I am new here. My mum was diagnosed with myeloma in November and she has rare pulmonary and heart involvement which has reduced treatment options. She started treatment but it is very overwhelming how much support family has to ensure we get her to her appointments which can be four or five a week while juggling work and an inflexible job. This has lead to more guilt because I cannot be there when I need to. We have just been muddling through and trying our best to support her care needs. She is on oxygen which means she cannot drive and struggles to move around. We have just completed cycle 1 of treatment. Hope it gets easier as time goes on. Are there any other families out there in a similar position? I suppose the hardest thing to cope with is that she is early 60s and we feel cheered of the twenty or so more years we may not get with her now and the importance of making the most of the time we do have!
Hi everyone, im a 70 year old female, have MM, had SCT and d am now on a maintenance drug. Ive been in remission now for 2 and a half years, my life has changed obviously but im living my new normal. Life is pretty good
but apart from the tiredness and terrible neuropathy ,I have occasional days where I cry uncontrollably and sometimes for no reason. My husband and family are brilliant but does anyone else have these emotional days? Today is one of them. I know people are on different stages of their journey and I know im very lucky but I just needed to ask you!
Thanks for your reply glad to hear that there could still be many years ahead. My mum had pulmonary hypertension with a distended pulmonary artery. This has put pressure on the atrium in the heart and although this is not a major concern at the moment this could eventually lead to more issues down the line with her heart.
She was diagnosed with smouldering MM and it is the affects on the lungs that have been the worst because she cannot go about a normal daily life due to the shortness of breath even with oxygen.
Like yourself stem cell therapy has been ruled out. So a lower dose treatment has been started. They were unsure at first if the MM was causing the lung issues but after consulting with specialist they said they think that it maybe separate from the cancer and that is not causing it.
She was on lenalidomide but was asked to stop this because her blood count was so low. Also on daratumumab.
The treatment is obviously putting more pressure on lungs.
it has been tricky dealing with three different specialists as she also has AF which has resolved itself for the time being after a cardio version. So we have haematology, cardiology and respiratory consultants and they all have their own opinions and can give differing information.
We were not given a stage of cancer. Does your stage 3 mean it is progressing quicker?
Thanks for giving me some hop on these uncertain times!
Hi Fifididi88,
Apart from the lung issues, a large part of what your mother is going through sounds familiar to me.
Much as though I don't shut up on this forum , I haven't gone into my heart issues until now. I will now be a bit less vague, as it may give you some reassurance.
In 2019, I started getting atrial fibrillation (AF) out of the blue. My GP didn't believe me (I couldn't make my heart rate go crazy fast in front of him), so I bought myself a smartwatch to provide evidence.
My heart was then examined for the first time ever: there was a strange mix of symptoms. It took some months, and a professor in cardiology to work out that I had 2 independent heart problems coexisting: the wiring of my heart was short circuiting (causing AF) and there was a genetic heart problem silently lurking all my life.
The AF was fixed with an ablation (I waited until Summer 2021 when hospitals were not full of Covid). I am stuck with the other issue, but it is monitored.
Therefore my haematologist and my cardiologist have had discussions about my case.
When chemo started, sometimes I didn't get everything as my platelets were too low. Looking back at my medical records, they have never been high, but during treatment they went down to 23 (they like a figure of at least 50). Getting into remission felt like being in a plane that's flying on just one engine!
Even now in remission, my platelets are only around 50 (I am solely on Daratumumab now as Lenalidomide was reducing it).
It's been a lot: I am still only in my fifties.
Nevertheless, I am still going, and making the most of life!
You asked about stages. This is from the Cancer Research website:
"The ISS divides myeloma into 3 stages:
Stage 1 means:
the level of the protein called beta 2 microglobulin (ß2-microglobulin or ß2-M) is less than 3.5 milligrams per litre (mg/L)
the level of albumin in the blood is more than 3.5 grams per decilitre (g/dL)
normal LDH level
low risk cytogenetics
Stage 2 means you don't have either stage 1 or stage 3 myeloma.
Stage 3 means:
the level of ß2-M is more than 5.5 mg/L
high LDH level
high risk cytogenetics"
There is no Stage 4 (on social media, it is remarkable how often antivaxxers claim to have Stage 4 "turbo" myeloma).
As with other cancers, the later the stage, the worse the prognosis.
Thanks so much for sharing this it is good to know that there is someone we can relate too that is having a similar experience. You are very young to be going through all this as well.
Sounds similar with heart issues as my mum has an abnormal mass in her heart and they did not know what it was either but they said it was a congenital thing that she was born with.
We had a similar experience with the doctors too we were begging them and telling them something was not right but they just kept saying everything is fine it took two or three years of fighting with them to actually do further tests and get to the bottom of it all.
Mum had already been through a lot the last five years with other health concerns and we did not think it could get much worse but I think they could all be linked to the multiple autoimmune issues as they are yet testing her for another in her lungs. They do say that these can cause MM.
Thank you so much for sharing it is good to have a listening ear and makes me feel a bit better to talk to someone!
