This topic contains 15 replies, has 7 voices, and was last updated by 
Jentay 13 years, 8 months ago.
Hello All,
My 1st posting but I'm coming up to 8 years since diagnosis. I see a lot about Velcade. I was on it 1n '08: only managed to co,plete 4 courses then suffered very bad peripheral neurosis which I'm told will never recover so I'm on Pregabalin permanently. Velcade still gave me 18 months treatment free then I started Revlimid just over a year ago and am now completing Course 13. Originally 1 had the 25mg tablets but these caused even more confusion than normal, not least because I was also on high strength Fentanyl patches for pain from collapsing sternum.
Consultant cut me down to 15mg Revlimid with just 5 x 2mg Dex days 1-4 and so far this is still doing the trick with paraprotein count down to 5 (I only achieved 6 after high-dose melphalan & stemcell transplant). Current side effects are no sleep on 1st night, then confusion/nausea on days 5-7 followed by feeling OK for the rest of the month.
Interested to hear any other experiences.
Hi Wolf,
I am due to start Revlimid on Monday so it was interesting to read about your experiences. At least I shall have an excuse for acting slightly batty from the sound of it!
I'm having 25mg of Revlamid, plus 20mg of dex (it was supposed to be 40mg of dex but I argued that it was too much based on previous experiences, so the haematology nurse and I agreed a compromise)I shall have to see how it goes.
Not sure how long I shall be on it. The doctor I saw on Wed said six cycles and the nurse I saw on Friday said until it stops working, so I shall have to wait and see who wins that argument. Mind you the doctor is yet another locum so he will have disappeared before I reach the end of the proposed course, if not sooner. It would be lovely to see the same doctor twice!
Keep fit and well
Jen.
Hi Wolf? my experience with velcade were somewhat similiar the first time I managed about 4 doses but was taken off it because of constipation ,I did have PN but not till 2 weeks after I stopped velcade and it went after a couple of months . I was under the impression that PN due to velcade is likely to go eventually but PN due to Thalidomide is permanent My second attempt at velcade was ok for the 3 months I was on it but it had no effect I am now on my first course of Revlimid and the lovely dex and I cant say I am enjoying it at all , hopefully next month will be better I would sett;e for being just a little less tired during daylight hours!! Sounds like it is doing the trick for you and I hope for me too. Jen have you tried talking to your specialist nurse about never seeing the same doctor twice? It really isnt good enough we need a good working partnership with our doctors to get us through this minefield called myeloma love Bridget x
Hi Jen,
Well good luck. Sounds as though you are starting on the standard dose. The length of treatment depends on how well you tolerate it and you need to be aware of the option to reduce the dose before abandoning it. So the nurse gave you the right answer.
The side effect I forgot to mention when I was still on the full dose was peripheral neuropathy, in the hands particularly. I couldn't write or sign a cheque!!
I also believe there's a deal whereby if a patient completes 24 or 26 courses the drug maker supplies further courses free of charge to the NHS.
Wolf
Welcome to our merry band Christopher.
8 years is excellent to hear. You are right about the 24 courses and then it is supplied free of charge to the NHS.
I had/have Thalidomide induced PN in my feet, I call it "spongy foot" because that is what it feels like. I say had/have because there is no doubt in my mind that it has eased over time, about 6 to 9 months now since I stopped taking Thalidomide.
I will follow your post with interest. I am diagnosed in 2009, aged 68, and have just passed through my SCT (Dec) and am awaiting results on 25th , yes this Friday:-) .
Kindest regards
I'm on Revlimid and Dex and have been for some time. However, things aren't on hold as well just now.
My problem is mainly the steroids. When I take them, they wipe me out completely and I have 7-10 days where I'm totally useless (ok, some would say that's a normal condition for me!) I feel faint, lethargic, 'down' am vomiting and just can't get off the sofa.
Now, in the hope of extending my days, the Dex has been put back to two pulses in the cycle but to be honest, this means I only have about 6 functioning days and I think I'm going to have to consider whether it's worth it – extra days but being too weak to do anything or spend time with family and friends don't seem valuable. It's that balancing act again.
xxxxxxxxxxxxx
One thing I am seeing already is the variation in treatment across the country. In my 8 years there have been new drugs coming out at quite regular intervals and I've been lucky enough not to have a problem in gaining access to them quickly though not without subsequent problems.
I had Thalidomide (CTD) before my SCT. It was very effective initially then I had to report the symptoms of what turned out to be clots in my legs when my usual haematologist was away. I ended up with a pulmonary thrombosis after being told to ignore the symptoms and get on with it!
Spongy foot is a good description. I still get this but the Pregabalin controls it and I no longer have the needle stabs in the feet and related insomnia. This was all down to Velcade: on other drugs I'd only previously had slight numbing of fingers & toes.
I hope the results today are excellent and will earn you a long holiday from treatment.
Hi Wolf My husband has been on Revlimid now for 15months, he started on 25mg with dex. Last August he became totally exhausted and considered stopping treatment as he felt so ill,his consultant decided to give him a treatment holiday for 3 months ( the Revlimid had reduced his PPs to undetectable levels) He restarted again in November as his PPs started to creep up again. She has put him on 10mg without the dex, he is still tired but seems to be coping better. He to had to come off Velcade after 4 cycles because of PN which causes him quite alot of pain, we saw his consultant on Monday who has refered him to the pain clinic , he has taken gabapentin for months but it seems to have stopped working
Take care
Sue
Hi Susannah,
Your husband's side effects are comparable to mine. he could ask about Pregabalin if Gabapentin no longer works for him. My GP was anti-Pregab because it is apparently much more expensive, but the pain clinic recommended it and it certainly works for me (coming up for 3 years now!)
I'm interested in comments in other threads that with Revlimid the first cycle is the worst. My own experience was that after the initial 4 days with dex. it was OK until the 3rd cycle then unbearable in the 4th which is when I had the dose reduced. How are your husband's PPs on 10mg with no dex?
Best wishes to both,
Wolf
It's so interesting to read everyone's comments on their experiences. I have to confess that I am dreading tomorrow night when I shall have to take the first dose of Revlimid. My biggest concern is the fact that I couldn't tolerate thalidomide during my induction therapy. I certainly don't want to lose my voice again or end up with numb lips and the tip of my nose!
Bridget, it would be great if I could see the same consultant at least twice. Unfortunately, my hosp cannot manage to find a permanent consultant willing to take on the post and has to make do with locums. They have varied in ability from the chap who asked me to tell him about my condition because he knew very little about myeloma to the Polish doctor I had during my Velcade treatment – he really knew his stuff and inspired confidence in me. The doctor I saw last week seemed very competent too but will he stay? I shall have to wait and see, I suppose.
Jen
Jen,
Im interested to hear of advice to start Revlimid in the evening. This is quite contrary to my experience, especially for the early days in the cycle when you also take insomnia inducing Dex, so I've always breakfasted om the therapy with no sleepy problems.
Just taken my last of this course…week off from tomorrow and clinic next Monday, which raises another point:
When I go to the clinic, they take quantities of blood, but some of the tests take up to a week in the lab so although the consultant sees them, she cannot discuss them with me until my next visit. I have raised the question of giving a blood sample say 1 week in advance… they would do it but not at all keen! What happens in other hospitals?
Best wishes'
Wolf
Hello there Wolf,
My wife attends the clinic just once a fortnight now and she must give blood for the various tests before she gets her treatment of Valcade. We wait for about two hours and then most results come back. Some other test results dont return for a couple of days and only then does her doctor see them. Unless there is something amiss or urgent, he will wait until her next visit and then discuss any issues. He has said to us, over the course of various treatments "when you dont see me then all is well". So, when we hear nothing from the hosp we assume all is OK. "No news is good news". Perhaps this is the same way that your doctor does things. Have a chat with your team nurse and let them know of your concern. Best of luck.
John
Hi John.
Sounds exactly the same system my hospital has. As I said before, in principle they would send me away with blood forms but they are really not keen so I haven't pushed it, especially as I have only once in 8 years been hauled back between normal appointments. It's the PP count that takes the longest, I believe.
Just interested to hear others' experiences.
Wolf.
Hi Wolf Thanks my husband will mention Pregablin when we get the appointment at the pain clinic His PPs have gone fron undetectable to 3 but his consultant says she is not to worried as Michael was on 10mg before his 3months off, and what she says is that the Revlimid has to get into his system again, so she will wait to see if there is any change when we go back in 3 weeks. She did say because of the problems he had on the higher dose she would be loathe to increase it again, so watch this space.
About the bloods Michael has his done at our GP surgery about 4 days before his appointment, and then we get all his results even his PPs, but what with all the changes in the NHS I dont know how long that will carry on
Best Wishes
Sue
Hi Christopher, I give my blood sample at my surgery about four days before my hospital appointment. As others have said it does mean that you have all the data to discus at your appointment, which I very much prefer.
Kindest regards
David
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