This topic contains 9 replies, has 8 voices, and was last updated by 
Helen 12 years, 11 months ago.
As a newbie I'm probably out of line but the Joys of Revlimid string was so long I thought I'd start a Part II. Apologies if I have stepped out of line!
I had done a trawl through the posts and couldn't see any reference to people experiencing side effects that were akin to severe jet lag.
John (my husband) is just coming to the end of Cycle 2 of Revlimid and this week he has started to feel very strange. All floaty and weird, and yesteday he was overcome with absolute exhaustion. He spent last weekend away at a broadcast convention overseas and it may be that he over did it slightly – so it's possible it's all caught up with him. We both (particularly John) tend to forget he's on some very serious drugs.
The info on Revlimid certainly warns of tiredness and I just wondered if anyone else had experienced this sort of thing? He's not had the aches and pains I have read about on this site, nor the tummy problems (so far!) – it would be good to hear from anyone else out there with similar experiences. He has been stubborn to treat all along and as he has had anaemia almost all of the time since diagnosis 4 years ago (apart from a slight boost post SCT), and the docs have queried an additional disease (myelodysplasia) which is why he has had so many transfusions and is on a nasty product to remove excess iron. It may therefore be he's reacting differently to other people (and I wouldn't be surprised!). A
Hi Alex I am on my 7th cycle of Revlimid and exhaustion has been a constant throughout It seems to be a very common problem too!! All I can say really is go with the flow and when John feels he needs to rest then thats just what he needs to do It didnt take me long after being diagnosed to realise that there is no choice but to listen to my body and rest when I have to A few times when I pushed myself to the limit , mainly through frustration , I paid the price afterwards so lesson learnt!! I hope you get some answers regarding the anaemia soon , it must be very frustrating Take care and I hope John feels a bit better soon Bridget
Hi I was on revlimid for 4 cycles and the tiredness was terrific. I kept working and sometimes could not come home as I felt to exhausted to drive, ended up having to get lifts from people. Light headedness and trembling muscles so I couldn't do anything til I'd had a sleep happened on some days but I couldn't predict which would be my worst days, there was no real pattern. The docs said I was probably doing too much and not to push myself as the drugs were so powerful
Helen
Hi
I had my SCT in Feb and the last three months I have been back on Revlimid. In addition to the usual symptoms you mentioned I have felt quite strange at times. I describe it to my husband as being like a goldfish looking out as everything seems rather vague and distant. I have also had some worrying short term memory losses and there are some days when I certainly wouldn´t drive a car or ride my horses.
The side effects have become so severe that tey are giving me a "holiday" from the Revlimid while I hopefully start to feel better.
Don´t know how your husband is continuing to work. I loved my job but couldn´t possible have kept it up any longer than I did. I hope you can persuade him to rest when he can (not easy I know to persuade us to slow down!)
Hope things progress well
Best wishes
Carol xxx
Thanks to all of you. It's been really helpful for us both to hear of all your experiences. John read your comment about goldfish Carol and he knew exactly you meant although not quite so intense. He's had memory loss too but we can't entirely blame the treatment for that as he had a quad bypass 8 years ago and that definitely definitely made an impact! He's always been a bit forgetful too!
After his wobble on Friday when he slept/rested much of the time he picked up on Saturday and Sunday then returned to his clients' office on Monday albeit for half a day as he had to go to the hospital for an MRI. He had a bad infection in his hip in July and we're waiting to find out how well the tissue deep inside looks to be recovering.
Work has been a source of strength for him even when he's felt ghastly. He runs his own business and no work means no money! He really enjoys what he does (documentation & proposals for broadcast manufacturers) and it gives him the motivation to battle on. Although there were times before his SCT 3 years ago when he thought he couldn't carry on even living he felt so grim from all the drugs he'd been given. He pulled through although he's now on his 2nd relapse which was so disappointing.
Thanks again and best wishes to you all with your battles!
Alexis
Hi Alexis
I was on Revlimid for 4 cycles prior to the SCT and yes, I can confirm that like John, it made me very woozey. Several days, I would drop off on the couch during the day. Not an actively chosen nap, but more like slipping away for a while. As I didn't have to work and have no children, I found it quite nice to be able to "go with it", but very hard if you have things you need to do. I couldn't possibly imagine working while I was on it.
I am now 70+ days post-SCT and have been randomised for Revlimid as maintenance medication. A bit of a double-edged sword… It's supposed to be very effective at this stage in keeping the myeloma in remission, but I am not looking forward to the sleepy effects, as I am now feeling quite energetic and wanting to do stuff. It also affected my taste and therefore appetite, as well as the mental vagueness effects Carol describes above. But my consultant has said that if I'm struggling with the effects, we could reduce the dose, or if necessary stop and come off the trial altogether.
On a slightly different note, while I appreciate the enjoyment, strength and probably retaining his sense of self that his work provides, in terms of income, has John applied for Disability Living Allowance? I was coming to the end of a short-term contract when I was diagnosed, so I don't have a job. The DLA I receive along with ESA (like Job Seekers but for ill/disabled people) really make a difference to my finances. DLA is not affected by any other income, so he'd be entitled to it whether earning or not. But it may just ease any concerns about working at less than full tilt and it will help with all the little extras brought on by being ill.
If he does wish to claim, he needs to complete the form as though it's his worst possible day. If you want more info about this, I'm happy to help, or he/you could get support from your local Citizens Advice Bureau.
Hi Alex…I am 9 months post SCT and am on 5th cycle of Revlimid post SCT (Myeloma x1 trial) …and I can relate to what John goes through (light headiness…feeling as if I am not in my body etc) but was successful in getting my mm to complete stringent remission…but on the maintenance programme the Revlimid has now caused my Platelets to drop to 23 and my Neutrophils to drop to 0.22…still the most concerning issue I have is the fatigue…it really affects DAILY life..and doing exercise and overdoing it as my consultant said today is a two edge sword…so don't overdo it and listen to what your body tells you…both of you stay safe…Phil 🙂
I would agree with Jet on the DLA but would earnestly recommend you get the MacMillan nurse to fill out the form, it does make a lot of difference. And, when doing it do not be British, no stiff upper lip, and, ? it will be ok I do not want any fuss etc…? . Put the bad times down.
kindest regards – vasbyte
David
hi there My husband was diagnosed in 2006. had several treatments, the longest only lasting 18 months. He is now taking Revlimid 25. Three weeks on and one week off. Dexamethazone for the first 4 days. He is doing well on this treatment but has terrible hot and cold sweats. he says it is like icy water running down his hot skin.It has been a rollercoaster ride. He has had a fractured sternum, 2 cracked ribs and currently multiple fractures of the vertebrae. Has anyone else had problems with sweating?
Hi Anne
I have had lots of hot flushes but I put them down to menopause but there is a thread on here somewhere where some of the gents have also experienced sweats. Dai and Tom i think. I think it might be listed under hot flushes and debs may have started it if you can track it from that.
Good luck with them , I find standing on a cold floor in bare feet the fastest cure:-)
Helen
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