mum newly diagnosed advice please

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Lynnb
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mum newly diagnosed advice please

Post by Lynnb » 24 Apr 2014 19:35

Hi New to this site. Mum just diagnosed aged 75. She hasn't been told type yet. Can anyone enlighten me when I search on Google seems to come up with cancer leukaemia. I know this can be a precursor to leukaemia but are all Mrs cancers of the blood. At 75 I assume they would only treat symptoms and not do a bone marrow transplant. I will ring Mrs helpline but thought I would ask here first. I have a bit of a medical background but I'm confused. :(
chris
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Re: mum newly diagnosed advice please

Post by chris » 25 Apr 2014 16:57

Dear Lynn.

Hope you have managed to contact Sophie at contact no on this site? You will find her really supportive and helpful. Until you have the full diagnosis, my advice would be to hold back on Dr Google as MDS is a very variable disease and not all types carry a high risk of progression to leukaemia. I agree, very unlikely that stem cell transplant would be an option for a 75-year-old but the upper age limit is changing all the time. There are a wide range of treatments available - mostly supportive. Do also read the What is MDS? section on this website.

Wishing you and your mother well.

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
Lynnb
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Re: mum newly diagnosed advice please

Post by Lynnb » 25 Apr 2014 22:19

Hi Chris many thanks for your response. Yes spoke to Sophie today and she gave me lots of useful info. Will hopefully find out type and risk catagory when we go back in July. Never heard of this until tuesday steep learning curve. Best wishes to you and hope you stay well
red
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Re: mum newly diagnosed advice please

Post by red » 27 Apr 2014 12:52

Dear Lynn,
I'm 70 years old and have MDS I have the -20q with transposition from 1-9. I felt completely lost when I first spoke to my haematologist and he was not very helpful or informative. Don't despair you've done the right thing contacting Sophie. I was told little at my first appointment after my bone marrow test and told to come back in 4 months when they would have the results from the test showing the genetic markers. I decided to ask for an earlier appointment and I was also advised by members on the MDS Forum to take a list of questions with me. which I did and I also took my daughter too. This was a much better consultation and although some of the information was a little frightening it helped me to cope.
I have an IPSS score of 1 and am on watch and wait. My Neutrophils are 0.78 and my Platelets are 51.

I have a wonderful friend who is encouraging me to have holidays and to go out and do things. I'm off to the Isle of Wight on the 5th of May for 5 days.
Keep your chin up and if you or your mum would like to contact me by phone or email please do.

Hugs,
Winnie (red)
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
Lynnb
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Re: mum newly diagnosed advice please

Post by Lynnb » 27 Apr 2014 22:44

Many thanks for you response Winnie (Red) I may and go to the hospital o speak to the specialist nurse tomorrow. She was not in clinic last week when mum was diagnosed. We are supposed to have her contact details in case mum gets ill. May ask for an earlier appointment so we can get the type. I am hoping mum is in the low risk group. One we know we will have an idea what we are dealing with a bit better. Hope you have a lovely break in the isle of Wight. Keep well. Lynn.
red
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Re: mum newly diagnosed advice please

Post by red » 28 Apr 2014 11:55

Hi Lynn,
I don't go on holiday until next Monday so feel free to contact me and I'm back on Friday (away 5 days) I strongly suggest you make a list of questions to ask the staff in haematology, before you go. If you look back on my posts you will see the list of questions Chris suggested for me to ask. I found it extremely helpful. By the way where do you live? I'm in Glastonbury.
Love and hugs to you both,
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
red
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Re: mum newly diagnosed advice please

Post by red » 28 Apr 2014 15:52

Dear Lynn,
This the list of questions I asked my haematologist:

Questions to ask the Consultant

1. What are my blood counts and which ones are problematic for me and will one or all of the others deteriorate?
2. What does this mean for me in terms of quality life, e.g. fatigue/susceptibility to infection/bleeding/bruising?
3. Are there any special precautions I should take because of these diagnosis, e.g. dietary, lifestyles?
4. What is my MDS sub-type?
5. What is my IPSS score and can you explain what it means for me?
6. Do I have any chromosome abnormalities and if so what are they?
7. What treatment (if any) is indicated and when will that start?
8. What are the risks and benefits of the treatment?
9. How am I likely to benefit?
10. What are the side effects?
11. How safe is it?
12. If I have to have transfusions or treatments can they be done at my local hospital, West Mendips?
13. What can be done to help relieve the side effects?
14. If active monitoring is suggested, how frequently will that be and where can it take place?
15. What follow-up will I need?
16. What happens if I don’t have any treatment?
17. What if I change my mind?

Hope this is helpful.
Hugs,
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
Lynnb
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Re: mum newly diagnosed advice please

Post by Lynnb » 30 Apr 2014 22:36

Many thanks Red. Will write those down. Quite difficult to understand about sub groups etc. Slowly gaining a nit more understanding. Mum got a copy of a letter sent to her go yesterday and from what I can understand only het platelets ate affected currently. Did also mention low risk. Need to study the letter and see what else it says. We ate in hertfordshire. Best wishes.
Lynnb
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Re: mum newly diagnosed advice please

Post by Lynnb » 30 Apr 2014 22:38

Sorry predictive text!!!!
chris
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Re: mum newly diagnosed advice please

Post by chris » 01 May 2014 18:07

Hi Lynn

Love the predictive text errors. What did you eat in Hertfordshire?!

Take care and hope good news about low risk status is confirmed.

Best wishes and hope you don't mind the light-heartedness. I feel in playful mood!!

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
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