[user1203Participant]

All

What is the maximum age people have had their SCT? I know someone who is around their mid 60’s going and they are anxious they are too old. The doctors are saying they are still young for this and to have the SCT. Just wondering if anyone else around this age has had one. Thanks

[mulberryParticipant]

The average age of diagnosis of myeloma is around 70, with diagnosis peaking in the 80s. So in myeloma terms your friend is on the young side.
SCT suitability is assessed according to overall health. Most people under 70 and many people under 75 are offered SCT in the UK as it statistically offers the best chance of a long remission.
Although we have to be told of all the things that can happen during the process, and of all the things that can go wrong, most people have only a few side effects, very very few have lots of complications. One person in my support group who is in the same age group as your friend had her first SCT this year, didn’t have ANY side effects (apart from loosing her hair), and she is now in remission. I think it’s rare to sail through without even diarrhoea or nausea, but most of us who are offered a second one, willingly go through the process again. For me in my early 60s it was much easier than I had envisaged, it kicked me into remission within weeks of receiving the transplanted cells. On the down side my neutrophils never recovered to pre SCT levels, but that has had no consequences for me so far. (18 months in).
On the NHS in the UK we do not have access to all the latest drugs medically available. If your friend chooses not to have a SCT, there will also be consequences later down the line. He or she is likely to be offered lenalidomide in place of SCT, but the myeloma is statistically likely to relapse more quickly.
I think the balance of risks with SCT is fairly fine if your friend is already in remission and has private health insurance cover that will cover all drug costs. There would be a clear advantage for SCT if NICE agree to offer lenalidomide maintenance after SCT as statistically this virtually doubles remission times and increases overall survival times. Unfortunately for us although they agreed with the science, they couldn’t agree the finance, and have issued a draft “no”, the matter is scheduled for later this month.
I hope this helps.

[user1203Participant]

Thanks. Very reassuring and kind of you to take your time. Was wondering if there was anyone on here 65 plus who’s had it themselves.

Such a shame re the Lenalidomide. Especially as everywhere else seems to have approved it

[myelsomaParticipant]

I’m 69. Diagnosed mid-Oct 2019. Doc was satisfied with my fitness (average physically active, certainly not a fitness freak) and assigned me to the heavy chemo regime – Dex Velcade Thalidomode. 5 months. Then washout month. SCT due to start mid-April was delayed 3 months by Covid-19. so I went back on 2 months “holding” (Lenalidomide and Dex). At last came harvesting (July 20) and SCT (Sep 2).

Not much mucositis (many Calippos during the Melphalan drip), diarrhoea, brief loss of appetite Days 2/3, felt good enough during the 1st week to use the exercise bike in UCLH Ambicare; PICC line infection Day 8 put me in hospital where I had antibiotics, saline drip, platelets; discharged Sep 18.

I didn’t feel all that unwell during the whole SCT fortnight. Despite BP of 68/50 and temp peaking at 40° at the start of the infection the docs thought I looked pretty good. Never felt sick or needed anti-sickness meds, although I took them for a few days from Day 0 on their recommendation but soon stopped. Tiredness/sleep was random, sometimes I just dozed off a bit during the day, sometimes pretty wakeful at night, or fast asleep for short bursts.

Now 5 weeks into recovery at home. Some days early on I had to sleep mid-afternoon for 30 – 90 mins, but that need soon left. Appetite has been good throughout except for that brief spell Days 2/3. The worst thing is being limited physically: I was used to doing DIY, sometimes quite physically demanding, and now I push myself somewhat at certain tasks and activities (carpentry, bike-riding) and must pause mid-task to rest – sitting back for 5/10 mins, or just to catch my breath. Cycling is great – it is perfect exercise, because my back (compression fractures) is well-supported by the arms. I don’t know if the physical tiredeness/stamina limitation is because of the SCT recovery or muscles doing overtime when I am more physically active and not supporting my back – even things like cooking, washing-up (unsupported) are taxing after a while – or both. PRISM (a tailored physio regime) is imminent, I understand.

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