Dad recently diagnosed

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

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northernone
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Dad recently diagnosed

Post by northernone » 20 Mar 2013 15:34

Hi all, I'm new to this forum and very confused! My dad was given a suspected diagnosis of MDS eight months ago. Having had monthly checks at the hospital they are now sure he has it. From the information he has been given and what our family have found out we gather he is RAEB-1 although we have not been officially told this. Everytime he goes he sees another consultant and no one seems to say the same thing! Basically all of his counts have remained the same for the past eight months and two bone marrow biopsy tests show no change either. The hospital are having a meeting to discuss the course of action although they seem very keen on a bone marrow transplant. Everything I've read about this suggests there is more chance of it being unsuccessful than it actually working? Is this right? And could he live a long time staying stable at this level. He is fit and well and this was only picked up due to a routine blood test. Just wondered if anyone can help with their experiences I'd be very grateful.
janetstanford
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Re: Dad recently diagnosed

Post by janetstanford » 20 Mar 2013 18:41

Hello
yes a very confusing and stressful time for you all i would suggest you phone sophie and she will be able to help and will point your in the right direction :)
i can understand your concern about seeing a different doctor every time i think i would voice your concerns and insist you see who ever your dad prefers and remember this a right to see and be treat by who and where you want
a list of questions would be good for your dad to ask the doctor and then you should get some answers i always request a copy of my blood tests and clinic letter i find this helps on the rare occasion i have had an issue if you can give dates and times and by who what was said HELPS TO JOG THE MEMORY :D
Cant comment on the transplant as illness and treatment effect all so differently would not like to speculate
But i am so glad your dad is so well and is doing great with that in mind i wonder why they would consider a transplant hmmm
no wonder you are all confused
and can i ask your name northernone are you from up north :?:
take care
Janet :)
northernone
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Re: Dad recently diagnosed

Post by northernone » 20 Mar 2013 19:33

Thanks for your reply Janet. My name is Kim and I am from the north! They have suggested a transplant as he is for and well and a good age for it apparently. They have basically said that they wouldn't want it to start progressing quickly or turn to leukemia when the option of a transplant could be available!? Thank you for your reply he is back there in two weeks so will help get a list of questions sorted and hopefully we will know more?
Kim x
chris
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Re: Dad recently diagnosed

Post by chris » 21 Mar 2013 11:42

Dear Kim

Sorry to hear of your Dad's diagnosis and the difficulty you have had in trying to get more information. I would also suggest you talk to Sophie and also write to the head of the haematology department and ask if you can have a letter which sets out the diagnosis. The other way would be to approach your GP as hospitals send letters to GPs outlining their findings so you could ask them for a copy. Why hospitals do not write to the patients themselves is beyond me - it is surely good practice to do so.

Have you read the article about stem cell transplants in the last Newsletter? If you haven't had this, ask Sophie for a copy or read it online from this website. The decision to go ahead with a transplant should be an informed one between your Dad and his doctors and they should be able to inform him of the benefits and risks in his case. Normally, it would only be contemplated if your Dad had a matched donor, preferably a sibling - though many have unrelated matched donors -and if the risk of his disease mortality was worse than the risks of transplant mortality. It is undoubtedly a hard decision to make. Also, do you know if your Dad is at one of the Centres of Excellence for MDS? You should find a list on this website or Sophie can tell you which is your nearest one. With such a rare disease, it may be better to go to a hospital which has experience of treating a larger number of MDS patients.

Hope you are able to get answers to all your questions.

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
northernone
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Re: Dad recently diagnosed

Post by northernone » 28 Mar 2013 18:04

Thanks chris for your reply,
I had a long chat with Sophie the other day which was really helpful. My dad is in newcastle so not being treated at a centre for excellence, however I live in London and we are hoping for a referral
To kings for a consultation to just get more info about his case and more
Info re transplants.
He is back at hospital on Tuesday the consultants are meeting tomorrow to discuss the best course of action for
Him so we will hopefully know a little more then. My big concern at the moment is my dad isn't really understanding the seriousness of it all or he does and is just sticking his head in the sand! He seems to think because all of his results have remained unchanged for the past eight months that that is how it will continue for the foreseeable! Anyway thanks for listening and thanks for all the advice.
Kim xx
chris
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Re: Dad recently diagnosed

Post by chris » 28 Mar 2013 18:44

Dear Kim

Having been posting on this Forum for many years, I now realise that head-in-the-sand can be a preferred coping mechanism for many people diagnosed with MDS. The disease can appear so complex that people would rather hand all the responsibility over to their doctors. Maybe, too, he is trying to appear nonchalant so as not to upset his family - being the strong one etc? He may be more concerned than he is letting on but trying to protect others. Plus people deal with life events differently and many people take a very positive slant on life and believe that it will all turn lout for the best! In many ways this is a great way to be but others of us like to find out everything and reflect on it in a more informed way - albeit that that can be more scary.

Hope that Tuesday's appointment is helpful and that the referral to Kings comes soon. Hopefully, that is something you could sit in on as you are in London? However, would a referral to Leeds be more practical for your Dad as and when more intensive treatment might be necessary? A long way from Newcastle I know.......

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
clareybabs
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Re: Dad recently diagnosed

Post by clareybabs » 29 Mar 2013 05:52

Hi there kim, i was diagnosed in november with raeb - 2 in november and am awaiting a stem cell transplant, which will be getting done in newcastle freemans. I have been having regular blood transfusions at my local hospital in darlington, then going to newcastle for pre-transplant appointments. Problem with dual care between the two hospitals is that they don't seem to communicate with each other, newcastle don't have a clue what my blood results have been for the past few months, even tho my HB has not been sustaining itself and my platelets have been continually dropping. When i spoke to my transplant co-ordinator about this, he said they only communicate with each other if there is anything untoward as newcastle only deals with transplant issues and my local hospital is for 'The Support', which i find ridiculous, i just felt out of the loop and feel it would have been better if i'd just been treat at one hospital that does supportive care and transplants - so whether these centre of excellences do i don't know.

I also felt that i wasn't getting to know anything about my condition, the communication was poor, after complaining, this has greatly improved. I suggest you ask loads of questions, make them aware that you want regular communication, letters if needed to keep you informed of your dads diagnosis.

Although i have had problems, i will be having my stem cell transplant at freemans, as i do have every faith in them, i am a nurse myself and i am aware of the stresses and strains doctors and nurses are under, lack of communication is always the main issue of complaints.

I'm under professor jackson, he seems to be a highly intelligent person, and knowledgeable in MDS, also teams would liase with other hospitals such as leeds/london to give the best possible care - just because its not a centre of excellence for MDS, there is protocols and procedures that every hospital will have to follow to provide the same treatment - they follow nice guidelines and obtain info from world heath organisation, to diagnose conditions.

It wouldn't harm getting a second opinion, but you wouldn't necessarily receive different treatment for stem cell transplant to someone in newcastle. Hope this helps.
CLAIRE - 42YRS - DIAGNOSED WITH MDS (RAEB) - POOR CYTOGENETICS WITH MONOSOMY 7 AND AN EXTRA X CHROMOSOME - getting supportive care at moment - weekly blood tests and regular top ups with blood, awaiting a bone marrow transplant
northernone
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Re: Dad recently diagnosed

Post by northernone » 02 Apr 2013 19:45

Thanks for your advice Claire my dad had his meeting today as they want him to have the transplant and it will be done at newcastle as well when or if it happens! I was under the impression that they wouldn't do it there but as I've just learned they have a large transplant unit at the freeman. He will go back nextonth to start the ball rolling. Hope you're well and I will keep you all up dated.
Kim xx
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