[diana]

Hi Sharon,
I came across this, and thought you might be interested in reading if you don’t already.

http://forums.marrowforums.org/showthread.php?t=6075&goto=nextoldest

Please scroll down to Sally C may 4, 2018
about a successful low platelet treatment.
“He was the first MDS patient in a Promacta (Eltrombopag) clinical trial at The National Institutes in 2011-2012….remission since”
It may depend on many other factors also.
Good luck to you and family.

[diana]

Hi Barbara,
Did you take the vacation?
Hope everyone is healthy and happy!
My blood work is normal today. My doc said she will see me in six months. I will have blood work done monthly. My last Vidaza injection was March 9, 2018. Dr Liang said Vidaza will work again if my number is bad. Dr Liang also said one patient was in remission for 2 years, and Vidaza worked when MDS returned.

[diana]

Hi Sharon,

I hope your husband is doing well. You didn’t mention what kind of infusion your husband gets, and for how long? What his platelet counts before treatment?

I was diagnosed in September 2017 at the age 65. The Vidaza does/did help me. Like they said Vidaza caused hectic with my blood the first two cycles. My blood counts started improving the third cycle. I did complete all six cycles and now have blood work once a month.

My platelet counts was 539, 361,471 before the first cycle

332, 173, 147, 312 before the 2nd cycle

205, 77, 69, 143 before the 3rd cycle

192, 280, 326 before the 4th cycle and has been normal since

my first and second cycle…7 days.
my third – six cycle……..5 days vidaza.
I am grateful that my doc reduced Vidaza to 5 days after 2nd cycle. Her strategy worked apparently.

[diana]

Can I ask how old are you? Less than 65 or older? Age is one factor determines what kind of bone marrow transplant one may get.

[diana]

Hi Sharon,
Hope your BMB turns out ok!
It is very interesting. How did you bring up all your bloodwork number up through diet? not flagged low

[diana]

Hi Jack,

I was diagnosed MDS at age 65 in September 2017. My BMI was 20 before I got sick. I lost more than 10 pounds over 3 months partially due to poor appetite, and down to < 100 pounds. I have gained all the weight back, and have to be careful now not to gain more.
Most people will lose weight eating healthier.

What is your BMI? How much weight did you lose in 9 days?
Do you like bananas, nuts…like mixed nuts, almonds, walnuts, cashes? Hope you are not allergic to nuts. How about avocados? I eat 4-5 avocados a week. Trader Joe’s has organic non sweetened coconut flakes. Dried Prunes are packed with calories. Yams, brown rice, pastas…my son eats bread with coconut fat.
Banana may cause constipation…it’s best to stop eating bananas at least two days prior Vidaza treatment. During Vidaza treatment, indulge in prunes, coconut, walnuts….these may help relieve constipation problem.
Don’t forget eat a variety of fruits and vegetables!!!
What are your blood counts? Blast? Do you have BMB?

[diana]

Hi Basamere, James,

Thanks for sharing. The link is great….
I was diagnosed MDS at age 65 in September 2017 with bone marrow blast 15 to 20%, hemoglobin 5.6. My doc put me on Vidaza immediately. I finished sixth/last cycle early March 2018. Both my doc and I are surprised my remission came so quickly. Have been transfusion free for six months. My energy level is pre MDS.
I would like to think my lifestyle has something to do with my luck. I am not a vegetarian, I eat a lot less cheese and other animal protein than before I got sick. No beef….since beef is loaded with iron. A few avacadoes a week.
I do take multi and 5000u D3 daily.

It is totally worth it IMHO.

[diana]

I finished my sixth/last cycle early March 2018. I understand that most patients do not stop Vidaza like I did. My latest blood work on May 3 is normal. My doc said i will start Vidaza again when/if symptoms return.

[diana]

Please try to avoid long hot shower or bath. Some claim cold shower will help dry skin. I compromise and use lukewarm water.

[diana]

The above post is for Lyssa.
Hope everyone feeling well.

[diana]

Please google copper deficiency related MDS If your husband is not tested for blood copper level.
Copper deficiency is very rare. It usually happens to stomach bypass patient, zinc supplement, diarrhea/dehydration.
I watched quite a bit MDS related videos, or read forums. It seems that about 1/3 MDs mention copper deficiency. They usually always mention B12 and folate deficiency.
This you may already knew that MDS-foundation.org under patient and caregiver forums has many great videos, audios, transcripts and presentations.

[diana]

Checked Dacogen: ankle swelling is not one of the side effect. I had MDS for a few months. Never experienced ankle swelling. I am currently in remission after six cycles of Vidaza.
Among other causes, too much salt or too little salt might cause ankle swelling. Did you get your blood sodium checked?
Please elevate your legs a few times a day. Message may help too!

[diana]

Allan,
Glad you have Low risk MDS.
Wonder have you ever been evaluated blood B12 and folate?
Do you take zinc supplement?

I am not a doctor. I am 66. I was diagnosed MDS by BMB in September 2017. low RBC, WBÇ, normal cytogenetic studies and ferritin 355(reference range (15-150). And I came across MDS and copper deficiency and was curious and read quite a bit.

Copper deficiency mimicking myelodysplastic syndrome. If you google copper deficient related MDS….
below I copied the abstract from
https://academic.oup.com/ajcp/article/132/2/191/1760389
“Copper deficiency is likely an underrecognized cause of anemia and neutropenia and may masquerade as a myelodysplastic syndrome (MDS). We report 2 cases of copper deficiency in which the diagnosis was suggested based on the characteristic morphologic findings, such as cytoplasmic vacuolization of erythroid and myeloid precursors and iron-containing plasma cells. It is interesting that both patients had hematogone hyperplasia. This phenomenon, largely absent in MDS, may aid in distinguishing nonclonal causes of cytopenias, such as copper deficiency, from MDS. It is of crucial importance to identify treatable causes of cytopenias when MDS is suspected. We recommend copper level assessment in patients suspected of having low-grade MDS, especially patients with neuropathy and normal results of cytogenetic studies.”

[diana]

Hi Radhda,

I hope your father all the best.
No, my doctor didn’t expect my excellent response. I am the opposite of your father, I resisted blood transfusion more than Vidaza. I almost died without blood transfusion. My Vidaza side effects were minimal. Vidaza is a demethylation agent, it is not real chemo. My side effects were headache, injection site irritable, and I took one or 1/2 tablet of anti nausea tablet an hour before injection. For constipation: 100mg stool softener docusate + no banana, prune juice, honey, enough water…. Constipation is the worst side effect IMHO.
Please google Vidaza wiki, and you will know more.
Iron overload is bad. Can your father get chealating agent to remove the iron?
My husband took me getting Vidaza when I was very weak and skeptical about Vidaza. I would rather take a nap. Will someone accompany and encourage your father to the hospital?
My good response is rare, and I was not badly iron load, your father may take a little longer to have response. You can phone him and encourage him every few days. Like your father, I was very healthy except for MDS.
Dr Dawn’s podcast said that vegetable and fruit may help remove heavy metals. I try to eat more vegetable.
My last transfusion was between cycle 2 and cycle 3. My red blood cell and hemoglobin became normal after cycle 4. Each cycle is 4 weeks.
I cannot write comprehensively, and I apologize.

[diana]

Raghda,
I was diagnosed a few months ago at the age 65. The Vidaza does/did help me. Like they said Vidaza caused hectic with my blood the first two cycles. My MDS started improving the third cycle. Gradually my blood work improved. I did complete all six cycles and have blood work once a month.
I had four blood tranfusions/eight units.

my first and second cycle…7 days.
my third – six cycle……..5 days vidaza.
I weigh around 100 pounds and my doc reduced my vidaza due to my size. I thought the reduction made a big difference….in my blood improvement and less side effects.
Hope this helps.

[Author]

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