[heathermullenParticipant]

Had SCT in 2017, relapsed in 2021, since then I’ve been in practically continuing cycles of lenalidomide 10mg, ixazomib 2.3mg and dex 10mg, only having breaks when could no longer cope or have had infections. There are no plans to change these cycles. I’m unwell to the point I struggle to function at least one day a week when I take ixazomib and dex and other days it’s up and down however I have to get on with it as I’m the carer for my husband who has Alzheimer’s. This is the treatment that is keeping the myeloma from becoming active. I smile when I’m feeling rubbish. It’s horrible to think this is as good as I can feel. I have low neutrophils 1.9 caused by the chemo which leaves me susceptible to infection and I suffer a great deal of diarrhoea. Is there anyone else out there on the same chemo cycles? How is it for you?

[debbiesParticipant]

Hi
Sympathise with what you are going through. I have just completed cycle 7 of IRD. I too have very aggressive myeloma. Stem Cell transplant lasted 9 months. My paraprotein almost doubled on first line treatment DVD. IRD is working. Paraprotein neglible for moment. During initial treatment with dex, my bowel ruptured and I now have a stoma. My problem is, I have suffered from severe diarrhoea from the start. But this last month my stoma has been filling with pure liquid at least 6 times a day. I have resorted to rubber pants, bath sheet on bed and old clothes. Just come out of hospital. My neutrophils are 1.5 despite 3 injections a week and my potassium was so low when I went for weekly platelets and haemoglobin (SCT resulted in engraftment failure, hence bloods) that I was admitted for 8 hour infusion as was in danger of cardiac arrest. Have tried very hard over last 2 years but am really struggling now.
How on earth you manage the role of carer is totally beyond me. Please be extremely proud of yourself.
But I just wanted to say, you are not alone. When I read your post, I thought it could have been written by me. I so desperately need an answer to my stoma problem. I just want to eat again without fear.
Take care, this is such a horrible condition.

[kh0305Moderator]

Hi Heathermullen
I’m one of the forum volunteers and my dad was diagnosed with MM back in 2013. He is currently going through treatment for his first relapse. He initially was on dvd which made him really poorly with horrendous bowel problems and he lost so much weight and was generally in pain and unwell. The dvd didn’t work for him so he moved on to the same treatment as you and is comparatively much better to when he was on the dvd. He has regained weight and whilst he still has some stomach problems, overall is experiencing fewer side effects/less severe. He, like you, does have a day a week when he is completely wiped out and others are up and down and he struggles with the fatigue and even short walks tire him out but he seems to be responding to the treatment which is good. It just shows how differently people can react to the various treatments that are available. It must be very tough for you to keep up with all the caring as well as just getting through your day when you are feeling so poorly but I always remember one of dads consultants when he was going through his SCT telling him to make sure he gets out of bed every morning and he still does and still tries to get out and about even when he isn’t feeling his best and I do think it helps to keep him going. I do hope that you start to feel better and can regain bit more normality. xx

[tony642Moderator]

Hi there,

I am one of the forum volunteeers. Although I have not had the same treatment as you, I have had some which was not at all pleasant. I had a stem cell transplant 2 and a half year ago, and since then I have had no detectable cancer, so for me it was worth it.

I know you must be going through a horrendous time, but stick with it and you will hopefully reap the benefits in the future. Stay strong and keep in touch.

Regards, Tony

[heathermullenParticipant]

Thank you all for responses sorry I haven’t been on forum for a while my focus is mostly how I cope as a carer for my husband and his increasing Alzheimer’s. I’ve just been told my paraprotein and free light chains ratio has gone up so am having an MMR scan next week to check no further damage to spine, already a great deal of damage so I’m hoping not, but it’s hard to tell as get pain as we mostly all do with myeloma, suffering increasing diarrea again I seem to recall I’d seen somewhere on the forum that there was a specific drug for this when the cause is ixazomib but can’t recall what it was called

[heathermullenParticipant]

Dear Debbies, sending hugs, what you’re going through ending up with a stoma is awful

[kh0305Moderator]

Hi Heathermullen,
Sorry to hear that the PP and LCs are starting to creep up again. Hoping the scan gives you some positive news that no further damage has occurred. My dad is on lopermide for his diarrhoea – I’m not sure if that’s what you have been told about or not? Always worth flagging issues with your medical team to see if there’s anything that can help rather than suffering with it as you say, there are enough pains with the MM itself without anything else on top! Hope it improves soon for you xx

[tony642Moderator]

Dear heathermullen,

I know it is difficult to stay positive in your circumstances, but that in my opinion is one of the most things you can do to help you through and cope not only with the disease but the treatment as well. If it helps to speak to someone, don`t forget you can refer yourself to the peer buddy system where you will be put in contact with someone who has gone through a similar experience who you c speak with on the phone.

Remember, you are not alone!

regards, Tony

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