Morning, before commiting to any new treatment I think you need to do your research as to the risks and side effects. Read trial reports, research documents, anything written by professional bodies. There’s plenty available on the internet, some are quite old though. One of the reasons I rejected an allo transplant was because the risks of mortality range from from 1 in 5 to 1 in 2 dependent on age, fitness, level of MM etc. (Source http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3017399/. A bit old maybe but worth noting. I really don’t like playing Russian Roulette with my one and only life.
I would also suggest to keep as fit as possible, I believe there is a link between the level of fitness and progress of the illness, there are a number on the site who try and do some exercise.
Keep working, it gives you something else to think about and is great for self worth. Unfortunately my stamina levels dropped dramatically, I have a part time job now and at the end of the week I am totally worn out but I won’t stop working.
I would also suggest getting a second opinion.
I can’t think of anything else for the moment, but please feel free to post me if you want anything.
Richard
Hi there,
Like you I was in my 40’s (just a few month’s before my 50th) when I had my diagnosis and later had the auto SCT which also turned out to bit of a bit of failure. My IgG dropped from 36 to 24 only but stabilized enough for it to be left alone. It wasn’t even classed as remission by the medics. Unfortunately after 14 months it started to climb back up and I have been having Revlimid since.
I know how you feel about the SCT, the medics have asked me if I would consider an allo SCT to which I replied the first SCT didn’t work, why should I have another. Now what my consultant said is that there are some new treatments that they are expecting to be licenced soon and that they may be worth a try when Revlimid stops working, as we know, it will stop. I ought to point out I live in Germany so the projected new licences might be slightly different to the UK’s
I think the message is that there are still options and that while others hold SCT as the pinnacle for treatment there are other treatments that suit others better. There are some on this forum who have achieved remission without SCT and there are others who won’t be given SCT because they haven’t shown a big enough improvement. It really is a case of standing up, dusting yourself down and moving onto the next treatment. Unfortunately you will get more knockbacks but those on the forum who remain optimistic and positive I think fare better. MM will always be there but it’s a case of not letting the bugger get you down.
Richard
Richard
To just to follow on from Andy, I had SCT and it didn’t really work. My IgG went down from 36 to 24 post SCT. I believe in the UK they wouldn’t even consider SCT if the Paraprotein level is above 1(I live overseas). The other point is that for a lot of people remission post the first SCT only lasts 12 -18 months as was my case. After all that it does work for a lot of people but it must not be seen as the golden bullet against MM. I still believe that if your father is given the option of an Auto SCT then he must seriously consider it. As Andy says at least it can buy him time.
Oh by the way Andy, the Aspirin left by the government needs to be of 2 types – non water soluble for the North.
Richard
Good thought Tony and we must thank all those internationally doing research to to find a cure. I think we should also remember all those who didn’t make it this year, let’s be positive about our future as so many of them were for theirs.
Oh and Leicester City FC are still working miracles so lets see if we can.
Richard
Morning Andy,
Things are ticking along here quite nicely. My IgG is far lower than post SCT so the medics are looking at reducing Rev to 15mg and Dexy to 20mg. I’m waiting on the results of the latest blood test. I still have to provide a urine sample and did have a MRT last month. The scan showed no increase to the bone lesions so my consultant is happy for me to have Zometa quarterly instead of monthly.
The general concensus is a little light exercise is good for the bone strength so I work part time in a job that requires a bit of lifting and a lot of walking, I also cycle to work which I believe helps to keep things in check. There’s just a bit of bone ache after a long period but I still don’t need the painkillers, I’ve not taken any for 18 months. I have to say I only work part time and the day after dexy can be a killer because of the tiredness but so far no major issues.
So as Tom would say “onwards and upwards”
Richard
Hi Andy,
Sounds like another near miss, if a cat has 9 lives how many have you got? Good to know you’re on the mend.
Richard
Hi Andy,
everything OK? Not heard anymore for 6 days.
Sorry Jeff, if your talking about the MP for Rutland and Melton, don’t hold your breath and I speak from personal experience. He will not do anything to upset his mates, I believe he also has one of the worst records for attending debates in the House. Remember the protests against David Wilson Homes building on Dalby Airfield? He couldn’t even be asked to turn up to one of the meetings, sent his side kick who got a blasting on his behalf. Could we not look at possibly doing an online government petition. If I remember rightly if there are enough registered than it has to be debated in Parliament
Hi Helen,
Just for your interest, I live in Germany, post SCT here they like to do a BMB 4 weeks after SCT. The first I had the doctor said it will be no worse than visiting the dentist to which I replied after you must have crap dentisits in Germany. The second, by another specialist was a lot better. But for the third post SCT, I discussed the system in the UK of a BMB at 100 days. Her answer was that they do it properly in the UK and then I asked if I really needed one. She said no because she gets all the data she needs from my blood results. So 20 months on from the SCT I have not had a BMB and it has never come up in conversation. When there’s been concern because I have never achieved remission, just classed as Stable, they have given me an MRT scan. Apparently this gives a better overview of MM and where it’s most active. Trouble is it’s mega-expensive.
So perhaps you should discuss that option with your consultant, A BMB only gives a local snap shot of what is happening whereas the MRT will give a better overall picture.
Hope everything else is going well,
Richard
Er, can we keep political views out of this and just stick to the facts and perhaps how we can lobby to have the policy changed.
Sorry Ann, haven’t heard from Tom as I don’t use social media either. I’m sure if anything happens he will post and let us know. As for David, I wonder if he’s finished his coffin yet.
Richard
Hi eve,
So good to hear from you again. Your posts about Slim and your life were really a bit of inspiration at times and sometimes full of hope as well as sadness. I have to say that you along with Tom and Vasibite helped me in particular to deal with MM.
Life has moved on for all of us and although I do not have the self determination and will of Slim I have achieved my own little successes against MM. Stay in touch please we all need a bit of inspiration sometimes as well as a kick up the back side sometimes. (My wife does that at the moment but she needs a break from it).
Richard
Dear Vicki,
we are bothsaddened to hear of the loss of Colin. You both battled so hard, especially over the last couple of months and you achieved some notable things, your marriage for one. Now it is time for grieving but please remember you have a life to live as well. I know when it’s my time I would want my wife to go out and start living again as soon as possible. I don’t mean move on and forget about Colin but move on and remember the good times. You owe it to yourself after everything you have been through. Like I say we forget the carers too often.
All the best for the future
Richard and wifey.
Like your attitude Bernard, for some, post SCT can be an anti-climax but for most it’s another chance. Whilst we will never be wealthy enough for me to take early retirement or just not worry about finances, we have totally reassessed what is important to us as a family and me as the inflicted. I’m afraid I don’t have much patience with those who do not embrace their 2nd chance, there are plenty on this website who have suffered severe bone damage or kidney failure and yet still embrace life. Onwards and upwards as Tom would say.
Morning Andy,
An attitude can be a really positive thing, It’s just difficult when you’re right and everyone else is wrong and they don’t know it 🙂
As for my exams, passed the first two and presently doing a practical in an old people’s home. I’m supposed to be doing care work but helping more with activities such as gentle exercise, crafts and of course searching for the odd one with Dementia that has gone on a wonder somewhere. I may as well experience an old people’s home now so I know what to expect if I last that long. The residents are really helping with the German as well but like children, when they don’t like what they hear then they become a bit petulant. A couple of times I’ve had “Ich nicht verstehen!” (I don’t understand!). You have to be a bit detached when you see photos of some of the residents from just a few years ago, full of life with friends and family and then see them now, confused or bed bound.
As for the German exam, I’m not too hopeful, everyone struggled with one section and my written grammer is poor at the best of times. I’ll find out how poor in September I expect. Anyway, as you say Andy everyday is a gift and I’m just not going to sit around doing nothing.
