[lynnemallaceParticipant]

Hi does anyone suffer from a very hot face when taking dex and lenalidomide ? My temperature is ok however only my face seems to get very red and burns……… Anyone experienced this side effect ? x

[EvaParticipant]

Dear Lynne,
I'm not on Lenalidomide but I get a very red face about a day after I take steroids. The redness comes and goes and is accompanied by hot flushes. When I stop taking steroids after a couple of days I get a pretty bad steroid withdrawal with great fatigue.
Can you tell us a bit about your myeloma?
Best for your treatment,
Eva

[jillsParticipant]

Hi Lynne,

The flushing is a side effect of lenolidamide, it was specifically mentioned to us when Mum started taking it.

All the best,

Jill

[CarolsymonsParticipant]

I have a red face and hot flushes on dex…also had terrible aches and pain on withdrawal and tachycardia when my pulse rate was very low. Now I have been given a tapering dose of dex having 10 then 5 then 2 in the 3 days following the high dose dex. and that has solved both pain and pulse symptoms. Of course it means another 17 dex pills twice each cycle of CDT but it is better than fainting from low pulse rate I guess!

Carol

[lynnemallaceParticipant]

Hi Eva. I was diagnosed with MM on 5th July 2013. I am 44 years old and had been off work with back pain since January 2013, treating the pain as a trapped nerve so when I was diagnosed it was a bit of a shock to say the least. I am on the Myeloma X1 trial and I am on my second cycle of treatment RCD. I am currently doing ok with no major side effects apart from tiredness and a red face and ofcourse weight gain. I still have my own hair and looking at the positive outcome. I will receive a Stem cell transplant at the end. My pain has reduced greatly although I received my first infusion of Zometa on Thursday and today Sunday I seem to be in a little more pain which I think is side effect of Zometa. I enjoy being on this site as you get a lot of useful answers. Take Care. Lynne x

[lynnemallaceParticipant]

Thanks folks. Thanks for the information x

[beckaParticipant]

Hi Lynne

I know exactly what you mean. I'm 2 yrs post SCT & taking Lenalidomide as maintenance.

For a few days at the start of each cycle my face, particularly around hairline, reddens & burns as if sunburnt.

Unpleasant but once doc said not to worry about it I dont. I'm very lucky to be in remission, back at wotk & feeling great. Can go hours now without thinking about myself. . . what a relief !

Hope all goes well for you on your journey & you get a similar result.

Becka

[lynnemallaceParticipant]

Thanks Jill x

[lynnemallaceParticipant]

Hi Becka that is great you are in remission. Can you give me some information on SCT. I am so worried about it. Can I also ask how old you are ? I am 44 x

[beckaParticipant]

Hi Lynne

You are so recently diagnosed can imagine how overwhelmed you must feel. Do you think you could try to park the worry about SCT for now. You’ve a lot on your plate to deal with without adding something that’s not going to happen for months.

The SCT is not pleasant there is no point in minimising it. However, neither is the treatment leading up to it and we manage that! In my case, it was so well worth it. In fact, I wouldnt hesitate if a second was needed. You have a major advantage when it comes to SCT . .your youth ! I was 56 when diagnosed, 58 now.

You mentioned you were keeping an eye on your temp. .that to me is the way to go. Try to deal with what faces you on a daily basis. Let tomorrow take care of itself. Be eagle eyed for any infection, act fast if you suspect any, dont worry about asking your medical team questions or bringing to their attention anything you may feel is trivial, thats for them to decide. Keep notes, we’re all inclined to go blank when asked how we are, be as kind to yourself as your circumstances allow & drink plenty of fluids !

I'm in Ireland so there are some differences in our treatment regimes but I’d be happy to try to answer any questions you might have. PM me if you’d prefer.

Becka

[lynnemallaceParticipant]

Thanks Becka 🙂

[DebsParticipant]

Hi Lynne
Just to say that I am someone else who has been on the Myeloma XI trial and I had revlimid, followed by velcade and then SCT. AS Becky said, it isn't a lovely experience (probably no surprise there!) but you get through it and then look back amazed at how far you have come!
I am on revlimid maintenance now and get hot flushes regularly….although part of that for me is due to going through an early menopause.
Really happy to discuss anything you want to about the trial, treatment etc. Bear with me though, I'm not always great at replying quickly as I have a 7 and 9 year old and work four days a week!!!!
Take care
Debs

[TinaPParticipant]

Hi. Looks like we are both at the same point in our treatment on the MyelomaX1 trial.

I started on 10mg Revlimid 21 day cycle. 3 weeks on and one week off
But came out in a really bad rash.

When he changed me onto 5mg I thought all would me ok..
Oh no – rash came back.

Saw my haemotologist and he prescribed strong anti histamine. After the first week my rash, which covered my whole body had gone

I hope this helps.

Tina

[DavehoganParticipant]

Hi All , ive been watching from the side lines
Are there any side effects any of you have had using rev or Lenidimide please , ive got to decide by next week if I want maintainance or not …
thank you

[avantrompParticipant]

Hello Dave
I have been taking 7.5mg of lenalidomide for almost 4 years, 21 days on and 7 days off. My side effects are minimal, with no neuropathy but intermittent diarrhoea. Everybody seems to respond differently so good luck with making your decision.
Annette

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