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MDS Myelodysplastic syndromes

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  #1  
Old Wed Feb 29, 2012, 07:36 PM
CatherineJ CatherineJ is offline
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Location: London, United Kingdom
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Wait and watch? How long does it last?

My platelets have magically gone up to 102, and HGB to 13. Platelets have been in low 60s for months now and HGB hanging around 10.

Now my hematologist said I could be on wait and watch for five, ten, maybe fifteen years before needing a transplant. It's strange because there has been a big rush to find out what was wrong and I was having my blood tested every week, now it is every 6 weeks. I'm relieved, don't get me wrong, but I cant help but wonder what other people's experiences have been like with this disease and being on wait and watch. It's not a comforting thought to know that I will most likely need a transplant but I can't predict when.

Anyone willing to share their experiences with wait and watch would be really helpful.

Thank you and its rare disease day today, spread the word!
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25F, Dx RCMD MDS 1/2012, on wait and watch for who knows how long
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Old Thu Mar 1, 2012, 01:37 PM
Birgitta-A Birgitta-A is offline
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Watch and wait

Hi Catherine,
You are lucky to have so good counts! Patients with RA can have good counts though many of then need Aranesp or a similar drug. They can almast live as long as persons without MDS.

I have MDS Interm-1 too but had very severe bone marrow fibrosis at dx - I had probably had the disease during several years. I had to start supportive therapy at once to prevent the counts to be too low. Still I am grateful because I have been asymptomatic 6 years except when I had neutropenic fever 2007.
Kind regards
Birgitta-A
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Old Thu Mar 1, 2012, 02:32 PM
DanL DanL is offline
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Catherine,

Watch and wait is the worst good news that we can hear. On the one side it is fantastic because your disease is a) not progressing quickly and b) doesn't need to be treated aggressively. The downside is that you have to learn to live with the relative uncertainty that it brings - it could get worse at any time.

I have been in watch and wait mode for almost 2 years and live with very normal red and white counts, but my platelets hang out between 20k and 35k pretty consistently. Right now, watch and wait sounds great and my patience and familiarity has grown with the disease, so it is a little less unsettling.

I go in to get my blood checked every month or two, get a biopsy every 6 to 8 months.

dan
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Treated for MDS RCMD with grade 2/3 fibrosis. MUD-Allo transplant 2/26/14. GVHD of the gut, mouth, and skin. started Vidaza 08/18/2014 to fight off possible relapse.
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Old Tue Mar 6, 2012, 10:07 PM
Janice M. Janice M. is offline
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"Wait and Watch" Good and Bad

Hi Catherine,

I was diagnosed with low risk MDS in May of 2011. I was considered a great candidate for a BMT since I was fit and young for this disease, and this was the ultimate goal, when necessary. However, I have been in a "wait and watch" mode ever since, which is great news, but at times hard to live with. My HGB is almost normal, my WBC is at 2.2 and my platelets are at 42.

At first the "wait and watch" mode was difficult because you are waiting for the bomb to drop, sort of speak. You live on the edge waiting for your monthly blood test results to show that your life will now change and treatment will now be necessary.

I realize I am older than you and I have had my children so it might be easier to feel more relaxed, but I have been able to do just that, relax. I have learned to appreciate the everyday things in live much more. I enjoy running 5 km in the evening in my neighbourhood. Many times I look up at the moon and say "thanks" for still being able to have this opportunity.

I don't know what the future holds with this disease. I hope it will be 10 to 15 years before I need a BMT, but I become more comfortable dealing with the "wait and watch" mode of this disease. I hope this helps you!

Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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Old Wed Mar 7, 2012, 09:51 AM
Dick S Dick S is offline
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If you look at my tag line you'll see I've been on the watch and wait list for almost six years now.
I get my CBC every 3 months and my numbers ever so slowly creep on a steady downward path, which I guess is a good thing. 1/10th or so here 2/10ths there. Presently my HGB is at 10, HCT at 30, Reds at 3 and platelets at 74, but none of them are critical enough to warrant treatment. The V.A., where I go is controlled by Medicare because of my age, don't want to spend any money any sooner than they have to.
It is very aggrievating at times. I have a very high metabolism and my body can't seem to sustain on these numbers. The daily, constant fatique drives me crazy at times, but I've learned to live with it. I guess it it's better than the alternative.
Hang in there, I do.
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Dick S, diagnosed Feb. 2006 with MDS. BMB 4/29/08 Dx MDS RCMD 4% blasts.
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  #6  
Old Fri Mar 9, 2012, 05:32 PM
lindajo lindajo is offline
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I have been watching and waiting for 21 years. Transfusions have been infrequent.

As for Bone Marrow Biopsy's being painful that is up to pain tolerance level of the patient. Childbirth was much worse.

To me it stung for a little bit. About 30 seconds to 1 minute. Honestly not as bad as many other things. I don't take any sedation, because when I had it the first time the hangover from the sedation was much worse than the procedure. I have never had bleeding afterwards because they made me lay on pressure dressings for an hour which was almost enough time for a nap.

B-12 shots have helped me the most, Procrit didn't do anything but make me more tired. I haven't tried Vidaza or the new drug. I hope this helps. Linda
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  #7  
Old Tue Mar 13, 2012, 09:50 AM
CatherineJ CatherineJ is offline
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Hi everyone,

Thank you for your responses and support, it definitely seems like this disease can be volatile, unpredictable, and frustrating.

At first being told there was nothing to be done but watch and wait made me anxious, but I feel a lot calmer now.

I am feeling so much better lately, I even ran 6.5 miles last night! I havent been able to run like that in a year. My Hg is higher than it has been in a year. I don't know why all of a sudden I feel so much better, I was really struggling with fatigue, infections, night sweats over the past six months.

Linda- did you have your children while you had MDS? I have been wondering if I were to get pregnant if it could make the disease progress.

Dick- I think there are many troubling issues with health care in the US. My gp in the US kept telling me it was just stress even though my platelets were in the 80s and 70s. I got to London in October and had my blood checked again, and the gp immediately referred me to a hematologist because having platelets that low for months on end cant be caused by stress.

I have also read that fatigue isn't necessarily in direct relation to blood counts. I thought that was really interesting.

I guess that if I continue to feel pretty normal again, then watch and wait will be less stressful. Each of you are an inspiration to me to continue living life and to stay confident and positive.

Thank you again for responses!

Catherine
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25F, Dx RCMD MDS 1/2012, on wait and watch for who knows how long
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