[CarolsymonsParticipant]

Now I have been told by another nurse that I wasn't taken off treatment due to cancer numbers not moving, but due to the temperature and possible infection I had last weekend. I wish I had have been told that at first, then I wouldn't have spent 2 days blubbering over wasting 9 weeks and poisoning myself for nothing!
In fact numbers just in last Thursday show lambda light chains still hovering around 400, but paraprotein (iga) dropped 50% from 10 to 5 (from weeks 6 to 9). Now my dream is to smash those little myeloma gremlins down to zero in the next 3 weeks! Fingers crossed.

Then comes the massive decision about transplant…I am becoming more and more confused about what is the best decision for me.

Carol

[PeterJamesParticipant]

Hi Carol
If your pp is down to 5 after I presume 3 x 3 week cycles of 6 in total , you are doing really well
Mine started off at 42 & was 3 @ the end of the 18 weeks
I Think most people on this forum would advise you go for the SCT
I had mine mid Jan this year @ the Christie , their advice was it was a very positive life extender
I had no doubts about having it done
Yes , you will feel pretty to very rough for 1o/14 days , it soon passes & you begin bubbling up again
I now feel very well despite going down with a dose of shingles this week, again this will soon pass
Peter

[CarolsymonsParticipant]

Thanks Peter I think at my age and also with my desire to return to Australia to reunite with family and friends I should just bite the bullet and do it…..but that mephalan scares me……

Also do you lose your hair with the cyclophosphamide for stem cell extraction? The thought of being bald freaks me out for some reason…and I am not a vain person. I think that it will just force me to face the fact hat I have cancer which in some ways I am still trying to deny.

Carol

[PeterJamesParticipant]

Hi Carole
I did not lose any hair with the cylophosphamide, it gave me a little bone pain which went as soon as i stopped it
The stem cell extraction is totally pain free , just boring to have to sit still for several hours at a time
I lost most of my hair on the top , but not round the side of, also beard dropped off, also some other areas
This started about ten days after the SCT
But it soon grows back , mine has come back a lot thicker & my beard grows much quicker!
I think you need to come out of denial & just say to yourself , i can beat this
Peter

[tonyfParticipant]

Hiya Carole, bite the bullet girl, go for it.
As Peter says the stem cell collection is boring, it's not nice being in solitary for the transplant and anything can happen there, and probably will!
Don't let hair loss freak you out, it's only short term, mine grew back thicker and curly!
My SCT was in February and other than this infection I haven't looked back since, it was the right decision to make. It takes a while for the body to get back to normal.
Just think you could be visiting the family in Oz, that's the positive.
You can do it
Regards Tony F

[mhnevillParticipant]

Hi Carole

Just to put another perspective. I got into remission after six lots of CDT, last summer, didn't have a SCT. I am 69. There are other ways through.

All best wishes.

Mavis x

[Author]

Posts