Oh Where Oh Where are My Little Platelets

[For_Emma]

Ok if I don't laugh I am going to cry hence the bit of humor in my Post Title. Let me start by saying that I have been drinking from a fire hose trying to bring myself up to speed on MDS and the many different alternative treatments. I have been reading as much as I can and asking as many questions that I can as an advocate for my wonderful 78 year old mother.

I do have the following questions on how to improve platelet counts with MDS patients.

My mother was diagnosed with MDS 1 year ago. Her platelets were in the 50-60's last year however once she was administered the Procrit and Revlimid her platelet counts dropped to the 27 range. She has had 3 blood transfusions w/platelets in the past 5 months. I was reading about natural means by which platelets could be increased.

Question #1: Has anyone tried natural ways to improve platelet counts with positive results such as increase in leafy veggies, Omega 3 fatty acids, 1000 IU of Vitamin C, Papya Juice, Flack Seeds, Eggs, Salmon, Tuna ? .... what else am I missing?

Question #2: If not a natural way to increase platelets what medications are available that have had positive results with minimal side effects.

Question #3: Once your platelets, WBC, HBG drop via use of Procrit / Revlimid or Vadiza will they ever come back. I thought I read somewhere that these medications can cause the counts to drop and are irreversible meaning the counts can never come up. Does anyone know if that is a true statement?

Thanks again everyone and have a blessed evening. Cynthia

[Chirley]

Someone once told me pineapple works but that's just anecdotal.

[JordanN]

Hi, Cynthia!

Welcome to the forums! I'm so sorry your mother is dealing with bone marrow failure and just wanted you to know that I understand how scary and frustrating it is trying to help your parent and yourself manage this disease! You are doing a great job!

I am not nearly as knowledgeable as many others on this forum (DanL explained things so well!), but I can at least tell you what my 80 year-old father's experience has been in reference to some of your questions.

I do think you really need that second opinion because you can't effectively treat these diseases without knowing exactly what type of bone marrow failure you have. In my dad's case, he has MDS RAEB-2 (18% blasts as of 10/14) with deletion of chromosome 7 and initial labs of WBC = 1, Hgb = 8, and platelets = 50. With these findings, Vidaza was the recommended treatment. It was made clear to us that Vidaza for him would NOT be a cure and was an attempt to slow the progression of the disease and improve his quality of life with better blood values.

For my dad, the Vidaza was unsuccessful as it did not reduce his blast count or improve his blood values, but he was continued on it because it did seem to keep the blast count from getting worse for awhile (he is having another BMB in a couple of weeks because it looks like things are changing for the worse now after a year of treatment). In reference to your question, Vidaza does lower your blood counts, but even in my non-responder dad his counts would recover a bit between cycles. If they were too low, he got transfusions and his next round of Vidaza would be postponed until the values started to rise again. People who respond well to Vidaza seem to have their counts recover well between cycles.

It seems that these diseases act a bit differently for everyone, and all you can do is educate yourself, find a doctor you can trust, and try what you think is best. My dad's course hasn't been as successful as we had hoped, but on the other hand it hasn't been as horrible as it was initially predicted to be.

I wish you and your mom all the best and will be keeping you in my thoughts and prayers!

[DanL]

Cynthia,

Platelets have been the bane of my MDS existence. I have not had a normal platelet count since 2010, but have been able to do well with extra precautions. While on Vidaza, I would see a a pretty routine cycle - good during the week of infusions, starting to decline the second week, hitting the trough on week three, recovering week 4 and continuing to improve during the new treatment week.

Everybody's response is unique to some degree. There are a lot of studies on Vidaza, and the categories of response are somewhat complex, but there are a couple of key indicators that as patients and caregivers that may be overlooked which are 1) stable disease and 2) progression free survival. The other difficulty is that best response is not easy to identify and can range from the second or third month of treatment all the way to the 12th month of treatment, although most responses come between months 4 and 6.

As for the never recovering counts - If this is happening, it is probably as much the result of the disease progressing as it is the effect of chemotherapy, which is not what we want to hear. When drugs like Vidaza and Revlimid are administered, their job is to help your body remove recognize and remove dysfunctional cells both in the marrow and the peripheral blood. The result of this is lower blood counts which may mean more blood and platelet transfusions. They also tend to suppress the marrow a little, so the new cells being produced take longer to get out. If the drugs are doing their job, fewer defective cells will leave the marrow, creating the impression that they are just lowering your blood counts. While true, it may be also indicating that the drugs are effective in meeting their objectives, which is why we need to give them time to reach full effectiveness rather than just jumping from drug to drug, especially in the absence of disease progression.

This is also why it is very important to work with doctors that understand your mother's situation well, that understand and work with MDS and other blood cancers, and that you continue to ask great questions from all of her caregivers. The tenured nurses also tend to be great resources for what is normal and what to look out for.

[Cheryl C]

For Emma: has your mum had her Vitamin D and folic acid levels checked? Sometimes low platelet counts are associated with low levels of these. There is some information on the web about this.

[Bossywife]

My husband's platelets have been around 40-90 for many years. I did a few things to try to boost his platelets (doctors aware):

1. no more aspartame (he is a diabetic, but he took my evil glare at face value)
2. cod liver oil at dinner time (he also has bad cholesterol numbers)
3. folic acid, D3, B12 supplements
4. wheat grass shots
5. juicing greens carrots and fruits (NOT as replacement meal, just as a supplement)
6. cut back on gluten (for him, he has an obvious reaction to gluten, being tested for celiac soon)

Alcohol is a bad one for platelets, but he rarely drinks.

Currently researching: Tumeric and cannibis oil -- if anyone has any suggestions, i'd love to hear them