Hi everyone, my lovely mother in law was diagnosed with myeloma almost 3 years ago. She’s 69 and is currently on 3rd line treatment of IRD. First line was VCD and second line was DVD.
She started off on 10 mg revlimid (her kidneys weren’t good at the time although they are now ok, hence the lower dosage) 4 mg ixazomib and I’m not entirely sure what the dose of dexamethasone is. She was relatively ok for the first cycle. Her proteins dropped from mid 30s to 14 during the 1st cycle which we were all so thrilled about. However, shortly after that she began experiencing the most horrendous side effects. Awful diarrhoea (we wondered if it was caused by BAM), sickness, fatigue, peripheral neuropathy and terrible pain. She was unable to eat for nearly a week and ended up having 2 drips in hospital to rehydrate. At that time the hospital decided to remove the ixazomib for a few weeks to see if the peripheral neuropathy improved along with some of the other side effects. The peripheral neuropathy in her hands is much better now but she still suffers with it in her feet. She has still been experiencing diarrhoea although this is not as bad as it was but she’s now experiencing constipation as well, possibly due to diarrhoea medication or the cocodamol. She is still feeling sick at times, especially after taking the dex. Still has no appetite. Worst seems to be the terrible pain she’s experiencing.
At the moment she doesn’t have any quality of life at all and is understandably very down. Does anyone have any experience of any of the side effects of these drugs and anything that worked for them? Also has anyone been on this drug regime and altered the drugs/dosages and what was the effect on remission time? We are concerned that if things are tweaked too much she will have a very short remission time and we will all be back round again on another drug regime. On the other hand, we can’t bear to see her suffering the way she is on this new drug regime. We were so hopeful about this new regime as I’d read of people living well on low dosages of revlimid for 5 years. I just hope that can still be my mil and that these are early teething issues.
The hospital have suggested she has a scan as she is in so much pain but she doesn’t feel able to face that at the moment. We have advised her that she should have one but she’s quite stubborn and a very anxious person. We totally understand that she’s scared but we just want her to have her pain better managed. I think if she wasn’t in so much pain her mood and outlook would be better and maybe even her appetite. Up until the myeloma she’s been a very fit and healthy woman and an ex nurse who hardly ever took a paracetamol so she’s finding all this very hard. Every tablet she takes to help with the side effects seems to create another issue that then needs dealing with. She is spending every day in tears.
I don’t know what to do to help. I research everything I can in the hope that I will find some magic pill to help with the side effects or an inspiring story of someone else’s journey on these drugs to give my mil some hope. My husband (her son) is an excellent son and does all he can to support and encourage her but her illness is making him continually anxious and depressed and I’m very worried about him. He cries every day and feels totally helpless. His father died of leukaemia when he was 8 years old so this is all incredibly upsetting for him and he wants to save her. They are very close and he’s not even been able to give her a hug because of the coronavirus. My father in law (76) who she lives with is wonderful and does all he can but my mil won’t allow him to ask certain questions at the hospital and wants to do things her way. We are concerned about him and how this is impacting him.
The hospital are supposed to be reintroducing ixazomib next week which gives us all concerns as she was so ill before. They have not yet said what dosage it will be. If it’s anything like before she will be spending Christmas in the most horrendous state. So far the hospital has just said she will get used to the drugs in time?! But at what cost? She’s going to need to be on these for 6 months before things change dramatically which seems a very long way off at the moment.
Thank you so much for reading my very long post and if anyone has any advice or suggestions please do let me know. Thanks, Rosie X
