Hi Michelle

I knew that pneumonia was a risk and am taking my prophylactic penicillin and septrim reluctantly but religiously. The thing is I don’t have a temperature, so it can’t be a bacterial infection. If it were a virus you would think 6 weeks is long enough to beat it. My blood counts were OK 2 weeks ago, so I am not neutropenic. I am…[Read more]

Well strangely it seems like I am the only patient to suffer lung problems adter SCT! Still no X-ray results despite my asking the surgery to fax the hospital urgently, but today have now been prescribed a decongestant! We will see what that does!

Carol

Hi Julie
I had an awful metallic taste while on CDT and was really fussy about what I felt like eating…nothing tasted right. I don’t remember a dry mouth then, although I do have that now after SCT. It is a problem as lack of saliva may lead to increased tooth decay….something I don’t want to face as well as everything else. Maybe your dry…[Read more]

Hi Frances
I developed double vision and black floaters in one eye when on CDT. The double vision has improved but the black floaters are annoying. Somewhere I read that cataracts are also a side effect and I have them too, but they may have been from the Australian sun before I was dxd. Who knows?

Carol

Hi John

It seems that treatment in the UK is dependent on age and physical fitness. Usually the doctors don’t offer stem cell transplant over 65 years of age but there are older patients on this forum who were offered it and got through the process. I always ask for a printout of my blood tests so that I can track my paraprotein (iga) and also…[Read more]

Hi Helen
Thalidomide made me dopey and dizzy if I got up through the night and also caused neuropathy in my toes. I was on warfarin as blood clots can be a side effect of thalidomide. Was your uncle on any sort of blood thinners? Is he taking other meds as well? The initial therapy I was given was cyclophosphamide, dexamethasone and…[Read more]

Hi

Everyone is different but I delayed starting treatment for a month so that I could have a holiday. I don’t think it made any difference. As experienced people here keep saying battling this disease is a marathon not a sprint. Having said that I know when I finished my 6 cycles of initial therapy (CDT) it took more than a month before I felt…[Read more]

Hi Eve

Can you believe it? Work finished last Friday, consultant appointment today, I am ready and raring to go to Oz except for 1 huge problem….no bloody contract for the sale of this flat. Almost 5 months now and I am in limbo. Cannot resign my job, cannot book my one way ticket out of London so here I sit, waiting waiting…..I don’t want…[Read more]

Hi Sarah

I am 6 months post SCT and in complete remission. The best advice I can give you is don’t read the horror stories and encourage mum go into the process truly believing it will work and all will be well. Maybe I was lucky, but I was out in 2 weeks and had no infections. Yes I had the terribly painful oesophagus, nausea, vomiting and…[Read more]

Hi Judy and Wendy

I have iga lambda light chain myeloma and just today have received another set of good blood results, still staying in stringent complete remission 6 months after my SCT. My initial therapy was 6 cycles of CDT which while that obliterated all of my paraprotein didn’t manage to get the lambda light chains down to normal.…[Read more]

Hi David

It is just so reassuring to read positive stories like yours. I am doing well, 6 months post transplant and in complete remission. Long may it last!

Carol

Hi Rebecca

My hair isn’t actually that long, maybe 2 inches like yours. I have neither owned nor used straighteners having just a slight wave in my normal hair, so wouldn’t know where to start even! I wore a wig until the last week of school when it was too hot to be bothered, so went with my short curls. Some people at work even said that it…[Read more]

I have to fight to get my results between appointments at Ealing Hospital, west London. I have been told they cannot give them over the phone, but when I do go in to collect them there is still a reluctance to print them out. 4 weeks is too long to have to wait when you are anxious about this bloody cancer returning……after all it is my body,…[Read more]

Wow Tom I can’t believe a year has passed since your transplant! I am 5 months post transplant now and still in remission, although I haven’t got the latest blood results. I went back to work at 3 months on a phased return, now full time although school finishes on 18 July when I hope to return to Australia. I am, however, still waiting on the…[Read more]

Try not to read too much on the internet as things are advancing rapidly in myeloma treatment and consequently survival rates. I read of people still alive after 22 years! Nowadays I think we have to regard myeloma as a chronic disease. We have period of remission then a relapse and back into treatment in recurring cycles. Also the average 5…[Read more]

At 4 months post transplant last month I flew to Serbia then took a road trip to Croatia to escape the floods in Serbia and Bosnia. I had no problems, although like you I have no stamina for walking. Need to work on fitness but can’t find the energy after a day at work.

Carol

Hi Jane

I don’t think people like Rebecca and me, who cruise through transplant have any idea of how much you must have suffered. That you have come through with such a positive outlook is fantastic! I hope things continue on the up and up for you. My darn hair is only about an inch long (5 months after transplant) but it is already trying to…[Read more]

Hi Denise

I think sometimes it is even more difficult for the carer than the patient. I know my husband told me I was quite obnoxious while on steroids, but I just thought I was telling it like it was! It must be awful to be told your loved one has an incurable cancer but I think I was so involved in getting through the treatment and the side…[Read more]