[annsharpParticipant]

For Helen My husband has just had his 6th dose but hasnt had soreness to skin or bones. Lack of energy/fatigue is fairly normal all the time it seems. Wish your mum well.
For Graham—hope you have found the excellent pamphlet on Dartumumab which you can download from Publications. I think it tells you most things you need to know

Ann

[annsharpParticipant]

My husband just started Darzalex last Friday He didn’t have any bad effects on the day but has had a couple of off days since. My concern is that he is non-secretory. This really complicated his last treatment on Ixazomabib which he had for 2 years as all the blood tests looked good but obviously weren’t as good as they seemed. He can’t have an MRI scan due to a pacemaker and was very ill with an internal bleed after his last bone marrow test. When he fell and broke his femur in February it was eventually decided he should stop Ixazomabib He had to wait for a Pat scan and that’s why he’s started on Darzalex. Would be interested to hear how other people are finding it and what we should look out for in the test results

[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

[annsharpParticipant]

All We can say is that my husband has now had 8 sessions of this combination and has never had any side effects like yours.We go back next week for the results of a bone marrow biopsy (which has had other side effects but not related,I think) and will hear if he is to go onto a maintenance treatment. So fingers crossed for good results

Ann and Dave Sharp

[annsharpParticipant]

Dear Teresa

Dave is now on his 7th cycle and has one more to go as far as we know. The consultant says it is going well but I think it could progress further so we will just have to wait and see

All the best

Ann

 

[annsharpParticipant]

Dear Teresa

Sorry for the delay in replying but we have been at the hospital quite a lot of the day (Not haemotology but cardiology, another one of my husband ailments) He,(also Dave) takes the Ninlaro as soon as he wakes up, as there are strict instructions about not eating immediately. The first time he took it he was violently sick a couple of hours later so now he takes one of the anti-sickness tablets the night before, another one with the Ninlaro and usually another one later. This has worked very successfully and he hasn’t been sick again. Generally he hasn’t found the treatment too onerous, though there are good days and bad days.

Good luck to your Dave with his treatment

Regards

Ann

[annsharpParticipant]

Dear Michael,

Sorry to hear you have been told this. We haven’t heard about it. In fact we went to the hospital this morning and have just been given the medication for my husbands 7th session of the triple treatment so hope you may be able to get the decision reversed

All best wishes

Ann

[annsharpParticipant]

Hello Teresa

Fortunately my husbands cough has mostly gone now, been better for about 2 months. So we are not really sure if it was caused by the treatment or not. The consultant agreed it was possibly a side effect but we know of other people with pertsistent coughs nothing to do with myeloma.

My husband will be starting his 7th session this week and overall it seems to be working well with no major side effects.

Good luck to your husband

Regards

Ann

[annsharpParticipant]

Thanks for replies. My husband still has the cough and has just been given a second dose of antibiotics so we will see (and hope) Treatment otherwise doing well.

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