Hi Dai,my take on this would be that good health can only benefit the patient as the stronger you are the more prepared your body is to fight against the MM i.e. stronger immunity. The medical profession are always circumspect and slow to acknowledge anything that they don't have a cast iron explanation for but that doesn't mean there's no truth in it. Stay as well as you can I would say and you never know those Light Chains could well start to come down,I hope they do.
Keith.
well,spoken to the nurse today and my worst fears have been confirmed,I will be taking every day and without a break apart from when I reach the end of each cycle and this will be for the first 4 cycles at which point the dose will be reduced. She said they wanted to throw as much as they could at the MM in the early stages therefore the main dose of 4 days at 20mg would continue followed by the next 4 days at 10,5,3,1 so withdrawal will be minimised. It's a question of toleration and apparently I am even though I don't feel like it. But there is some good news in all of this in that things seem to be working. PP's have dropped from 29.66g/L to 15.2gL in just over 2 weeks Platelets 81-55 Neuts 1.3-1.5 will both need to be watched and other bloods ok.
At least I know what's happening to date,have a meeting with Consultant next Monday to discuss how the first cycle has gone.
Keith.
Thank's Helen/Dai for your content. Like you Dai I'm also sweating buckets and I've adopted an ashen colour akin to a block of limestone. Tiredness,Diarrhoea but now I think it could be Constipation again real fun this. Yes I'm going to contact the Hospital tomorrow as they forgot to contact me today as they promised. This Dex thing is real strange, the way I understand it goes something like this 20,20,20,20,10,5,3,1 then it starts allover again and no breaks apart from when the cycle ends…if I'm still around by then LOL. I think where they have gone wrong is they should have dropped the last 20 and used the 10,5,3,1 in it's place instead of as well as, which would be a more gradual withdrawal. Does that sound right to you guys? Maybe I'm reading it wrong but I don't think so but I will be checking with them. In the meantime I'm going for an audition to be an extra in a film. It's the latest version of a famous George Romero blockbuster Night of the Living Dead…there's always a silver lining LOL.
Keith.
Hello Eve, I've been out today and up to now no horrible Diarrhoea. You talk about Slim being unsteady on his legs due to the Dex well so am I. I totter about like an old man and I'm as white as a sheet. I'm still passing blood back end on and off depending on how frequent the Diarrhoea bouts are. I can tell you I feel as if I've aged 10yrs in the last 2 weeks. It might be killing the MM but it's a toss up as to who succumbs first me or the Cancer it's as hard as that. When I was at the Hospital yesterday my Dex was rescheduled meaning in addition to the 4 days on instead of stopping on the 5th day I will be taking 10,5,3,1 over the next 4 days. Yes it's a gradual reduction to minimise any withdrawal symptoms but is also an extra 38m every 4 days which equals an extra 152m added to the 320m a grand total of 472m each cycle which will be for 4 cycles. I think there's something wrong here with the calculations and I'm going to check with the Hospital next week. Surely the last Dex day should be scaled down and not given in addition to the normal four days but instead of. That is one heck of a lot of steroids and given how I am feeling it's going to be a really tough time for me. On the plus side the leg cramps have gone although I still have the hand spasms. But all in all if I can crack the bowel problems I'm Not at all bad but the Diarrhoea is the issue I must get to grips with.
Keith.
Hi Suea, MM is hard enough to deal with without having a Consultant who wants to throw the towel in. All avenues must be explored and you have the right to demand it so. I was diagnosed Nov 2007 and have had 2 transplants relapsing twice and now take Rev/Dex on going for as long as it works. I also had a plasmacytoma on my forehead which after 10 days treatment disappeared completely and I've known some patients to have had 5 or more of them which have needed Radiotherapy treatment. Please don't accept no for an answer,you have the right to be treat to the best of their ability and no stone should be left unturned. You must demand a second opinion and more if needed.
Best wishes.
Keith.
Hi Teresa, you've just stolen my thunder with regards to tonic water. I drank a half glass of it last night and guess what no cramps during the night. Coincidence maybe but I'm staying with it for as long as it works.
Thank's again.
Keith.
Hi Pennie and Andy, I would have more than settled for half of that 12 years. I was diagnosed Nov 2007 and have had 2 SCT's and started Dex/Rev 2 weeks ago. Must watch out for Constipation/Diarrhoea (tends to switch between the two) Fatigue and leg cramps. I'm sure your hospital will keep you right with all the things to look out for.
I'm finding it a bit tough but they stay the first 4 cycles are the hardest until your body becomes accustomed to the drugs. As for work it will be there when you're not so don't worry about it and just look after Andy. There's much more to life and I'm sure you will have done more than your fair share of it.
Take care both of you and I hope it all goes well for the future.
Keith.
Thank's Tom&Andy for your replies. I phoned the Hospital today to arrange my future appointments and explained the situation regarding the tiredness and cramps. The nurse said it could be down to a drop in potassium levels and wants to take blood tests to find out what's going on. She also said that blood needed to be tested on a week to week basis although no advanced appointments were made when I was there last week. I am also experiencing spasms in my right hand which I had when I was on Velcade when the dose had to be reduced. They might try reducing the steroids on a sliding scale rather than all at once to prevent withdrawal symptoms. I was told that the steroid dose would be cut after the fourth cycle which will mean taking them first four days only. They prefer to throw as much as they can at the MM in the early stages.
Keith.
Hi Dai, I know I'm hijacking your post but I'm feeling absolutely terrible also. I took your advice and got some Movicol and the constipation issue has now been sorted out. I still get cramps in my abdomen but not as bad as it was. The main problem is fatigue and coincides when I stop taking the Dex starting on the second day. I am also getting very bad leg cramps in particular my left leg behind the knee.This is disturbing my sleep as the pain is so bad it wakes me up during the night. I think the problem is the Dex because of the level of dose I'm taking and I'll be asking the hospital about it when I go for my next appointment. My temperature is ok but energy levels are very low which is the hardest thing to deal with at the moment.
Hope things get better for you very soon Dai.
Keith.
Hi Andy/Steph,
the answers you got seem to have raised a few more questions in themselves and that can't be a bad thing in itself.
Although the Consultant says she has never come across this before I'm sure it can't be totally unique and someone somewhere will have seen it before. One thing is for sure you've got the best brains on the case in Prof Jackson. I have the same MM as yourself but in the main I've responded to the treatments very well but of course as we all know we are all very different in ourselves and MM is an individual disease that has to be tackled in lots of different ways in all kinds of patients. It's all about finding the right combination of drugs which will be why he wants to add Cyclophosphamide to the party so lets hope it works for you. Am I right in saying that your BMB was ok as I remember you having yours same day as I did and mine showed 35% MM activity although my PP's at the time had doubled from 5.68-10.98 and went on to 29.98 at the start of the latest treatment. The Consultant was more concerned at the activity in the Bone Marrow and less about the PP's although it is an early signal that something may be going wrong. I have to say it is a puzzler but as I've already said you have the best minds on it and I do hope they can crack it for you.
Take care both of you and do keep us all up to speed with the latest news.
All the best mate…Keith&Sue.
Thank's for that Dai, first thing I did was to go to my nearest supermarket and stock up with Movicol. Things seem to be moving a little today but I want to be prepared and ready just in case.
Thank's again…Keith.
Hi Phil,
great to hear things are working out for you after your 2nd SCT. I had mine in August also but relapsed after only 8 months. I never got the magic zero PP's as I did the first time but that isn't unusual in itself so I battle on.
As for the passing out incident I think it was just a blip on the day. Once I managed to get back on the bed I was fine and it only happened the once. I put it down to the new effects of the Revlimid and the hospital are in agreement with that. I have gone from Terrible Diarrhoea to equally awful Constipation all in the space of a week and from what I've been reading this seems to be quite common with Revlimid. Otherwise things aren't too bad and more will be known when I reach the 4th cycle or thereabouts as to how it's actually working. My PP's went up from 5.65-29.66 in the space of 3 months the last reading being just before the latest treatment started and the BMB showed 35% MM marrow activity. Bloods will be tested on a month to month basis so more should be known next time.
Once again good to hear from you Phil and I hope you stay well for a long time to come.
Take care.
Keith.
Hi Andy,
me along with everyone else hopes that everything turns out right for you and you get the answers you deserve.
Like Eve I strongly buy into the Know your enemy stance and have said so on here many times. It's how I've always approached it and always will as long as I live. Burying your head in the sand and living in denial won't do any good whatsoever so you face it head on and dam the consequences. After I was originally diagnosed Nov 07 my initial feeling was one of anger against this malady that was robbing me of my independence and taking control of my life
Then after clearing my head I prepared my line of battle of how to tackle and defeat MM in order to take back control albeit in a new and different kind of future. Gone were the long term plans with everything being brought forward onto a much shorter timescale. Things that seemed important before now seemed insignificant. The simple fact is we have to make the best of what we have and not to waste time complaining about what we can't have.
I'm sure it will work out for you Andy and please let us all know how you get on.
Keith.
Hi Helen,
I agree it's a small price to pay to get the PP's under control so I'm with you bring it on. I had really bad constipation and agonising pain during the first two cycles of Vad (my first treatment) but no problems with my second treatment which was velcade. Have you had any mouth ulcers? My tongue in particular feels like I've been chewing broken glass. I always use a none alcoholic mouthwash so hopefully it will take care of it asap. The Dex is the culprit and being on such a high dose is certainly not helping.
Take care of yourself…Keith.
Hello all,
Yes not a pleasant post Dai but one I concur with. I haven't experienced any problems with constipation as yet in fact the total opposite. Today I took Dex early morning and Rev at 18.30 to see what difference if any that makes.
I've had slight cramps today but not so severe and the diarrhoea has abated and haven't felt so tired. Zometa tomorrow and I'll see how it goes. All I want to see is those PP's starting to fall and then we may just have a result.
One thing I do find a bit of a bind is those injections to keep my blood flowing. My stomach is covered in bruises and I've only just started. The problem is you supposed to pinch an area of loose skin around the navel but my stomach area is quite firm so when I put the needle in it forces itself out. I'll have to start eating more meat pies and the Dex should take care of that. If it's not one thing it's another. I did mention this to the nurse and she said maybe I will be switched to an oral alternative.
Keith.
