Hello from a new member of the club

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Hello from a new member of the club

Post by FJPL30 » 15 Oct 2020 12:07


My name is Frank and I've just joined the club of those diagnosed with MDS. In my case it is EB2 12% blasts and although I've had the diagnosis confirmed on the 30th September after a blood test, the cytogenetic results of the bone marrow biopsy are not in yet so no treatment plan. Based on the time frame given the results should be with the folks at Treliske (Truro) so I expect a consultants appointment in the near future. To be honest it came as a bit of a shock, I've been mildly anaemic for a couple of years now and the last test was quite anaemic with a count of 85. Feel fine apart from breathlessness after mild exertion and fatigue catching up with me mid afternoon. Mentally I'm ok although I get bouts of being a bit tetchy occasionally which I put down to the uncertainty of what the future holds. Looking forward to the forum this afternoon on zoom.
Have a great day all of you.
Frank Jones, 72 yo. Diagnosed 30th Sept MDS-EB-2.
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex

Re: Hello from a new member of the club

Post by chris » 20 Nov 2020 13:43

HI frank

Just saw you on the Zoom café which reminded me to check this Forum for unanswered posts and there was yours! As I said, I think Facebook has somewhat replaced some of the need for this Forum but I'm not a fan of Facebook so I'll reply on here if that's OK with you?!

Sorry to hear about your diagnosis of MDS EB2 and I hope that, by now, you have had your consultant appointment at Truro and know more about your cytogenetic results and treatment plans. It's all a lot to take in and I can sympathise with your tetchiness whilst waiting for the answers and dealing with your fatigue and breathlessness symptoms too! Was it you who made the comment at the meeting about wanting to punch somebody in the face when they suggested "it could all be easily sorted these days"!! I sympathise with that too! Once you get the results, it's always a good idea to speak to Sophie about anything you're not sure of. Of course, she cannot give you medical advice but it's sometimes helpful to talk through the options with others and she is particularly knowledgeable, having been the CEO of our charity for 12 years!

Hope your Exeter local meeting was useful too? As Andy said, we have a joint South East and East of England meeting coming up on 2nd December so you're welcome to gatecrash that if you want? It's not as busy as today's meeting so people get more chance to talk about their own particular circumstances. Registration details in this week's e-Newsletter.

Hope you're otherwise keeping well in your lovely part of the country. Our close friends lived in Countess Wear for a couple of years so we had a few trips down!

All best wishes

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
Posts: 63
Joined: 01 Apr 2015 10:15

Re: Hello from a new member of the club

Post by Goldtooth » 23 Nov 2020 10:30

Hey Frank,
I’m 76 and was diagnosed with MDS RAEB2 in November 2014.
For 3 years prior to that I was getting 4—5 sinus infections a year, my GP at the time was not worried!!
I was and saw an ENT consultant on a private basis who raised the question that my immune system was reduced. My GP disregarded this so I asked then consultant to refer me to a haematologist again on a private basis and I was diagnosed within a week. Blood test Monday, bone marrow biopsy Tuesday and results on Friday.
That depleted my life savings but well worth the money.
The same haematologist is treating me with Azacitidine 5 days in every 28 on the NHS. This is not a cure but will temporarily delay the onset of Acute Myeloid Leukaemia.
I’m now poor but still alive on 7/12 I start monthly cycle no. 78 of chemotherapy provided my pre chemo b/t on 5/12 shows no anomalies.
I consider myself very fortunate to still be alive.
It’s a very worrying time for you Frank and I can understand the anxiety and uncertainty you must be feeling.
Don’t give up or lose hope.
One of the most inspirational quotes I’ve ever read was by Franklin D Roosevelt “ when you come to the end of your rope, tie a knot and hang on”
Best wishes and good luck
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