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 night??
The man replies,
?My wife.?
Boom boom!
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 as you seem to get extremes eg your peripheral neuropathy. Good luck.
Scott
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 hoping for this to keep me going for a while yet!
Good luck to you
Scott
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 back in my life. The PN in my feet gets pretty sore after 4.5 hours walking though. My golf chums tell me I walk like I've wet myself at that stage. Mainly because I can't feel my feet properly. I'd rather that than sit at home though. One of my ribs feels like it may be cracked so that's been pretty sore too the last few weeks. Especially when I try to whack the ball too hard. However I read about other peoples' problems – especially Debs. She has terrible pain with PN so I don't complain. My goodness whenever I start to feel sorry for myself I think about others on this forum and what they have gone through.
Jo: in my view there is no doubt at all. Exercise must be helpful. You have just the right balance. Walking is probably the best medicine. When we go to Spain on Tuesday, that is exactly what we will aim to do every day.
Thatnks ever so much for mentioning about the article. I'll have a look at it shortly.
All the best to you both
Scott
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 driving range and hit a couple of buckets of balls. Mind you I'd rather overdo things than sit at home doing not a lot. Just had a lovely round of golf today. Good weather and good company, what can be better on a sunny day like today.
I'm not sure I would go for the SCT even if I was younger (I'm 58 now), but each to their own on that one.
All the best
Scott
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 take Omeprazole to prevent sickness plus of course the revlimid and an aspirin to prevent DVT. I must ask about premidrinate as I guess something should be done about my bones at some stage.
Thanks again
Scott
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 number of sodium bicarb pills re my kidneys.
I saw my specialist yesterday and I need yet another blood transfusion. Hg reading at 7.8 so three bags of blood tomorrow. He will put me on something called EPO injections next month as this will help avoid transfusions.
I fully agree with you re quality of life and my cancer still seems to be under control so SCT not needed as yet. I'm back playing golf again and now have a good excuse for slicing the ball!
All the best
Scott
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 instead for maintenance therapy. In my opinion, the risks outweighed the potential benefits. There is no guarantee that a SCT will give you x amount of years in remission. It may fail within a few months.
As you already know you could end up with far worse kidneys and indeed there is a higher risk of death during the procedure.
Dr Berenson also is not hugely in favour of SCT so it is not universally supported.
Hope this helps.
Scott
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 that's probably because my wife and I had been to a funeral ( a friend lost his battle with cancer) and I was standing for ages. It seems to be worse at night and then calms down again first thing next day. I'm taking so many pills that I don't want to take pain killers too so I just put up with it. My specialist says it may get better but on the other hand it may not! I live in hope.
All the best
Scott
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 (including Jo, who signs on as Badger)had not taken SCT so it is not a must do. Plus the SCT process sounds horrible and I've had enough suffering these last 9 months or so. I want to get back to some sort of normality if at all possible. Not easy with partial neuropathy in feet and hands plus feeling very tired and needing regular blood transfusions etc etc. At least I have a good excuse now when I do occasionally try to hit a few golf balls!
This is a very individual disease and everyone has to make their own decision as to what is best for them. It's a bit of a gamble, but as we have discovered, thats what life is all about.
Good luck to you and Slim.
Scott
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 mortality rate is higher. It also sounds horrible and I've put up with enough over the last 9 months. Quality of life is important and I want to enjoy the rest of the summer as best as I can.
Good luck for your journey.
Scott
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 impact further on my kidneys so I'm waiting to see what can be done.
However at least we both seem to be going in the right direction. Long may that last!
All the best
Scott
PS. Manynthanks for the information Gill re your cruise. I'm going to check it out.
