[JaveajamesParticipant]

Hi. I was diagnosed just over three years ago, had Velcade for 6mths and then SCT followed by Revlimid (10mg) for one year. I have now been off any form of treatment for 12 months, but my MM is now classed as relapsed and the consultant is considering options for further treatment. Can anyone help me with similar experience. How long do I have to be off Velcade before I can have it again? Similarly with Revlimid? My consultant is recommending I have “chemotherapy” but i do not understand why. He tells me it is not to do with the finance.
Any experience or help here would be appreciated. James

[eveParticipant]

Hi James

They like you to be 12 months clear and to have had a good response .nice guide lines is it’s allowed if you have had a good response .

Revilimid they usually use until it stops working.
Pomilidomide is the latest one coming out in trials.

When he says chemo!!! Is he talking just cyclophosphamide ????

You can go into trials on the forum and find out at least what is being offered.Eve

[PerkymiteParticipant]

Not quite sure I understand “he is recommending you have Chemo but it is not because of the money”. Revlimid is very expensive.

If your Myeloma has relapsed, and you do not give any details of that, you would naturally go onto the next phase, provided that is you want to.

Sorry I could not be more helpful

Kindest regards – Vasbyte

David

[JaveajamesParticipant]

Thanks Eve and David, that is very helpful. I cannot understand why he is not suggesting Velcade or Revlimid as I responded well to them. He tells me that he has certain protocols to follow! The chemo being offered i did ask what it was and he reeled off three drugs i was not aware of. I find it all quite strange as he has been very amenable and given me the drugs without any problem. James

[PerkymiteParticipant]

If you could post the names of the Drugs that will be a big help I think, somebody will recognise them. The “normal” order of things appears, as far as I can gather, to be CDT, SCT, Velcade and third line Revlimide. After that it is pot luck!

kindest regards – vasbyte

David

[JaveajamesParticipant]

Thanks David, but unfortunately i cannot remember them as the consultant rattled them off when i asked and we moved on. My lesson that i have learnt is that i must ask him to write them down for me. Next visit i will clarify them. James

[PerkymiteParticipant]

I believe some people take mini recorders to consultations.

Kindest regards – vasbyte

David

[andygParticipant]

Hi James.
There are so many variables involved with myeloma that it’s hard to give you any information without knowing your circumstances.
That fact that you had Velcade then a SCT suggests you may of had kidney problems, that’s if Velcade was your first line of treatment. After your SCT you sound like you were put on a maintenance dose of Revlimid which may of been part of a trial.
Age, fitness and strangely health all play a part in the choice of treatment.
Chemotherapy is the use of cytoxins which as Eve says usually involve Cyclophosamide in combination with another drug or drugs Thalidomide, Velcade, Revlimid, and for me Pomalidomide. All come with a course of dexamethasone.
Nice lays down criteria for the order in which they are to be used which is usually CDT, PAD (Velcade) and RCD. The number of cycles and the responses required are also laid down by NICE.
For example I started on CDT and had 6 cycles with not a good response so couldn’t go the SCT. Next I tried PAD only had 2 cycles because my response wasn’t good enough. Next I was tried with DTPace not on the Nice recommend list but by now I was a special awkward case that didn’t work either. Next along came Revlimid and Dex, which I don’t think was on the preferred list at the time as it was not fully licensed, after a few cycles of little progress Cyclophosamide was added and I stayed on it for 22 cycles. I’m now on another drug not available through normal NHS channels only via trials and the Cancer Drug Fund which is who I get mine. With the inclusion of the ever present dexamethasone. My progression through the drug list is unusual as I’m a unusual case but it shows no two treatment plans are the same.
Going back on drugs that worked in the past is an option though Myeloma does evolve resistance to the treatments and again it becomes a judgement call.

David if you think Revlimid is expensive you should see the cost of Pomalidomide! I’m cost the NHS a fortune though Steph thinks I’m worth it lol. Though the NHS don’t pay for the Pomalidomide.

Well I hope I haven’t confused you too much James with my Dex inspired ramble. Good luck with you next consult.

Every day is a gift

Andy

[JaveajamesParticipant]

Hi. Thanks for the comments. Andy it was really useful to hear of all the differing drug combinations that you have had and i certainly admire your tenacity and determination over a fairly long treatment period. Living in Spain is great but it does leave me a bit isolated when it comes to these things. Here we do not have a NICE, but there is a similar body with slightly different criteria. For example i managed to get approval for Revlimid after my transplant, when it would not normally be available in the UK until after your first relapse.
David thanks for your suggestion about carrying a recorder when i see the consultant. Brilliant in theory, but i would not want to risk upsetting the consultant by even suggesting it.
Best wishes,
James

[meganjaneParticipant]

Hi James,

I was unable to attend my husband Phil’s last appointment with the consultant and Phil asked if the doctor would mind if he taped the converstaion as normally with both of us there one of us will remember what the other one forgets. The doctor did not mind at all so it may be worth asking. Phil used a device on his phone to record the appointment and we were both able to then listen to it together later.

Megan

[PerkymiteParticipant]

I accept I have never done it, take a recorder that is, and my wife who has a memory like an Elephant always accompanies me but I have never heard anybody say their Consultant complained – I would do it if I was on my own.

Kindest regards – vasbyte

David

p.s. I think you are worth it as well Andy LOL.

[Author]

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