[mulberryParticipant]

Hi Marie

I had a nasty rash when I started to take lenalidomide as part of my triplet induction combination. That was very itchy and raised and quite alarming. I had to leave a longer gap between cycles but was OK to continue the drug at the same dosage and didnt get any further rashes. You havent specified which drugs your step father is on, but I’m presuming that one is an IMID, either Thalidomide or Lenalidomide (Revlimid)?
I suggest that he or your mother contacts his myeloma nurse to discuss this rash, its important for the team to know whats going on, especially when they are not seeing patients as much due to covid. Hopefully the rash will calm down with time and the creams suggested, but as it is getting worse, do ring again.

[mulberryParticipant]

I’m sorry you have this worry.
Although the chances of MGUS developing into myeloma are only 1% per year, rising amongst older people, but still to just 5% a year, it is a worry hanging over your head. And the reason for knowing is to have occasional blood tests to check that there is no evidence of a rise in paraproteins. Personally I would press for repeat tests just in case you have a variation called MGRS, monoclonal gammopathy of renal significance. It’s still unlikely, but I would want to rule it out. With these blood disorders we have to become advocates for ourselves and it takes a bit of getting used to. I hope your kidney issues resolve.

[mulberryParticipant]

Good luck with the trial Mike, I wish you every success with it. Thanks for posting, I think it’s important for all of us to keep the road ahead in sight, and to do what we can to make sure all patients have access to as many treatments as possible. I don’t think it’s always appreciated (by patients or by NICE) how well patients can feel despite having X number of lines of treatment.

[mulberryParticipant]

Wonderment, are you having any success yet?
Your experience sort of reflects mine a bit. I started having tests in March, was diagnosed in May but didn’t actually start treatment until the very end of August, by which time my myeloma had moved from stage 1 to stage 2 and I was extremely anxious. However in hindsight as my paraproteins were yoyoing around (which is unusual, probably due to taking curcumin) I wish I had had confidence to wait. Having said that I was seeing a consultant by then. If you are not, I’d make a fuss. Lots of us learn to self advocate pretty quickly (or our partners do on our behalf).

[mulberryParticipant]

I too have registered on healthtree.org which is a patient created database created last year to help myeloma patients to find others with similar types and presentation of myeloma and to help researchers with a ready pool of patient data. In this database there are a number of people who were diagnosed in their 20s almost 30 years ago, and still going.
These people were diagnosed before the major breakthrough treatments of thalidomide/velcade and bortezomib were available, which truly have been game changers in terms of life expectancy.
Added to this there are significant newer treatments available now, and plenty of ongoing research so there are likely to be new routes of treatment available such as CAR-t cell therapy, BiTE etc by the time you might need them. Myeloma is not yet curable in the UK, and allogenic transplantation is too risky for most myeloma patients as the mortality risk sharply increases with age, but it has provided seemingly unending remissions for some younger patients. Survival statistics seem to be up in the air at the moment, patients having maintenance after autologous stem cell transplants for example are living so long that survival benefit statistics are not yet available. Researchers who used to use overall survival as an end point in studies are now using progression free survival as patients are living longer.
Much more research is needed into the chromosomal changes that cause myeloma, but it’s already known that young people even in the days before current treatments, have lived much longer than middle aged people, who not surprisingly have tended to live longer than elderly patients who are more likely to have comorbidities.
A myeloma diagnosis is profoundly shocking at any age, and even more so for a young adult. However the diagnosis has also helped me to appreciate the important things in life and to grasp all opportunities (leastways before Covid), and I hope that it does the same for you.
If you are interested in the scientific side of myeloma I find an online group called Smartpatients (which has a myeloma subgroup) has some very interesting threads. Welcome to this group we all find ourselves unwilling participants in.

[mulberryParticipant]

Dolly dream, it’s good to hear your husband is better during his week off meds. I found I needed to stick to a regime of half sachet of laxido a night every day I’m taking lenalidomide, if I miss a dose it takes days to get rid of the constipation.

[mulberryParticipant]

Hi millie12
I can’t give you first hand experience but lots of people using myeloma Facebook groups seem to be doing very well with daratumumab, velcade and dex as a second line treatment. I’d personally not want to miss out the opportunity to have daratumumab at some stage. It is a monoclonal antibody which attaches to a specific protein on the surface of myeloma cells enabling your immune system to recognise the cell as myeloma and to get rid of it. This is a different mechanism to the drugs you (& I ) had before. I’d check out if you don’t have it as second line whether you will miss out altogether. Lenalidomide on the other hand, seems to be given at a variety of different stages, so if you can keep one of the drugs back for use later that would come into my decision making. The biggest side effect problem with DVD seems to be the potential for a severe reaction during or after the first infusion which is why it is done in hospital. Like every myeloma drug, there are potential serious side effects with DVD, but some people appear to be living very well with it, and their myeloma levels quickly responded to the treatment.

[mulberryParticipant]

Hi Jillspikesmum
When I had my SCT last year normal afternoon and evening visiting times applied, although i would have been too tired to have evening visitors.
My visitors were restricted to my husband and one or two visits from my adult son and daughter. It was important to me to have my husband around for the melphalan and then return of the cells, and was nice to have some company for the first week after SCT. However after this, when at the most neutropenic (usually for a few days between days 7 and 12) I wouldn’t have cared less, I felt quite guilty that he was visiting and I just needed to sleep. I didn’t feel dramatically ill, just so tired. I welcomed having clean clothes and snacks being brought in, but I wasn’t much company. I hope your SCT goes well, for me it wasn’t nearly as bad as I feared, and someone in my support group recently sailed through without any diarrhoea or sickness whatsoever. We have to be warned about possible side effects, but most of us get through with fairly minor ones. But do take pads in case of diarrhoea!!

[mulberryParticipant]

It’s not uncommon to need a nap during the day during early treatment, although your husband’s does sound excessive, if he is managing to sleep at night. (I needed sleeping tablets to sleep for the first 6 months after diagnosis, without which I would have slept on and off all day). It’s worth mentioning this to his myeloma nurse, if in any doubt always mention odd changes.
I have always felt more tired towards the end of 28 day cycles, and most energetic at the end of my week off medication.
If you can persuade your husband to go for a walk I suspect it would be good for you both. Keeping physically active is definitely a good thing with myeloma.

[mulberryParticipant]

Although I didn’t have pain when I was diagnosed (I didn’t/don’t have bone lesions), one of my friends who has myeloma was in a wheelchair & in a lot of pain for 6 months after she was diagnosed. For the past 15 years she has regained her mobility, and has been able to lead a full and active life, walking, digging her allotment, driving long distances, frequently going on holiday. Perhaps not climbing, but certainly active.
Now I’m in remission I’d scarcely know that I have myeloma.
Hope your husband is soon feeling better.

[mulberryParticipant]

I found a link on the main part of the website, have you found it yet?

[mulberryParticipant]

Hi Worksopian and wonderment

Hopefully you’ll start feeling better rather than worse worksopian, although we get told of a long list of side effects, most of us only have one or two minor side effects,and a few have none at all. For me the most significant thing was that my life was taken over by hospital visits and travel to & from. The hospital teams are brilliant at sorting side effects quickly.

Wonderment, many people with myeloma do not start treatment instantly, some can be on ‘watch and wait’ for a long time, months or years. This is because it’s not a curable disease and unless the myeloma is causing damage to organs (is associated with high calcium, kidney damage, significant anaemia and/or bone damage) there is no evidence that immediate intervention is beneficial, and it can help drs to know how quickly a particular myeloma progresses. (This can vary enormously between patients)
This is a very stressful period, between myeloma being mentioned and actual diagnosis. I hope you have answers soon.

[mulberryParticipant]

I found the following useful:
-Button up PJ tops rather than nightdresses as lines went into my Hickman line in my chest
-Wet wipes and soft loo rolls, plenty of!
– loose, comfortable clothing, if possible it’s best to get dressed every day, and to wear clean clothes everyday.
– a change of nightwear for every night (an arrangement to do washing and bring in clean things)
– simple pastimes that don’t need too much concentration, in part because nights are so disturbed that your mum is likely to snooze on and off, not because she’ll necessarily feel poorly.
– I took in a cool box and had snacks and drinks in it, with my husband bringing in ice packs every day, but that may not be feasible with covid regulations. However a few days before I was discharged I was told that there was a patient fridge available….
– a hat or two, I also wore my wig during the day.
– I didn’t use many of the things I took in to pass the time. I felt pretty ok days 1 to 8 and did a fair bit of walking around, then felt poorly days 9 to 12 and slept most of the time. By the end of day 12 I knew I was on the mend and was discharged day 13 (although readmitted shortly afterwards!) It was during 2nd admission I really benefited from the books, films etc I’d taken in.

Although it feels a really risky procedure, and we have to be told about all the things that can go wrong, in reality most of us have only a few of those side effects, and often a much easier time than we fear. I hope that’s the case for your mum.

[mulberryParticipant]

I don’t think anyone knows the answer.
In theory my immune system is depressed, my IgA & IgM levels have been low since I was diagnosed over 2 years ago. However I’ve not had any infections in years, and only caught one virus, whilst in hospital after SCT I caught parainfluenza, from which I recovered in a normal timeframe, despite a severely compromised immune system.
I think this is an area researchers have been looking at, but I haven’t seen any results. My understanding is that
myeloma is cancer of plasma cells, the cells that go on to create our immune systems, but our suceptibility to infection seems to vary as widely as our bone involvement, kidney damage etc. Just another way myeloma creates an individual path for us all?

• This reply was modified 4 years, 4 months ago by  mulberry.

[mulberryParticipant]

It is normal to have some protein in your blood. The normal range is 60 – 80 g/l. Anything above this may suggest a monoclonal protein, not normal, could be myeloma. At diagnosis my serum protein level was 96. There are two less serious subtypes of myeloma that may not develop into active myeloma (requiring treatment), MGUS and Smoldering Myeloma. Its good that you are seeing a haematologist, who will also investigate your shoulder pain, but it may be that you haven’t got full blown MM.

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