Hi and Hello

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PSRNE30
Posts: 19
Joined: 16 May 2018 10:00
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Re: Hi and Hello

Post by PSRNE30 » 05 Sep 2019 09:53

Hi Again,

Well it is now 14 months since I started this thread introducing myself, my condition and my fears. Allot has happened during that time not only in my life but also in those of you that have joined in to natter, pose questions, and generally confirm that you are not the only person affected by one of the numerous horrible and unsympathetic types of MDS.

My story continues but I have begun a new Chapter called 'Remission' and after some thought and internal argument I have decided to leave the the thread to those of you who continue to fight and battle courageously.

I have received in the main, huge support from posters and I Thank you for all your best wishes and in return I wish you all every strength and best wish for the future.

I may well be back at some point asking more questions and posting updates but until the next chapter begins;

Take care and Good luck.

Paul
PSRNE30
Posts: 19
Joined: 16 May 2018 10:00
Contact:

Re: Hi and Hello

Post by PSRNE30 » 05 Sep 2019 09:53

Hi Again,

Well it is now 14 months since I started this thread introducing myself, my condition and my fears. Allot has happened during that time not only in my life but also in those of you that have joined in to natter, pose questions, and generally confirm that you are not the only person affected by one of the numerous horrible and unsympathetic types of MDS.

My story continues but I have begun a new Chapter called 'Remission' and after some thought and internal argument I have decided to leave the the thread to those of you who continue to fight and battle courageously.

I have received in the main, huge support from posters and I Thank you for all your best wishes and in return I wish you all every strength and best wish for the future.

I may well be back at some point asking more questions and posting updates but until the next chapter begins;

Take care and Good luck.

Paul
chris
Posts: 602
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Hi and Hello

Post by chris » 06 Sep 2019 09:26

Dear Paul

Wishing you the very best in your new "chapter". I wonder if you will ever get any answers on your very unusual situation but I guess you just have to be thankful and move on. I'm sure those of us who are curious about these medical mysteries would appreciate any explanations that come your way so please come back for one last post if that ever happens?!

Take care. Keep well and thank you for all YOUR posts and support.

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
DTUB10
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Joined: 20 Aug 2018 14:00
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Re: Hi and Hello

Post by DTUB10 » 27 Oct 2019 20:53

Sorry you are leaving Paul. Best wishes for the future and hopefully you will have no need to return,

I am doing well at the moment. The chemo was discontinued after three cycles because my biopsy showed that I was back in remission and my chimerism was up to 99%, so it looks as though my transplant has been rescued.

Since then my blood counts have been erratic, but they are gradually improving, with frequent and inexplicable drops.

I been having bone marrow biopsies about once a month and I am plagued with GvHD of the gut, skin and eyes, but it is worth the price. The doc is thinking about a top up of stem cells to boost my platelet count.

Thanks for listening to my story. I hope it can be of some help to those on a similar journey. Never give up and keep your focus on the future.
David Age 60(M) dx MDS Aug 2018 no genetic mutations. Progressed to AML with FLT3 in Oct 2018. Three rounds of chemo. SCT Feb 2019. Relapsed June 2019 - Now on Azacitidine, Venetoclax. DLI to boost the SCT has caused skin GVHD.
christina
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Joined: 07 Mar 2013 11:22
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Re: Hi and Hello

Post by christina » 28 Oct 2019 17:05

So brave having so many bone marrow tests, have over the years had quite a few but my last one last week was the worst I'd ever had and don't think I'd be able to go through it again, good luck with everything Christina
chris
Posts: 602
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Hi and Hello

Post by chris » 08 Nov 2019 09:13

Hi David and Christina

Glad you're doing ok, David. Like Christina, I don't envy you having such frequent bone marrow biopsies! And, Christina, so sorry that you had such a painful one last time. I hope you've got the results by now and that they are encouraging.

I've just had some Next Generation Sequencing performed on a blood sample. It has revealed a mutation which we didn't know about - because this test was not available until recently. So nobody knows if it's been here all along or if it's appeared recently or at some point in the last 11years! A bit unsettling but they will keep an eye on it and repeat the NGS in 6 months time.

Has anybody else had this test done and did you get new information as a result?

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
PGEX22
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Joined: 19 Aug 2019 10:58
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Re: Hi and Hello

Post by PGEX22 » 25 Nov 2019 12:12

Hi Christina and Chris. Thanks for replying to my message. I am currently in Derriford Hospital after having my SCT on the 21st November. I know it’s only day +4, but other than overwhelming tiredness and a pretty sore mouth I feel I’m doing really well. Hope all is good with both of you. Pat
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