I would like to know if the vidaza ever stops working, do you know if we can have another treatment?
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Hi @Marie-Jo a great big welcome to our forum.
A good question but a difficult one to answer as the way a treatment works for one person can be very different to how it works for another as we are very special unique beings with unique medical histories etc.
The same thing applies really to whether you can then have a different treatment at that time depends on your situation and the treatments available.
However your medical team that know you the best are really the ones to ask your question too.
I look forward to hearing more about you and why you might have asked your question and what answer you get from your consultant, CNS (Clinical Nurse Specialist) or if not your GP might be.
Look after yourself.
In fact it’s not for me, it’s for my mother who has myelodysplasia and who is currently on vidaza but the treatment doesn’t seem to work anymore and I can’t resign myself to letting her go like this. Here the care team disappoints me enormously, we do not feel supported by anyone. Oncologists are very pessimistic and support us little. The oncologist already told me that when the vidaza doesn’t work anymore we have to let things go?? However, there are other treatments, so why can’t we try them? I am despairing frightened and very very sad.
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Hi @Marie-Jo it sounds such a difficult and horrible place that you are all in, I cannot imagine what you are all thinking and feeling. The emotions you mention sound so sad and very frightening.
Perhaps you might consider a second opinion or ask the hospitals PALS (Patient Advice and Liaison Service) help you both communicate with your mothers oncologist, if they offer that service.
Has your mother got a CNS or nurse specialist contact.
My trick is to be ‘pleasantly assertive’.
Unfortunately not all treatments or trials are appropriate for patients for different reasons.
I will copy your post to the Blood Cancer UK nurse advisors in case they can add anything @BloodCancerUK_Nurses
If this is true then perhaps you would be asking for details of Macmillan, Maggies and/or local hospice services from your hospital and your GP might know of local services that can assist.
The main thing is that you look after and be very kind to yourselves.
Please let us know how you get on, we are here for you
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I want to clarify that we are from Quebec, Canada. Here in oncology what is most deplorable is that it is never the same oncologist who deals with the file each month, it is a different oncologist so it is not easy, we cannot develop a relationship of trust with the doctor since it is never the same. And yes she has a pivot nurse but I really don’t like her contact does not pass with her. She has no empathy. And yes of course I’m in a lot of pain, I don’t know how I’m going to survive all this. Seeing my mother who wants to live and who is not ready to let go is extremely difficult.
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Hi @Marie-Jo thanks so much for clarifying that you are in Quebec Canada.
As you have realised Blood Cancer UK is a UK website so really not applicable for you unfortunately.
What of course we all empathise with is your despair and pain.
Please keep being pleasantly assertive with all the services available in Quebec.
Sending you both very best wishes and take lots of care of yourselves
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Hi Marie Jo
Sorry to hear your story…quite frankly that is not good enough by the people in place to take care of your mum.
Sounds to me like you are a caring person…most of us are.
But my advice to you is probably think out of the box a little and become a little bit less nice with these people…not nasty but go to the heads of the team and tell them what you have told us.
Dont make appointments…go up there and knock on doors if you have to …and say that you are not happy with the care your mum is getting.
I have had pretty darned good care on the whole but a couple of times had to do a little bit more to get heard…and it works
What have you got to lose
Wishing you all the best from the UK…Lee.
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Hi @Marie-Jo,
I am so very sorry to hear that your mums treatment has became ineffective for her disease. This must be such a difficult time for you all, particularly if you are not feeling overly supported by the treatment team.
I appreciate our guidance here in the UK will be somewhat different to that in Canada but in case it is helpful in any way i have linked here our information around Myelodysplastic syndrome (MDS) which includes treatments, supportive care options and also explores clinical trials- Myelodysplastic syndromes (MDS) - what is it, symptoms and treatment | Blood Cancer UK.
This may help facilitate a further conversation with your mothers treatment team to enable you all feel more supported with a clearer pathway of who will be responsible mums care moving forwards and what medical potions come next.
We also always encourage families to ask questions about
the possibility of clinical trials in your own country, if this has not already been discussed.
Please do let us know if we can support you any further- Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes, Lauran
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Hi @Marie-Jo
I understand there is a patient support group for Myelodysplastic syndrome (MDS) in Canada. They may be able to support you and give you information specific to Canada.
I hope this helps
Best wishes
ChrissyD
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Merci à vous, je connais déjà tout les sites sur le SMD
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