[2ndbubbleParticipant]

My mum has Myeloma and sadly it has advanced very quickly when she is meant to be in remission. Currently they are offering lenalidomide to hopefully give her a bit longer as she really wants to see christmas and beyond as she feels it would ruin christmas for us all if she doesn't make it past this date. My question is how bad are the side effects as the last thing we want is for her to suffer with those if they are bad. No sugar coating required with answers as we are a family that can deal with things if we know what we are dealing with.
Thanks
Sarah x

[tomParticipant]

Hi Sarah

So sorry to hear your Mum has advanced so fast when she came out of remission.

Bless your Mum for thinking about you all re xmas when she has been told the bad news, am sorry I cant tell you anything about it and am sure to be fair side effects vary from person to person when on the drugs so your Q is a difficult one to answer.

Love and big hugs to you all at this time

Tom xxx

[avantrompParticipant]

Hello Sarah
I would say definitely give it a try. I have been taking Lenalidomide for nearly 4 years with minimal side effects. When I first started on 10mg my body reacted dramatically to the dose, with blotches all over and peeling skin, so the doctor reduced it to 7.5mg. Since then I have had no problems and a continuing lowering of my p-protein.
Not everyone is as lucky as I am but what have you got to lose?
All the best
Annette

[eveParticipant]

Hi Sarah

This is a hard one!!! As no one can predict what is going to happen,doctors might have a general idea in terms of the Myeloma,but your mum might have other ideas,I would fight along side your mum,for every minute she has left.
You mum will chose to die when she wants to,and that's the way it should be.

Slim has had 3 stays in hospital this month,two for Sepsis,and the one thing he made clear to me is,Do Not let them put a DNR on his file,so my job is clear,he wants to keep fighting no matter what!!!!
We are waiting on results,but his platelets are not holding,we know he is on a downward path,but we have not given up hope or enjoyment of each day,you can pack a lot into a day .Eve

[NettieParticipant]

Hi Sarah
I agree with Annette, I would suggest your Mum gives it go. I started on 25mg and am now down to 15mg as some of the side effects were not particularly pleasant but everybody reacts differently and until she tries she won't know. It is probably a case of getting the dosage right for your Mum. None of the side effects I encountered were unbearable by any means and they diminish with each course.
Good luck to your Mum, I really hope she makes it to Christmas and a long way into 2014.
Love
Nettie x

[sanParticipant]

Hi Sarah, all that i can tell you is that my Mum had revlimid for just 2 cycles and it knocked the myeloma back a few months, if her liver could have coped then she would have had it for more cycles and it might have given her a slightly longer remission, everybody is different in the way their bodies cope, i really hope that your Mum and my Mum make it through Christmas, my Mum is soon to start on more chemo maybe cdt not sure if it will help as she has had rcd but we hope. I had to smile when you mentioned that your Mum did not want to upset Christmas as my Mum is the same what great Mothers they are always thinking of the family, you are not alone, love San xx

[eveParticipant]

Hi Sarah

I forgot to mention,Slim is on CDR,at a half dose!!! Should start his 6th cycle today,but cannot see it:-D ,as we do not know if it's the Revliimid or Myeloma that is effecting his blood readings,as the only way to tell with Slim is a BMB,so waiting for results.
Every one is different,and as I said if it buys a little time.Love Eve

[adamsp41Participant]

Hi Sarah…I was on x1 trial with Revlimid post SCT (Jan 2011)…started on 25mg and gradually over the years finished up on 5 mg…and as Tom states it does affect everyone differently…I had tiredness as my main side effect …(certainly bearable)…Docs took me off Revlimid as it was causing problems to my liver…still get fatigued but nowhere as bad…hope your mum gets remission and good luck to you all….Phil

[jillsParticipant]

Hi Sarah,

My Mum had four cycles of Revlimid and it did reduce her PP level but she suffered with anaemia and low neutrophils as a side effect. She was on 10mg plus cyclophosphamide and dex – the doses were low as she is 84.

She stopped this treatment in August and has been off treatment since, unfortunately the next option of Bendamustine is not suitable for her due to the poor state of her bone marrow. So we are watching and waiting – at the moment she is really very well – better than I have seen her for a few years while she was on the various treatments – so who knows!!

Good luck to your Mum,

Jillx

[2ndbubbleParticipant]

Wow thanks for all the replies so far. Thanks as always Tom yep she is a very brave lady especially when i know she has had enough really. She lost her 2nd husband two years ago before they had even made their first anniversary and while nursing him through his cancer she skipped her annual check (She was diagnosed with smoldering myeloma 14 years ago) and when she turned up 4 months late it had started.
She will be on the lowest dose every other day as she is already in kidney failure but the Myeloma is so aggressive that she now has tumors on her spine and her all spine is riddled with it. Really she just wants to buy a bit more time but without too many side effects. Its great to hear how everyone has coped.
She has another scan on her neck and a lumber puncture to have in next couple of days as she has lost feeling in her mouth and eating and drinking are becoming difficult, and hopefully some radiotherapy to shrink the tumors to relieve pain. She was on velcade which was giving good paraprotein readings but the light chains were going wild regardless. Velcade stopped three weeks ago and luckily her and her best friend went on a road trip taking in Liverpool, Edinburgh, Whitby and York.
My biggest frustration is that Doctors don't seem to take on board what mum wants. Its all about maybe just try this or that but she has stated she has had enough so time to fight Eve as you said. I will fight for what she wants and worry about the rest when the time comes. x

[2ndbubbleParticipant]

Really glad it is working well for you Annette. I know I am hoping for a lot but maybe just a chink of light as so many seem to do ok on it Keep up the good work and hope that pp level keeps going down for you.
Love Sarah x

[2ndbubbleParticipant]

Thanks Nettie. Will be good to tell her side effects seem to get better the further in you get. Fingers crossed that you keep on having good results. Love Sarah x

[2ndbubbleParticipant]

Hi Eve
I know what you mean about fighting although we are fighting for the opposite right now. Still have a lot of laughs everyday and have a few trips in mind maybe a spa day too.
Its hard to watch someone you love in pain but fighting for them makes it easier in a way as it gives you focus and strangely almost gives me some comfort as I feel i can do something to make life what he wants it to be even if i can't make her physically better i can at least give her the voice to feel mentally better if that makes sense. Heres to many more happy days for you and Slim. Love Sarah x

[mikeyParticipant]

Hi Sarah , I have come in late to your enquiry, as i don,t come online too much, but hope all is going well .
I am on cycle 43 with Revlimid, and it is still working well .
I cannot give a direct reply as to the side effects of Revlimid as i take it with Dex and Cylophosphamide , but when i am on Revlimid only at certain times of the cycle , my side effects dont seem too bad, i tend to blame the Dex for most of them .
Hope things go well.
Hugs .
Mike. xx

[2ndbubbleParticipant]

Hi Mike
Thanks for your kind reply. Sadly mum passed away on the 8th of November so its too late for her but hopefully someone else on here will get some help from them.
Hope all continues well for you
Love
Sarah x

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