Smouldering myeloma

FormerMember over 4 years ago

2 replies
37 subscribers
1660 views

I’m know I’m posting this when the end result is too late but I’d appreciate comments if anyone has had a similar experience.

My wonderful husband was diagnosed in September 2019 with lung cancer as part of the diagnosis he has so many tests including a PET scan, CT, MRI etc etc. At one point he was also diagnosed with Smouldering myeloma. The consultant said she’d refer my husband to a haematologist.....although I asked about this constantly face to face, phone, & email my husband didn’t ever get to see the haematologist. He just kept getting told that “ oh yes , you haven’t seen that consultant yet will make a note, Sadly my husband passed away still having no communication with haematologist or any reference made at any appointments to the Smouldering myeloma

id be grateful if anyone diagnosed with Smouldering myeloma could post how the procedure from meetings with consultant, treatment etc

i have a number of formal complaints to raise with the oncologist & oncology department in general as soon as I feel strong enough so any information about things that should have been done but wasn’t.

Love & hugs to all

greg777 over 4 years ago

Hi kernowp,

I am so sorry to read about your husband and I send you my deepest condolences at what must be an exceptionally difficult time.

I was diagnosed with symptomatic myeloma so I didn’t have the experience of smouldering myeloma, but what I have learned over the past 5 years or so is that the medical team generally tend to wait until the myeloma is displaying symptoms (or the protein / light chain markers have got over a certain level) before initiating treatment so it doesn’t seem too unusual what happened to your husband. However I would have expected regular monitoring though (maybe every couple of months) so I’m surprised that wasn’t done and you might want to get some answers around why that wasn’t done. Myeloma, in of itself tends to be one of the slower growing, more chronic-type of conditions (in comparison to some other cancers), and so from what I’ve gleaned the medical teams don’t often rush into treatment in comparison to a lot of other cancers unless there is a very pressing need. My thinking is that they didn’t see it as the priority but that’s not to say that it should have been completely ignored so I think you’re right to try and get some answers in terms of why they did things the way they did.

I am hoping that you manage to get some answers to explain why things were done the way they were done and I am very sorry for your loss.

Greg

FormerMember over 4 years ago in reply to greg777

Thank you Greg, I appreciate your reply. The oncology department have let my husband & our family down very badly & I will be issuing a formal complaint about the Smouldering myeloma & the other long list of errors, lack of care, scant information etc.

I send my best wishes for your continuing treatment.

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