My mum is now 70 years old and has had multiple myeloma for 6 years.
My dear mother has just been told that things are looking grim again and pomalidomide (Pomalyst, Imnovid) is the last treatment they can try. We are so scared its unreal. She was on similar treatment a few years ago and it worked for a year without complications.
The bottom line is ... if this last treatment stops working, that's it.
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Re: Pomalidomide - last-try treatment
I am sorry to hear you needed a journey of treatments. Have you looked for a clinical trial? I was informed of this website that allows you to search for clinical trials of any sort, including trials for multiple myeloma. Also, you can search by location (country, region/state, etc.)
Wishing you the best.
https://clinicaltrials.gov/
Wishing you the best.
https://clinicaltrials.gov/
Re: Pomalidomide - last-try treatment
I hope your mother does well on pomalidomide, sazjo.
If you want to search for myeloma trials at clinicaltrials.gov, just go to the Advanced Search page,
https://clinicaltrials.gov/ct2/search/advanced
and type "myeloma" into the "Conditions" field in the form that you'll see. You also can choose to restrict the search to a country or state by going down to the "Locations" part of the form and making choices from the list. I also find it helpful to restrict the search by going to the "Recruitment" part of the form and specifying "Open Studies."
When you are finished with the form, just press the "search" button. You'll be surprised often at how many trials will come up.
Best of luck to you and your mom!
If you want to search for myeloma trials at clinicaltrials.gov, just go to the Advanced Search page,
https://clinicaltrials.gov/ct2/search/advanced
and type "myeloma" into the "Conditions" field in the form that you'll see. You also can choose to restrict the search to a country or state by going down to the "Locations" part of the form and making choices from the list. I also find it helpful to restrict the search by going to the "Recruitment" part of the form and specifying "Open Studies."
When you are finished with the form, just press the "search" button. You'll be surprised often at how many trials will come up.
Best of luck to you and your mom!
-
Jonah
Re: Pomalidomide - last-try treatment
Hi Sazjo20,
I am sorry to hear that your mother is in this situation. Are you working with a doctor who sees many myeloma patients, and does have access to clinical trials? From what I understand, a patient may take a medication more than once too, even it is stopped working once before. But I think the best is to seek out the best medical advice you can find.
Would she be able to do a stem cell transplant? That might be an option in some situations.
I am sorry to hear that your mother is in this situation. Are you working with a doctor who sees many myeloma patients, and does have access to clinical trials? From what I understand, a patient may take a medication more than once too, even it is stopped working once before. But I think the best is to seek out the best medical advice you can find.
Would she be able to do a stem cell transplant? That might be an option in some situations.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Pomalidomide - last-try treatment
I appreciate you replies and thank you. I will look at the trials. Apparently there is some treatment but they can't obtain the funding . Makes me angry asking; is my mums life not with it?.
My mum is not fit enough for a stem cell transplant. Her breathing is too bad.
I am worried sick ... xxx
My mum is not fit enough for a stem cell transplant. Her breathing is too bad.
I am worried sick ... xxx
5 posts
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