Hi and Hello

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PSRNE30
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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: 20
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
chris
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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.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.
DTUB10
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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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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
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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.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.
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
SRPE6
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Joined: 10 Jul 2020 21:04
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Re: Hi and Hello

Post by SRPE6 » 07 Aug 2020 20:15

Hi I am Sammii I’m 41 just been diagnosed really can’t seem to get my head around it all and my emotions are a roller coaster. I’ve tried talking to my family but I don’t feel they believe me me. Any help or advise would be great and I’d love to here from anyone around my age with this and help me understand what to expect next.
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Hi and Hello

Post by chris » 07 Aug 2020 22:21

Hi Sammii.
Sorry to read your post. It must be really difficult to understand what your diagnosis might mean. This is quite a rare disease. If you join the MDS group, you will get an information booklet which may help your understanding or look on this website for explanations. It's all free. You should get a copy of the letter from the hospital consultant to your GP and you can show this to your family so they can understand what your diagnosis is.

Have you had a bone marrow biopsy? This will help to determine what type of MDS you have and what treatments are available.

Hope this helps

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.
PSRNE30
Posts: 20
Joined: 16 May 2018 10:00
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Re: Hi and Hello

Post by PSRNE30 » 02 Feb 2021 22:26

Hi Again,

It seems I just can't stay away, as much as I want to.

Well towards the end of my posts some on here were asking for updates following the 'improvement' of my condition and any news regarding developments. Well in a nutshell, after initial diagnosis ( see early posts) things became typically rubbish but after a period of time and just before undergoing a SCT my counts started to creep up. The minds at my local hospital and the Northern Cancer Care Centre agreed to wait and see. Things improved and I maintained a satisfactory range of cells to the surprise of the medical staff and a particular member on here who remarkably suggested in their opinion, I had been misdiagnosed (which led me to close this post and leave the Forum).

So after an 18 month sabbatical I am back with vengeance; low counts, transfusion dependent, and an admission date of 18/02 with transplant on 24/02/21.

Which brings things up to date.

So I hope all are continuing the good fight to stay sane and stay safe.

My very best wishes to those with whom I chatted (espec DTUB I hope your garden was a riot of colour in the summer) I hope you are all well in these days of strange.

At this moment in time I do not intend continuing to post but who knows.

Best wishes to all, Paul
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