Gavin - Just diagnosed

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

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christina
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Re: Gavin - Just diagnosed

Post by christina » 26 Mar 2013 14:48

Hi Gavin good luck for wednesday, was hoping to meet up with you on the 8th, but maybe meet you at one of the forums in the future, I hope you get all your questions answered Regards Tina
chris
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Re: Gavin - Just diagnosed

Post by chris » 27 Mar 2013 12:49

Hi Gavin

I expect you are already up at King's so hoping you get all your questions answered today. Do let us know. Yes, you can find so much information that is confusing and it's down to you to know when to call a halt!

Monosomy 7 certainly seems to be a factor prompting the option of a stem cell transplant - especially in young patients. Is this your only chromosomal abnormality? Interestingly, both stem cell transplant and treatment with Azacitidine seem to "fix" the abnormality. Your doctors should be able to tell you what effect having this abnormality has on the outcome of a stem cell transplant procedure. I think King's probably does the highest number of SCTs in the UK? In which case you are in expert hands so try not to worry too much - difficult I know - but take heart from Jayne's, John Watson's and Ken Grainger's blogs on CaringBridge.

Are you able to come to the EBMT Patient and Family Day on 6th April? That might give you some more information and support from those who have gone through a stem cell transplant? I am going, Jayne is and possibly some others from this Forum.

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
GAVIN1976

Re: Gavin - Just diagnosed

Post by GAVIN1976 » 03 Apr 2013 22:33

Just back from another app......donor been found and looking to go ahead with transplant in next 4-6 weeks....will know re dates later his week....

Nice to think this is moving forward, but scary at the same time the whole transplant t hing, but I know there are so many positive stories out there....will keep you posted when I know more!
chris
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Re: Gavin - Just diagnosed

Post by chris » 04 Apr 2013 20:22

Hi Gavin

Thanks for your post and your update. Are you coming to the EBMT conference in London on Saturday, April 6th. It's only £10 and I'm sure it would be a really worthwhile day for you in view of your own imminent transplant? Register soon (like now!!) if you do want to come.

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
GAVIN1976

Re: Gavin - Just diagnosed

Post by GAVIN1976 » 15 Apr 2013 20:56

Unfortunately was unable to attend the conf which was a shame.....just heard pre conditioning and then transplant due to take place week of 20th May.....got all the pre transplant tests first week of May so things really starting to move forward now. Still very hard to get my head round all this when I feel so well, but t has been pointed out to me the urgency in ths due to te monosomy 7 in my case....
chris
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Re: Gavin - Just diagnosed

Post by chris » 16 Apr 2013 13:31

Dear Gavin

Sorry you weren't able to make the conference. It was a really useful day for me and very reassuring to hear from all these experts who take such good care of us through this process.

Presumably a good match has now been found for you? From what was said at the conference, they feel results are better if the transplanted stem cells have less to deal with in terms of leukaemia cells , and your youth and fitness are in your favour - though, as you say, it must be hard for you to embark on this when you feel well?

A website was recommended for info about the stem cell transplant process:

http://www.explorebmt.org/

Also, Antony Nolan have brought out a good publication about after the transplant. It is called The next Seven Steps and you should be able to get a free copy from them.

Hope all goes well for you. Keep in touch.

Kind regards

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
GAVIN1976

Re: Gavin - Just diagnosed

Post by GAVIN1976 » 11 May 2013 17:28

Final medical tests done aswell as another bone marrow biopsy...ouch!!...and consent form signed.. So now Hickman line fitted 20th may and the go into hospital 22nd may to start chemo, and transplant scheduled 30th may. All seems so close now.....be glad to get this out the way!
Claire
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Re: Gavin - Just diagnosed

Post by Claire » 11 May 2013 21:15

Hi Gavin - just want to say good luck. Thinking about you and sending lots of positive vibes.

Take care!

Claire x
Sarah Reakes
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Re: Gavin - Just diagnosed

Post by Sarah Reakes » 13 May 2013 09:33

Hi Gavin,

I haven't posted to you before but I have been keeping an eye on your progress and just wished to offer my good wishes to you for your impending transplant and a successful outcome.

I expect you have read Jayne Snell's blog and I'm sure that will be very encouraging for you. Just keep as positive as possible and my advice to you is if you have any concerns at all then do ask the medical team; it's routine to them but completely alien to you and sometimes they can tend to forget this, so don't be afraid to ask. You are being treated at one of the best MDS Centres there are in the UK at Kings so you are in good hands.

Will be thinking of you.

Take Care.

Sarah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
chris
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Re: Gavin - Just diagnosed

Post by chris » 14 May 2013 12:55

Hi Gavin

Just to add my own good wishes to those others have posted. You're in a centre with huge experience of SCT. It won't be a walk in the park but you're young and have everything on your side. Yes, you must be keen to get on with it all now - new start, new you!! Keep us posted - those of us with SCT lurking in the shadows are hungry for good news about it!

Very best wishes for a successful outcome

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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