[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

No
Carol

[CarolsymonsParticipant]

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 throat unsuccessfully. If is driving me mad!
Carol

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

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 waiting to see the specialist (which is every 6 weeks now) I refer to as being on “death row!” I know I shouldn’t think that way and it is not being positive as everyone tells you to be, but it is just how I feel waiting, waiting for the axe to fall!

Carol

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

Beware of extractions if he has been on bisphosphonates

Carol

[CarolsymonsParticipant]

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 so I didn’t feel like an invalid in the hospital gowns. Couldn’t do much walking ( apart from around the bed) cos I was isolated for a time, but always dressed and sat out in the chair every day.

Carol

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

As long as your husband can avoid infections the SCT (in my experience at least) is not that bad. When he comes home he will need to sleep a lot….I was having morning and afternoon naps for quite some time. The nausea and diarrhoea stay around for quite a while but both are manageable with drugs. Food will be an issue for some time as everything will taste metallic and nothing will please him. Given time it all passes and hopefully a long remission awaits!

Carol

[CarolsymonsParticipant]

I also wonder if being vitamin D deficient while living in London contributed to my myeloma developing.
Carol

[CarolsymonsParticipant]

Amanda I remember that feeling. Some nights I would have to sit for ages on the side of my bed before daring to stand up as I was so dizzy, not to mention weak. And I was also a very fit, healthy 63 year old before starting that treatment. But….after a few weeks off the drugs I did start to improve except that I still have some neuropathy (just numbness) in my toes. The combination of cyclophosphamide, thalidomide and dexamethasone did beat my para proteins down to undetectable though, so I guess it was worth the suffering.

Carol

[CarolsymonsParticipant]

Hoping all goes well. If Ian can avoid infections it is not so dreadful. Yes a few days of nausea etc etc and a slow road to recover your strength afterwards, but so worth it to be drug free. I am coming up to 14 months in stringent complete remission and life is good…long may it last! Gym and swim most days and back to Europe for 3 months in May.

Carol

[CarolsymonsParticipant]

I had thalidomide with cyclophosphamide and dexamethasone for my initial therapy and after 18 weeks I was really suffering with the many side effects. Dizziness, muscle weakness, constipation, neuropathy (which I still have) leg cramps, night sweats and night time incontinence. In fact I think the initial therapy was worse for me than the SCT!

Carol

[CarolsymonsParticipant]

As soon as I finished the initial treatment of CDT with a good response, my light chains and paraprotein started rising again, so it was either on to Velcade or SCT. To me SCT was the better option and nearly 14 months later I am still happy with that decision.

Carol

[Author]

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