[tmcintyreParticipant]

Hi Mike,

We are in Southampton.  Are you a member of the Myeloma Support Group on Facebook. There has been a discussion about this recently,

best wishes

Teresa

[docmikeParticipant]

hi all,
Change of plan ; my response to Rd has plateaued so I am having a further month of treatment but with less steroids prior to my second asct in january .Not exctly what i wanted but there seems less point in adding ixazomib at great expense . I am still very angry about the circumstances which prevented me getting triple therapy for free but action by me to highlight the moral. professional and scientific issues will have to wait until I am recovered from the transplant .
Mike

[tmcintyreParticipant]

Things have moved on.  Dave had 3 cycles of Ninlaro and Revlimid, developed a rash so for the 4th cycle, while we waited for biopsy results, it was Ninlaro only.  Good results!  His bone marrow count when down from 50% to 10-15% so he is preparing for SCT.  He had an Apheresis line fitted because of difficult access to his veins, priming last week and harvesting this week. SCT planned for 2nd January although if a bed becomes available beforehand he will get the call to go in.

As previous drugs hadn’t worked we feel so so lucky that our consultant was able to access these drugs for Dave.

How is everyone else doing?

Teresa

 

[docmikeParticipant]

Well there you go Nice has approved IRd after 2 treatments via the cancer drugs fund; six months too late for me but ive got my paraprotein down to 2.8 on Rd.
Had 5 teeth out prior to my second asct which is booked for next wednesday 17th .
Mike

[docmikeParticipant]

Hi all,
I have survived and am 7 weeks post transplant ;bald and not shaved for weeks but energy returning .Probably have bronj in two sockets in lower jaw but onwards and upwards ,bisphosphonate related osteonecrosis of the jaw .
Mike

[tmcintyreParticipant]

Hi Mike,

Good to hear you’ve got through SCT but sorry to hear you have the ostonecrosis.  My husband is 11 weeks post transplant, having bone marrow biopsy next month. The plan is for him to continue with IRD as maintenance to prolong remission, hopefully dropping the dex after 3 months.  He had flu during SCT and another infection a couple of weeks after discharge but has recovered remarkably well although anaemia is still there. His lower back is sore and I’m wondering if bisphosphonate will help as others have mentioned it eases bone pain. His consultant gently hinted that his weight is a contribution as he put on over two stones during induction treatment which is not good as he was already overweight.

Wishing you well for a better future,

Teresa

[annsharpParticipant]

Hello

Good to hear latest news from both of you. My husbands news is that he completed 8 sessions of Ixa/Rev and Dex and is now on Ixa and Rev only to prolong remission. This month they have reduced the Ixa dose as he was having some side effects and it seems a bit better. He had complications last October and was very ill after the bone marrow biopsy which caused severe internal bleeding and great pain, probably due to anti-coagulents, so he is off those now. he is not eligible for SCT due to age. He feels fairly well at the moment generally.

Ann and Dave Sharp

[tmcintyreParticipant]

Hello Ann,

I’m glad your husband is well, treatment does take some tweaking before you get the right balance. Seems as though the Ixazomib is the right one for  us.

Teresa

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