My husband started Carfilzomib and dexamethazone as a 4th line treatment. He had a really rough time. In an out of hospital with high temperatures, breathlessness, extreme fatigue …and the rest! After 2 /3 cycles his paraprotein levels were way down. His consultant asked him to persevere and things got better. Now after 3 years his levels are still below 3 and he is doing great. We live life to the full!
My husband has been on Carfilzomib for over two years. He started his Myeloma journey ovet 6 years ago. After limited success on Thalidomide and Lenalidamide and a stem cell transplant that gave him 18 months remission, he started Carfilzomib. His paraproteins dropped immediately and his consultant was delighted. However,he initially had some side effects…Sickness, nausea, breathlessness, fatigue and raised temperatures. He was in and out of hospital with infections. Although it was quite a difficult time, his consultant asked him to persevere as his Myeloma was now well down. He did and after about 4/5 months he started a much lower maintenance dose. He is doing so well.Side effects are minimal..he feels slightly off the day after his chemo. Life is good and his Myeloma paraproteins readings are continually below 3. Not sure if this is helpful but it’s good to share positive outcomes. I hope things work out well you. Take care
Hi Morwenna.My husband was diagnosed with MM over 5 years ago.His paraproteins were around 35. After 6 months of treatment his paraproteins reduced to 15.They still went ahead with SCT.This reduced his paraproteins to 13/14. We were worried that his paraproteins didn’t go into single figures or zero as we thought they would. He was told that this was his level and hopefully it would remain stable. They remained stable for almost 2 years and he felt great. They then started to climb so he was put on another treatment, Carfilzomib. His paraproteins reduced significantly after one treatment and are now below 3 which they say is undetectable. He has remained stable for over 2 years and counting.Again he feels great. Everybody’s journey is different and folk respond differently to different treatments. We got so hung up on paraproteins levels! Hope all goes well for you
Hi Pottersgirl. My husband was diagnosed in 2018 aged 64 and after various treatments and a SCT he started Carfilzomib. At first the side effects were pretty bad , Fatigue, breathlessness, high temperatures and for the first 3 months he had several visits to hospital. His consultant was keen to keep him on the treatment as his paraproteins came down very quickly and this was the first treatment that seemed to work. After 6 months he went onto the maintenance programme. Now after 20 months his Myeloma is described as inactive. He still gets a bit tired and now and again feels a bit “off” just after his chemo. Overall he is great! We are just back from a cruise and off to Wimbledon next week. He plays live music in a number of clubs. Like you he is 3 weeks on and one week rest. His consultant agreed a few extra rest weeks so we could go on holiday. Its working really well for himm. Long may it continue! I hope it all works out for you too.
Hi Davidw
I can remember well the shock of the initial diagnosis! My husband was diagnosed in March 2018. Our whole life changed that day! Or so I thought. After treatment and a stem cell transplant we led a relatively normal life…OK he’s only recently back on treatment after over 3 years in remission but already his treatment is working and his Myeloma is undetectable. Lots of great developments and positive outcomes for folk. My advice is remember your partner is also on a journey. I also have a cancer diagnosis. I find it so much more difficult coping with my husband’s Myeloma than my own diagnosis. You are not alone on your journey and thete are still many happy days ahead. Take care
Hi Hendaz68
I can completely identify with your wife. When my husband was diagnosed in 2018 I read everything to do with Myeloma. My world, was completely focused on him and Myeloma. I would say for at least the first 6 months we both tried to be so positive but kept thinking of the worst scenario. Now over 4 years later we try not to let Myeloma dictate what we do. We look at all the things we can do.
When I look back,so many things went wrong but we just kept going…we are both easy going, positive folk and knew we would get there in the end.
My husband had a SCT after his initial treatment and was about 3 years in remission. He is back on treatment now and is doing really well. He says he now knows the meaning of good and bad days. I’ll not lie there are still days when I’m a bit teary but overall we are doing OK. Like maidmarion we are out and about…walks, lunches, grandkids. My husband has joined a few online music clubs as he plays guitar and I try a bit of watercolour painting. Life is good.
Everybody’s Myeloma journey is different and that also applies to the partners that support them. I hope your wife’s anxiety will settle and she will look at all the positives around you both. Family, friend and others that offer support and advice. Also the great medical support offered…lots of new developments on the way. I hope all goes well on your future treatments. There are still many happy days ahead!
Many thanks for you response. Very helpful indeed. My husband and I really appreciate it when folk share their knowkedge and experiences. It’s so good to know others on the Myeloma journey are doing well on this treatment. Hopefully my husband will continue to improve.
Hi. Looking for information. My husband was diagnosed in 2018. After initial chemotherapy and a SCT his Myeloma was stable for almost 3 years. They did not collect enough cells for a second SCT. He is now on Carfilzomib and Dexamethasone and has just started cycle 3. The paraproteins have dropped from over 30 to 7 which is great. He’s generally feeling good although after every treatment he has 2 days of feeling pretty yuk! His consultant told him he will be on this treatment for some time with a possible review after 10 cycles. We thought treatment would be like most cancer treatments with 4-6months of chemo. I noted Kevin had 17 cycles. Are you completely off drugs now? What was different from your original treatment and maintenance treatment. Thanks so much.
Hi there. There are always lots of questions around treatment for Myeloma. From this Forum I’ve taken the message that the Myeloma journey is very much a personal one. Everyone responds differently to treatment. My husband was diagnosed with Myeloma in 2018. After intial chemotherapy treatment he had a SCT. Like your husband he had almost 3 years of remission. When I say remission, his paraproteins levels were exactly the same as before the transplant but were very stable. Unfortunately they didn’t collect enough cells for a second SCT. He is now going through chemotherapy again. Carfilzomib and dexamethasone. It’s early days but the results so far are excellent. His paraproteins levels are at the lowest they have ever been. His consultant is delighted, as are we! Hopefully that we’ll continue. As yet we don’t know what maintenance programme he will be on. He did have lenalidomid at the early stages of his chemotherapy and it didn’t really do much for him then. Anyway we are in a positive place at the moment. Husband is feeling good and once the Covid numbers reduce he will get out more. For him the drugs appear to be working better then the SCT. Hope things work out well for your husband.
Hi jbal. My husband had his SCT 3 years ago. His paraproteins levels from both M1 and M2 bands combined before the transplant were 15 (6 and 9) After the SCT It was still the same. He was devastated. However the levels remained stable for over 2 years and consultant said this was his remission. There was no maintenance medication on offer at this time. His levels are only now starting to increase very slowly. So far he has had almost 3 years feeling pretty good. Hope that’s belpful
