Hi Dazz
I am on the Radar XV trial. I am high risk so on that pathway. SCT did not give full remission but it did help.
I was then put on maintenance treatment of 10mg lenalidomide for 21 days and a week off and isatixamub via a drip.
I was given this weekly for 12 weeks then reduced to fortnightly. In November this was reduced again to monthly.
My bloods have remained stable and myeloma markers have also been stable. My back gives me gyp but that’s a separate issue.
I had no significant symptoms other than
The day after treatment I get a bad headache
I sometimes get flushes- bit like the menopause days!
I do have a day- usually 2nd after treatment where I am like a rag doll.
All of the above have been easy to cope with and worth it.
Now, on monthly there was a slight increase in symptoms but the rate of the infusion had been increased. My team adjusted it and so far so good. Not having to travel to hospital so frequently has been great- can plan a wee bit further ahead.
Everyone is different but I hope some of this helps.
Hi Anne
Sorry for the delayed response, sometimes it’s hard for me to find the relevant bit!
I am in Scotland- NHS Tayside. I got my vaccinations starting about 6 months Post SCT. My consultant referred me then I got an initial appointment via a call from the vaccination programme. I had to go to a local centre. The whole revaccinations took about six months. Staff were great explaining everything. I had no adverse reactions. Covid and flu were treated separately but staff booked these in to avoid having too many vaccinations at once. I finished July 2024.
Hope this helps.
Hi
A woman replying but some of it may be relevant. I had my SCT June last year. Had got a wig but only wore it once because it was itchy in the heat.
I bought a selection of bandanas which were great and wore them prior to SCT as like you say it preempted some well meaning comments.
I went to my hairdresser and got my hair cut short in preparation for SCT, again to make the transition easier.
However the day before being admitted to hospital I persuaded my husband to shave my head, a decision I never regretted.
I never wore any head covering in hospital but it was only my husband and best friend visiting so that wasnt an issue.
Back home I alternated between bare head and bandanas.
Once my hair began to grow however, I made adjustments. My hair initially grew back soft and fine (tip from hairdresser use baby shampoo) but then the chemo curls sprouted!!!! Hairdresser to the rescue again who “restyled” my curly mop. She shaved the back of my head – a number 3 whatever that means- and the hair at the top and front longer and now straighter!
I dont know if any of this will help but it might. As you say, everyone is different and we just have to do what feels right for us. It sounds like you’ve worked out a wee plan for yourself which is great. Makes you feel like you have some control in a situation you never expected to be in.
My top tip in this particular situation – enlist the help of a hairdresser/ barber you feel comfortable with.
Good luck with your SCT and take care.
Hi anne
I had my cells harvested at Edinburgh Royal then the other bit when you stay in hospital and the cells are returned was at Ninewells (Dundee). I’m under the care of the haemotology team there- no complaints they are wonderful. I also go to a myeloma support group at Maggie’s in the grounds of the hospital.
My mobility is definitely much better after SCT – I dont know what I expected. My pain levels fluctuate but I am reluctant to up the dose of the medication as it tends to make me dozy! That’s my choice but I know there are options available. I still walk with a stick which doesnt bother me now. My husband bought me walking poles and they’re great for walks along the seafront- definitely help my posture.
The fatigue too is better post SCT. I still get a day here or there when my energy just goes. It’s often after a treatment day. I’ve got much better at resting if I need to. Initially I tried to fight the fatigue but have learned that’s not a good idea. As I said earlier I’m not good at pacing myself! I like to see a full diary- friends and family are great however and accept that sometimes I have to cancel- doesnt happen often!!!!
I hope some of this helps. I knew my chances of having a complete remission after SCT were slim but life is still definitely better.
You take care.
Thanks for your replies. Its always good to know you are not alone.
As far as post SCT goes then life is different. I havent gone back to “normal” and accepted that isnt going to happen. I am in the high risk group and didnt get a complete response so still some myeloma present. I am in the Radar trial so on a maintenance programme which (touch wood) is keeping things at bay. I have fractures in my back so back pain is a pest and my mobility is not as I would like. The fatigue drives me mad.
Having said that I lead a pretty full life, and enjoy the things I do. I am still not good at pacing myself so frequently ” overdo” things. I’ve taken up new hobbies and now appreciate the area I live in so happy taking short day trips. Thoroughly enjoy a coffee and cake with friends! I enjoy the little things.
Anne- I’m in Scotland too. I do hope the peak has passed as I said earlier Covid seems rife- and that’s from people who test!
Hi.
It’s ok to be fed up. It’s hard work dealing with myeloma day in day out. Working full time deserves a medal. I’m retired, keep busy but realise I’m so lucky that if fatigue hits I can rest.
I think there are times when the enormity of what we are dealing with just hits. Most of the time I can be as normal- whatever that is- as I can be but every so often, as you say, I too just get fed up. That doesnt mean I’m giving up!
I dont think I’m explaining this very well but you are allowed to be fed up and here is a good place to sound off about it.
You look after yourself. Take care.
Hi Sara
Will try and answer bits. Sorry, I’m not very good at checking in on here.
Regarding church- we didnt go in person until after the 100 day period. My consultant advised against it. In the weeks leading up to the SCT I was ultra careful mainly because I didnt want anything to go wrong. Like you, I was lucky as my minister (I’m in Scotland) phoned regularly and was a great support. Also, like you, my faith is important to me. When I was in hospital I used the services of the hospital pastoral team.
As for the SCT itself the worst bits for me were the fatigue, the weariness, the brain fog and the loss of appetite. Apart from one day when I stayed in my PJs , probably around day 10, I did get up, as in washed and dressed and into my clothes, even if it was to just sit in a chair. I had no appetite at all. We had a patient fridge so my husband brought in smoothies, yogurts and anything else I fancied. The dietician came to see me. Although my appetite has improved enormously it’s still a bit of an issue – not helped by the isatuximab.
I found my concentration was rubbish but did puzzles. read rubbish and listened to podcasts. I looked forward to my husbands visits but in reality an hour was more than enough.
On an emotional level I found the actual SCT a huge anti climax. I’m not sure what I expected but for me it was a big non event! I was in floods of tears that evening.
I found the continual checking by the nurses a bit of a pest. Having said that, I was glad they were doing their obs etc but during the night it could be hard going.
Hair loss- my hair began to thin out before the SCT. It had always been thick and about jaw length. I went to my hairdresser and got it cut short- discovered I had ears!!!. The night before going into hospital I got my husband to shave my head, a decision I never regretted. After, when I was home, I had a selection of bandanas, hats etc.
On a very practical level I found PJs much easier to wear rather than nighties, or button tops etc. It made access to my Hickman line so much easier for the staff and me.
I was paranoid about my mobility getting worse so I spoke to the physios and they gave me very simple exercises I could do holding onto the end of my bed. I also devised a wee walking routine (with my stick) up and down the bay and along the corridor.
I think that’s all. I hope some of this helps. Everyone is different and all our experiences are different but I think there are some shared experiences.
I dont think you’ve too long to wait now? That waiting period can be hard. Wishing you all the best
Gillian
Hi
Sorry, just noticed your post. I was diagnosed January 2023 – high risk MM with bone lesions and compressed fractures in my back. I was admitted to hospital as an emergency as my calcium levels were dangerously high. Moved to haemotology where I was offered a place on the trial and agreed as I thought it gave me a fighting chance. I spent three weeks in hospital at that stage.
I had STC in June 2023. I was in hospital for 3 weeks and 5 days.
The “100” day recovery period was ok. My consultant told me to use common sense, dont be a hermit but avoid crowds, ill folk etc
I had a couple of infections but did not need a hospital stay. December 2023 I spent Christmas in hospital with RSV virus. I’m now on the revaccination programme, have had a couple of bad reactions but ok.
Roll onto the present and I’m on the high risk pathway for the trial. Now on the maintenance programme which is lenolidomide in cycles – 21 days on 7 days off. I go to hospital- day unit every 2 weeks and get an infusion of isatuximab (trial drug) and Zometa monthly. That’s the history bit!
I go to a myeloma support group at Maggie’s which is helpful and have a good support network, plus a husband who is my rock.
I’ve kind of accepted that the life I have now is normal and what used to be is in the past. I do have a life, a lot of coffee and cake and jaunts about.
Fatigue and my back pain are the main symptoms that frustrate me. My head is very willing!
My myeloma is “under control” and my markers are stable. I’ve never asked about numbers- I would worry too much!,
As for the trial I’m glad I’m on it. The only thing that came as a shock was I hadnt realised I would be going back and fore to hospital so often. Probably I was told but it didnt sink in.
Anyway I try and take each day as it comes. Today the sun is shining. We are off to church then after lunch will either have a walk by the sea or a drive up the glens. Nothing exciting, but it sounds ok.
I hope you are making progress and the trial will help you.
Thanks for the info and reassurance. I have bone lesions and compressed fractures in my back so I understand the need for Zometa but…..it would be great if there were no side effects.
Unfortunately I fell, over 2 months ago and fractured my hip. I didnt get an op mainly because of the myeloma and the fracture was left to heal naturally which (everything crossed) it is.
I was on crutches for 6 weeks which has just played havoc with my back muscles. My team at haemotology have been great- got another CT scan and x rays and results indicate pain due to posture, enforced rest etc. as a result of the fall.
I’m gradually increasing my walking daily but it’s hard especially this week after treatment.
It has felt like I’ve gone backwards but have been cheering myself with outings for coffee and cake!! There was actually warmth in the air yesterday so had my first Mr Whippy!
Thanks for the reply David.
I had my physio apptmt today and that helped. I’m supposed to be non weight bearing but I was finding the hopping technique really sore, my right shoulder is much more painful than the fractured hip. Also I felt when I was hopping I was jarring and creating too much impact for the myeloma. I’m not sure the physio knew much about myeloma! However Im allowed to put my foot lightly on the ground when using the crutches and the zimmer.
I was in touch with McMillan post diagnosis so I’ll give them a call again.
I know I have to rest my hip but Im not really a resting person – another learning curve!!!
Hi
I too get brain fog. Not constantly and doesnt appear to be any pattern to it so I wasnt sure what to blame it on.
I feel like my head is full of cotton wool and yes a bit like being stuffed up with a head cold. My eyes are ok but my hearing dulls. I also find my concentration goes. However, I just write things down, carry a note book with me and keep pen and paper handy about the house. I find the brain fog annoying more than anything. It is bearable but I’d like it to go away!
Hi. Sorry you are having to wait for your results. The not knowing and uncertainty are hard to deal with. As you say you’ve lived with the possibility for some time but I’m guessing right now that is little consolation
You are allowed to feel sorry for yourself so dont be hard on yourself. This forum is a good place to come when you feel overwhelmed or finding things hard. There are positive posts too!
I hope you get answers quickly – so much easier when you know what you are dealing with.
In the meantime, just be good to yourself.
Hi again
That all sounds really positive and I’m so glad the NHS is proving to be so quick and helpful.
My GP was unfortunately not very helpful but once I was admitted to hospital and the diagnosis was made I cant fault the system.
I’m glad you’ve made contact with the voluntary organisations I find them an added bonus.
This time last year I was struggling big time with a “sore back”. I was eventually admitted to hospital in January and after a scan lystic lesions and compressed fractures were found. Now, nearly a year later I am much improved ….except for now with a cold!!!! Which is driving me nuts.
Anyway I do hope you continue to get the help you need.
Take care.
Hi.
Sorry you have had to join this community but you will get a lot of help here.
I’m almost 100% sure there is a Maggie’s Centre- in Edinburgh- they are usually near or in the grounds of the hospital. I go to the one in Dundee.They are really helpful both with practical and emotional help.
I hope you get home and get the help and treatment you need ASAP.
Take care.
Hi. I’m quite relieved to read yiur post but that’s probably not much consolation to you, sorry.
I am at Day 75 post transplant. I have lesions in my back and compressed fractures so was in considerable pain before transplant.
I too still experience bone pain though it is much less severe than it was and tends to be more intermittent. My bone pain increases after my Zometa infusion.
I’m due at the day clinic at hospital tomorrow for the bone drip and will see the consultant too. He does check up on my pain levels and mostly the pain is reasonably controlled by drugs.
I know everyone is different as Myeloma is such an individual disease.
I hope you get some answers from your team at your hospital. I would keep reporting your pain.
Take care.
