Diagnosed today

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red
Posts: 67
Joined: 22 May 2013 14:25
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Diagnosed today

Post by red » 18 Jun 2013 16:46

Hi All,
I've seen my consultant to day and he says I fit into the medium risk I have del 20q and translocation 1-9 My IPPS score is 1.
I have been told that my biggest problem is going to be infection. (Low platelets). I am on watch and wait I go back to see him in 2 months time.
I will be 70 in July and would like to know if there are any 70 year old MDS sufferers out there. Most of you seem to be in your early to mid 60s.
red
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Diagnosed today

Post by chris » 20 Jun 2013 11:53

Hi Red

Glad your appointment went OK and you got more information. Hope the questions helped!

I think you will find that low platelets mean more risk of bleeding and bruising but if you also have low white cells you have a higher risk of contracting infections. Do you know what your white cell counts are? Did the doctor tell you that this was likely to be a problem for you? It's good that you are still on active monitoring and not needing any treatment at the moment.

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.
red
Posts: 67
Joined: 22 May 2013 14:25
Contact:

Re: Diagnosed today

Post by red » 20 Jun 2013 20:22

Hi Chris,
Your suggestions for questions to ask the consultant were extremely helpful I added a few more and he was very forthcoming, my daughter went with me and it made the whole experience much better and she asked him questions too.
My white cell count is 3.32 and my Neutrophil count is 0.81. I am on 500 amoxicillin and 500 fluoxicillin for 10 days. The infection in my leg is coming under control and I finish the course tomorrow. The Haematologist says that infection is going to be a problem for me in the future. I have had numerous problems with infection in my skin in the past. I suffer from epidermolysis bullosa simplex, varicose vein eczema and occasionally I get psoriasis too. Also I get Basel cell carcinomas. I've had about 12 removed over the years, and one SCC. Apart from that I consider my self to enjoy good health, I go to the gym and go swimming. I'm told I look more like 60 than 70, which I will be in 2 weeks time. My motto is " Lifes for living".
Once more thanks for your help
Red
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
Jayne
Posts: 194
Joined: 16 May 2011 11:33
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Re: Diagnosed today

Post by Jayne » 22 Jun 2013 12:56

Dear Red

I love your motto!!

My advice to you is to stay as active as you can and keep doing the things you love. I am 43 so not in the age bracket you were asking about but I don't think age really matters on here, as we are all in the same boat, albeit we all have different variations of the disease.

Whilst I was on watch and wait I just continued life as normally. I know it is impossible to forget you are ill, but I did the best I could to continue as normal....and with hindsight I am so glad I did. One thing I would check is that you can swim and I think if you use a Jacuzzi, definitely check if you can.

Wishing you all the very best
Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
red
Posts: 67
Joined: 22 May 2013 14:25
Contact:

Re: Diagnosed today

Post by red » 23 Jun 2013 09:12

Hi Jayne,
Thanks for the advise,
I spoke to my consultant about swimming and he said I could as long as I don't have any infections but to take care.
I've always had a positive attitude and I'm hoping that this will help me cope with MDS. This will be my 6th different type of cancer.
I eat well and though I can't go for walks because of various problems with my feet going to the gym helps to keep me mobile.
Life is for living and as I've always told my friends "This is not a trial run enjoy the now!".
red
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
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