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Mummybear

Hi

Post by Mummybear » 30 Jul 2015 18:17

I am very new to this forum.

My mother has just been dx with MDS and I am still in shock. She is currently receiving Supportive Care but there will be an Interdisciplinary Team Meeting to discuss her future treatment - and hopefully to have determined how aggressive her MDS is. She is 87 and both our daughters are getting married next year. I am hoping she will be able to attend. She has just had a blood transfusion but is still very tired.

We are fortunate that we are under Prof Warren at Addenbrookes in Cambridge so I'm sure they will do all they can for her. Apart from my husband and daughters she is really my only close living relative - and I'm very worried for her.

Thank you for letting me join. I am a Breast Cancer Survivor and am on their forum so I know what a valuable, knowledgeable and supportive thing it is.

Anne
xx
GeoffC
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Re: Hi

Post by GeoffC » 04 Aug 2015 17:59

Hi Anne

The diagnosis of MDS is always a worrying time as most people have no understanding of the condition or its implications and it is not always well explained even by the medical staff. You are lucky Mum is attending a centre of excellence I’m sure they will be supportive.
I think the most important thing to remember is MDS takes many forms and even the same type of MDS will have a different impact on each individual. With your mother’s consent you may need to find out what type of MDS she has and from then you may be able to work out with the doctors how and if it is likely to progress and importantly how quickly.
You will find posts on this site from many people who have been living with MDS for many years, so it is important to know what type Mum has.
You also need to ask about her blood count results which are important indicators of the symptoms that she may have to face in the future. Low neutrophils and she will be susceptible to infections, low platelets and bruising and unexpected bleeding can occur. But you can take steps to help once you know what the counts are. Main thing is steer clear of potential infections and avoid taking any unnecessary risks which might result in cuts or bruises.
As for the tiredness I’m afraid in my experience it’s always there. But you can learn to deal with it. I’m still working, although only 3 days a week and mostly from home but we each find our own way, and there is a useful fact sheet on this site.
Hopefully others will respond in due course, I suspect there are many people away on holiday just now.
Anyway, here’s hoping for some good news for you and Mum when you get the final details of the treatment plan.
Best Regards
Geoff
Geoff C. Age 66. MDS diagnosed June 2013. Type - RCMD with del 20q. Red cells just below normal range, low white cells and platelets. Transformed to AML 2016. Stem cell transplant Jan 2017. Currently still in remission. Lancashire.
chris
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Re: Hi

Post by chris » 05 Aug 2015 20:12

Hi Anne

Geoff has summed up really well the issues we all have with MDS. Every case is so different so please take time to get all the answers you need. I am also lucky enough to see Prof Warren at Addenbrookes 3 or 4 times a year and I always get a copy of the letter he sends to my GP after each consultation. This clearly sets out the diagnosis so your Mum (and you if she agrees) will get clear information.

There is a really active and supportive local MDS group which meets in Cambridge so do see if you and your Mum would like to go along It made all the difference to me after the initial shock of diagnosis.Details on this website or from Sophie.

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.
Kes
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Re: Hi

Post by Kes » 05 Aug 2015 21:32

Hi,

I hope the shock is beginning to wear off. It's great that you are so close to your mum. That will make all the difference to her. All the while while you are supporting her make sure you get some support too. I'm really pleased you found your way to the Forum.

I used to work in the NHS and part of my job was delivering bad news and then helping people cope and live with that bad news. One of the best things you can do as a family is live every day of your life. We are all terminal but not everyone accepts that or prepares for that yet when a life limiting illness is diagnosed people can start to die even though they have lots of life left in them. It's that temptation to wrap someone in cotton wool which comes with all the best intentions. Living with the emotional and psychological effects can be as challenging as the physical effects.

As long as your mum rests when she is tired and follows the advice of the medics, I'm sure with your love and care as well as your daughters, that she will find joy and happiness too.

I also echo the advice to ask lots of questions at your clinic visit. Make a list before you go in so you don't forget any. Also the Clinical Nurse Specialists (CNS) are a great source of support and advice.

A little about me I am 50 and have lived with MDS for 15 years. I have my ups and downs now but amazingly I still work full time. I hope that gives you some hope.

Take care

Kes
I was diagnosed initially with RA. Now I'm told it RCMD with hypocellular marrow. It seems I also have a big autoimmune component to my MDS with lots of accompanied joint pain[/color]
Mummybear

Re: Hi

Post by Mummybear » 10 Aug 2015 15:46

Just back from the clinic and, tbh, am a little disappointed and upset. We saw a locum consultant: mum's haemoglobin levels were up, platelets and white blood cells low but not worryingly so and no transfusion required. Because of her age she is high risk (can believe that) but in good health. Azacitidine not required yet. So the prognosis of 8-12 months was a bit of a shock.

Hoping that consultant just being very negative.

Anne
chris
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Re: Hi

Post by chris » 14 Aug 2015 11:36

Dear Anne

I can understand how upset you must be. Let me just say, though, that survival predictions for MDS are still relatively inaccurate because any figures are based on median survival which, being simply the middle figure, do not apply so well to people in the higher or lower range. A leaflet I read shortly after being dignosed with CMML ( a type of MDS) gave me a prognosis of 12-18 months. 7 years later, I am luckily still here!! Leaflet has now been changed!!! I am surprised you were able to get a figure from a consultant because, in my experience, they are understandably very cautious in this area!! Moreover, prognosis of survival times still relies heavily on data collected before the advent of new drugs for MDS. If your Mum's blood counts are looking good, there's hope that any deterioration will be slow and that the MDS can be managed by supportive care i.e. transfusions. If her other general health is good, that's all encouraging.

As Kes says, try to take each day as it comes and enjoy time with your mother. 87 is an age many of us with MDS would be mightily glad to see!!

Take care

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.
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