Hypoplastic mds

Please post here your experiences of MDS as a patient, carer, family or friend

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AlanF
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Hypoplastic mds

Post by AlanF » 24 Jan 2013 22:30

My wife is a sufferer of the above and has no matches for a BMT. Transfused twice weekly with 2 units platelets each time range between 10 and 120, transfused with 2 units of blood fortnightly Hg 9 to 11.5, neutrophils between 0.1and 0.5 . Platelets have to be HLA matched due to antibodies. Has had Horse Serum ATG in October no response. Diagnosed last February aged 53. Has been treated by RUH Bath and also been referred to Prof. Judith Marsh. Is there any one out there that has similar condition with any guidance ? How long can she survive on supportive care alone?
chris
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Re: Hypoplastic mds

Post by chris » 28 Jan 2013 11:49

Dear Alan

So sorry to hear of your wife's diagnosis and the amount of supportive care that she currently needs. It must be all-consuming for you both at the moment. To my knowledge, there were a couple of people on this forum with hypoplastic MDS - abbey farm (Fiona) and GAVIN 1976. However, I now know that Fiona's turned out to be a mis-diagnosis and she has something else which is actually treatable! It might be worth trying to contact Gavin. If you private message him, it goes into his personal e-mail so it isn't dependent on him checking this Forum.

Please do contact Sophie Wintrich for support and information. Prof Judith Marsh is highly thought of regarding Aplastic Anaemia and she will be able to give uo the information you seek regarding prognosis and the possibility of any other treatments. Stem cell transplantation is getting more and more sucessful and maybe searching for a Matched Unrelated Donor on other donor banks would be a possibility for your wife? This again is something you can discuss with Prof Marsh? When is your wife's appointment with her?

I hope you can get some more support and information. It might also be worth seeing if there are any local meetings in the South West. Again check on this website or ask Sophie for details.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janetstanford
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Re: Hypoplastic mds

Post by janetstanford » 28 Jan 2013 14:08

Hello
i do agree with Chris you should contact Sophie she will be able to help and i am sure the other members will be glad to help if you contact them
and if this helps i have Aplastic Anemia blood transfusion dependent and when first diagnosed i had issues with all cells within the bone marrow to be honest my marrow was producing little of anything as the cancer NHL (low and high grade ) had taken over thankfully after treatment all grew back but my white cells do misbehave :x little blighters
So if you want to contact me ask questions about anything ( can not guarantee that i will know the right answer ) please do so even if its just for support :) i will try to help
hope your wife is positive and well
take care Janet
AlanF
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Re: Hypoplastic mds

Post by AlanF » 28 Jan 2013 19:53

Thanks Chris and Janet. We have had 2 appointments with the Professor and have had email contact with Sophie. I have also sent Gavin1976 an email, let's see what happens from here.
Alan
GAVIN1976

Re: Hypoplastic mds

Post by GAVIN1976 » 29 Jan 2013 22:50

Hi Alan and firstly sorry to hear of your wifes news.

I was diagnosed with Hypolastic MDS in Oct 2012, and I am now awaiting a bone marrow transplant. I am under Kings at mo and have been advised a 4-6 month wait.....meanwhile I am not being transfused....Hmg is at 7.7 but I am managing on this although short of breath on any excertion...so docs want to try and avoid transfusing as feel I will become dependant on it very quickly...

Neutrophils are at 0.3-0.5

Was she advised of any timescales for BMT before it now going on for a year?

Lets stay in ctc and keep posting any updates or anything you would like to know if I can help, more than happy to do so
AlanF
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Re: Hypoplastic mds

Post by AlanF » 30 Jan 2013 14:03

Hi Gavin, thanks for replying. Unfortunately Theresa has rare HLA antibodies within her blood make up and as a result she does not have a match with her 3 siblings and even the very few 9/10 matches worldwide have been discarded because of the risks involved.
Whilst her paltelets were very low back in May she had a fever and suffered a Subarachnoid Haemorage, fortunately it was controlled and as a result her paltelets must not fall below 20 and this is why she has 2 units twice a week. She has recently been on some form of antifungal medication which has knocked her for six, finding it difficult to even get out of bed (so much for quality of life) she has made the decision to stop this medication and will now have to have an intravenous drug 3 times a week - yes a third visit each week to the hospital.
Since the ATG treatment which can't cure her condition (only has a 50% chance of making her less platelet dependant) the only benefit seems to be her neutrophils have gone from 0.1 to around 0.4, HG and paltelets are not improving. I think she may have another ATG (but a second treatment has less than 30% chance of "success") followed by perhaps another visit to Prof. Marsh who we have seen twice before and has a great deal of input into her care regime. Who knows she may put Theresa forward for a Haplomatch (we have 2 sons).
In total last year from the 29th February when she was first dianosed she spent 85 days in hospital as an inpatient (6 admissions) until the end of the ATG treatment , continually being re-admitted through A & E with infections, touch wood no infections now since November.
It sounds as though things are looking more promising for you, but Theresa fully appreciates the low HG feeling. Anyway hope all goes well, must stay in touch
Regards Alan
AlanF
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Re: Hypoplastic mds

Post by AlanF » 30 Jan 2013 14:07

Gavin,
Should always check my spelling - can't believe I spelt Platelets wrong 3 times!!
Alan
chris
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Re: Hypoplastic mds

Post by chris » 31 Jan 2013 14:11

Hi Alan

Don't worry about the spelling!! You might start a new craze - perhaps you were thinking of Gwyneth Paltrow! I always type MY OWN NAME WRONG!! How bad is that?!

Yes, Theresa's (and your) quality of life is very much affected by all the supportive care treatments she needs and to come off something that she knows is making her feel worse was a brave decision. It's always a question of balancing risks and benefits with so much medication on offer for this disease. Is it at all possible for the hospital to co-ordinate Theresa's different treatments so they are all done on one day to leave you to have some treatment-free days? Glad that she has managed to keep her infection rate down. Lots of handwashing and gels and keeping well away from crowded places, children and people with obvious infections. I have banned social kissing and I really think that these measures do make a difference. She can't afford to be blase with such a low neutrophil count.

I found another forum which had some reference to hypoplastic MDS and you might like to look on that for more support and information.

http://forums.marrowforums.org/showthread.php?t=1384

I did wonder whether rabbit ATG might be an option for Theresa if horse ATG has failed? Research seems to show that generally horse is more effective but it may be that sometimes rabbit works where horse hasn't? Could be worth asking Prof Marsh about?

Also, Kings have done quite a few haplo-identical transplants and I think they are becoming safer and more successful if a full match cannot be found. See Russell Cook's posts. He had 2 matched stem cell transplants which failed but has recently had a haplo from his son and is doing so well that he is running in the London Marathon this year!!!

Hope you get some good news soon.

Best wishes
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
AlanF
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Re: Hypoplastic mds

Post by AlanF » 05 Feb 2013 21:24

Hi all,
Just an update, Theresa and I met with our consultant this week and she is worried that T may become refractory to her platelet transfusions i.e. should her platelets fall really low and she suffers a bleed then they are worried that platelets may not do what they should do. The regime at present is now to reduce her transfusions to 1 bag twice weekly which will mean her trough level will stay around 20 which worries us a tad as she suffered the subarachnoid haemorrhage when her platelets were low. The consultant is still relying on input from Prof. Marsh but they will perhaps see if the levels hold at 20. Still relying on blood at a rate of 2 units a fortnight. One plus is her neutrophils are around 0.5 and she has been infection free since October , so there has been evidence of some small improvement since the ATG last year. Cyclosporine has been reduced to 25gm twice daily as kidney readings were low.
Her employers have been brilliant but even they are thinking of letting her go after a solid year, no pay now just ESA at the higher rate. We have tried to get her old pension trustees to grant her early retirement benefits on the grounds of ill health, but they don't seem to understand that there is no black & white with this illness, T is incurable and it is highly unlikely that she will ever return to work, but they don't seem to want to pay a year early without further info from our consultant only a BMT will do but highly improbable to find a match with her extremely rare HLA antibodies, even if a miracle occurred tomorrow we would still be talking at least another year. The consultant has also recommended she see a clinical psychologist because of the pressures we have undergone in the last year. As if the illness wasn't enough we had dreadful problems in A&E last year and are still carrying through a complaint, one positive is that since our complaint things have improved there but I hope it's not because her name "flags up" something on the system as this would be unfair to others who pass through the system!
Does anyone have any good news/info on successful long term supportive care?
Kind regards
Alan
chris
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Re: Hypoplastic mds

Post by chris » 10 Feb 2013 13:39

Dear Alan

Thanks for giving us an update. It's good that Theresa's neutrophils have shown improvement as being infection-free must be a great relief.

Sorry to hear about the employment and pension issues - as if there wasn't enough to worry about! Hopefully, once her employer has evidence from the consultant that she is unlikely to be able to return to work, the pension provider will have to accept that as a reason for paying out the pension early on ill-health grounds. The need for so much supportive care must rule out much time for working and that need for treatment isn't going to go away unless a BMT can be done.

Some of the people on the forum have found it very helpful to be able to see a clinical psychologist to help make the psychological adjustment needed to deal with all the issues of a difficult diagnosis. There is an article in the MDS Newsletter which is coming out soon so I hope you will get a copy and will both find it helpful. You should also be able to read it on this website. I think it would also be supportive for the relatives who are having to deal with the implications of this illness too. You are clearly very involved and supportive in Theresa's care and it all comes at an emotional cost.

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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