Hi Teri1
Hope your brother is doing ok following his SCT. I’m one of the forum volunteers and my dad had his SCT back in 2013. It is a tough treatment to go through and the stay post SCT can be lonely. I’m not sure how far through the process your brother is, but if he has already had the treatment he is probably feeling pretty wiped out and he may have changes to his appetite due to side effects such as mucositis, changes in taste buds etc. Hopefully he has access to a fridge/freezer so try taking in some home cooked favourites or if he has soreness form the chemo treatment some yoghurts/ice creams etc that are cool and easy to swallow. You may find he hasn’t much of an appetite but try and encourage him to eat and keep hydrated and it may be that foods he previously wasn’t so keen on become more appealing and possibly stronger flavours may be needed depending on how his taste buds are.
Also lots of activities/games to keep him occupied when he feels up to it and calls/video calls when you’re not there so he doesn’t feel alone. Other than that just try and stay as positive as possible. It takes time but hopefully he will start to feel a little better each day. The fatigue was the hardest part for my dad to deal with but one piece of advice from his consultant was try and get up every day no matter how tough it may feel which is what he did, even if he had to go back to bed for a nap later. It definitely gave him more of a sense of purpose to move forward. He had 7 years in remission following his SCT and a relatively normal life which made those tough weeks worth it. I hope your brother is feeling better soon xx
Hi Beetlejuice,
Great to read your story and how positive you have remained throughout. I can understand your thoughts. It is one of those questions I guess we will never know the answer to but you have to do whatever is right for you. I hope that you continue to enjoy many many more positive and happy years of remission with your family xx
Hi Jane,
Sorry to hear that both your husband and his colleague are suffering with MM. As Mulberry says, we really don’t know enough about MM and its causes to know whether it is coincidence but like all cancers, there must be something that triggers it yet not everyone seems to follow the same path. My dad (diagnosed with MM in 2013) worked with ink and paper his whole life, but then so did his dad and he didn’t develop MM but a different cancer… if only we knew more. I hope treatment is going/has gone well for both of them and hopefully with all the research going on we will soon know more about this disease. Take care xx
Hi Sparks,
Great to read that the SCT has gone ok and you are keeping positive and not having too many side effects. Hope that the side effects start to ease off soon and its not too long before your neutrophils are back where they need to be.
Hopefully you will be back home soon xx
Hi Lottie,
Sorry to hear about the family illness – hope everyone is feeling better now.
Will be good to have a break from the travelling and needles bless you and good to hear the steroid dosage has come down as the effects they have on emotions and sleep are not helpful!
Good luck with the dental check up and hopefully not too long a wait for your SCT.
Thanks so much for the best wishes for dad and here’s hoping everything continues to go well for you xx
Hi Bumblelion,
Sorry to hear you’ve been left in this confusing way. The annual tests do seem a little infrequent so as Steve says I’d definitely be asking why they are so infrequent. In terms of the leg pain, it is worth getting this checked out. One of dad’s first symptoms was pain in his ribs and we knew the myeloma was returning when he developed hip/lower back pain 7 years after his SCT which was then confirmed by tests and his consultant so worth being vigilant of the associated issues as described by Mulberry. I hope your husband remains in smouldering stage for a long while to come but in the meantime definitely get any concerns checked out for peace of mind xx
Hi Lottie,
Fab news regarding the paraprotein levels!! Tony has given a very comprehensive overview of the SCT process. It was very similar for my dad and he stayed in for two weeks afterwards. Dad was lucky to avoid getting the mucositis as I force fed him ice cubes non stop throughout the melphelan infusion, despite his complaining but it definitely helped. He lost his hair but on the plus side when it grew back it was without greys!! The eating can be a challenge with nausea/lack of appetite/change in taste but do your best to find something you can eat. It took dad a long while to recover from mostly the lethargy following the SCT but he got 7 years of remission from it so it was definitely worth doing. As Tony says, there will be tough days/times/side effects but remember it is only temporary and the end result will be worth it and we are all here for you! xx
Hi Dave,
Ah the joys of the steroids! They’re a nightmare aren’t they? The not sleeping is horrendous bless you.
Sorry to hear the increased pain medication isn’t helping. I completely agree with Jane that you should definitely keep pushing it until you get some relief. The message to us from the medical team has always been don’t put up with side effects/try and soldier on so make a fuss until you get something that helps.
Off to see dad this afternoon so will pass on your regards.
Have a good weekend and hopefully a good lie in! xx
Hi Linda,
Thanks for the update.
Sorry to hear you’ve started suffering with the tinging. Unfortunately it is quite a common side effect but good to hear that it has subsided a bit. Definitely agree with your team to report anything – the message to us was much the same with dad’s treatments – don’t feel that you have to put up with side effects. They can’t always do something but if there is something they can do to treat or improve the side effects they will. I hope when you go back on to the thalidomide it is better for you. Don’t worry too much about stopping/changing levels of different meds. We have had that a lot over the past 9 years for one reason or another and dad’s done so well. As it is such an individual disease there is an amount of having to try different approaches with each patient from what I have experienced.
We have had random results like yours in the past too where there’s a sudden quite large change then it goes back to more expected level. Our consultant says it happens and that’s why they monitor the bloods regularly as they are looking for a pattern.
I’m surprised you’ve not had any paraprotein results yet. Sometimes with dad’s they have them but don’t always report them to us. Have they been giving you light chain results? We use those as well as a marker of how dad is doing. Hopefully they will get you some results soon to put your mind at ease xx
Hi Dave,
How did the first chemo go? Hope you managed with all of the tablets!
Has the 10ml morphine helped at all with the pain?
Hope you’ve managed ok in this heat the past few days and aren’t feeling too bad. Dad sends greetings back and wishes you all the best with the treatment. We are all keeping fingers crossed you are feeling better soon xx
Hi Peter,
Sorry to hear of the set back but I’m so pleased to see you are maintaining your positivity and keeping fit and well otherwise 🙂 I’m sure it won’t be long until you kick it into touch again and get your stem cells back in a much better state!
Lilib- Sorry to hear that covid has thrown a spanner in the works for your husband. So frustrating when as you say, you’ve been so careful. I hope a new slot is sorted for you much faster than the airlines sort out their flights!
Good luck to you both and keep us posted xx
Hi Dave,
Another northerner here! My dad had a similar experience to you. He had been back and forth to his GP with pains for months, constantly being prescribed painkillers for pulled muscles due to his somewhat physical job. It all came to a head when him and mum jetted of to Cuba for their first ever long haul holiday and he ended up in hospital out there with pneumonia and one of the staff uttered the C word…. He finally managed to get discharged and fly home and went straight into hospital up north where, after 3 days of tests, they diagnosed MM. That was back in 2013. He had chemo (also no hair loss) and SCT (hair loss but it grew back with no grey!) and then had period of remission for 7 years and is currently back on treatment for his first relapse.
In his remission period he lived a virtually normal life, no more back, hip, rib pain and it was the return of the pain, albeit much milder, that alerted us initially to the relapse. The pain you describe sounds very like dad’s.
He also tried different pain relief combinations and for him morphine and tramadol worked best, but if no success keep flagging with your medical team until they get a combination that helps the most.
Though dad is still undergoing treatment, his bloods are in a much better position and his mobility much improved – no more hobbling around! The fatigue during the treatment has been his biggest issue since switching (the first treatment he was on for his relapse Dvd made him very sick and didn’t work) and it is nice to see him looking much brighter and him and mum are actually away on hols not far from you as we speak.
Hopefully with the chemo starting you will be feeling much better soon and it is good to hear you’re keeping that sense of humour going – it will definitely help! xx
Hi Jo,
Great to hear your mum’s paraprotein levels are stable and she is in remission but a shame she is still having problems with her liver. I share your frustrations with some of the information that is given and I personally have found it has been much worse since covid and complete agree that a project manager would be extremely useful as I’ve also found that one person doesn’t seem to speak to another and have had dad sent home without his meds or bloods being taken even when he has questioned it! Definitely keep pushing!! I hope she is back home soon xx
Really good news Lottie! As you say, its easier to cope with the bloods when you know a bit of a break is coming up!! Also hoping they don’t drop again but it seems like everything is going in the right direction which is fabulous xx
Hi Barrettdg,
My dad suffered quite a lot of weight loss when on Dvd treatment (over a stone) but this was due to sickness and diarrhoea side effects which you don’t mention having. I’d definitely ask your nurse about it. Dad always has his weight checked at his consultant appointments so they had a record of exactly how much he had lost and helped with dietary supplementation to help regain the weight xx
