Concerned Myeloma Caregiver

Hi Sister0409  and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your bother….. and from your post I am assuming that you are not in the UK….. possibly in the USA.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but for some context I have been on my journey with 2 types of rare T-Cell Non Hodgkin’s Lymphomas for over 26 years.

There are a few active members in the group at the moment so let’s look for them to pick up on your post as they can share based on their first hand experiences….. do remember that on the whole the community members have been treated in the UK by our amazing NHS.

Thank you Mike! I appreciate your response. And yes I reside in the US. Looking forward to sharing stories with the members. Thanks again. 

Hi Sister0409    Kevin here also based in. U. K.    Myleoma patient and presently in Remmision.     Your brother is going through a lot and so are you !!     I guess the care team have taken more blood sample to see if Myleoma is present again ?   Some treatments in the USA can be different than. U. K    Post stem cell on maintenance treatments for 4 + years is good  I am now 2-3 years post. S. C. T.   has your brother been given recent. M. R. I.  Scans for bone damage which of course is or can be part of the blood cancer condition.      Pain management is critical for the body recovery process!   Also care for the carer is important!   I hope they can ease his suffering and possibly move to second stage options for.  M. M.  Treatments if needed      Which are a lot of new ones with incredible results here in the uk.        Best wishes.  Kevin 

Thank you Kevin. I appreciate your feedback. He did have a pet scan within the last 4 weeks and from what I learned there was no significant issues but I did not read the report. I am worried about him because this is a part of the journey that is new to us. I have not seen this level of fatigue and loss of appetite .... and also pain. Thank you again for reaching out and I appreciate being part of group

Hi again Sister0409  and great to see Kevin Vespa  picking up on your post.

I will say that I have had 2 Allograft Stem Cell Transplants for my Lymphomas….. June 2014 then Oct 2015 and it took years to say that I was through to the other end of the SCT tunnel

Hi Sister0409,

You and your brother are going through a lot.

Like pretty much everyone on this forum, I am not a medical professional. I also only have the info which you have given, so there isn't much to go on.

This is my best guess as to what is going on. I think you are saying that treatment started in August 2026 (so only a few weeks ago at most).

One of the characterstic symptoms of myeloma is bone pain. A new treatment can stop it from getting worse, and it can sometimes/often even reverse the pain, but that can take time. Meanwhile the myeloma cells, though they are being killed off by the treatment are for now still damaging bone tissue, causing pain in the ribs. However, ongoing treatment will stop that.

As for the fatigue, weight loss and lack of appetite: they are sometimes side effects of treatment. High calorie milkshakes can be prescribed or bought over the counter from a pharmacy, to help with the weight loss.

Your brother could experiment with different food: I got through ice cream (which I never previously liked!). I also saw a dietitician: the normal advice about a healthy diet is a low priority right now, so she and I discussed how great Hobnobs are! (they are a brand of cookie in the UK). She was happy for me to eat a packet or two a day in the circumstances (I just checked: there are about 1,300 calories in a packet). I lost 35 pounds during treatment (I was far from obese before) but it turned around.

A while after going into remission in 2023, my appetite reversed. I still eat a huge amount!

All the best to you and your brother.

Thank you for your message! 

Thank you Chicken2. I appreciate this advice and I will mention to him about a dietician. That sounds like a good plan! Also, thanks for your input about the bone pain as I do suspect that the pain is from the myeloma in rib cage/back area but at this point .... the medical visits to ER have not yet pointed to that as the source of pain ... again thanks for your input. Since his diagnosis in Dec 2021, we have traveled about 2 hours to meet with the oncology team and they have been great! However, with the complications over the last month, it has been challenging not having his cancer team closer. Take care!