[alisonmarshallParticipant]

hi, I was diagnosed week ago and consultant very keen to put me on trial, gave me lots of info about cardamom trial and very little about other treatment, despite telling me the scan would indicate what treatment was best for me.

I decided to do normal treatment with stem cell transplant, only then did the nurse tell what was involved with that. I can appreciate I may not take all info in, but the paperwork was 2 pages for normal treatment and 10 for the trial, so hard to decide when didn’t have all the info. I think I’d deal with the diagnosis better if given all the relevant info to mull over in my own time, what is the experience of others I wonder,

[paulapurpleParticipant]

Look on the Myeloma UK website for the info on Stem Cell transplant; it will clearly set out what’s involved. If you haven’t read the booklet for new diagnosed people on the site either then I can recommend this as it will fill you in with all the science! I found it much easier to understand too when I was in possession of all the facts. You will have some initial treatment before the Stem Cell transplant; if you now know what this is you will be able to read up about this on the site too. I have Light chain myeloma and started off on VTD (velcade, thalidomide and dexamethesone), which didn’t work for me so now on CTD  (cyclophosphamide, thalidomide and dexamethesone) and waiting to see if that has worked, before I cn think about stem cell transplant. I was diagnosed in March but I also had Non~Hodgkin’s Lymphoma, which they wanted to treat first so I didn’t start treatment for Myeloma until the end of May.

Best of luck. Can I suggest you also join the UK Myeloma Support Group Facebook page if you haven’t done already, as there are some very knowledgeable people on there and you will get answers much quicker.

Paula

 

[alisonmarshallParticipant]

Thank you for that Paula. Ended up on the trial as apparently too aggressive and fast to consider ctd and cardamom wouldn’t be available if I chose valkade. It’s been a real roller coaster with infections, pic lines, extra hospital and lots hospital appointments. Rather taken over my life but this month, 2nd, has started without any hitches, tho the effects of the treatment knock me aside for 4/5days of every week, leaving only 2 days or relative wellness. Today feeling I could get used to it, not so day after and days of treatment. Seems life has been put entirely on hold for now with only gentle walking and some yoga, art at home to keep me well. Friends have been great and some family too, but not all have reacted or with interest, to be expected I suppose. I will check out Facebook, thanks

 

[paulapurpleParticipant]

I know exactly how you feel; it does take over your life. My consultant rang me last week with the news that the Cyclophosphamide isn’t working either and my free light chains have gone back up again!  Another bone marrow biopsy on Tuesday and then they will decide what happens next!  I expect it will be a lot more aggressive this time so I’m not looking forward to that with Christmas and New Year looming; the aim is still to get me to stem cell transplant but it would appear that I have a very resistant type of myeloma!

I have found over the last year that the friends I thought would be supportive haven’t been and those that I didn’t really expect would be have been fantastic! People always surprise you!

Good luck on the Trail.

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