Hi there. I’m looking for advice. Mum is going through treatment for myeloma - it is her first relapse. She is on the Lex-Dex treatment. Yesterday she received a call from the senior nurse at the hospital with feedback on a blood test. The nurse informed her that the treatment is working but that she would be on this treatment for the rest of her life. She is 78 and is in general good health. The side effects are making her ill and she is shielding. This is the first time any healthcare professional has mentioned permanent treatment. Just want to ask if anyone else has had this experience? Is this even correct information?
I’m a bit younger than your mum I had my first relapse in 2021 and had dara velcade and Dex and a second transplant I’m now on dara and Dex maintenance until my next relapse
Yes it is possible for mum to stay on lenlidamide I presume you mean, until her myeloma stops responding to it as myeloma eventually does
There are other treatments for second relapse.
I’m still shielding as I’m permanently immunocompromised.
Lenlidamide does seem to have a couple of side effects like diarrhea and rashes
All treatment leaves you fatigued which is more than tired and doesn’t matter how much sleep you have
Hope that helps
A great big welcome @Chick80 to our forum and @2DB has given you a great response.
I have a different blood cancer but I always ensure my nurse is aware of my side effects and their severity and impact on my life and see if they can help.
Also treatments are individually targeted to the patient and new treatments are coming on line frequently.
I find hospital visits, let alone treatment, absolutely wears me out out and makes me fatigued.
Perhaps you and your mum might write down all her fears, questions and practicalities to ask her medical team.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Look after yourself as well as you look after your mum and be kind to yourselves and please do keep posting
Thank you so much for your reply. I really appreciate you taking the time and effort to share your experiences and to offer advice.
What you have said makes a lot of sense and I will share this with mum.
My best wishes for you as you continue with your treatment.
Thank you so much. Finding this Forum and being able to post has helped me with some really difficult emotions today.
It’s a challenge to support mum with everything she is going through. With work and a very young family, I’m often just a voice on the other end of the phone. I desperately want to say the right thing but don’t always know what that is.
Thank you for the advice. It really helps me in the small role that I play.
Sending my best wishes to you as you continue with your treatments and the fantastic work you do on this Forum.
Oh bless you
Know that being on the end of the phone can be as good as in person when you can’t make it
Don’t think about what to say just be mother and daughter tell her you love her and ask how her day has been how she is feeling as you normally would. Your doing amazing
Is mum any good at FaceTime or wats app if not get her on line if you can so you can see her when you can’t be with her
Thank you for your best wishes sending them right back at you
You have had some lovely replies already from your forum family.
Just having somewhere to share things and experiences with others can be so helpful.
I know how tough it just be for you. You sound like you and your mum have a lovely relationship and being that voice at the end of the phone is sometimes all that we need.
Write down all those questions ready for your mums medical team and please keep us updated on how you are doing X