I was on revlimid and dex for 6 months and it got me to almost complete remission. The dex consisted of ten pills once a week so I coped with that OK. The main problem was I just couldn't sleep that night. I'm now on three revlimid pills per week as maintenance and that seems OK so far. I have the usual tiredness, neuropathy etc but as its…[Read more]

Hello Jo,

I'm really very sorry to hear your news. You are my number one hero on this forum. You've given me great advice and your posts have given me hope. I pray that you will get through this OK. Just under 3 years sounds not too long to me, but better than just under 3 months I suppose. At least mm does give us all time to get…[Read more]

Hello Jim

Welcome from me too plus my deepest sympathies. I got mm last year at 57 and felt pretty cheated so I can imagine how you feel.
I started treatment with Velcade and then switched to Revlamid plus steroids. After 6 months of that I almost reached full remission. I didn't have the stem cell transplant and am now on maintenance…[Read more]

I would indeed have been there, but it is the mother in law's 80th birthday gathering in Bournemouth. Please give Prof Schey my regards as he is the specialist who looks after me. I hope there is some good news re drug trials etc.

All the best

Scott

Dear Eve,
what an excellent post. It certainly makes you reflect on life post MM. It is about a year for me too and like everyone else with MM it has been a year of going to a very bad place and half way back again. I'm not quite in full remission, but close enough. However I will never get my fitness back again and I just have to accept…[Read more]

Good one. Here is one for you….

An elderly man is stopped by the police around 1:a.m. and is asked where he is going at this time of night.

The old man replies,

?I am going to a lecture about alcohol abuse and the effects it has on the human body?.

The officer then asks,

?Really?

Who is giving that lecture at this time of…[Read more]

Wow. You are all lucky as far as I'm concerned. I'm constantly cold, but I guess that is because my kidneys are only working at about 18% so I assume you all have better kidney functions. I wouldn't mind working up a sweat from time to time. I guess the only way for me to do that now is to head for a steam room!

You have my sympathies Debs…[Read more]

Hi Terry

I'm just back from a couple of weeks in Spain and thought I would add a few lines in support. I was diagnosed win mm end Sept last year and was given velcade plus DC in combination. I had a very bad reaction and was too ill to keep taking it. I switched to Revlamid in Jan and had six months on that. I'm now on maintenance therapy and…[Read more]

I didn't know there was an info day in Oct. I just had a look and unfortunately it clashes with my mother in law's 80 th birthday gathering so I'll have to go to the next one in London. I see that my specialist – Dr Schey – is the chairperson. He certainly knows what he is talking about. He has done well for me so far….

Hi Alison and Jo

Alison: if you don't have the SCT you will more than likely have maintenance therapy. Mine is going fine so don't worry about that too much. I'm on just three Revlimid pills per week. They make you a bit drowsy so I take them before going to bed at night. I'm fine then next day. I'm back playing golf so getting some normality…[Read more]

You are telling me, it's a lot of pills, plus they are not small. I do feel sick from time to time but I put it down to reduced kidney function and the revlimid. I don't usually actually get sick so not too bad, although I did get sick driving home the other day. Not easy getting sick while driving! Maybe I had overdone things as I'd been up the…[Read more]

Hi Jo

Many thanks for the information. I was really pleased to hear about the lady who has been on maintenance therapy for 5 years. There is medium/ long term hope for me then. Plus the more I read about SCT on this forum, the happier I am to have avoided it!

Re pills, I am on 12 X 600mg sodium bicarb per day plus the alfacalcidol. I also…[Read more]

Hi Jo

I hope you had a great holiday and the weather was kind to you. My wife and I are off to Spain for a couple of weeks next Tuesday – can't wait.

What is the premidrinate for – your kidneys or the cancer? When I got to almost remission, I went on maintenance therapy which is basically three Revlimid pills per week. I'm also on a vast…[Read more]

Hi Alison

I'm a couple or three months ahead of you in this disease. My kidneys are also badly impaired. They were down to about 15% a month or so ago. I'm with the low clearance unit at Kings College Hospital in case I need to go on dialysis.
Anyway, I recently finished my treatment and was offered the choice of SCT. I declined and went…[Read more]

Hi Debs

I was on Velcade from last Oct to Jan. I had to stop that treatment as it was doing more harm than good. I also ended up with PN mostly in my feet but also in my hands. I've still got it but not as bad as you. It's really confined to the soles of my feet. Some days it's worse than others. I was in a lot of pain the other night but…[Read more]

Hi Eve,

My consultant, Dr Schey, told me that as my kidney function is down at about 15% I had a much higher mortality risk (about 17%-18%) if I went through with SCT. He also told me there was no guarantee it would definitely extend the remission period further than maintenance therapy would. I had already seen from this website that others…[Read more]

Many thanks for that. Its always interesting to hear his views. I opted out of the stem cell transplant when I completed my treatment last month. Its good to hear that Dr Berenson still leans towards maintenance therapy as an alternative. I will see how that goes for me.

All the best

Scott

Hi Ivan

Sorry to get your bad news. It brought back memories of last Sept when I got my diagnosis. I'd never even heard of myeloma at that stage. As everyone has said though, you soon become an expert on all the terminology. I've just finished my course of treatment. I have opted out of the stem cell transplant as my kidneys are wrecked and the…[Read more]

Amelie,

I would imagine a lot of people have read your posting. Maybe someone can shed some light on this for you soon. I have just finished my course of treatment and as my kidneys are badly impaired I didn't go for the SCT as the mortality risk was a lot higher for me so I'm afraid I am useless for your enquiry.

Good luck though

Scott

Hi Dai

That is indeed good news for you. It's interesting that you felt slightly disappointed. I didn't feel overjoyed at my news either. I think like you it's because I stll felt pretty bad. Lethargic, neuropathy in my feet and hands plus still have to tackle the osteoporosis in my spine. I'm still not taking anything for that yet as it may…[Read more]