MDS?

[Arkrum]

In sept/09 my blood was completely normal, Hg @ 137 & platelets 219. In nov/09 I had my blood tested just by chance, Hg was 74. Four transfusions later & a BM analysis (5-8% blasts), my oncologist thinks I have MDS, and now my platelets have slipped to 88.
At 59, this is my 1st experience with illness. I am otherwise healthy and have had a lifelong history of fitness & endurance sports, so it seems a bit unreal. I have not run across anyone inflicted with MDS who has described a situation similar to mine - going from no anemia to severe anemia in a 2 month period. I feel physically fine - maybe a slight loss in energy. But I continue to work and exercise - albeit somewhat less than normal.

Any others have a similar experience? Comments?

I appreciate your feedback.

[Gene_In_Va]

I understand your shock.

I didn't have as much of a suprise on the anemia as you did but certainly was surprised to go from 10 sets of competitive level tennis a week to barely feeling like tossing a ball to my sons in a period of 1 month.

I had been diagnosed with Macroblastic Anemia months before but was still able to compete. I think my body had a certain level that it would tolerate and once I dropped below that level I was fatiqued by walking to the mailbox!

I was diagnosed with MDS (del 5q- syndrome) in October, started on Revlimid in late November with 6 units of packed red blood cells in between and then started on Revlimid which has been a wonder drug for me. My HCT has gone from a low of 19.6 in Oct back to nearly normal on yesterdays CBC (34.5).

Stay in shape, don't let the situation take over and fight. Others are on the same path and this forum as well as the one at mds-fountation are great sources of support.

Gene (62)

[squirrellypoo]

I had a similarly quick slide into Aplastic anaemia/hypo-MDS. Back in Oct 2008 I went from running 30k per week and lifting a lot of weights and being very physically fit and active to suddenly being out of breath just walking up a flight of stairs, all in the span of two weeks.

For me, it was a combination of about 4-5 "bad" runs in a row, combined with a series of bleeds in my eyes to tell me something was wrong and seek medical advice. All in all, my bone marrow failed spectacularly quickly, from utterly normal in September to very, very low in June (2 red and 2 platelets every week). They say I was only a few weeks away from total bone marrow failure when I went in for my transplant in July.

Not to say in any way that this will happen to you!! This was just my experience.

I'm really, really looking forward to my first run at the weekend. I hope to do a 10k around my 1 year post-BMT mark to raise funds and awareness for the UK's bone marrow registry charity, Anthony Nolan.

[Vera W]

I was 55 when I was Dx with MDS. Routine tests, I was never in the hospital, rode my Treadclimer rerularly and did weight workouts. Even my hematologist was supprised at my BMB DX, 11-12% blasts . My anc was 800. He really thought I was on my way to having AML.I have wracked my brain trying to figure out the reason why...I have no Clue

[Arkrum]

Thanks to all for your replies.
I'll be receiving 2 more units of blood tomorrow - seemingly on a 2 week cycle, 5th TF since early 12/09. I do have an appt at Sunnybrook in Toronto Mar 3 and should get results of my 2nd BM DX (this time incl cytogenetics). 1st BM DX was 'suggestive of RAEB-1'.
It seems like vidaza to get off the TF and que up for a transplant is the most viable course of action. From what I understand vidaza was just approved in Canada last month.
I'm pretty new to this and spending a lot of time trying to figure it out.

[Vera W]

Did you go to the Vidaza Website? Lots of good info there. I did Vidaza for 8 months, had undetectable blasts and had my transplant within a month. There is good reading on MDS on this site and also the National Bone Marrow Foundation and the lymphoma/ Leukemia Foundation. Take it a step at a time,and get as much info as possible. At least they found it when they did! Hang strong, we all know what you are going through.

[Marais]

I went to my family doctor in December for routine check up and blood work to check blood sugar (diabetes 2) and cholesterol levels. My blood counts had been relatively fine. This time, however, all 3 counts (red, white and platelets) dropped dramatically. I was sent immediately to an oncologist for a bone marrow biopsy which confirmed MDS (intermediate 2). I was started on the weeklong routine of Vidaza on the first week of each month. I just finished week 2 of chemo on February 5th. Only have had one red blood 2 unit transfusion just priort to week one of chemo. Platelets are up a bit but red and white cell levels are still about the same in the low level area. But I understand that one needs at least four sessions of Vidaza before reaching any preliminary conclusions.

Unfortunately, I don't deal well with "what if" or "maybe" type responses. I gather that Vidaza only prolongs the inevitable with MDS? That life expectancy is only somewhere between 24 and 36 months? Does anyone have a feel for the answer to my questions.

So far no nausea or adverse side effects with Vidaza. Am grateful for that.

[Zoe's Life]

Marais,

Don't start panicking yet, though I know it can be hard. MDS life expectancies on the internet are dated, and are generally cases without treatment. So many new treatments have come about in recent years. You don't say how old you are, but age is a factor also. Do you know what type of MDS you have, do you have excess blasts? That also makes a difference in prognosis.

At any rate, there are a lot of folks here who have lived, and lived well with MDS for far longer than 3 years. I was diagnosed 3 years ago and am working on starting my own counseling business.

This is a great place to be encouraged and meet MDS patients who have been around the block many, many times.

Zoe

[Arkrum]

I have suspected that many of the timelines and prognoses I have come across when researching MDS are rooted in the past and have changed significantly in recent years. I am waiting on results from an EPO blood test plus a 2nd BM scan (this time with cytogenetics). Hopefully there are no incr in blasts. Meanwhile I'm looking at TF#6 probably next week

I am encouraged by Vera W's story. And I did take your advice wrt the vidaza w/s. Most of what I'm reading seems to point me toward vidaza treatment followed by a transplant. I should find a match with one of my 4 brothers. But it does seem like everyone has their own unique response to treatments and seemingly much of it is hit or miss.

I'm trying to maintain some level of fitness x/c skiing 1-2 hr/day, a far cry from the 4-5 hr/day of last season. The irony of this situation is that I only found out about my low Hg when I had a blood test prior to hernia surgery. I never did get it fixed and it is a constant source of aggravation, especially when I exercise... and I can't stretch at all. And they won't repair it til my blood #s are up.

[Vera W]

One thing that really infuriates me is a doctor telling someone that they only have x amount of time to live, especially with MDS, My oncologist never discouraged me and he actually never called it cancer, which I deeply appreciate. He told me that MDS was being pushed more towards the cancer category because they never really tracked it before now and they didn't have that many statistics available; Vidazza has only been available for a few years, and you can truly say of MDS every person is different, I read about one lady that is starting her fourth year on Vidaza, My doc attends alot of lectures on MDS and he is very excited that alot of breakthrough research is coming our way, we discussed my situation,stay on Vidaza, get the transplant. I asked him point blank what he would do and he said get the transplant. he said he would support my decision but he believed that my best chance for long term survivai was to get the transplant. Don't let these doctors scare you, Remain DETERMINED and immerse yourself in research. Hang tough! Vera

[LynnI]

Hi,

I don't know how fast my hemoglobins were dropping before we first knew I had a problem in Nov 07 at that time I was in the 60's. But in Aug I could pick up a 55 lb bag of horse feed and run with it although I was very fatiqued etc. (I am a 5'2" woman) I was also running my dog in agility to a National level, he is fast (15-18ft per second ) which means I have to fly to run the course with him. It is amazing how the body can adapt and still function.

Btw, I go to Sunnybrook and see Dr. Wells, great guy. If you are interested there is going to be another support group meeting at Sunnybrook in March (6th if I remember correctly). You can contact the AAMAC to confirm if your interested.

Lynn

[LynnI]

Originally Posted by Marais

I went to my family doctor in December for routine check up and blood work to check blood sugar (diabetes 2) and cholesterol levels. My blood counts had been relatively fine. This time, however, all 3 counts (red, white and platelets) dropped dramatically. I was sent immediately to an oncologist for a bone marrow biopsy which confirmed MDS (intermediate 2). I was started on the weeklong routine of Vidaza on the first week of each month. I just finished week 2 of chemo on February 5th. Only have had one red blood 2 unit transfusion just priort to week one of chemo. Platelets are up a bit but red and white cell levels are still about the same in the low level area. But I understand that one needs at least four sessions of Vidaza before reaching any preliminary conclusions.

Unfortunately, I don't deal well with "what if" or "maybe" type responses. I gather that Vidaza only prolongs the inevitable with MDS? That life expectancy is only somewhere between 24 and 36 months? Does anyone have a feel for the answer to my questions.

So far no nausea or adverse side effects with Vidaza. Am grateful for that.

I think we all know how you feel and it is overwhelming at first but as it has already been stated many of those statistics are out dated. Research and treatment for MDS has come so far in the last few years and it continues to improve.
There are so many people that continue to survive it, much longer than those statistics state. My doctor doesn't give timelines etc, he says with all the improvements in treatment and how each patient is different, that he can't predict what may or may not happen.
In my case, I have had an unexpected and brillant response to a very minor treatment, which has brought my counts up to normal and allowed me to lead a normal life. And I have met others with other treatments that have had excellent responses and a much improved prognosis.


Lynn