[pjsuffolkParticipant]

Well I’m quite glad our GP does offer routine annual health checks after 62. I had one in June, feeling totally well, and they said likely myeloma. Confirmed after about 4 weeks and already six weeks into chemo, with Stem cell transplant planned for December.

What made it more of a sudden surprise was that my wife died just over a year ago after a year of lung cancer. So here we are again. But I have lovely supportive family and friends and feel pretty positive.

Things I’d like to find out about are how things recover after the SCT, how soon people have bee able to travel, how sturdy your health is during first remission.

[robert0439Participant]

Hi. I can only relate to when I had my SCT in 2018. I had a load of chemotherapy prior to the SCT which knocked me back somewhat to say the least. The harvesting of my stem cells was not an issue to me.

After my 2 weeks in Nottingham City hospital, I was discharged and went home. I was given a bag of prescription drugs to which I had no will or enthusiasm to sort. I was wiped out totally and spent a lot of the first month sleeping as I had no energy. My wife fortunately took over and sorted everything for me. Without her I would not be around so respectfully, you will need all the post SCT support that you can get.

I was informed by other post SCT patients that it would take me around 12 months before I could say I was back to “normal” so to speak. They were correct on this point.

Anyway, good luck and I know that having the SCT is the very best thing you can do.

Kind regards,
Robery

[rosaryParticipant]

Good luck with everything and in answer to your questions

1. 3 months to recover from SCT – went well with no complications …

2. Travelling after about 6 months shorthaul , 12 months longhaul

3. “Sturdy” on Lenalidomide maint now for 5 years post SCT

Lots of different experiences you will read about and my side effects were “normal” …the best advice I can give is to get in as good as shape as you can now and have someone around for the first month or so to help you – I was pretty fatigues most of the time which I found frustrating ….

Good luck

[lottieParticipant]

I was diagnosed in May 2022 after visiting GP with burning feet sensation thought it was a vitamin deficiency.

I had 4 rounds of Dex,Velcade, Dara and Thalidomide. Harvested end September 2022 didn’t collect enough so had a different chemo and second go at harvesting. Had my stem cell in Jan 2023 with little side effects. A bit of nausea, tiredness, upset stomach. My STC was a success my para proteins were too small to be accountable.

First week home I was very tired but gradually my energy levels increased and started walking around the garden. I was very careful outside until I had all my childhood vaccines which can take about 8 months.

I visited France this year to visit my granddaughter, we went by Eurostar as opposed to flying. I have also been away for weekends and attended a family wedding. Just a case of being careful. My consultant told me not to hide myself away as that was not good for your immune system.

I have been on Lenalidomide since April 2023 and doing well. I am in remission since Sep 2023.

I have hand gel with me all the time and avoid crowded places. It is manageable and you can still get out and about. Just a case of being sensible. I wear factor 50 and avoid sitting in the hot sun.

I am sorry for your loss, I lost my sister to lung cancer last October and my brother in law in Jan 2023 to COPD so can understand what you have been through.

Good luck with your treatment.

[blobgobParticipant]

I had my first, and so far only, SCT in Sep21.

I doubt I would have managed on my own, I note you lost your wife recently, so hopefully you have some other family who can be with you for a few months, I would suggest at least 3 months, possibly longer. My wife had to do a LOT for me over the next few months, even more than she normally does!

I had to purchase an electric riser chair for our living room, as I could not get up from a seat without help, so this at least meant I could get up without needing to ask my wife for help. I also slept in this for a few weeks until my new bed was delivered.

I also purchased an excellent adjustable bed from Dreams, which again enabled me to get out of bed without anyone needing to help me. (Sleepmotion 800i Adjustable Platform Bed Frame)

NHS offered me very basic guid rails to fit on my previous bed, so I could pull myself up. I declined these as it was during Covid and the person sent with them insisted he had to come into the house to fit them!

After about 4-5 months I was starting to get out and about again, with my newly regrown hair to show off! Not that I have much anyway……

I’ve long since caught up with all my jabs and find that my health is good and I don’t seem to be catching any more colds than I was before I was diagnosed. My blood count is normal now, so I appear to have enough white cells to keep most bugs at bay. I caught Covid once, but it was mild, so I must assume I can thank the vaccine for that.

Only issue I had was a low Hb a few months post SCT, but blood tests showed my Iron and Ferritin saturation were very low, or I should say REALLY REALLY low, so my consultant ordered me two bags of Iron solution IV. I was given these as an outpatient, a week apart. Within a few months my Hb went from just under 10, to 14, which is almost what it was before my MM diagnosis. I now just take a single multi-vitamin +irn tablet each day, and that seems to be keeping me stable. I definitely have more energy than I did before the Iron infusion was given.

Good luck with your treatment pj!

[sajidaParticipant]

I’m recently diagnosed with MM but i want my full reports where i can see my actual figures

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