Recently diagnosed son-in-law

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

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susiem48
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Recently diagnosed son-in-law

Post by susiem48 » 11 Apr 2013 15:45

Hi there everyone. My son-in-law who is 38 was diagnosed with MDS at the end of January 2013. It was a bolt out of the blue. He was a fit self-employed builder & plasterer, he began to feel very tired and breathless and so went to see his GP who suggested a blood test which was done on the Friday afternoon. The following morning he received a phone call from the local hospital who told him to get there A.S.A.P. where he underwent further blood tests and a bone marrow biopsy. The tests taken were driven by car to Leeds and we got the devastating results back that same day. He was admitted into hospital and given 2 pints of blood. He was then allowed home for a few days whilst a bed was found for him at Bradford Royal Infirmary.
He has just undergone his second course of chemo, he will be going back into hospital early next week for his third course. He has reacted very well to the chemo with no sickness and still with a very good appetite. After this next chemo he will have about 2 weeks at home once his count has come back up and then will go into St. James Hospital in Leeds for a Bone Marrow Transplant. His sister has come up as a match which we are very pleased about.
At the beginning I research the illness on line but soon gave up as it frightened and depressed me. I still am not sure what the success rate is of BMT. He is a very private person and it is hard to get him to tell you what the doctors have said. I don't want to discuss with my daughter either as it upsets her too much (they have only been married 20 months).
I would be grateful of anyone who could reassure me on any points.
Whilst in hospital it was also discovered that he had Factor 11 deficiency, which was another shock. He has also been told it is unlikely that he will be able to go back to building work.
Thank you for reading this.
sophie
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Re: Recently diagnosed son-in-law

Post by sophie » 11 Apr 2013 16:39

Hi Susie,
I just happen to see your message just now.
Your son in law is in the best hands possible in Leeds - they are one of the best places in the UK for the treatment of MDS.
We know the diagnosis usually comes as a big shock to patients and families - this is quite normal - and things will start to be less frightening in time, as you gain more information about treatment.
As you have discovered, it can be very scary to read general information about MDS on the internet - if you are not guided and look up every website mentioning MDS.
It is very important you and your family get access to the right information for your son in law's specific situation.
You need to be selective in what you read - and use reliable websites.
Please do check ours www.mdspatientsupport.org.uk

Please also give us a call to receive an information pack and suitable guidance on what to read.

We know of many MDS patients who have had a successfull transplant.
We recently had the 6th EBMT Patient and Family Day in London - where over 200 patients and relatives attended.

Soon, one of our transplant patients from King's - Russell Cook - will be running the London marathon. He had his transplant almost 2 years ago now.
Another patient - Donna had her transplant 18 years ago and doing extremely well.

A BMT does take time and it is a life changing experience - but it is a cure for MDS.
Do call us, then read up on the materials we advise, so that you can be the best support person you can for your son in law and your daughter.
They will need you to feed them information little by little and know that not all information is negative and frightening.
Not knowing is very often much worse than facts - as your mind works over-time and imagines the worst.

I look forward to hear from you or your daughter.
Warmest regards,
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
susiem48
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Joined: 11 Apr 2013 12:12
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Re: Recently diagnosed son-in-law

Post by susiem48 » 11 Apr 2013 19:37

Thank you so much for replying. I can't remember the type he was diagnosed with it might have been type 3 with 30% chance of it turning to Leukemia. His father had MS which turned to Leukemia and he died aged 66 as he didn't want chemo. I am now re-assured that he is in good hands in Leeds, he has received very good treatment in Bradford and the staff are superb. I will check out your website and ring for an information pack. He is very positive and hopes they may eventually have a family (he has had his sperm harvested).
One other problem at the moment is receiving benefits with him being self-employed, his McMillan nurse has been very good and managed eventually to get him ESA but this is something he could have done without the worry.
Thank you again.
chris
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Re: Recently diagnosed son-in-law

Post by chris » 15 Apr 2013 19:38

Hi Susie

There is not much I can add to Sophie's very informative reply but your son-in-law is a young, fit man and has a sibling who is a match and that is the best option as far as stem cell transplants go. Plus he is in a good centre for transplants. Have a look at Jayne Snell's posts on here and access her blog on Caringbridge as her transplant took place in Leeds and she is now fit and well after just over 9 months post-transplant.

Benefits for self-employed people are challenging but the Citizens Advice Bureau may also be able to help as well as Macmillan who are real experts in this. As you say, can do without the worry and I expect he is also concerned about the future if he has been told he may not be able to return to building work. Is this because the Factor 11 deficiency makes injuries and subsequent bleeding a hazard?

I hope you can support your daughter with this information and encourage her to contact Sophie. Sometimes knowing more can be reassuring - it is often the unknown which is frightening.

Our best wishes to your family

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
susiem48
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Re: Recently diagnosed son-in-law

Post by susiem48 » 15 Apr 2013 20:58

Hi Chris,
Thank you for taking the time to reply to my post also your good wishes, it is very re-assuring to know that Leeds has such a good reputation for this kind of treatment. My son-in-law is very positive about the outcome which must go some way to helping recovery. Yes the factor 11 is the main reason he is advised not to resume his building career and also the dust from plaster. I will look at the blog you suggest.
His MacMillan nurse has been very helpful and did appeal against a benefit decision which he has won.
Also I cannot thank the staff at Braford enough as their care and compassion has helped enormously.

Best wishes to you and yours.

Sue
chris
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Re: Recently diagnosed son-in-law

Post by chris » 16 Apr 2013 13:41

Hi Susie

Sorry, I forgot to add this great link to the Leeds website for transplants - recommended to us at the recent Bone Marrow Transplant Patients' Day.

http://www.allinex.org/

It is full of helpful information and advice and exudes confidence in their team. Hope it helps.

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
susiem48
Posts: 6
Joined: 11 Apr 2013 12:12
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Re: Recently diagnosed son-in-law

Post by susiem48 » 16 Jul 2013 19:44

Well it has been a long time since I posted my topic and a lot has happened. After several stays in Bradford Royal Infirmary and chemo we eventually found out that his sister was a match for a BMT. He went into St. James Leeds on the 22nd June and had 2 sessions of full body radiotherapy and chemo. His BMT took place on Friday 28th June, he was quite ill from chemo and had to have a nasal gastro tube fitted as his mouth was full of ulcers. But on Sunday 14th July he was allowed home, just 2 weeks 2 days post transplant. He has to go back tomorrow 17th for tests and for a long time to come, it will be a long haul but we have everything crossed that it will be a success and he will live a relatively normal life for many years.

Best wishes to everyone,

Sue
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Recently diagnosed son-in-law

Post by chris » 17 Jul 2013 18:23

Dear Sue

Thanks for updating us on your son-in-law. Let's hope he is over the worst and all uphill from now on. Must be good to be home and also good that he had a sibling match. Your daughter must be relieved to have him back home. He needs to keep out of the sun - shame in this lovely weather but there it is!

Best wishes to you and your family

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
susiem48
Posts: 6
Joined: 11 Apr 2013 12:12
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Re: Recently diagnosed son-in-law

Post by susiem48 » 17 Jul 2013 21:15

Hi Chris,

Many thanks for your reply. We know it is still an upward struggle and he isn't out of the woods yet (Jayne Snell'slast update) but we are all positive and hoping and praying.

Will keep the post updated.

Best wishes,

Sue
murrayfs
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Re: Recently diagnosed son-in-law

Post by murrayfs » 19 Jul 2013 09:33

Hi Sue,

my name is Fiona and I have had MDS (5q-) since 1999 and am now on drug treatments but at some point in future may require a BMT. I have read through your posts here and just wanted to add my best wishes for you and your family. Fantastic that your son-in-law's sister could be a donor. As both you and Chris have said there is still a long way to go but things are sounding really positive. All the best for continued progress! best wishes Fiona
Fiona - Female, age 52, diagnosed in 1999 with MDS 5q-. Currently taking Revlimid (Lenolidamide)
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