[KeithH17Participant]

Hi Min,sounds like Revlimid is certainly not a very pleasant drug,so what's new with this disease?
My SCT lasted 2yrs 8mths and I still have another bag in cold storage at the good old RVI should they decide to use them.
Allo's can be tricky because of the risks of GVH but they do seem to be having more successes as long as the match is a good one.
Whatever they decide to do Min I hope Peter starts to feel better soon as there's nothing worse that feeling sick all of the time.
You both deserve better.

Best of health to you both soon.

Keith.

[brochoParticipant]

Dear Min thankyou thats very reassuring . I realised today I had slipped up in taking Revlimid at the same time as dex so tomorrow I will take it last thing and hope to sleep like a baby!! What dose of dex was Peter on? I am on 40mg for the first 4 days of each cycle and was told it may be possible to reduce it after a short while. Your new consultant sounds great no wonder you both feel more positive , its a shame not all doctors work in partnership with us patients and our families . Its interesting that a donor transplant is a possibility for Peter , I was told very early on it would not be possible for me , this is in part hospital policy based on age but also my own condition , but at least you have a chance of one so fingers crossed . Have they given you a date for your redundancy decision yet? The waiting must be so frustrating !! love to you both Bridget x

[MinParticipant]

He was on 10x2mg for the 1st four days, His swollen legs and feet are a sign that something is not working, last time he was on thalidomide he was on massive doses in pulses and his kidneys cleared up overnight so hence the reason for the increase…
wouldn't you just know it that he has had swollen everything for about 7-9 days now and today when we went he was fine…
I have a meeting with HR on Monday, to discuss the package and it looks like it could be 31st march to leave but I had said with my application that I wanted to go earlier because of Peter. The organisation is aware of his illness and have given me quite a lot of support and Im hoping that a short conversation I had on Friday was an indication that it might be even sooner.
I cannot sleep as I am itching all over, and waiting for an anti histamine to kick in… cant work out what the hell is causing it but its becoming a regular nightly event.
Oh don't know if anyone has applied for a Myeloma Diary , but now we have it its a bit easier to recall events as time all blends into one. Available for a donation from this site and very very useful for recording medication and blood results etc Highly recommend it for anyone like me with accelerating altziemers!!!! Big birthday tomorrow so Im allowed to be forgetful officially now… no more need to make excuses I cant wait for the bus pass.
luv MIn

[brochoParticipant]

Hi Min I hope increasing the dose does the trick this time too In the past dex has caused water retention problems for me so I have Ferusomide at the ready Could your itching be caused by anxiety ? You have so much on your plate and the waiting for a date cant help , hopefully your lovely employers will let you go very quickly I hope you are doing something special for your birthday tomorrow and you have a wonderful day As for being forgetful I suffer from that too and on big birthdays you are allowed to as outrageous as you feel like Thanks for the diary reminder I have one but havent actually used it yet , I will go and fill it in now , as long as I can remember where it is !!Hope you get some sleep night Bridget x

[ElizellenParticipant]

Myeloma diary???
Where can I get one, Min?

[zasrsParticipant]

Hya

ai have also never heard of a myeloma diary, sounds good for us with increasing forgetful disease.

Good luck min with your redunancy, hope the itching stops soon. Before Gordon had his last sct my teeth went black and the whole inside of my mouth was very sore and i had some difficulty in eating good way to loose weight.

all the best sarah

[MinParticipant]

Hi folks
I have taken a photo and attached it to this post so you can see it. You apply online to this organisation or you can call up for it, it has lots of pages to record hospital visits side effects treatments etc its not a yearly one it will possibly last for several years its absolutely great, Available by donation. I personally thought it was worthy of £20 bit steep you might say but all in all this site does a lot for me personally from my perspective therefore I thought that sum appropriate for me.
It is a very handy place to jog your memory provided you fill it in of course!
luv Min

http://www.myeloma.org.uk/fundraising/fundraising-news/500-patient-diaries-sent-out-since-launch/

[brochoParticipant]

Hi everyone my diary was given to me by my specialist nurse perhaps yours may have some of their allocation love Bridget x

[BADGERParticipant]

Hello Min

Glad to hear Peter is feeling better now.Good news about your redundancy
when I was first diagnosed in the january Geoff wasa due to retire in the march his company let him go three months early with no loss of income or pension which was marvellous. I have the Myeloma diary it is really usful as you say, got it at the London conference last october I use it all the time Also I hope you have a really HAPPY BIRTHDAY today 🙂
Love JO X

[colpotParticipant]

Hi I am new to this forum ,but I feel I must share my experience of Revlamid. I was diagnosed with myeloma 5 yrs ago and it has affected my spine mostly,making it hard to walk very far.
After a course of chemo Iwas put on thalidomide which made me ill,although my paraprotein level came down I had to come off it.
Iwas given Revlamid which had an immediate effect on paraprotein level,I am now on my 38th monthly course and although there are some side effects, the benefits far outweigh them.
I believe that 38 courses is the longest in UK.
It has been very good for me this far and I hope you find it beneficial.
Cheers Colpot

[brochoParticipant]

Hi Colpot what a brilliant post , very encouraging for people like me who have just started on Revlimid. thankyou . Long may it continue perhaps you should go for a world record!! best wishes Bridget

[MinParticipant]

Wow Colpot,
That sounds amazing and its so good to hear of a good experience.
I wonder did you ever have an SCT. Or will you ever have an SCT?
Is your maintenance dose the same as when you began taking it? Where are you being treated? Sorry for all the questions but it is so nice to hear of someone who has stepped outside the usual courses of treatment. Long may your good health continue
Regards
Min

[colpotParticipant]

Hello Min
I haven't had S C T and probably wont have it because of my age ,although my general health is ok ish.
I am on the same dose as when I started treatment(25mg daily and dex' on Mon & Tue).
I am being treated at Aintree hospital in Liverpool by fantastic staff I also have Intratec each month for my immune system and an infusion for my bones.
Thanks for your kind words,
Keep smiling Col

[MinParticipant]

Hi Col,
More questions again Im afraid, have to learn all I can while I can. Never heard of Intratec before now. But it sounds like it must work.
Have you had this from the outset? Does it stop you getting all those nasty bugs? like flu and chest infections? Is the dex 10x2mg?
Anyone who has managed to keep going on one medication for so long and no sct sounds to me like a trailblazer and I want my husband to follow in your footsteps.
SCT sucks or did in his case, and I never did like the idea of making a reasonably well man ill for a long time to make him well for short time! if you follow me. ie Aug to April on cdt May for sct June to Oct off meeds and back on a variety since then.

[colpotParticipant]

Hi Min

Sorry about the delay in replying but original reply went astray ( don`t ask how ).
Intratect is an immunaglobulin replacement made from human cells and this boosts my immune system, I have an infusion every month and have been on it, or similar drug, for about 5 yrs.I have had chest infections but nothing major and have had flu once in that time I think it works for me.
My dex` dosage is 10 x 2mg each Mon & Tue and it makes me feel good for about 4 days, no pain and more energy but broken sleep at night.
I also have a monthly infusion of Pamdidrinate (think thats right) for my bones. I sometimes feel a bit flu-ish after this treament but only on that day.

Cheers Col

[Author]

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