MDS treatment questions

[Mary E]

I am new to the site. I am in nearly 3 years remission from Acute Myeloid Leukemia, and recently diagnosed with MDS. Looking for naturopathic method to raise my wbc, rbc, and neutrophils. I'm interested in the Vitamin K/D-3 mentioned in the thread. Also would welcome any other advice, as I am being encouraged to start on azacitidine by my oncologist, and would like to avoid that if possible.

[bailie]

Welcome. What were the reasons for the MDS diagnosis? What type of MDS (there are many)? Did the information come from a bone marrow biopsy? Genetic mutations? Blasts? Have you had a stem cell transplant?

I have had 22 cycles of azacitidine(Vidaza). The Vidaza saved my life. I went the opposite direction than you. My first diagnosis was MDS (RAEB-II). I had eight cycles of Vidaza before getting a stem cell transplant. At about 210 days post transplant I relapsed to AML with the Philadelphia chromosome which is extremely rare. I then went back on Vidaza for 12 months along with dasatinib (for the Philadelphia chromosome).

I had been on Vitamins B-12 and D-3 for several years before my diagnosis. They obviously had no effect on my MDS. I'm sure they helped for other things.

Questions are always welcomed on this forum. We learn from each others' experience.

[salvi]

Hello Mary E,

I am new to this forum as well, and it is actually your question that made me register. I too am previous Acute Myeloid Leukemia patient, diagnosed and treated with chemo only in 2013. Then I lived healthy for two and a half years, until June this year, when my CBC:s slowly started to decline. In August after a bonemarrow aspiration I was diagnosed with tMDS (therapy related MDS, caused by one of the chemo drugs used to "cure" the first blood cancer).

When reading your post my first thought was whether the MDS you have is not therapy related as well? A hematologist can usually tell based on chromosome mutations that are common in therapy related MDS/AML, diagnose supported by the time passed since the first treatment.

I don't know about vitamins or any diet that could help long term. If it is therapy related, then prognosis is generally bad in comparison to de novo MDS.

In my case, I'm in my early forties, my doctors immediately decided I should have a transplant if possible. In the meantime I received another AML like induction chemotherapy cycle (amsacrine, cytarabine, etoposide, since daunurubicin, which I had had the first time, was ruled out due to heart toxicity). Luckily my marrow responded and I went from 9% blasts in marrow to only 1%. I am now receiving Vidaza as bridging towards transplant. As I understand it Vidaza is not a cure, it works well for some, but even then it can stop working any time and you won't know when that is. Depending on your situation, current state of health, age and many other things Vidaza may be a good option for you.


What I really wanted to say was: find out whether this MDS of yours is therapy related or not, and if it is, what options you have!

I wish you all the best.

[Mary E]

Thank you, Salvi for your information.
We have followed the same path, it seems. My AML diagnosis was also in 2013, and it was in the summer of 2016 that my blood counts started to decline. This diagnosis was a result of 2 bone marrow biopsies, and is evidently therapy caused. I am having a difficult time coming to terms with how a disease that was caused by chemo therapy can be harnessed by more chemo. I have been searching for some kind of naturopathic method to boost my immune system and my white counts. (none of which has worked so far). I welcome any input, and thank you again.

[bailie]

Mary, in your first post you said, "Looking for naturopathic method to raise my wbc, rbc, and neutrophils". No "naturopathic method" is going to change genetic mutations. Did the MDS diagnosis include any genetic mutations? What was your MDS diagnosis (there are many different forms)? In my situation it was extremely important to start the azacitidine immediately. I am guessing that your doctors have suggested a stem cell transplant. It is the only "cure" possibility for MDS.

[Cheryl C]

Hi Mary

I can understand your reluctance to undertake more chemo. Sounds as tho' your current diagnosis is probably due to previous chemo. It would be a very difficult decision for you. However as Bailie writes, a transplant is the only possibility for a complete cure. You can look at some transplant statistics here: http://bloodcell.transplant.hrsa.gov.../survival.aspx Unfortunately these statistics don't seem to indicate how many of the 3-year survivors are suffering from debilitating GVHD.

What % of blasts do you have? Do you have any genetic mutations?

While natural remedies will not cure you, depending on your disease status, it may be worth experimenting with some natural substances for about 3 months, to see if you get any improvement in your blood results. You could do a search for Vitamin D3/K on this forum, as there have been conversations about that in the past. I personally take D3 fairly regularly (though not daily) as it definitely helps to keep my platelet levels in low normal range rather than below. I've proved that this is effective for me a number of times now. (What is effective for one person is not always for another, though). The Chinese specialist who did my bone marrow biopsies told me I should take 1000mg Echinacea every day for my white cells/neuts. I don't do that as I like to take a hit of Echinacea when I get a sore throat and I want it to be really effective. Oil pulling is an interesting concept you may want to research: http://coconutresearchcenter.org/boo...rapy-a-review/ I've also been told that taking Olive Leaf extract daily can help. If you have a natural pharmacy with highly qualified staff within range, you would be wise to consult with them.

I don't know what could help your rbc levels. I've found that taking a good quality iron supplement like Floradix doesn't make any difference to my results, but it does help me sleep better (low hb and rbc can cause insomnia).

My thoughts and prayers are with you as you consider your options.