From what I understand it is better to go into transplant with your numbers as low as possible if you hope for a long remission. No doubt they will put you on more cycles of treatment to beat those numbers down before transplant. I think it is better to do that than have the transplant and have a short remission. My free light chains also…[Read more]

If mum can avoid infections she will not be ill for a year after transplant…a couple of months and you recover.

Carol

Kefalonia is one of the islands my July cruise visits….hope I feel as well as you seem!

Carol

I don’t think the biopsy is that bad but I have to say I think it depends on who is doing it. I have had 2 with just a short weird sort of pain that ran down my leg, but the last one was a nightmare….she kept adding more local anaesthetic and went in a few times and still didn’t get a good sample….of course blamed my bones not her…[Read more]

Hi Richard

I do feel very fortunate to have reached a good remission after transplant and maintained it so far. No surfing for me, in fact nowadays I am very careful about going in if the surf is too rough. There is a salt water lake near here and mostly I swim there….no sharks there either…that’s a bonus!

I haven’t had Velcade yet but do…[Read more]

From what I read ONJ is usually triggered by an extraction which doesn’t heal. That is why the doctors advise you to have all dental work done before starting zometa. If mum needs any extractions or root canal work done I think they advise waiting another 3 months before starting the zometa as well. ONJ seems to be a particularly nasty thing to…[Read more]

Prunes seemed to help when I was on CDT….it was really annoying having constipation. For me the side effects of CDT were worse than the transplant!

Carol

Richard
What a darn nuisance! I went through transplant around the same time as you but was lucky to have and still maintain a complete remission nearly 15 months later. I do hope the new treatment is tolerable. You know some research seems to indicate that 20mg dex is as effective as the higher dose, but guess you have to listen to your…[Read more]

Ali don’t stress, some people smoulder for years! I was working as a secondary SENCo in Southall, London when diagnosed. 2 years later I am heading towards 15 months post transplant in complete remission, retired, living a normal life back home in Surfer’s Paradise Australia. The most hopeful thing the consultant told me when I was diagnosed…[Read more]

What a lovely way to celebrate Stephen’s birthday. He would have loved the flowers!

Carol

I had my transplant in Hammersmith, home in 14 days and the staff there were AMAZING! I am still in stringent complete remission. Long may it last!

Carol

No
Carol

Yes I have this all the time and I am 14 months post transplant. I also wake up every morning with 1 blocked nostril. The doctor thought it may be an allergy (I have never been allergic to anything in my life) and said to get an over the counter medicine for allergies. I can’t say that it helped. All day I am continually trying to clear my…[Read more]

CTD put me into remission after 6 cycles, but the side effects did increase as I progressed through the cycles but…we just have to do whatever it takes to beat those numbers down. Hope it all goes well with you. Keep a look out for neuropathy from the thalidomide.

Carol

In my opinion it is an ongoing dilemma. Do we opt for quality of life or quantity? Here in Australia maintenance is not an option but I am happy to be drug free. Whether it is the right decision or not only time will tell, but I have just passed 14 months in complete remission after SCT. Next specialist appointment on Thursday. My week…[Read more]

I definitely have a poorer memory and am glad I have retired from my stressful job. For me Scrabble on the ipad and learning Serbian (well trying to) keep my mind active.

Carol

Beware of extractions if he has been on bisphosphonates

Carol

Best idea is to go into the process truly believing that you have made the right decision and that it will work! Try to keep your husband active even though he will feel pretty rotten for a few days. I took track suits and I think that psychologically changing into them each morning was beneficial to my state of mind. Also took my own pyjamas…[Read more]

When I was at Ealing Hospital West London I always had to battle the nurse to get a printout of my results, but now I am home in Australia they print them out no problem. I think you should be asking for a printout as it is not just paraprotein that is important. You should be asking about your free light chain ratio too.

Carol