Hi my name is lynne my husbands journey started in July 22 when he had a stroke which took his left side whil recovering from that he got told he had Monoclonal gammopathy of unknown significance (MGUS) We went for check ups every 4 months things were ok until October 24 he was more tired than usuall ,he had bloods done and ended up in hospital he had kidney injury from the myeloma they started treatment in November and had a bad reaction to one of the chemo meds he got a rash that covered his entire body and was itchy his skin is peeling off
There discharging him today but i had to go and ask to see a doctor about his treatment i feel frustrated because im not getting any imput of what is happening the doc told me yesterday his kidneys are now ckd and they have stopped chemo because of the rash we have clinic appointment on 29th jan to discuss the next step
he’s finding this the cancer and stroke very difficult thankyou for letting me get this off my chest
Hi @13.TG welcome to our forum, and thanks for telling us what has been happening to you and your husband since July 22.
I attach the Blood Cancer UK details on Monoclonal gammopathy of unknown significance (MGUS)
MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
You say that you have a clinic appointment on 29 Jan.
Perhaps once your husband feels ready after being discharged from hospital you might both write down your fears, questions and practicalities for that appointment.
You say your husband is finding his cancer and stroke very difficult, what about you?
Look after and be very kind to yourselves and please do keep posting
Hello @13.TG
Thanks for your post and I’m glad you’ve found this forum to be able to get things off your chest as you say. It is here for you whenever you need.
Your husband - and you - have been through so much over the last few years. No wonder you are feeling frustrated, and it would also be understandable if you were also a bit overwhelmed with it all too! It sounds like you’re not sure what is happening next with treatment or why.
If I’ve understood correctly, it sounds like the Monoclonal gammopathy of unknown significance (MGUS) has been confirmed as progressing to myeloma? I’m so sorry to hear about this - I imagine it must have been a big shock, even if you knew it was a possibility. A myeloma diagnosis can come with a lot of information at once, and this can be hard to take in - especially with his reaction to the first line of treatment. Our website has information that you can read and refer to as and when you feel able, or if you have questions: Myeloma | Blood Cancer UK As you read through, you’ll see there are lots of different potential treatments for myeloma, and the appointment on the 29th will likely discuss something different hopefully without the skin reaction for your husband. Erica has suggested you write things down for that appointment, which can be a really useful thing to do. You are also welcome to call our Support Line and talk things through with our Support Services Nurses, who will help you prepare for the appointment if that would be useful - our contact details can be found here: Blood cancer information and support by phone and email | Blood Cancer UK Please do know that we’re here, even if you just want to talk things through.
Have you been given contact details for the Clinical Nurse Specialist for after your husband is discharged? And/ or an emergency number with the hospital team? This will be an important contact to also keep handy in case of any new symptoms or if you’re worried about infection or anything else before and/or after the 29th.
I have also tagged your post so that hopefully others going through similar can find it.
Take good care of yourself,
Warm wishes,
Ali