[daffodilParticipant]

Hello,
I have just been diagnosed. My plasma cells were 15% abnormal on bone marrow biopsy, and I have elevated lambda. My question is around the first-line drug therapy prior to STC. For those who have been through that, is it very disruptive to day-to-day wellbeing? Is it unrealistic to try to continue work through that stage? I work from home, with occasional visits to clients/trade shows. A typical day involves a lot of zoom meetings. I am still working now pre-treatment, but with pain and drowsiness off the scale, it’s been challenging.
Any experiences that can help me understand what to expect would be appreciated.
Thank you.

[glencParticipant]

Hi Daffodil. I had a Stem Cell Transplant in May this year. This was preceded by 4 months of DVTD chemotherapy from November 2023 to end of Feb 2024. Weekly injections of daratumamab and Bortez, dexamethasone steroids on the day of treatment and the day after and nightly Thalidomide tablets. The first thing is to say is everyone will experience treatment differently depending on lots of individual factors so I can only speak from my own experience. I am 60 and was relatively fit before treatment started, with no symptoms from the myeloma.
Also, Im lucky enough to have retired early so didn’t have to think about whether I could work. But I had a busy life involved in my church and a charity supporting a hostel in India. I do lots of admin work from home, lead the music in church every Sunday, used to run a mid week group at my house, am on the leadership team of my church, used to go to the gym 3 times a week, meet friends for coffee, lunch etc. While I was undergoing treatment I was able to continue doing almost all of this. What you find is that the side effects of treatment follow a pattern during the week and this is fairly predictable so makes it easy to plan and avoid booking certain things in on the days you feel less well. Generally I would be fine on treatment day and the day after, then would feel more tired and lacking energy for a couple of days, then start to pick up again. I did reduce my gym attendance because one of my classes clashed with treatment day and another coincided with my tired day, but I still went once a week and did a zumba class and toning class. I never missed any if my church activities. I think because you work from home largely, you could probably plan your week around your treatment and side effects, bit a discussion with your employer about flexibility would be good. But you can only see how it affects you. Best wishes with your journeys. X

[rabbitParticipant]

Hi Daffodil,

I agree with glenc that the effects vary so much from one person to another.

Background: I do office style work from home (and have done for years before my diagnosis).

When I was diagnosed, I went on sick leave, but it was partly a matter of mental health after getting such a life changing, traumatic shock.

By the way, I had the same treatment as glenc (which is pretty standard) except that I had lenalidomide instead of thalidomide. I didn’t have an STC.

When the GP asked me how long the sick leave certificate should be for, I picked four months out of thin air. After that, I came back gradually to work.

However, working full time again proved impossible due to fatigue, so I took a few hours off here, a day off there. It was a messy set up both for my employer and for me. They never knew when I would be well enough to work, I would push myself to work hard even when I wasn’t really up to it. After a year of that (in remission), I arranged with HR to go part time, with my work spread over the week.

I call it semi-retirement. I have more time to enjoy myself, and no guilty conscience. Meanwhile my employer – which has bent over backwards to support me – knows where it stands.

Regards
Rabbit

[blobgobParticipant]

I was struggling to work just before I went to hospital feeling generally unwell. I did go to my GP first, but my symptoms worsened a lot while the GP was waiting on the blood tests. Once I started treatment for MM I was definitely NOT fit to work or even leave the house on my own. I was on VDT 28 day cycle treatment. After 5 cycles my cancer was in remission and I rapidly started to feel well enough to undergo an autologous SCT.

That was over 3 years ago, so far so good. But no work, as I’m retired now!

• This reply was modified 3 days, 20 hours ago by  blobgob.

[daffodilParticipant]

Thank you so much for these very helpful insights. I really appreciate getting some real-world experience advice!
daffodil

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