[brochoParticipant]

Hi everyone I hope you are having a good weekend Well I have nearly finished the first week of my second course of Revlimid and despite the dose being lowered to 15mg daily its not a lot better Last night I started to feel sore and this morning every part of me hurts , to the extent I can hardly bear anything touching me , even a feather ( not an exagerration honest!!) I have self medicated with Ferusimide and I am hoping that will ease things in a day or two I have also got conjunctivitis again , I havent had it for almost 30 years till last month Grrr! I am also sweating profusely but I am not sure if thats a side-effect , I dont think its an infection as but I dont have a temperature, does anyone else get this? I really hope this all settles down soon because the thought of being on Rev long term and feeling so rubbish every few weeks is not very appealing !!!But then again what is the alternative Sorry for the whingeing just needed to get it off my chest love from Moaning Minnie aka Bridget xx

[ChrisParticipant]

Hi, I am starting lenidimide next week,I had my transplant last yr. Did you have a transplant? I am in ninety percent remission Thank God and am just back from visiting my daughters in Australia. Would like to hear your story,thanks ,Chris

[MinParticipant]

Dear Bridget,
I know what you mean Peter is just a few weeks ahead of you and on the same lowered dose, he too was all haywire etc when he started the 2nd packet, but in addition he has the worst diarrhoea. Being kept under control with more pills! This has been the case since he started the course.
On the plus side this week he has turned a corner because following on from his zometa last week, his kidneys and swollen ankles have suddenly recovered and no more Ferusimide. I keep telling him its because I have got him drinking a lot of 7up! instead of coke. He does drink lots of water in between, and I have been buying him bottled water to encourage it. (Don't normally)
He has no hospital visits until week after next but he is feeling much better this week and little more energy than before too. Runny nose when he is eating for some reason.
I / We assume therefore that this stuff is working as he didn't get any kidney relief from the velcade. He has not seen the Dr since he was given the new Packet so maybe he may get GCF injections at next appointment.
No sweating but he is very hot, no temperature either. He was like you when he was on Thalid. Soaked in sweat, but not this time. Keep up the fluids and flush those darned kidneys, Hopefully you will feel better once you get into it, I do hope so. This second packet is supposed to be the same as the first and hopefully after that it will be plain sailing for both you and Peter.
Keep your chin up Bridget, hope you feel better soon
LuvMIn

[RozParticipant]

Hi Bridget

Sorry your feeling so rubbish!!

It's hard understanding the side-effects of these drugs and also the side effects of Myeloma. When Michael and I talked about things like this happening to Michael, it was never the drugs it was the Myeloma, then when we blamed the Myeloma it was the drugs. I know alot of what your dealing with though, Michael did. So its the Revlimid. Runny nose. If I just stroked him he'd think I'm hurting him, and he was always saying stop being so rough, so thats the drugs too.
Hope you start feeling better soon, I think once your over this bad patch things will start to pick up.
all the best,
Moan all you like, it does you good
Luv Roz

[mhnevillParticipant]

Hi Bridget

Sorry you are having such a hard time. do hope things start to get better soon. You are such a fighter and a real encourager to others.

God bless.

Mavis xx

[brochoParticipant]

Hi Chris I am glad to hear you are doing well after your transplant A trip to Australia sounds wonderful at this time of year , I bet your daughters were happy you made it Do you have grandchildren as well? I am not sure my tale will be much use as everyone of us is different but here goes— I was diagnosed in 2006 after almost a year of excruciating back pain On diagnosis they dicovered I had lost 3 vertebrae and had a large mass attached to my ribs and lung as well I had surgical reconstruction on my spine which was successful , although it does have painful consequences , but I am able to get about and very grateful I didnt end up in a wheelchair! I had my sct in 2007 and was lucky enough to have around 18 months without needding treatment Then another tumour appeared on my spine and I went on the Myeloma X Trial with a chance of a second transplant It was pretty gruelling as I had pneumonia and difficulty producing any more stem cells due to all the treatments I had had In the end I wasnt picked for a transplant and had oral meds instead After 3 months the beast was back so Velcade was tried for 3 months , unfortunately this didnt work and I have now begun on Revlimid. Apparently the first couple of courses can be a pain but I have been assured it should settle down after that , fingers crossed There are quite a few people on here on Revlimid and it does seem to be fairly well tolerated Good luck I hope you dont get any teething problems and keep us posted how you are doing love Bridget

[brochoParticipant]

Dear Min bless you , it really helps to know Peter is feeling better . I have stopped feeling sorry for myself now , till the next time !! I dont have the runs but my tummy isnt right , I think I read before that Peter is on Lanzoperale so am I Interesting that Zometa has made a difference to the water retention , I realised mine has been forgotten and well overdue perhaps that explains why I have been feeling lousy, I will be straight on that on Monday !It made feel less anxious when you said Peter had sweated on Thalidomide though as I was getting worried it was a deep infection, I can put that one to the back of my mind too .The runny nose drives me nuts and I realised it always does it at mealtimes too , very odd!! Thakyou for geeing me up Min it really helps I hope you and Peter have a good weekend and the weather lets up a bit love Bridget x

[brochoParticipant]

Hi Roz thankyou it means a lot when all you lovely people on here cheer me up I dont feel sorry for myself very often ( not much point !) but its great to have friends when you do I am hoping to be able to bear my clothes touching me at least tomrrow , otherwise I will be sark naked not a pretty sight Hope you have a good weekend and you are looking after yourself too Have you booke a holiday yet ? love Bridget x

[brochoParticipant]

Hi Mavis thankyou for your kind words. I am sure I will be back to normal soon , well as near as I ever am !! take care love Bridget x

[RozParticipant]

Hi Bridget

Hope you've managed to put some clothes on, its a bit cold to be in the nuddy!!

No I've not booked any holiday. I cannot imagine ever going again without Michael. I can't ask Rachael to give up her life for me, so I'll cope if possible or go to Michael if thats the only answer.

Keep fighting the myeloma and the drugs
Luv Roz

[ChrisParticipant]

Hi Bridget,
Thanks for your message and glad to hear you're doing ok now,
I am meeting the specialist nurse on Tuesday to discuss the lenidimide so hopefully it will work for me too without too many sideeffects.My eldest daughter had a baby girl in November so it was lovely to meet her and my youngest daughter is in Melbourne too.My daughter signed me up to this forum yesterdsy so I will be in touch.Its great to tslk to other people who are living with myeloma.talk soon,love Chris

[MinParticipant]

Hi Bridget
I got it wrong, Peter finished his 2nd packet yesterday so now on a week off, Hospital next week for a new packet! Still feeling good.
LuvMin

[brochoParticipant]

Hi Min I am so glad to hear Peter is still feeling good , heres to a lovely week off!! I have just had the worst 2 days ever!!Still very painful and tender to touch , sewating eyc and all in all I just feel dreadful but as I havent got a high temp I am reluctant to see the docs before clinicThanks to you though I am looking forward to next month Hurray the sun is shining!! love Bridget x

[BADGERParticipant]

chin up Bridget
I am so sorry you are feeling so rotten you are such a fighter so I know you will not give up I know several people on Revlimid and once they have got used to it its ok one lady in my support group has been taking it for three years she was one of the original people that went to the press to be allowed to take it she now has a maintenance dose every other day and is keeping well. As for a runny nose ever since I have been ill I get one when I eat strange or what!I hope you had a good weekend did you see your grandchildren we have just come back from Grand Canary had a nice restful week

Love Jo x 😎

[KWilsonParticipant]

The overall tenderness does lessen but I found it was worse on the days when I had the Dex/Revlimid combo so I blamed the Dex (well I would, wouldn't I?)

I had a very itchy scalp too but didn't have a rash as such. I took an antihistamine which settled the itchiness and now I don't get that any more so don't need more antihistamines so I guess you body gets used to it.

xxxxxxxxxxxxxxxx

[Author]

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