[piatkazParticipant]

Hi

Just got back from seeing my specialist and started the 3rd cycle of Rev but light chains still rising and bone pain LC now at 380,she said will get another result in 2 weeks and see if we need to go on to Bendamustine just wondering if the Revlimid is slow to react and if this could be a blip and if anyone else has had the same thing happen.Just worried about using all my options up quicker than I thought
Thanks Ian

[andygParticipant]

Hi Ian
I'm on Revlamid and my results were slow to show any improvement. I think it was cycle 3 or 4 before my PPs showed an improvement. I think it's known that Rev can be a slow starter.

Every days a gift.
Ensure you use it.

Andy

[piatkazParticipant]

Thanks Andy I was hoping for a reply like this it does give you hope but I know everyone reacts differently to treatments.
Many thanks Ian

[mhnevillParticipant]

Hi Ian

Just wanted to send best wishes and say hope Revlimid start to be effective soon.

Mavis x

[jillsParticipant]

Hi Ian,
Interesting to read this thread. My Mum (age 84) has been on Revlimid for five months with light chains starting at 10,000, they are now at 5,000. PPs have gone from 34 to 26. Today her consultant said he wanted to try something else as he was not happy with this slow progress and Revlimid has also made her quite anaemic. She was diagnosed in 2007 and has already had CTD and Velcade so apparently the next would be Bendamustine but it would need to be approved so we have a wait but in the meantime she is free of drugs for a few weeks to allow her HB and neutrophils to recover.
Overall she has done very well for her age but I guess she is starting to run out of options.
Hope the Revlimid works for you – let us know how you get on.
All the best,

Jill

[andygParticipant]

Hi Jill
I'm just starting my 18th cycle of Revlamid my PPs usually hover around 17 – 21 my blood aren't good HB 95 WBC I.6 PLTs 97 and Neuts 0.7 and they're a only a little bit lower than usual for me. I think low blood counts are a side effect of Revlamid.
Dai tried Bendamustine but I think he had trouble with it effecting his Neuts and he went back to an old treatment that had worked before Velcade.
I'm 55 Jill so maybe I can tolerate the lower blood counts better than your Mum. I need to because I'm running out of options too!

Every days a gift.
Open it gently

Andy x

[jillsParticipant]

Hi Andy,
Thanks for the posting, Revlimid certainly seems to have affected Mum's blood counts, her HB was 8.7, Neuts 0.5 but after a week's break from treatment HB is 9.1 and Neuts 0.7. She is going in for a blood transfusion on Wednesday, the third one she has had during five months of Revlimid. Velcade did work for her while she was having it but as soon as she stopped the PPs and light chains started to rise again quite quickly.
Not really sure what they will decide to do next with her – apparently there is a meeting this week and she is on the agenda (!!) we have to go back next week to find out.
She is in fairly good health apart from myeloma with no bone problems or pain and is very good with taking all the treatments – not sure I would be so keen at her age to keep swallowing all those tablets!
All the best,
Jill

[piatkazParticipant]

Thanks for all the replies just comeback from seeing my specialist in Shrewsbury and she thinks the revlimid isnt working my lightchains have gone up to 500 and wants to jump in early before the lightchains start damaging my kidneys.Go to Birmingham to see my main specialist on Next Wednesday to discuss going on to Bendamustine I know this is done by IV but what is the protocol ie how many times a week is it 3 weeks on a week off when is the dex taken etc
Thanks Ian

[jillsParticipant]

Ian,
My Mum is in the same position as you, her consultant has stopped Revlimid and mentioned starting Bendamustine but didn't tell us much about it. We are going this Thursday to see him again so I will pass on anything I find out about the regime. From what I have read it is a monthly IV treatment but what else is involved I am not sure yet. I am hoping it is not too difficult for Mum in terms of side effects, she lives alone and I want her to continue to be as independent as possible.
Will update following her appointment on Thursday.
All the best,
Jill

[piatkazParticipant]

Hi Jill

All my specialist said was it was 2 infusions (iv) per week and there are less side effects than most but will ask all the questions next week when I see my main specialist
Ian

[jillsParticipant]

Hi Ian,
Just to update, no Bendamustine for Mum at the moment, her consultant wants to do bone marrow biopsy to find out more, in the meantime she is off treatment and so feels much better. He said he didn't want to give her a treatment which would make her feel less well which is good news. We will know more after the biopsy is done.
Hope your appointment goes well – let us know.

Jill

[piatkazParticipant]

Hi
Saw specialist and he has decided to keep me on revlimid but add an extra block of dex and cyclophosphamide and try it for a couple of cycles and see how it goes,fingers crossed
Ian

[susan123Participant]

Good luck with everything Ian, stay positive, I know it's difficult.

Love Sue xx

[tomParticipant]

Hey Ian

Well my fingers are crossed for you me toes also 😀

Stay well and hope it works with little side effects 😎

Tom Onwards and upwards

[Croz1Participant]

Hi Ian

My Revlinid treatment stopped working a few weeks ago and I have now been put on Velcade combo. I have been on the treatment 3 weeks and my PP levels have halved. I have felt rough while on the treatment but when you get a good result it makes it all worth it.

[Author]

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