[grandmatParticipant]

Thank you we got fixed up

[grandmatParticipant]

Hi my husband is in a clinical trial for MM and we’ve been turned down for holiday insurance even though we have had a letter from our consultant to say he is in remission and says he’s fit to travel, knocked us back a bit to be honest

[grandmatParticipant]

Thanks onwards and upwards it’s good to hear your doing well, we have been told that the placebo /tablet has a casing round it and that some people have an allergy to the outer shell of the medication so don’t know what to think as your name says onwards and upwards will have a chat with our consultant when we go on Wednesday

[grandmatParticipant]

Hello James I’m sorry I didn’t explain it very well, my husband has been taking Lenalidonide, Ixazomib and Dexamethasone now in the 2nd part of the trial Dexanethasone has been ceased ,Ixazomib we don’t know now whether he’s receiving that or it’s a placebo Lenalidomibe he’s still taking hope that’s more understandable

[grandmatParticipant]

Hi rabbit my husband is on the fitness trial , he’s been on chemo for the first year bu5 now in the second year he takes less medication but is taking either a placebo or a new added tablet but we don’t know obviously , he’s in his 2nd cycle of this 2 nd year , he has had some sickness side effects which he didn’t have before. He does have other side effects but he’s had those very early on in the first year , my husband is 78 in August so unable to have STC.He does suffer quite badly with peripheral neuropathy struggles to walk far now ,hope this helps .

• This reply was modified 5 months ago by  grandmat.

[grandmatParticipant]

Hi twinz I like the name we have twin grandchildren .
Your problem seems far worse than my husband , but he and his doctor can’t understand why his feet are stone cold as he has a really good pulse in his foot, but good to hear you are in remission but 2 yrs is a long time in such discomfort with the feet, my husband is on a clinical trial for 2 yrs only done 5 cycles a long time to go yet but looking forward to the day someone mentions remission to us take care

[grandmatParticipant]

Very true Myeloma we know very little about we will still mention his problem of his feet as we can’t play doctors and guess what’s what but he does seem to be doing better after treatment from our local physio only time will tell thanks for the info I have never heard of Morton’s neuroma will google it .

[grandmatParticipant]

Hi and thank you for replying, my husband ended up seeing the doctor, she didn’t think it was anything to do with the myeloma she said it was plantar fascia, so thats the road we are going down , he’s a bit grumpy at the moment and fed up but we must keep going , thanks again will keep you informed should it not be what his doctor says he has his next cycle next Wednesday so not long to wait

[grandmatParticipant]

My husband is struggling with pain on his heel on the sole and can’t put his foot to the floor, he has multiple myeloma and been on 5 cycles so far but unsure it’s a hospital problem or out local gp can anyone help thank you

[grandmatParticipant]

Thank you very much for your reply gc you’ve been a great help actually as no one seems to know anything , he has gone back on blood pressure tablets after seeing local gp and slowly the swelling is coming down one foot more than the other, and a bit sore on the too if his foot hopefully it will keep going in the right direction. He has a blood test next week to see how his potassium is doing , the doctor said Indapamide is also a diuretic as well as blood pressure so he may be passing more urine and along with that more potassium it is a balancing act. My husband is frustrated and feeling a bit sorry but I don’t blame him it’s not a nice thing to have , thanks again

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