Hi beat the average
I hope you have a fabulous trip to Greece and all goes well! xx
Good to hear that no treatment is needed and no damage! That must be a relief for you both. Your consultant will want to monitor your husband as there is always a chance that it may develop into symptomatic myeloma in the future but it doesn’t always happen so keep positive and keep up with the check ups and report anything to them that doesn’t feel right/changes just to make sure all is ok. I hope he remains symptom free for many many years to come xx
Hi Jo,
My dad is 72 and currently going through his first relapse(he was diagnosed in Jan 2013). He was being treated with DVD for his relapse but this made him very sick and he did not respond to it, yet many have a great response to this combination. He is now on IRD (Ixazomib lenalidomide and dexamethasone) which he has fewer side effects with (he was previously on lenalidomide as maintenance following his first treatment). He still suffers fatigue and some sickness but this combo is much better for him and the MM is responding well. I know it is very hard to see the light when you see your loved one go from being very active to having no energy and being poorly but once your mum gets through the treatment into remission, as Tony says, life will return to much more normality. In dads 7 years of remission he lived a virtually unchanged quality of life to pre-Myeloma. If you believe that your mum isn’t improving in terms of getting used to the treatment then push back to her medical team for alternatives. I had to do this with dads DVD treatment as I think often they don’t necessarily understand just how much the treatment is hitting them. I made a big deal of how much weight dad had lost and how poorly he had been and this seemed to get some action moving in terms of looking at solutions.
I hope this helps xx
Hi Lottie,
So glad your poor veins have had a break. Dad’s down to once a month for his so hopefully you wont have to have quite so many in the near future. Hope the call with your clinical nurse went well. They’re usually very helpful and supportive. Hope everything continues to go well for you xx
Hi Brian,
I’m one of the forum volunteers and saw your post. Good to hear that you’re maintenance treatment has been going well. I’m afraid I can’t help regarding what will come next in your treatment plan as my dad was due to go on to daratamumab maintenance after his treatment but the treatment didn’t work for him so he’s now on a different combination all together. MM is such an individual disease, it may be that your path is different from others that have been on daratamumab so the best people to ask would be your medical team. Has your consultant indicated that you are likely going to have to change soon? Hope you get some information to help you with what’s coming up xx
Hi Lottie,
Great to hear that all is going well! We are often in the same boat waiting for dad’s paraproteins but the hospital usually can give them out if we phone a few days later so might be worth trying that if you want to have them before your next appointment. Dad’s paraproteins also took a little while to come down – I think it was cycle 3 before we saw firm results but great all the other markers are improving 🙂 Long may it continue xx
Hi Ken,
Hope the appointment went ok.
Just echoing what Rich and Mulberry have said, stay positive and ask as many questions of your medical team as you need to – it always helps to have a notebook handy too as there are so many new terms to get to grips with!
My dad was diagnosed in Jan 2013, and in his 7 years of remission lived a virtually normal life. He’s just going through his first relapse at the moment so we are hoping it won’t be too much longer until its all back under control and he can get back to a bit more normality, though he is still getting away on trips and getting his DIY done in the meantime. It is a very treatable disease, so now the haematology team have you on their radar, hopefully it won’t be too long until your treatments kick in. Good luck with it all and don’t hesitate to drop questions on the forum or to the infoline if you need some support xx
Hi Northumberlandces
I’m a forum volunteer on here and my dad has MM. He was also treated with Lenalidomide maintenance but he didn’t suffer any bad side effects. However, he did suffer bad side effects with Daratamumab and they were able to find him a different treatment which agreed better with him so it might be worthwhile asking the consultant team what the options are regarding treatment for the rash as I recall seeing others having suffered with a rash having some success with anti-histamines but also to understand if there are other maintenance options available of whether he needs the maintenance ongoing as not all MM sufferers do.
Sorry I can’t be of more help but hope this maybe gives you some other things to discuss with his medical team. xx
Hi Anne-Marie,
Sorry to hear your dad’s having to go back on to treatment again. I’m a forum volunteer and my dad also has MM. He is also currently going through his first relapse. He is a bit younger that your dad (72) but its such a worry isn’t it?
I’ve heard so many good things about DVd with many people tolerating it really well. MM is such an individual disease though it varies between people and unfortunately dad didn’t get on with it at all with really bad side effects and it didn’t work for him. Please don’t let this get you down though because I know of so many that responded well to it. The main thing is that if he does suffer any side effects, flag them to his consultancy team as there may well be things they can do to help reduce them and dad’s team always say to us don’t suffer in silence!
Dad’s now on IRD and has far fewer and much milder side effects and is responding well – so many treatment options available now which is really positive, so even if the DVd doesn’t suit your dad there are other things to try.
Good luck with it and I hope your dad is feeling much better soon x
Hi Bumblelion,
Sorry to hear of your husband’s diagnosis and all the ops he has had to endure over the last few years. It must feel like a lot to cop with for you.
I’m one of the forum volunteers and my experience of MM is from my dad who was diagnosed with it back in 2013.
I fully appreciate how overwhelming and scary it is to hear your loved one has cancer and, if like me, one you’ve not heard of! The good news is, as Kevin says, that it is very treatable. The initial few months will likely be a bit tough, the fatigue in particular was hard for dad to cope with, but once he was through his stem cell transplant he improved a little bit every day and by 18 months after first diagnosis was back to leading a normal life.
As Kevin says, ask as many questions of your husband’s consulting team as you need and make lots of notes as there are a lot of new terms to get to grips with and never be afraid to push back if something is worrying you. You can also speak to the infoline on 0800 980 3332 if you have any other questions you need advice on and you have all of us here on the forum to support you through with our own experiences.
I hope that the treatment plan kicks off soon and that your husband is soon feeling better.
Good luck with it all x
Hi Heathermullen
I’m one of the forum volunteers and my dad was diagnosed with MM back in 2013. He is currently going through treatment for his first relapse. He initially was on dvd which made him really poorly with horrendous bowel problems and he lost so much weight and was generally in pain and unwell. The dvd didn’t work for him so he moved on to the same treatment as you and is comparatively much better to when he was on the dvd. He has regained weight and whilst he still has some stomach problems, overall is experiencing fewer side effects/less severe. He, like you, does have a day a week when he is completely wiped out and others are up and down and he struggles with the fatigue and even short walks tire him out but he seems to be responding to the treatment which is good. It just shows how differently people can react to the various treatments that are available. It must be very tough for you to keep up with all the caring as well as just getting through your day when you are feeling so poorly but I always remember one of dads consultants when he was going through his SCT telling him to make sure he gets out of bed every morning and he still does and still tries to get out and about even when he isn’t feeling his best and I do think it helps to keep him going. I do hope that you start to feel better and can regain bit more normality. xx
Hi 12fern34,
I’ve dropped a reply on to your other post which I hope is helpful x
Hi 12fern34,
Glad to hear all went well with the SCT. I’m a volunteer on the forum and my dad was diagnosed with MM back in early 2013. Dad suffered with bone pain too after his SCT. I’m afraid I cant remember now how long it carried on for, but I don’t feel like it was too long. The fatigue was the longer lasting side effect which he struggled with and during his remission period (until late 2020) he didn’t suffer with any bone pain. It was the bone pain returning that gave us the first sign the myeloma was back.
He is currently going through treatment for his first relapse and is suffering with peripheral neuropathy this time round, though he escaped it last time. I hope the medication is helping you with this.
Hope this helps a little and that the recovery goes well xx
Hi Sparkles,
Sorry to hear that you are all having such an awful time at the moment. I’m one of the forum volunteers and my dad was diagnosed with MM back in 2013. Much like you, we watched as our dad who had always been striding out in front of us on walks and was active became shrunken, lethargic and in pain. It was very difficult to see and honestly, we weren’t sure whether or not he would get through it as he looked so ill and my only previous experience of myeloma at that point was my friend’s dad who had died after being diagnosed at a very late stage.
However, dad started his treatment and though it wasn’t plain sailing (with a further hospital admission for pneumonia and many months of him spending much time in bed and in pain) he got to a stage where he had his SCT and it probably took a year to 18 months for him to fully recover his energy levels etc.
He is now 72 and is 18 months into his first relapse. For info he has a mass on his hip and a compressed fracture in one of his lumbar vertebrae which give him pain and issues walking/sitting for long periods etc.
Unfortunately, he did not react well to the first lot of treatment (dvd) with awful side effects and he was so poorly that again we thought the worst. The treatment didn’t work for him and he switched earlier this year (after a brief period without treatment) on to a new combination which he is much better in himself on (though still gets wiped out very easily) and the blood results seem to be going in the right direction. He also is very bloated and was the first time around especially in the face and tummy as a result of the meds, but it does go away. I’m actually pleased to see him this way rather than the skeletal figure he resembled much of the second half of last year!
I know this doesn’t exactly mirror your experiences and dad is a bit younger than your mum, but I guess my main message is to not lose hope. There are so many different treatments available now and, though it takes a while to recover especially in regard to the energy levels/fatigue, we have seen dad come back once very well and be in the process of coming back from it again now after struggling for a year. I would definitely speak to your mum’s medical team and ask as many questions about her treatment plan and recovery as you need to in order to get the answers you need and don’t be afraid to push back if you are worried (this was definitely the case when dad stopped responding to treatment and I do believe it sped up his transfer to a new treatment).
Take care and good luck with the treatment xx
Hi Grady,
Unfortunately I haven’t any experience of haemolysis or rituximab but I just wanted to respond to your post to wish you all the best with the treatment. You may wish to call the info line on 0800 980 3332 with any questions you may have if you don’t manage to find anyone through the forum that can share experiences.
Good luck x
