Mum’s diagnosis… petrified!

This topic contains 17 replies, has 7 voices, and was last updated by  mulberry 5 months, 1 week ago.

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #142230

    miley30
    Participant

    Hello everyone!

    My mum has been diagnosed with Myeloma after 10 months of debilitating back + rib pain (due to several fractured vertebrae and cracked ribs). All tests came back clear (bloods, bmb) bar the scan showing lesions in her problematic areas (hips, spine, ribs).

    It’s an absolute whirlwind of information to process in a short space of time and I can’t help but think the worst… I’m 27 and my mum is only 54 and faced with the prospect of this disease taking her so soon absolutely terrifies me, especially as it’s only me and her at home.
    I’m so sorry for offloading my emotions on a forum, I feel as though I need to speak with people who are in the same boat as us to share their experiences and hopefully provide some insight.

    #142231

    kevin
    Participant

    Hello Miley

    Sorry to hear about Mum. I was diagnosed when I was 48 which was nearly 15 years ago. Have had several treatments over the years each one giving me full remission which is were I am now. Although still not curable it is treatable with new treatments since I was diagnosed. it can be overwhelming at the beginning, everything gets thrown at you at once (treatment plan, scans, tests, appointments etc) but it does settle down and I think positivity helps and I am very optimistic about the future.
    Best wishes
    Kevin

    #142232

    shaun3
    Participant

    Hi Miley,

    sorry to learn of your Mum’s diagnosis. I was diagnosed about 3 years ago aged 52. Similar situation; bad back and a couple of collapsed vertebrae. The first few months after diagnosis are tough but the outlook is not as bad as it used to be. In the last 3 years I’ve had two stem cell transplants and I’ve been in complete remission for almost 20 months now. I’m working really hard, enjoy my life and the outlook is positive. So my advice would be; make sure your mum finds a good Myeloma consultant and only read information from a trusted source like MyelomaUK. Try not to worry too much, there are many treatment options open for your Mum.

    Sending positive vibes in both your directions

    Shaun

    #142233

    miley30
    Participant

    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.

    #142234

    kevin
    Participant

    Hello Miley

    My first 2 treatments were cyclophosphamide dexamethasone and thalidomide followed by a SCT. Each one gave me about 4 1/2 years full remission with no maintenance treatment although I was offered it if I wanted it. My last treatment was carfilzomib and dexamethasone. After the main treatment I was put on a reduced dose for about a year which was classed as maintenance. I finished that in Nov 2019. I am still in full remission and am only having a 3 monthly infusion of Zometa which is to help bone loss and prevent fractures.
    Best wishes
    Kevin

    #142235

    higgers
    Participant

    Hi Miles
    My wife was diagnosed with igD MM (a very rare form) last July. She is 61 and always been very fit, sporty and healthy. As you can imagine it came as an absolute bombshell! 1 year later she has had 4 cycles of VTD with hardly any after effects and a stem cell transplant at The Christie in Manchester (we are in Cheshire). She is now in remission and feeling better and better and has started on lenalidomide maintenance. Last week we were in the Lakes and Julie was managing 8 mile walks (she could hardly walk when it all started). Please be positive and read all you can. Julies health team have been amazing and we have trust in them. Please tell your Mum that although scary to begin with, after the initial treatments You come to terms with everything and you can carry on with life and hope remissions last for years and years.
    Much love, Simon

    #142236

    miley30
    Participant

    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.

    #142237

    miley30
    Participant

    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.

    #142238

    sachbarnes
    Participant

    Hi Miley, my dad was diagnosed 2 weeks ago at 67 and started VTD straight away before a planned ASCT after 6 cycles. I can definitely feel your anxiousness right now, we started tests 2 months ago when they thought it might just be smouldering, and then finally got the diagnosis through the MRI showing lesions. So I have been avidly researching for a while.
    The more I read the more positive I have become, and just had to keep checking the dates on various info pieces. A lot of the scarier stuff is so outdated now! With the new therapies and treatments coming out all the time (myeloma has one of/if not the the highest new drug>approval ratios in recent times). Then you also have really exciting stuff like gene therapies on the horizon.
    It definitely does seem more and more like a chronic disease with the current treatments available/imminent. And your mums case of clear bloods/bmb only improves the outlook. Keep her positive, I find I have to keep hammering that home to Dad but think its getting there.

    Great to see the positive comments on this thread too. Well done all, doing great.

    Tx

    Each

    #142239

    miley30
    Participant

    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.

    #142240

    miley30
    Participant

    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

    #142241

    sachbarnes
    Participant

    hiya, to your first post, id say we are at a completely different time now to even 5 years ago for myeloma treatment. so much of the trial data of the new drugs hitting the scene cant even give results because people are not dying! and when they relapse or become refractory to some drugs, different drugs can be used more and more that were just not there before.

    for Lenalidomide post ASCT, like all the drugs and the disease itself, it seems completely individual. Check out people like the famous NBC anchor Tom Brokaw on YouTube. hes been on Len for 8 years and didnt even have an ASCT. but if your mum has clear bloods and bmb, you should have a really positive outlook. Did they do the FISH/cytogenetic genetic testing as well? that should influence treatment pathways.

    also where you write average survival, you mean progression free survival. you want OS to see overall survival rates, and the average is nearer 9-10 years now (and thats a pinch of salt in my book because so many of the newer drugs aren’t in this data for relapses etc, because most of the advancements have been in the last 5-10 years).

    for us, at the moment we are waiting for the first cycle of VTD to finish, and if the results could be better, going to ask our consultant if we can source the generic Len ourselves to use in induction therapy, as VRD generally has better results than VTD. because of the patent issues, private is 5k a month for it, whereas identical generic is 100 euros! there is another thread on here “Lenalidomide from India’.

    also I would have a look at ‘Margarets corner’ blog for a wealth of knowledge. She is smouldering but coming upto 15-20 years based on supplemental therapy to keep levels in-check. Read on Dieneke Ferguson who went onto Curcumin Complex via reading Margarets corner when other drugs stopped working, and kept it at bay for a further 8 years before she passed away from another cancer, not myeloma.

    I have posted in another thread on supplements. Hoping to start them up again asap for dad as some can compliment the drugs he has to take, and they have anti-myeloma activity too. Waiting on consultants pharmacy team to check and make sure okay to take with his current drugs.

    #142242

    miley30
    Participant

    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!

    #142243

    sachbarnes
    Participant

    hey, yea tbh I haven’t read on someone with a clear BMB, but thats where they did dads FISH/genetic testing through so your mum must be low risk.

    even with dad they weren’t going to start treatment before the MRI showed lesions, as no other CRAB symptoms, even though his BMB was showing 60-70%. I guess coz it depends where the needle hits and can be an unreliable indicator.

    yea in this country VTD then ASCT seems to be standard pathway for standard risk. But in US and Europe its VRD which has shown higher rates of complete/very good response. VTD is still pretty good, but its annoying that its not the standard here really.
    Also a few weeks ago DARA-VTD was drafted NO by NICE in England, even though its approved in Scotland (you will see on one of the recent updates in the news section on this site). That has even better results in trials, annoying that NICE is always behind the curve and dragging things out.

    feel free to DM me on here for any stuff. I am in the same boat as you just trying to read into stuff.

    but also keep positive, so many docs classify this as a chronic disease now, that doesn’t affect lifespan. 20-30 years, yes easy!

    #142256

    mulberry
    Participant

    In USA, with fully insured patients having access to personalised treatment plans and all new FDA drugs, already 14% of myeloma patients are living for 20 plus years. If you consider that the peak age of being diagnosed with myeloma is 80-90 years old, and our average age at diagnosis is c.70, ages when 20 year life expectancy is unlikely, the prognosis for younger patients (ie under 70s) seems to be increasing. Even in the UK, recent NICE/NHS approvals of lenalidomide maintenance, daratumumab, etc will enable many of us to live longer than we feared possible at diagnosis. The research into myeloma and effective treatments really is changing fast, even in the 3 years since I was diagnosed a lot has changed. CAR-T and BiTE potentially offer exciting future lifelines, and UK does world class myeloma research, supported by a world class charity in Myeloma UK.

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