MDS to Acute Leukemia and now back to MDS

[alicat4790]

I had MDS that went straight into Acute Leukemia. They told me that I had 6 to 8 weeks to live. One week after my Chemo the bone marrow biopsy looked bad, Chemo did nothing. They did another BMB 2 weeks later and it looked even worse. Strange thing is I was not feeling bad at all. I was up and around, laughing, smiling, and the doctors in Richmond could not understand why I was not feeling bad! So they took a 3rd BMB and I was Cancer Free. I am now back into MDS again getting ready to start using Vidaza. Then to Stem Cell Transplant. Never give up hope no matter how miserable things seem!! I was preparing for my death and a week later I had no more bad cells in me. Has this happened to anybody?? I am 47, female and live in the northern Virginia area. If you are a MDS person I would love talking with you. I could use some friends and support !! Caroline Call me after 8:00 pm at 703-606-3176 or 703-754-4790. Thanks and God Bless

[Birgitta-A]

Hi alicat,
What wonderful news !!!

As far as I understand it can be very difficult to diagnose MDS since it is not a disease but a syndrome - many diseases with common symptoms. As I have written before now performance status and other diseases are considered when they make a prognosis for MDS patients - not only counts, chromosomal aberrations and age.

Hope the Vidaza treatment and the SCT will have good effect!
Kind regards
Birgitta-A

[alicat4790]

Hello everyone: I had MDS that went straight to Acute Leukemia. After 5 days of chemo, I am now back to MDS. When I had the Leukemia, I was giving 6 to 8 weeks to live! But since I was feeling so good, the doctors scratched their heads and did not understand why I was not sick. So now they do a third bone marrow biopsy to see what was going on. After 4 weeks of having Chemo, a Third biopsy was done and the Leukemia was gone! I have been to Hell and Back. Do you know what it is like being told that you are going to die, and then a week later the bone marrow was "clean". The doctors said that I "through them for a Loop". I wanted to talk to anyone who has MDS or even Acute Leukemia. I need to talk to someone that has my condition. Please email me at: alicat0226@hotmail.com or call me at: 703-606-3176 after 7:00 pm, and thank you very much for reading this!

I start Vidaza tomorrow. Does anyone have any stories about this drug? Did you have side effects?
Caroline

[LynnI]

Wow, that certainly is a great early Christmas present. I am not in the same position as you, but just wanted to wish you luck. Now having said that I also have my blessings and don't have this disease bad as of yet and if luck holds I never will or at least for a very long time before it progresses to a worse level.

Lynn

[helen c.]

how are u doing on vidaza

[Brian Mullan]

Dear Caroline,I have been down a similar path.I started with MDS 5 years ago,for the first 2 years it didn't worry me too much as my Haemoglobin was good even though the others kept dropping.Unfortunately I had a cancer operation which caused me a lot of grief and kept me in hospital for 4 months as well as causing all my counts to spiral down.For the next 12months I was transfused 2/3 times a week before I lapsed into AML.I had the induction therapy plus the 2 consolidation therapies,the results were very good and for the next 8 months I was extremely well,did a brisk walk of 6klms daily and all my counts except the platelets were excellent.Unfortunately I had an accident and cut myself which turned into an ulcer and cellulitis.Strangely my counts had a big fall dropping vertially overnight and kept falling.4 months after the accident I lapsed into Erythroleukaemia which I had FLAG CHEMO but only the 1 treatment.My first BMB was clear but the second which I had last week was endorsed suspicion of early relapse.My haemoglobin is pretty close to normal,my neutrophils just in the normal range and platelets struggling at 42.The good news is that like you I am feeling very well and enjoying my life but I think everybody with these complaints should be very careful when doing any work where one could have an accident.Don't give up hope,pray to the Lord and hang in there.

God Bless
Brian