New Member Welcome

[cary]

I just found out about this site and joined. I am a Viet Nam Vet 69-70 and was diagnosed with MDS in November 2017. I have been taking Vidazza (7 days at a time) since December and just finished my 4th month with 8 more to go.
I was not stationed anywhere near Agent Orange that I knew of so all this comes as a surprise to me.
cary epes

[Rarity]

Hi Cary,

I don't have anything to share regarding Vidaza and sorry you have this too. It most certainly is shocking to hear especially because it's something you haven't heard of. I was glad to find this site as well and find it very helpful when we first had the diagnosis and now. I'm sure you will learn a lot reading through this site.

Wishing you all the best and thank you for serving.

Rarity

[Leigh Clark]

Hi Cary,

If you would like to get connected with other veterans, contact AAMDSIF, help@aamds.org or call 800-747-2820 x140.

Best wishes to you.

Leigh

[Tereze]

I am newly-diagnosed with highest-risk MDS brought on by chemotherapy. Starting vidaza on Monday, but it doesn’t make much sense to me, as most of what I’ve read about vidaza suggests it is effective for a limited time, perhaps 2 years. At that time a transplant would be my only option. I’m 72. It seems to me it might be wiser to have the transplant as soon as possible.

I had pretty much made up my mind to ask my doctor about this... but I’ve just read details about the procedure, and it truly sounds... appalling. With ongoing risks; as if one is never really out of the woods. Yet without it I doubt I can live 2 years. I have a rich, lively life and a 3-year old granddaughter I want to see grow up! I keep returning to the thought that the transplant is really my only choice. I’m not ready to say, ‘ok, two more years, that’s it.’ And if I wait I’ll just be - older, and sicker!

But the transplant sounds - well, terrifying.

I’d be grateful to hear from folks who’ve had transplants, or anyone who wants to weigh in!

Thanks everyone...
Tereze

[Hopeful]

Hi Tereze,

I haven't had personal experience with Vidaza, but from what I have heard and seen, Vidaza can be an effective pre-treatment regimen for transplant. It also has been used successfully as part of some post-transplant regimens (for example, Robin Roberts who also had secondary MDS).

The one caution with Vidaza is that if you start it, you should be prepared to stick it out for at least 6 cycles before determining whether it has worked. If you stop sooner, it seems like things could go downhill faster.

Responders to Vidaza seem to have a pretty full life while it is working. Plus there is always the potential that new treatments/regimens will be discovered in the meantime - especially with the rapid evolvement of genomics.

Enjoy your granddaughter!

[Su H]

Hello!

I'm Su in Florida. I have been diagnosed with AA. Right now, the doctor is just watching the levels. They quit dropping, finally. My white blood count was 3.7 (4-10-range)at my last visit. Hemoglobin - 9.1(12-16-range). Platelets - 23(150-200-range). Doc indicates treatment, drugs, will likely begin in a couple of months.

I don't really understand! He said my bone marrow was functioning at 1%. Obviously, I don't feel good, but, I don't know what to think! The first doctor, the one who discovered this, was adamant that I start treatment right away. However, the transplant specialist I was sent to is taking a slower approach.
I have too much I want to do and learn! My family is raised and I live by myself. I'm very happy with my arrangement! Now, this!

I'll be reading other folks' posts. I just don't really know what to do or think about this. I've not ever been ill like this before.

Thank you!

[Hopeful]

Hello Su,

Welcome to the forum! You may want to start a brand new post to get more visibility to your questions.

Did you doctors do a BMB and many other tests to rule out other possible causes for your low counts?

If your ANC is normal and you are not transfusion dependent, most doctors will watch-and-wait for moderate AA. However, there have been many studies for SAA that show the time between diagnosis and treatment is absolutely critical for response. I don't think the same studies on the timeliness of treatment have been done for MAA, unfortunately.

If you first doctor is adamant about starting treatment right away, take note! If your immune system is attacking your marrow, you need to stop the attack quickly to prevent further damage.

Typically the transplant doctors are less interested in IST. So, if you are confused by the different doctor responses, get an urgent appointment with another non-transplant AA specialist.

Good luck!

[Su H]

Thank you, @Hopeful! I think I will post a new thread. Right now, I am so confused, like, discombobulated! I am freaked out - still!

Thank you for responding to my post, though! I have had two BMB's. I'll continue in a dedicated post.

[brien27]

I was diagnosed last year with Myelofibrosis and subsequently has a bone marrow transplant, from which I am recovering now. I am writing an ongoing journal on Medium.com detailing my experiences in the hospital and beyond.

They are, so far (free links):

https://medium.com/@brienlee27/bone-...98188519f8fce2

https://medium.com/@brienlee27/decid...5b043dc77a1dd6

https://medium.com/@brienlee27/complications-the-story-of-my-heart-3a1cfb305c27?
source=friends_link&sk=34ea04f791b1d331b7c7766a4e4fd39c

You may have to sign in with a new free account to Medium, and if you do, please subscribe to me (the author, @brienlee27)

Thank you!

[Neil Cuadra]

Thanks, Brien. Your blog is not only very readable and personal, but it has good information for others facing transplants.

Your description of the low microbial diet was wonderful. It reminds me of when my wife was on that diet and we learned how to be careful, and how to put up with a lot of canned food, which is naturally safe from the canning process. Even years later, back on a normal diet, we still have the habits we learned about food safety.

[Matthew42]

I wish you the best recovery, Brien. You are amazing!. Your story is incredible.

My mother is 70 and has aplastic anemia. Her treatment has yet to work. If things don't improve by the end of summer (to get off blood transfusions), she is going to get a 10-day Campath infusion. If that fails, we can do rabbit-atg.

At any rate, her current hematologist says that she is too old for a bone marrow transplant, but I've read of people older than her who have had one with success.

Please take good care of yourself.

Love and peace.