[HelenParticipant]

Hi Carol
Not sure if you were speaking to me but I'm answering anyway!!! I have light chain myeloma so the pp level was low and the sflc's were not too high, I've been lucky to be picked up relatively early. They like the levels to drop and plateau not rise again so everyone is going to respond differently i think. I asked what they were hoping mine might drop to and there was no hard and fast rule though generally the lower the better. I'm the first newly diagnosed mm on revlimid at our centre so there is no one to compare with. They did offer to reduce my meds too! When i felt soooooo- grim but by the end I just kept telling myself they seemed to be working and it couldn't last forever.
Helen

[CarolBradley1Participant]

Thanks Helen that does help – it´s really encouraged me to put up with feeling rotten – I might stop whinging now!
Best wishes Carol

[HelenParticipant]

Hi Carol
I'm just back from sct work up this morning and asked about the revlimid follow up bit on the myeloma xi trial which I too am in, the next phase for me is still over 3 months away, so is this the section you are at? The trial people seem to think that you need a few months to get used to it and it will settle down, I clearly didn't reach that point as the combo of rev, dex and cyc worked by month 4 – by the way whinging is good!!!!
Helen

[colpotParticipant]

Hi Carol

I am at present on 20mg dex every Mon and Tue I find it really helps me through the week but it does disrupt my sleep on these days.I hope the revlamid works well for you, I know a number of people on it and they are doing ok. Forgot to say the dex takes away my back pain!
GOOD LUCK
COLIN

[CarolBradley1Participant]

Hi Colin
Just heard that my paraprotien is at 0 !! Can´t quite believe it and am hoping it´s not a "fluke". Glad the dex takes away the back pain – I have had that before the SCT (it made me think I had superhuman powers and was cleaning kitchens etc at 3 am in the morning) but not since – perhaps I could do with some now to perk me up!
It really helps to talk to other people on the trial – I don´t feel "on my own" quite so much now – hard to talk to family as they get upset and worried enough – don´t want to be the cause of any more.

Take care
Carol xxxx

[CarolBradley1Participant]

Hi Helen
I had my SCT in February then we had to wait 100 recovery days at which point they started me on Revlimid again. I am now in month three at 25mg and although tired and in some pain etc. not too bad considering what it is doing for me. As you will see above in my reply to Colin my paraprotien is at 0 at present – we just can´t quite believe it after so many years of constant anxiety etc.
Best of luck with the lead up to you transplant. One hint I have heard from lots of people since I had mine was to such ice lollies etc whilst they are giving you the high dose chemo. They have found that they had far less side effects in the weeks after than the rest of us. Anyway, can´t do any harm to mention it to your nurses. I think they are already doing this at Durham (?) not sure about that but one of my own medical team mentioned it to me also but unfortunately AFTER my transplant so I can´t say if it works for sure.

Good luck and best wishes
ps. after the good news we have just had I won´t be whingeing for quite a while but I will happily indulge everyone else whilst they do!!!! After all everyone has been listening to me do it for years now xxxx

[HelenParticipant]

Hi Carol
We do the ice thing up at our hosp too in fact the advice here is to make your own flavoured cubes and take them with you as they taste better than hospital water and you choose what you prefer, I thought i'd try champagne and White wine!!! Seriously though I've been quite laid back about the sct but having signed the consent form 'no guarantees and no cure' yesterday it's all a bit daunting now, especially as I'm really well now, (apart from the pains from the zometa which I had yesterday)
I'm amazed that you have got back to riding that is a serious achievement and the zero pp is ace I felt like that in June when they said mine had stayed down for 2 months
Helen

[avantrompParticipant]

Hallo everyone
I find it helpful to read everyone's experiences, so I decided to add my bit. My name is Annette and I am British but have lived in Holland for over 30 years. I was diagnosed with MM in Feb.2010 when I was 66. My paraprotein level was way up, I think in the 70's. I was put onto 10mg. Lenalidomide (Revlimid) a day, almost immediately reduced to 7.5mg. because of my reaction to it. Until the end of 2010 I was also taking melphalan and prednison, together with antibiotics and aspirin-based blood thinner. Every 4 weeks I received an iv drip of 30mg.pamidronate. This latter was fantastic. Gradually all aches and pains associated with MM went away. Throughout this year, except for the first month, and now I just lived normally, except for increased fatigue.
Now I am on maintenance. Lenalidomide is still 7.5mg. (plus compulsory blood thinner to counteract the L. and stomach protector when needed to counter the blood thinner. My paraprotein level is still going down and is now 7.5.
MM is unpredictable so who knows what the future holds, but life is good at present.
I hope I haven't been too boring, but I want to give encouragement to new sufferers.

[brochoParticipant]

Hi Annette its good to hear from you and no you were not at all boring Great results from your treatment plan and it certainly sounds as if its made a big improvement in your life I think the fatigue is hard to avoid , it either comes with mm or with the drugs we take , I know I have become a champion cat napper Heres to you staying well for many more years best wishes Bridget

[mhnevillParticipant]

Hi! Thank you to everyone who has contributed to this stream and best wishes to you all. It is interesting to keep up with side effects and outcomes.

This ties in, a bit, with Dai's contribution today about a form to track it all.

Keep fighting all of you. The good news is that MM isn't always winning. Just a shame that the drugs take so much out of everyone.

Blessings to you all.

Mavis

[CarolBradley1Participant]

Hi all – a little bit of GLOOD NEWS!

Re: Myeloma 11 trial

We saw the specialist yesterday who was really pleased (pp still at 0) and has reduced the revlimid from 25mg to 10mg so I am hoping that some of the side effects reduce. I have lost quite a bit of weight so I am hoping that will stop now and my appetite improve. I don´t have dexamethasone so at least I don´t have all that to contend with just now thank goodness.
I hesitated to write with good news as I know there are many that don´t have such good news at present but on reflection I think that we have had quite a lot of sad news and perhaps a bit of good news might help to cheer us up – well I hope so.

Take care all
Carol xxx

[brochoParticipant]

Hi Carol its great to hear your good news please dont heasitate to share good news with us it always lift our spirits and as you say lately there has been a lot of sad news .I hope you start to feel the benefits of a lower dose very soon although it does take a bit of time to get it out of the bloodstream Heres to lower doses for a long long time !!! love Bridget x

[MinParticipant]

Hi Carol
Good news is the best and the more of it the better. Bad news happens but hey someone has to do it.
Hope your 0 pp lasts a very long time and you can get on with life now. All the best
Min

[DaiCroParticipant]

I'm with Bridget and Min… good luck with your remission Carol and long may it stay fixed at 0pp.

There are quite a few 'regulars' to this forum who are living their lives in remission from MM and we rarely see hide nor hair of them… and to tell the truth I am glad that they are out there hopefully making the most of their lives for as long as they can.

When they do return they will need us… and after a while they will be guiding, comforting, advising, exchanging experiences and helping to sustain our small community. Its what we do. 😎 😀

Dai.

[colpotParticipant]

Hi Lorraine
Just read you great message it gives us all hope and more determination,I hope your PP stays where it is and you stay pain free good luck when you see your Prof' most of all stay positive.
Be happy
Colin

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