Mom Diagnosed with MDS (RA) with Trisomy 8

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Jammy G
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Mom Diagnosed with MDS (RA) with Trisomy 8

Post by Jammy G » 07 Mar 2013 09:30

Hello everyone

I was wondering if anyone knows anything about MDS with trisomy 8. My mom was informed yesterday that this is what she has - it has taken some time to be told exactly what she has. She has been having transfusions every three weeks and her haemoglobin level has been steadily rising.

The consultant has started her on cyclosporine which is an immuno-suppressant. Looking on the net, it appears it is usually used with another drug, but my mom hasn't been prescribed that one.

Does anyone know anything about this type of therapy for MDS. I cant find too much about it on the internet. Apparently, it doesnt have a "success rate" as such - it either works or it doesn't - it is totally dependent on each individual.

If anyone could shed any light on trisomy 8 and this form of treatment, I'd be extremely grateful!

Thanks in advance
Jameela
janetstanford
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Re: Mom Diagnosed with MDS (RA) with Trisomy 8

Post by janetstanford » 07 Mar 2013 15:11

Hello and welcome
sorry to hear about your mam such a stressful and difficult time
i think your best way forward is to speak to Sophie she will be able to advise you in the best direction to take she has been so helpful to so many of us on the forum :)
And what is unreal i have just about 1hr ago taken my first 150 mg of this drug i had not even considered it a treatment for me although i knew it was used for other conditions ....
i been prescribed 150 mg twice daily and i also have to take prednisolone 5mg x 12 = 60 mgs daily and also some anti sickness tablets 1 a day ....i have googled them and also had a few discussions with the doctor and and i have been informed they can be prescribed with different steroids but which i can not recall and there are 2 ...i think which depends on the condition
lets hope it works for both your mam and myself without too many side effects i have been transfusion dependent for so long now i find it so hard to think it may work but we may be LUCKY :)
yes it either will or wont work we have to remember we are the same but not the same
I found it useful to google red cell dysplasia /ciclosporin also it is made by novartis that may help
AS I SAY PHONE SOPHIE
GOOD LUCK :D
Janet
Jammy G
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Re: Mom Diagnosed with MDS (RA) with Trisomy 8

Post by Jammy G » 07 Mar 2013 15:47

Hi Janet

Thanks for your reply. My mom is currently on 75mg twice a day. She is seeing her consultant in two weeks time, so hopefully by then I will know the right questions to ask. Reading around the subject it seems that ciclosporin is normally given with ATG - as it appears (again from the internet) that this has a higher success rate. ATG seems to be quite severe and im not sure if it has anything to do with her age (she is 64) or whether they want to start with ciyclosporin first and see how it goes!! It is all very confusing!

I will give Sophie a ring - thanks for your advice and good luck with the tablets!

Jameela
chris
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Re: Mom Diagnosed with MDS (RA) with Trisomy 8

Post by chris » 12 Mar 2013 18:28

Dear Jameela

So sorry to hear of your mother's diagnosis. Yes, as well as contacting Sophie, it would be good to have some questions at hand at the next appointment to ask about the treatment and your mother's prognosis in respect of her MDS and Trisomy 8. Janet has a slightly different condition which has an auto-immune component so I am really hoping that it will be an effective treatment for her to improve the burden of blood transfusions which she has had for many years. In the booklet "100 Questions and answers about MDS", (sadly not currently available), it states that Cyclosporine may be used alone (i.e. not with ATG) in patients who may be too frail for ATG treatment or who do not wish to receive it. It does have side effects and interactions with other drugs which I am sure you can ask about.

I suppose one of your questions could be about how they know that there is an auto-immune component in your mother's case? You do not say where your mother's treatment is taking place but you are probably aware that there are several Centres of Excellence for MDS around the country and it is always possible to get a second opinion on the diagnosis and proposed treatment.

Do let us know how you get on at the next visit.

Best wishes

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.
Jammy G
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Joined: 24 Jan 2013 10:12
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Re: Mom Diagnosed with MDS (RA) with Trisomy 8

Post by Jammy G » 13 Mar 2013 09:23

Good morning Chris

Thank you for your reply. Yes, I have decided to have a list of questions ready for the next appointment, for example
1. Can my mom have a transplant - no one has even discussed it
2. Is trisomy 8 a "bad" thing?
3. Why do they not want to use ATG as well?

etc etc - Im still compiling as I go along!

My mom does have COPD - and I think this may be a factor - they just seem to be very "vague" about things.

My mom is currently being treated at the Heartlands Hospital in Birmingham - we did ask about being referred to the Queen Elizabeth but the consultant did appear to be very offended! So we thought we would have a go at this treatment and see what happens.

It just seems we have so many questions but not a lot of answers at the moment!

Best wishes
Jameela
chris
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Re: Mom Diagnosed with MDS (RA) with Trisomy 8

Post by chris » 13 Mar 2013 13:39

Hi Jameela

It's a shame that your consultant seemed to take offence at being asked for a referral to QE Hospital, Birmingham as that is a Centre of Excellence for MDS but there is also a good argument in favour of attending local hospitals as it is often more convenient - as long as they are offering approved treatments. It's something to bear in mind for the future I suppose.

Good luck with the list of questions. It may be possible to speak to a clinical nurse too who may be able to help with anything unanswered after your appointment.

Best wishes

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.
Sophie
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Re: Mom Diagnosed with MDS (RA) with Trisomy 8

Post by Sophie » 14 Mar 2013 10:37

Hi Jameela,
please do give me a call when you can.

Just to remind everyone - you have every right to be referred to a hospital of your choice - especially when you are dealing with a rare disease - which MDS is - and especially if you have a MDS Centre of Excellence nearby.

Never hesitate to call us!
Sophie - Patient Liaison
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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