[amandaParticipant]

Need an answer to question.  Just about as from tomorrow going to have the 6 cycle chemo , then SCT. Nothing else has been discussed with me as to any alternatives.  I don’t know if there are any other prospects that have good results. The SCT does seem very aggressive surgery to have.  I have kidney failure.  Light chain is 1900.  That should be bought down with the next cycles.  I am actually fit and healthy and feel very well.  The only time I know that I have something wrong is the every other day on dialysis.  Has anyone else got the same kidney failure and is there any other choices that could be looked at or is the SCT the best option.  I am 56 . Hope someone could answere this for me before tomorrow morning as I have an appointment tomorrow.  Friday 23rd.  Amanda.

[beetlejuice54321Participant]

Hi Amanda

it is the common treatment procedure to try and put the myeloma as close to remission with the initial drugs and then have the sct to try and put the myeloma into remission. Hopefully the sct does achieve that and the remission is a long one.

What JaneElliot says is true. There are lots of other drugs available to treat myeloma for which the side effects are not (necessarily) as severe as the sct. Although you should be aware, that although the side effects of the sct will probably make you feel very unwell for 2 weeks, and weak for a further month after that, you will recover and return to normal after 3 to 6 months. I was feeling close to normality after mine after 2 months. If you go with the drugs instead, the side effects of them will be with you permanently while you take them, and often with myeloma you are continually on drugs to keep it under control. If you go with the sct you might be able to go drug free. Again this is worth discussing with you consultant. It’s also worth noting that taking the sct option over alternative treatment is that it buys you more time, and leaves all the other drugs available for use in the future. The problems arise when you run out of treatment drugs.

just for context, I was 34 when I had my sct in October 2013. I was at home for 5 days initially, being sick on and off all day, and then an inpatient for 7 days and generally felt awful that whole time, constant sickness the issue, and then mucousitis of the mouth ( basically sores in throat so swollowing or eating is painful. Then there’s the diahorrhea). But it all passed after 2 weeks. After that I had little or no appetite for a further month. But then I started feeling better. Without a doubt the sct saved my life (I am an unusual myeloma patient in the sense that the myeloma hasn’t collected in my bone marrow but in my lymph nodes). I would do it again if I have to, although I hope I never have to.

good luck with whatever decision you take.

• This reply was modified 9 years, 3 months ago by  beetlejuice54321.
• This reply was modified 9 years, 3 months ago by  beetlejuice54321.

[alicenorthParticipant]

Hi Amanda

i am 46 and was diagnosed 4 years ago. I had 6 cycles of CTD and reached complete response. I have delayed having a SCT although I did have my stem cells collected. I had to push for this option though. I think I made the right choice. But without a cytogenetic analysis of my bone marrow, I didn’t know if I was high risk or not so it was a bit of a gamble. I have a friend who was diagnosed with CML a couple of years before me. Her advice to me was that you have to take responsibility for your own health and push to get what’s right for you.  Good luck!

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