Anymore U 50'S out there ?

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Magsa13
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Joined: 17 Apr 2014 15:26
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Re: Anymore U 50'S out there ?

Post by Magsa13 » 19 May 2014 07:47

Hi again, well unfortunately my blast cells have increased so I am back to full AML so I will have 2 rounds of chemo prior to the transplant. I am due to go in next week and although I am more prepared this time as I know a bit about what to expect it also feels worse knowing what I am likely to go through. But I am up for another fight!!
murrayfs
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Joined: 10 Dec 2008 21:02
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Re: Anymore U 50'S out there ?

Post by murrayfs » 11 Jul 2014 12:21

Hi WBA man,

I was diagnosed with low risk MDS 5Q- in 1999 when I was in my early 30's. It had a drastic affect on my HGB counts making me very anaemic. At that time I was playing basketball for England, for a national league club and also for a local league team and so was very active. At that time there was very little in terms of available drug treatments but it is a very different story today.

I initially had to stop playing basketball altogether over a period of time as it just became too difficult. I have to say though I immediately felt much better by cutting out the punishing exercise regime, but obviously it was very disappointing to give it all up.

A few years later however, when I'd just started to need blood transfusions I was able to go on a drug trial for Revlimid which was very successful for me, boosting my HGB counts back to normal.

To cut a long story short I still take this drug today and can now participate in normal levels of exercise. Side effects mean I also have to take other injections to boost my white cell counts, but this is easy to manage. I didn't start playing basketball again, but can go to the gym, walk, swim etc.. normally so it's great. I still get a bit tired now and again, but I'm so thank full I can lead a relatively normal life again.

So what I really wanted to say here is often it's a case of trying to get to the best medical people you can to give you the best advice. I go to my local hospital in Walsall now every 2 months but also travel down to Kings College Hospital in south London every 6 months (this is where I really get the good advice).

There are new drug treatments coming about all the time so maybe there will be something out there for you at some point that can make your life easier too.

regards
Fiona
Fiona - Female, age 56, diagnosed in 1999 with MDS 5q-. (TP53 also) I had a stem cell transplant in 2020
LCoultrup
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Joined: 24 Nov 2013 18:47
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Re: Anymore U 50'S out there ?

Post by LCoultrup » 11 Nov 2014 14:23

Hi all my first post. I am now 51 but was diagnosed when I was 49 with first BMB AA I was then referred it Kings had another BMB and was actual lay diagnosed with MDS (RCMD) watch and wait originally as it was my platelets and neutrophils that were affected but earlier this year my Hb suddenly dropped to- had been on a hen weekend, partied hard for the weekend went to the hospital to be asked what I had been up to - it was down to 88 but I carried on playing badminton for a while but I did stop umpiring (netball) as it was too much for me I wasn't fit enough but also was v anaemic. I was watch and wait then when Hb dropped further started EPO . No improvement so had my first transfusion and then platelet transfusion as it was 11 and I was going to Switzerland. Prior to my trip started GCSF too and no great improvements really had another transfusion and although no one seems to agree with me I think EPO and GCSF seem to be holding me at asteady level. I did need another transfusion which bought it up from 84 to 113 and held it steady for a few weeks, stopped GCSF for another BMB and it dropped! Re-introduced and it is up slightly! Anyway kings have decided I am not responding to treatment and am heading for a RIC SCT probably Jan/February. I have modified my life as I must accept this is a long term condition but am hopeful that I loose a year but gain a life time. It is really important to try and maintain normality but within limits and remain positive. Good luck to all fellow sufferers, family and careers x
:D
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Anymore U 50'S out there ?

Post by chris » 17 Nov 2014 13:12

Hi there

Welcome to the Forum. Sounds like you have had an "interesting" 2 years since diagnosis. Do you have a sibling donor for your SCT or will they have to search the register for an unrelated donor? Whatever, you are in a great place for a transplant and you have youth on your side!

Hope all goes well for you. Keep us posted.

Take care

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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