MDS

[Ningwa]

Hi everyone!
My name is sanam limbu. I m 33 yrs old. I m married and have got two kids. 2 years ago in 2014 while doing whole body check up, my blood counts were found low. Like hb 8.2, wbc 3400, plt 55000.Then we did bm biopsy and found out hypocellular marrow with 20q dek and normal chromosomes. Then i was told by my hematologist that it can be aa or hypoplastic mds. Then i went for second third opinion. Second dr said its more likely aa and third said its probable Mds. Im still under monitoring. My latest count is hb 9.7, plt 54000, wbc 3800. I have done bmb 4 times. My kids r very youngs, 8 boy n 4 girl. I dont wanna die this early. Plz suggest me the best way to do.
Thank you
Sanam limbu

[bailie]

Welcome to the forum. We are sorry for your diagnosis. Has anyone talked with you about a stem cell transplant yet?

[Hopeful]

Hi Ningwa,

Try not to panic. I was a mom in your situation 8 years ago, with some doctors saying MDS and some doctors saying AA. It is very stressful not having a clear diagnosis.

Do you have any blasts or significant dysplasia? If not, there is some recent research that I have read that says an isolated 20q mutation is not enough for an MDS diagnosis, as it is sometimes seen in normal individuals.

Here is the article:
http://www.bloodjournal.org/content/...o-checked=true

If your counts are increasing, I think that is a good sign. I never saw an increase in my counts. Perhaps you were exposed to a toxin or drug 3-4 months ago or maybe you had a bad virus then that wiped out your counts and your marrow is slowly, slowly healing.

Try to eat healthy/organic, get sleep, and avoid any alcohol/drugs/supplements/teas/etc. Be cautious around sick people. Focus on healing. It sounds like you are in good hands with your doctors and their monitoring.

You are young, and that also is a positive thing should you need treatment in the future. I hope things keep improving for you!

[Ningwa]

Thank you guys for your replies. And yeah my doctor says i may need bmt in future if its mds. And the blast seen in 2014 during my first biopsy was 0 and in 2015, it was 2% with no cytogenetic abnormalities with 5% lymphocytes. Now my new doctor again wants to see my bone marrow. Its beens 4 biopsies in 2 years and now its gonna be fifth. Is it not very risky for infection or any fatal side effects for doing so many biopsies, guys? Plz stay touched....

[Ningwa]

And yeah second biopsy says its moderate erythroid dysplasia with nuclear cytoplasmic asynchromy, nuclear budding and irregular nuclear outlines.

[Ningwa]

Dear hopeful,
You have mentioned here to avoid supplements and teas. I have been taking vitamin d3 and b1 and lots of green teas and wheatgrass juice. Are any of those harmful to me? Plz let me know whatever experiences you ve got.
Thank you

[bailie]

I will be having my 18th bone marrow biopsy (in three years time) tomorrow. So far I have had zero problems from them. They are very informative. Some because of positive news and some negative. I have always felt that the more information the better.

[Ningwa]

Thank you baillie. Your comment was very informative to me.

[Hopeful]

Originally Posted by Ningwa

Dear hopeful,
You have mentioned here to avoid supplements and teas. I have been taking vitamin d3 and b1 and lots of green teas and wheatgrass juice. Are any of those harmful to me? Plz let me know whatever experiences you ve got.
Thank you

Hi Ningwa,

Back when I was first being diagnosed, my specialist told me to avoid teas and supplements. He was trying to determine whether I was unknowing ingesting something that was contributing to my declining counts.

In the US, the supplement industry is unregulated and so you never know what you are taking! I recently heard a leading specialist caution against taking high amounts of Vitamin D indiscriminately, as Vitamin D is fat soluble and can be toxic in large quantities. I think the Vitamin B's are water soluble, so if you take too much of them your body will get rid of the excess.

I drink organic green tea now. I would stay away from anything that is non-organic, as contaminants can leach out when it is brewed.

[Ningwa]

Thank you hopeful. Doctors here in hong kong do not give us any suggestion about diets. Actually i like spicy food, used to smoke, drink, take drugs before. I m clean Since 3 years. Ocassionally i smoke but donot drink. Plz tell me is it going to decline my count?i have got so many questions playing in my mind. Sorry but really really wanna know from the experienced ones like
I have read so many article from google. Its written that survial rates for low risk mds is 4.5 years. So does it mean that we are definitely going to die in next 2-3-4-5 years? Do we have to be prepared to welcome our death soon? Did we already lose 95% of our chance of living once we r diagnosed???? Plz honest answers....

[Cheryl C]

Hi Ningwa - Every MDS patient is different.

The lifespans are only averages, and are calculated over many people. They scared me at first, but I have had MDS for around 7 years now, and have not had to have any treatment except for 4-weekly intravenous globulins which help my immune system. There are several different types of MDS and some patients live for many years. Don't rush to have drug treatment unless your specialist recommends it. Hong Kong is known for world-class specialists so trust your haematologist/oncologist.

As far as diet is concerned, of course as healthy a diet as you can manage makes sense. Alcohol is not recommended for MDS patients. Smoking is introducing more carcinogens to your body so not wise either. Eat plenty of fresh vegetables and fruits - well-washed - and drink plenty of water. Try to get some exercise every day. Vitamins D3 and B12 are important for platelet and folate levels. Ask your GP to have these levels checked.

Keep posting - we'll be watching out for you!

[Ningwa]

Thank u hopeful.

[Hopeful]

CherylC gives some good advice. I don't want to steal her credit

You are very young and it isn't clear yet that you even have MDS. The average person with MDS is 70+, so that will affect the life expectancy stats as well.

Focus on the positive and the things that you can control - like no smoking If ever there was a reason to quit, this would be it!

My doctors also told me to eat a varied diet that included meat. So, I will just throw that out there as well.

I hope your next CBC is headed in the right direction. Sometimes the marrow can heal on its own if the cause of the aplastic crisis was a drug or chemical exposure that has since been removed. Youth is in your favor!

Best of luck!

[DanL]

Sorry that I am so late to respond to these good questions. Like you, I was diagnosed at a young age in 2010 - 36 years old. I was initially misdiagnosed as having ITP, but was later found to have MDS. I did not receive any additional treatments until November 2013 when my MDS started evolving. Up until that time, I had normal white and red counts, but only had 20k-30k platelets. I did not receive any transfusions during this period of time. In 2014, I was entering a blast crisis and had 16% blasts in my peripheral blood. In February 2014 I had an unrelated donor stem cell transplant. I partially relapsed in August of 2014 and received 6 cycles of Vidaza. I have been free of disease and treatment since February 2015.

I tell you this to answer your first question about life expectancy - 4.5 years for low-risk patients is an average, but as noted in a previous post, that takes into account that the average patient, at least in the us, is 71 years old. It is rare for somebody under the age of 60, but even rarer under the age of 40. MDS is extremely individual on its effects on patients. I have met some people who have survived 10 years or more without transplant, and have met several transplant patients who have been alive for more than 20 years post-transplant.

It is not an easy disease or path, but as medical practice improves, so does life expectancy. The information on long-term studies by definition is at least 10 years old, and in many cases 20 years old. They are retrospective in nature and sometimes lack adequate sample methodology, so the law of large numbers does not apply to your case.

As for the diet, I think you have received a lot of good advice already from other members of the forum. Personal experience says that drinking makes platelets not function properly, especially when they are lower in number. Try to avoid activities that will likely cause deep bruising, especially to the head. Also try to avoid getting un-necessary infections - be careful with sharp instruments, like knives. Treat wounds immediately, and if possible, avoid people who are ill when your white counts are low.

I wish you the best of luck in your journey.

[Bossywife]

Alcohol and aspartame are bad for bone marrow.

After he was diagnosed, my husband started taking folic acid, vita D, cod liver oil and a B supplement and all of his numbers dramatically improved. I also gave him wheat grass juice and lots of juicing, less simple sugar.

[Ningwa]

Thank you guys. I cant tell how hopeful i m after i read your comments. I have not touched the drink since 2.5 years, smoke very ocassionally when stress level is really high. But yeah hopeful u clicked my mind to make this as a big reason to quit smoking forever. Hopeful, Danl, bossywife plz keep updating me about all this.
Thank you

[Ningwa]

Thank you cheryl c. I m so sorry that i couldnt see your name and didnt thank u that time coz u know i was only focused on the comments and not the names. That was very informative for me and plz keep up with new updates.
Thanx everyone

[Cheryl C]

You are welcome, Ningwa. This forum has been wonderful for me, so if I can share a little too that is great!

[Ningwa]

hello guys!
i did bma once again last week and some genetic blood tests as well. i am going to see the dr on 3 oct. Before that i would like to share something here with you guys. i have a lot of mouth sores almost all the time. as soon as it gets healed in one place , comes up in another place. having pain in bottom farmost teeth. nowadays i can feel a pain around my back but doesn't stay in one place, sometimes on the shoulder, sometimes back neck, sometimes ribs, most importantly i am having pain in my armpit since yesterday, more on the right one. are these all connected to the disease or is it getting progressed to leukamia or is it bcoz of my lack of sleeps? please share if anyone has got experiences or any idea so that i can be more confident to talk to my doctor who has got very limited time for me. thank u guys