[susieParticipant]

I don’t know if anyone can advise. My story is I have been on IRD (3rd line) and reached 35th cycle. Over the last 4 or 5 months paraproteins have risen slowly from my plateau of 5 to 6 has now reached 12. My last consult seemed quite panicky, as I was told I only have one more treatment I can have. Which I have to say was more than surprising. Anyway he kept me on present regime but doubled the dose, even though I had to be taken off it in the beginning. Needless to say I have been really ill for a week, and am not inclined to take a further dose. Also to say I can only have one more lot of treatment I simply don’t understand why when there are so many available.

[susieParticipant]

Sorry this has come up on the wrong group. I don’t post very often. If I can I’ll move it over

[paulapurpleParticipant]

Hi Susie,

I don’t know if you are a member of the UK Myeloma Faccebook page? It’s a very supportive, friendly group and I find it very helpful. You will get answers to your questions very quickly on there. You will reach a much greater number of people and probably some who have experienced something similar; there is a wealth of knowledge and experience amongst the membership.

Good luck

Paula

[mulberryParticipant]

Another option is to ring Myeloma UK to discuss potential new treatments. I have met UK myeloma patients who have had 7 or 8 treatments,although some of those may have been trials. Is this something that you would consider?
How awful having that thrown into the conversation…

[mulberryParticipant]

Another option is to ring Myeloma UK to discuss potential new treatments. I have met UK myeloma patients who have had 7 or 8 treatments,although some of those may have been trials. Is this something that you would consider?

How awful having that thrown into the conversation…

[Author]

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