[kh0305Moderator]

Hi
My dad had his SCT back in 2013. He lost his hair but was very pleased when it grew back in as all his greys had gone!! Side effects wise, much like others above have mentioned, fatigue being the biggest one but some gastro problems. Otherwise nowhere near as bad as we were expecting from what we had been told! Hope it all goes smoothly in June for you xx

[kh0305Moderator]

Really interesting – thanks Jane. Dad’s struggling with second and third line treatments to maintain PP levels. We get them down then they just creep back up again which is frustrating given how successful first line treatment was. Worth asking his consultant if he’s ok to take this alongside see if it helps. Thanks! xx

[kh0305Moderator]

Hi Squirrel,
My dad suffered with rib pain for a year before his MM was diagnosed and he had a lot of lesions by time of diagnosis. He was treated with monthly zometa infusions, then they went to three monthly. H also had back pain and hip pain to a lesser extent. For the 7 years of his ‘remission’ period following SCT he barely had any pain at all, in fact it was the return of the bone pain that signified to us the MM was rearing its ugly head again before the blood tests showed it!
Hope your appointment goes well and they can get you on some treatment to help you start feeling better soon xx

[kh0305Moderator]

Hi Pest84
Though my dad was much older than you when diagnosed (62), it was a big shock to the family and it is perfectly normal to go through ups and downs. The good news is that aged 73 he is still here with us and there are many more treatments available now than when he was first diagnosed. His first ‘remission’ period was 7 years post SCT, where he lived a virtually normal life. I hope that helps to give you some reassurance. xx

[kh0305Moderator]

Hi Bobbie,
My dad was diagnosed with MM in Jan 2013 and like you went through the whole cycle of emotions. It is hard to hear that your parent has an incurable cancer, but as Jane says, MM is very treatable and dad is still here with us 10 years on!

I found for me, the best way to support was to be there for my parents when things were getting a bit much for them on a day to day basis, researching things they didn’t understand or wanted more information on, attending appointments at the hospital to ask the questions they might not be able to because of emotions running high etc.

There is also the peer buddy scheme here at Myeloma UK where you can be matched with a carer who has been through a similar experience to chat to over 6 sessions to share experiences and feelings that might be useful for you. You can call the info line on 0800 980 3332 for more information if that sounds like it could help.
xx

[kh0305Moderator]

Hi Nuala,
Welcome to the forum! Hope the SCT goes well for you xx

[kh0305Moderator]

Hi
Sorry to hear you’ve been struggling to recover from the colds and coughs. There do seem to have been a lot more around this year, that are stubborn and refuse to go away! My dad had his SCT back in 2013 and I have noticed that when he dies get a cold they linger longer than for the rest of us, particularly the coughs. I know a lot of people as well that don’t have MM that have struggled to shake colds off this year too – probably due to us not having much exposure to the bugs over the covid period and less contact.
Hope you manage to avoid any further colds now the weather is picking up. Take care xx

[kh0305Moderator]

Hi Lottie
Lovely to read your update and see that your energy levels and appetite are much improved 🙂 great news on the low Paraprotein too! Hope this continues for you xx

[kh0305Moderator]

Hi Derek
Sounds like you’ve had a truly awful start to the year 🙁 Hopefully though with the diagnosis your medical team can get you feeling better and the MM under control.

My dad was diagnosed in January 2013 with MM following many months of going to Drs with what we now know was bone pain culminating in pneumonia which got him admitted to hospital and finally the MM diagnosis. I can’t speak to the kidney failure part as somehow dads kidneys were mostly unaffected. In terms of the MM though, the sickest dad was with it was at the start pre and just after diagnosis but once the chemo kicked in he got progressively better over time and by minus 2014 (post SCT in aug 2013) was living virtually normal life and remained in ‘remission’ until Dec 2020 when the first signs of MM rearing its head again were some hip pain. Dads now on IRd ongoing until it stops working for him and blood counts have plateaued for now so hoping that continues. Current discomforts are mostly side effect related to the IRd rather than the MM itself (mild neuropathy, some GI issues again mild and chemo fog).
Hope that might help a little. Everybody’s MM journey is different but there are so many treatments available and more coming along that it’s very treatable. Good luck with your treatments and hope you are feeling better soon xx

[kh0305Moderator]

Hi Sandy123,
Dad was diagnosed with MM in Jan 2013 and started his IRd treatment a year ago. So far we have found his side effects are much better than when he was on Dvd, the main ones being mild gastro issues, the usual steroid insomnia from the dex and neuropathy. He was kept on a high level of Revlimid far too long (an oversight) which has given him memory issues. He has now had the dose related so hoping that will improve the memory loss. As Bernard mentions, we also hadn’t realised that dad would be on IRd going forward until it stops working… we were expecting a different maintenance regimen at some point. But the tablet form at home does make it easier t least. Anyway, so far we have plateaued so hoping it will continue.
Good luck with the treatment xx

[kh0305Moderator]

Hi sachbarnes,
Hope it goes well. I saw your post on papaya extract and have mentioned it to dad so let’s see if that helps. Good luck xx

[kh0305Moderator]

Hi Sachbarnes
In similar position at moment as dads neutrophils had dropped very low (they had accidentally kept him on too high a lenalidomide dose for far too long…!!!) and so he’s been off his meds (IRd) for a couple of weeks on top of the usual week off, to try and get them back up again. Another blood test tomorrow so let’s see how it is looking. I would imagine if they get too worried abut your dad’s levels they will do the same to try and get them back up? xx

[kh0305Moderator]

Hi Alanr,
Glad to hear they are trying medication first and keeping everything crossed for you. xx

[kh0305Moderator]

Hi alanr,
Sorry to read that the balloon hasn’t been working so well. I’m afraid I don’t have any experience of stents and MM but I just wanted to reply to wish you all the best with the treatment xx

[kh0305Moderator]

Hi Sandy123,
In terms of the side effects of the IRd, dad has actually had far less severe side effects on this than on DVd which made him really poorly. I guess everyone reacts differently but hopefully you will also have a good experience with IRd and minimal side effects. Thank you – so far he is still plateauing but having a couple of weeks off treatment currently due to neutrophil levels but hoping all will resume as usual after this! Good luck with the treatment xx

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