good side, he seems to feel okay. We're just trying to take it one day at a time.
Linda
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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Old Fri Sep 9, 2011, 05:41 AM
Birgitta-A Birgitta-A is offline
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Sapacitabine

Hi Linda,
Good that Al is feeling OK! You know nausea is a quite common adverse reaction. When his WBCs are low he has to be very careful and try to avoid infections both from other persons and from food.

Here is an article about Sapacitabine. As you can see most of the 47 patients have AML only 4 have MDS.

If you look at Table 3 at adverse effects concerning the counts (hematologic) for the 35 patients who received Sapacitabine 7 days a week you can see that only one patient developed low HGB grade 3-4 (serious).

One patient got low WBCs (leukopenia) grade 1-2 (not serious) and 6 serious.

One patient got low platelets (thrombocytopenia) not serious and one patient serious.
http://jco.ascopubs.org/content/28/2/285.full.pdf

This means that low counts are not very common. Hopefully Al will respond to supportive treatment. If his WBCs are very low they perhaps could give him Neupogen if that drug is OK in this trial.
Kind regards
Birgitta-A
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Old Fri Sep 9, 2011, 04:22 PM
Al's Wife Al's Wife is offline
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Birgitta,

Aren't low blood counts to be expected during chemotherapy? You are so much more knowledgeable about all of this and I really appreciate the article on Sapacitabine. When he was on Vidaza for those 6 cycles, his counts would go way down and then back up again. So I thought this drug would work the same way. I just wasn't prepared for all three lines to go down so far.
We'll see what next Wednesday brings.
As always, thanks for your input.
Linda
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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Old Sat Sep 10, 2011, 02:20 PM
Birgitta-A Birgitta-A is offline
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Sapacitabine

Hi Linda,
Yes, chemo can kill all kinds of cells and the fast dividing stem cells in the bone marrow are often very sensitive. Some chemos are more toxic for the bone marrow than other and some patients are more sensitive than other. Sapacitabine doesn't seem to be very hard on the bone marrow for most patients according to the study.

If the HGB is low we feel tired.

If the WBCs are low we don't feel anything until we get an infection. Control Al's temperature twice a day and if he feels hot. If the temperature is high you should go to the ER and not start taking any drugs to get the temperature down.

If the platelets are low we can get small bleedings from mouth and nose. We can have platelets that function very well and manage with low counts. Most clinics transfuse if they are lower than 20. My platelets are dysfunctional and I always have blood blisters in the mouth and bruises even if my platelets are 100. Remember that many drugs can decrease platelets for example all pain killers - avoid them if possible.

We hope that Al's counts will increase with best possible supportive therapy. Then it is always important to eat well, take exercise, sleep enough and so on.
Kind regards
Birgitta-A
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