[lorraineyParticipant]

Hi everyone, I don't post very often but I feel the need today! I've been on Revlimid since Oct 2009 after not having a very good response to my SCT. Revlimid has worked and put me in remission, it took a year but finally got there. It's been a bit of a bumpy ride with shingles, water & chest infections etc and the side effects but generally i've coped ok. My bloods are ok but my pp has been rising since Jan 2011 but only very slightly, not enough to cause concern to my Professeur. My free light chains are also within range. I felt really good from December through to February this year, better than I have for a very long time…I had lots of energy, doing housework and going out etc but I slowly started going downhill. The tiredness kicked in, lack of energy and back & rib pain. Also got pains in my arms & legs which i've not really had before. I've been trying to fight it and carry on but i'm struggling, it's getting the better of me 🙁 I saw my Professeur last week and he said my bloods are still good, but is a bit baffled because when he felt down my spine I nearly jumped through the ceiling and he knew something wasn't right. He's obviously concerned about this along with the pain and rib pain. He's sending me for an MRI to see what's going on, my last one in October was good, the tumours on my spine had shrunk and there wasn't any damage. He thinks the pains in my arms & legs could be a possible side effect of the Revlimid but who knows! He suggested I have a break from the Rev for a couple of months to give my body a rest after constant treatments for over 2 years and to see if the limb pains ease off along with the other side effects…hot sweats, cramps, diarreoah etc (generally I cope ok and they come & go but lately have suffered with them more often). I agreed to having a rest from it and I trust my Prof 100% he's a top Myeloma Specialist here in France, but I feel very emotional at the mo. Part of me i'm happy to have a break but also feel like my security blanket has been pulled from beneath me…I hope this makes sense! I have his direct phone number and email so can contact him if I have any problems or changes etc.
I always try to be upbeat about it all but sometimes I crumble and I feel like I am now but puting on my brave face! I have a wonderful husband who is a great support and is very understanding and my children are fab too, I don't always let on to them how I feel because I want to protect them from it…as I know everyone on here does.
I also feel isolated at times living here as lovely as it is, but so miss my family & friends at times such as this.
Sorry to waffle on but needed to offload.
Take care all of you,
love n hugs Lorraine xxx

[susannahParticipant]

Hi Lorraine Just wanted to let you know, my husbands on Revlimid and has been for been for the last 18months, last August or there abouts he became so exhausted that he had a treatment holiday for 3 months, it did him the world of good and has tolerated it much better since,

Take care
Sue x

[lorraineyParticipant]

Hi Sue,
Thanks for your reply it's made me feel a bit better…I hope your husband's doing well.
love n hugs Lorraine xx

[batterboy58Participant]

Hi Lorraine

I am sure your prof knows what he is doing so don't let things get to you too much, I know that no matter how upbeat one is it is sometimes hard to put everything in the right boxes and it is good to offload, I hope you feel better now.
I myself have been living with this disease for 10 years now and have had 2 SCTs, the last one being only 18 months ago, however my paraproteins are just beginning to creep up again and if they go up much more I will soon be looking at Revlimid as a next treatment option.
I have had Thalidomide before and tolerated it well, as I did also with Velcade so I am hoping to do the same on Revlimid. People say sometimes that we are so brave living with this condition but the way I see it is we don't have much choice and worrying will change nothing so I just take things as they come and hope to survive until the next miracle drug comes along or maybe even a cure one day.
In the meantime enjoy every day and make the most of life is my motto.

Best wishes John

[brochoParticipant]

Dear Lorraine of course you should offload sometimes and where better than here , we all understand what you are going through! As for the pains in your arms etc one of my problems with Rev has been the weekly cycle of absolute agony in my arms as well as everywhere else .I think in my case it is the Rev but whether it affects me more because I have extensive bone damage I dont know It does sound a good idea for you to have a break though you have been on it a long time Your doctor sounds great it makes such a difference when you have faith in them doesnt it Hang in there Lorraine and if you have the odd wobbly moment you know where we are love Bridget x

[lorraineyParticipant]

Hi John and Bridget,

Thankyou both so much for your replies I really appreciate it. You have both made me feel better and I know i'll get through this wobbly time soon.

Thanks again,

love n hugs Lorraine xxx

[tomParticipant]

Hi Lorraine

Yep throw all your worries and stress in here (( :'-( )) we can take it am sure 😀

Hey even I wobble at times and I am the original "Onwards and Upwards" and My young bride Elaine copes with it all:-D

So keep em coming 😀

Love

Tom "Onwards and Upwards (with the occasional wobble)" xxx

[GillParticipant]

Hi Lorraine

Off load all you like. I cannot help with advice on the revlemid as husband Stephen (mm) has not yet been on it, but it looks like it could be on the cards.

Do keep us posted as to how you are doing Gill XXX

[KWilsonParticipant]

It's quite understandable that you're worried about your Rev 'holiday' and the unexplained pains. I hope it gets sorted soon.

xxxxxxxxx

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