[miley30Participant]

Hi Mulberry,
Thanks for the information – much appreciated. It’s incredible really that 14% of patients in the US have already been living with the disease for 20+ years, especially with the new drugs coming into play. Although I feel like the UK are much further behind with approving these drugs for use, am I wrong here?
I recently joined the UK support group but unfortunately had to leave pretty sharpish because I didn’t feel it benefitted me very much and found quite a few upsetting posts.
I’m trying to avoid Dr Google because as you say, it’s based on averages with peak diagnosis at c. 70 years old. Mum is very spritely for her age and was fit & healthy prior to fractured vertebrae/ribs and general diagnosis, she honestly doesn’t look a day over 50!
Just naturally very concerned about her and her welfare and must admit wake up most days and the first and last thing going through my head is ‘Myeloma’.
Just realised I went off on a tangent here, sorry about that!

[miley30Participant]

Hi Sach,
Thanks for all the info above – apologies yes I meant Progression Free survival! Still trying to get my head around all the terminology as you can imagine haha.
In terms of genetic testing, I don’t believe they did as surely we would have heard about it being high risk? Not sure how it works if the BMB came back clear as I read the Myeloma pack re. genetic testing and they would need to find cells in bone marrow to make this judgement?
Also she has now started VTD as the induction treatment so I would presume based on this/what you said that this is standard pathway and therefore standard risk?? Sorry so many questions that I’m probably just not making sense of!

[miley30Participant]

All… sorry just a thought to add onto the above. With Lenalidomide being approved for maintenance post SCT and average survival coming out at 6 years or so before relapse, is it possible that it continues to work for longer than this? I.e. some patients are still on maintenance post SCT and the results are published based on conclusions from the trial at that time?

Thanks all,
Mileyx

[miley30Participant]

Hi Sach,

Thanks for reaching out, and great to hear your research has enabled you to become more positive and see a way forward. I’m currently stuck between days where I feel super positive and then others are seemingly quite low (as mentioned previously, the stories you see of people passing/suffering in the last 5-10 years haven’t helped come to terms with Mum’s diagnosis).
The last thing I want is for her to be in pain or suffering because 54 seems far too young to allow this to get a hold of her life.
I have everything crossed they find a drug(s) which keeps this disease at bay forever.

[miley30Participant]

Hi Higgers,

Sorry I missed your comment yesterday. That’s really great to hear how well your wife is doing! Please give her my best wishes.
The more I’m reading, the more positive treatments and remission times seem to be. I am guilty of then reading back 5 years and seeing stories of those who have passed (RIP) and it terrifies me all over again which I admittedly, need to stop doing.

I have high hopes the next 5-10 years will have further advancements in treatments.

[miley30Participant]

Thanks Kevin, definitely lots of positives to take out of your story! I’m hoping it wouldn’t be unreasonable to suggest that 20 years is actually a possibility with today’s treatments.
What is comforting is seeing how many people are referring to Myeloma as a ‘chronic illness’ as opposed to a cancer and how many positive stories there are of people bypassing life expectancies and living a normal healthy life span.
Hopefully this will all settle down because it definitely feels as though it’s consuming my thoughts a lot at the moment.

[miley30Participant]

Thanks both for your kind words of encouragement, we’ve definitely had appointment after appointment thrown at us so haven’t really had a chance to digest yet.

Kevin – Great to hear you’ve been cracking on with life for 15 years. Here’s to the next 15 with hopefully all the new advancements coming through! Did you have any maintenance drugs during each period of remission?

Shaun – Thank you so much, it’s very comforting knowing how similar your situation is to ours. Sorry to be nosy… How come you had 2 transplants in a short period of time? Again, are you on any maintenance drugs?

We have a whole team of Specialists working in our unit who have interests in Myeloma I believe so we are off to a good start there (thank goodness!) and I like to think it’s been caught early as minimal damage done so far except to bones.

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