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This is my first post…
I am 69, was diagnosed a year ago (stage one) and have to start treatment in three weeks. I have been offered either a stem cell transplant with all its many side effects and risks, but hopefully a treatment free period afterwards, or ongoing Lenalidomide and Dexamethasone, with fewer side effects, I was told, but no more treatment free time… It is such a difficult decision, as no one knows how it will work out and how I will react. Is there anyone who was in the same or a similar situation?
Hi Regine
Sorry to hear about your diagnosis but wish you luck with whatever treatment regime you go for.
After my diagnosis in 2016 I was told by my consultant that I should be suitable for SCT and was therefore not given a choice and was given Velcade for 9 months prior to my SCT which was in November 2017.
Unfortunately I regressed 6 months after SCT and am now on lenalidomide with ixazomib and dexamethasone which I will remain on as I do not have the option of a 2nd SCT due to the short remission time.
Whilst SCT is not a pleasant experience it is at least only short term and hopefully would give you a longer remission period.
I am now 11 months into the lenalidomide regime which at certain times causes various problems/ side effects and will continue to do so but as this is now my only option I am learning to cope with them.
It is a difficult position for you as everyone reacts differently to the various treatments but on balance I would say that I was glad I had the SCT.
Hope this helps
Regards colin
Hello Colin,
Thank you very much for taking the time to reply to me. Yes, the diagnosis was a shock, as I don’t feel any symptoms yet, but am getting used to the thought ….
My treatment is supposed to start next Monday, and I think I will opt for the lenalidomide and dexa…, but the third part in your treatment has not been mentioned, probably because my cancer is stage one?? Or because I have cardiomyopathy as well (thickened heart muscle).
I am sorry you had a short remission and hope this treatment will help you for a good while yet, and the side effects will not get worse.
With my best wishes, regine
Hi Regine
I was diagnosed in 2017 aged 69. I was initially treated with velcade for 8 months but decided against stem cell transplant as I was borderline age wise and the consultants were ambivalent about it. I don’t seem to rect well to high doses of chemo and have no regrets about refusing the SCT.
I had 18 months of remission, but unfortunately relapsed earlier this year and am now on Lenalidomide/Dexamethasone plus daily stomach injections for deep vein thrombosis.
I have just asked to have the lenalidomide reduced from 25 mg to 15mg daily, as I was becoming very tired, loss of appetite and loss of muscle tone with the higher dose (after 5 months). I have also had the Dexamethasone reduced as that was causing problems with a sudden drop in blood pressure at the end of the 4 days on, so the consultant suggested I stagger the tablets.
The lenalidomide is a long term treatment at it seems that some people have been on it successfully for several years, which is some comfort.
I hope whatever you decide works well for you. It is a shock to be diagnosed with something like myeloma, which I had certainly never heard of, but it does respond very well to treatment and it seems new drugs are being discovered all the time. Myeloma also provide an info pack for newly diagnosed patients and a personal diary, which can be helpful.
Kind regards and good luck
Val
Hello Val,
Thank you very much for your reply. We seem to be in a similar situation – you are just a little ahead of me.
I (think) I have decided against the stem cell therapy and for the lenalidomide and dexamethasone and will start treatment tomorrow. It is a bit scary, but I hope I will tolerate them reasonably well, and if not, I know there is the option of reducing the dosis.
I wish you all the very best on your new regime and hope it will work for a long time,
With kind regards, regine
Hi
I was wondering if you’ve discussed with your consultant taking the stem cell in 6/12 months time if the maintenance regime isn’t working or causing side effects, or you’ve had a change of mind?
My wife is facing a similar decision once she finishes her initial treatment, and it’s something we’ve considered discussing with the consultant. We’d like to find out if she decides against the transplant, is that it there’s no going back?
Good luck with your treatment.
Graham
Hi everyone,
I should be having a SCT, but having second thoughts as routine echocardiogram shows minor heart damage, consultants says no problem, I am having a meeting next week to discuss all the options as I am on a trial.
I would like to know if anyone pleased they did not have a SCT and whether remission times were shorter than if they had a SCT
I am 64 years old and fit, so standard treatment is a SCT
Help!! I would like your views.
Keep well everyone, and sorry you are on this forum, but thanks for your comments in the past.
Thank you, Graham, for your suggestion. The same idea had crossed my mind, too. However, when I met my consultant last Monday, she told me the cardiologist who is treating my cardiomyopathy (diagnosed a week after the myeloma!) advised against the stem cell treatment, which meant I didn’t have to decide in the end.
I started my Lenalidomide/Dexamethasone regime a week ago, and after such a short time am (still) feeling ok.
I am sorry I can’t really answer your question, but wish your wife all the very best, whichever route she takes,
regine
Hello Colin,
as I mentioned in my previous message, I was advised against SCT by my cardiologist, but then my cardiomyopathy is probably more serious than your ‘minor heart damage’.
I don’t know if anyone can say that remission times were shorter with different treatments, as it all seems to be so individually different. I am 69 and so near the cut off age anyway, which makes me confident that the ‘milder’ treatment is best for me! But you are younger and fitter, so it is different….
You can only listen to the doctors and then go with your instinct…
I wish you the very best outcome,
regine
Hi Regine
Thanks for taking the time to reply and for your best wishes. It is re-assuring in a way, to hear someone else was thinking about this option too.
I’m sorry to hear that option wasn’t available to you in the end, and I hope the lenalidomide/dexamethasone regime works for you. There seems to be more options available to medical teams nowadays.
Graham
I am 61 & had a SCT in February this year. My understanding is that at the moment, on balance, SCT is still the most effective treatment for those who are healthy enough to cope with the ‘ sledge hammer to crack a nut’ approach. This may not remain the case, it is thought new drugs will become the better option. Although all the potential risks of SCT are spelled out, only the most unfortunate experience serious problems and for some, like me, really it involves nothing more than a few days of total fatigue and upset stomach followed by a few weeks of recovery. The promise of a drug free period of remission afterwards however is a sham. UK research (myeloma X1 trial) shows that post SCT remissions are almost twice as long (58 months Vs 30 months for standard risk patients) if we have Lenalidomide maintenance after the transplant. The choice should be on going high dose lenalidomide & Dex (with its side effects) Vs SCT then lower dose lenalidomide. Lenalidomide has fewer side effects than some other myeloma drugs, but is not free from them. Currently the NHS will not provide maintenance post SCT. This is due to be considered by NICE/NHS in Oct 2020, however a little bird tells me the powers that be are considering making it available only to newly diagnosed patients, not to us who are already in remission.
Dear all,
I hope everyone well.
I have come off the trial, and cancelled the stem cell harvesting as my instinct said no, I am aware that SCT is the best treatment available for longer remission, but I spoke to my consultant last week she will support any decision I make, if I am still in remission ,I am VGPR, maybe to have stem harvesting after Xmas. I am also looking at lenalidomide as a maintenance dose if I use my works private health care.
I have found out my heart condition is due to treatment and should go after treatment stopped, but will find out after new echocardiogram. I have also been diagnosed with osteonecrosis and seeing the specialist about this and looks like treatment related.
Has anyone who is young and fit also declined SCT and has remission been short?
Anyone on lenalidomide maintenance treatment and is the side effects very bad, or are they tolerable
Sorry to go on,
Bren
Hi Been
I was 68 when I started this MM journey and on the myeloma X1 trial. An SCT was never mentioned by my consultant at the time so I brought the subject up when he asked if I wished to go on maintenance arm of the trial. Although after much research I had decided not to do SCT if it was offered, he did say people don’t realise the mortality that can be involved. He certainly gave the impression that he didn’t really have a lot of confidence in transplants. So I didn’t go on maintenance or have an SET and I had nearly 3 years of drug free remission.
Hope that helps a bit Bren
Best Wishes
susie
Hi susie,
Thank you it has really helped.
I hope the treatment you are on, is going well, and not too many side effects.
May I ask, did you go into complete remission or VGPR like me?
Hopefully, the cure will come soon.
Bren
I am on lenalidomide maintenance, 6th cycle. I had used lenalidomide during induction (RVD) & had had a few side effects, leg cramping & constipation. I’m now on a lower dose, 10mg a day & still have these side effects to some extent. My platelets are quite low now (127, should be 150+) TBH I’m disappointed about the extent my bloods are taking a battering, although I’m pretty well and able to get on with life.
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