*sorry slight typo – Should have read whilst I haven’t any experience of him being treated with lenalidomide causing hearing problems, he did suffer….
i.e. almost the opposite to yours. Hope that makes more sense now! He was on the revlimid for 7 years after the switch. He has since had two other combinations and neither have made any difference to the hearing issues so seems the sensitivity to certain pitches will remain.
x
Hi harflepd,
I’m one of the new discussion forum volunteers. My dad has MM and is currently going through treatment for his first relapse.
Whilst I haven’t any experience of him being treated with lenalidomide, he did suffer with hearing loss during his first treatment with thalidomide. He did regain his hearing (after losing around 75% on one side) when he switched to revlimid, though he has continued to have ongoing hearing issues at certain pitches. These issues with certain pitches have left him being very jumpy to noises at these pitches regardless of whether he is expecting the noise or not, being unable to attend theatre performances etc without ear plugs as he finds it too painful and even finding the television too loud and asking us to turn it down, despite the rest of us not being able to hear it. As I say, it is nowhere near what it was in terms of severity, but definitely has given him some long term issues.
I would say to speak to your doctor/consultant. Dad had some hearing tests to try and assess the extent of the problem so I’m sure they will be able to get these sorted for you too. Hopefully, you too will regain your hearing and with luck won’t have any other issues.
Hope it goes well x
Hi Claro70,
I am one of the new discussion forum volunteers and have just come across your post. I appreciate it was some time ago so I hope that your husband is doing much better now.
I wanted to share my experience due to some similarities so hopefully help you feel you’re not alone in this. My dad had his first SCT back in 2013 and went into remission until late 2020 when he relapsed. He was put on new treatment which he seemed to respond to initially, and as his first treatments in 2013 had gone so smoothly we didn’t expect it to not work, but then dad started to experience bad side effects about 3 months in, had his regimen tweaked and then it stopped working. He was without any treatment for a short time, which was worrying in itself as we knew while nothing was happening his bloods were going to be going crazy. Dad is now into his second cycle of lsatuximab and we see the consultant week after next so hoping that will have some positive effect and blood results will be improved. The positive is he’s feeling much better on the new combination even with the expected side effects, and has put on some of the weight he lost last year, so that is something!
Good luck with everything x
Hi Caroline and sachbarnes,
I hope your husband and dad are responding to their treatments and are in a better place.
I’m one of the new discussion forum volunteers and just wanted to share my experience with you.
My dad was diagnosed in Jan 2013 with MM having spent months visiting the GP with back pain which, like in so many other cases, he was given pain killers for. He was finally admitted to hospital after contracting pneumonia when on holiday in Cuba and from there a week later we had a diagnosis. We were lucky in that his treatments all went seemingly smoothly aside from the usual unpleasant side effects, but he responded well so we didn’t have a delay to the SCT thankfully. However, having entered his first relapse in late 2020 we’ve had a different experience. I guess we just assumed that as the first time round everything had worked so well it would be the same this time. Unfortunately covid meant big delays in getting relapse confirmed and treatments started, and then 4 months in dad responded very badly to the treatment so they had to stop one of the meds and he carried on with the other two to no avail. To say we were disheartened is an understatement and probably emphasised because we had such high expectations following his recovery the first time round. The delays in everything happening throughout and the lack of face to face contact vs our previous experiences haven’t helped and we have felt like we have had to chase everything through this time round to get anywhere.
Dad’s now on a new combination second cycle and goes in in a fortnight for blood test results so we are keeping fingers crossed all is looking better on this treatment. As mulberry has said, it is very much an individual journey and everybody’s experiences are different. I can totally understand why you’re feeling disheartened but there are so many treatment options available to the consultants now, so hopefully the next one will be doing the job for your husband Caroline and dad sachbarnes and that the planned Feb SCTs for them both went ahead and went well. There can be many moments along the journey where it all seems overwhelming and you feel down, but there are so many living with MM and lots of great advise and experiences on here and with the research into MM improving all of the time there are many positives to focus on. I’d just say not to be afraid to keep asking lots of questions of your consultant and nursing team to understand why things are happening and what the options are and push when you think things aren’t happening quickly enough. Good luck with your journeys through the treatments and I hope your husband and dad are feeling better soon x
Hi Victor,
I’m also a volunteer on the forum and have been experiencing the same issues recently with my dad who is currently going through treatment for his first relapse. He lost a lot of his taste and was suffering with digestive issues as a result of the treatment which meant he’s lost a lot of weight and has gone off food, which like your wife, he used to love. We also used complan to try and stem the weight loss as much as possible and we also kept a food/symptoms/activity diary to identify the times when he was eating more/less and when he felt worse so we could then identify the foods that he tolerated better vs those that made him feel poorly and so could adapt his diary accordingly. This did help a bit. As you say, the little and often is definitely better than the big meals and try adding in extra calories such as using olive or seed oils as dressings and buttering crackers/bread if your wife can tolerate these. Like Rich mentioned, dry foods and ginger can help with the nausea and peppermint tea can also be quite helpful. We found liquids such as soups and milkshakes easier to tolerate. As dad’s palate had changed, foods he previously enjoyed just didn’t taste the same any more so we found it best to keep away from his favourite meals as it was disheartening for him not to enjoy them, and look at stronger flavoured foods, foods he wouldn’t have previously eaten and those that didn’t create as much of the metallic flavour in his mouth (this was just through trial and error). Eating when distracted e.g. while watching TV can also help as there is less focus on the food itself. I hope this is useful and your wife is finding more of an appetite. Good luck with the treatments x
Hi Jiffie,
Im also a discussion volunteer and just wanted to add my reassurance. Whilst I haven’t been through it myself being a carer, I was so pleased to see how well my dad recovered from his SCT. I echo mulberry’s advice to keep sucking on as much ice/lollies as possible throughout the melphalan infusion – though my dad moaned like crazy, I ignored him and kept feeding it to him non-stop throughout and he got away without any mouth/throat issues afterwards so definitely worth it! He suffered from fatigue at differing levels for about 6 months post SCT but he then got back to normal speed/stamina on our dog walks and him and mum did a trip to the USA as well as a motorhome tour round the uk so hopefully it won’t be too long before you’re off to the highlands! Good to hear you can have a visitor, that’ll help and I’m sure the grandkids will keep you occupied over zoom. Dad managed 7 years following his SCT before he relapsed and throughout that time was back to his normal self. He also had the bone treatment to repair the damage caused by the MM and was pain free during his remission period so hoping you will have a good recovery too.
All the best for this week x
Hi sachbarnes,
I am a volunteer on the myeloma forum and just saw your post. My dad had his SCT in 2013 and I made sure he went over the top with ice consumption so luckily he suffered no ulcer or throat issues. He absolutely hated the ice so we didn’t continue it through the whole stay, especially given he wasn’t experiencing any mouth/throat issues. He did continue with cool drinks though. I can’t remember what dad’s cell counts were immediately following the SCT but it took a couple of months for them to start returning to normal levels after the drop. Hope that helps and your dad’s recovery goes smoothly.
My dad had to make the same decision and elected to have the SCT at age 63. It wasn’t the most pleasant experience but he coped well and although he did lose his hair, on the plus side when it grew back he had no more grey hairs!! He didn’t suffer any organ damage and it was very successful. He then had 7 years of remission so feels it was the right decision to make for him. However, he is now in a situation where he has to potentially make the same decision again and his initial thoughts are not to as it was a long recovery process, but he hasn’t ruled it out, so let’s see! Good luck in your treatments.
Best of luck with the move myelomahelp! Hope you settle into your new hospital quickly x
Hi Newbie123
I’m one of the new volunteers on the discussion forum and just saw your post. I truly hope that your dad is still doing ok on his latest regimen and has seen some improvement since your post.
Your post really resonated with me as I volunteered here for the same reasons that you say about at the end of your post about being the strong one and looking after everyone else but then not having anyone you can really talk to! I am very much in the same position as you and wanted to come on here to let others in same position know they aren’t alone. It is really hard as you try your best to be positive all the time and it can leave you feeling mentally exhausted. My dad was in remission for 7 years and was doing brilliantly. You would never know anything was wrong with him and even when the bone pains returned in late 2020 he managed it so well. He started on his new chemo regimen mid 2021 and we were so positive but then he reacted badly to it. He lost so much weight, he was lighter than me and looked frail and grey-skinned and was back to being wrapped in a blanket, shivering 24/7 and falling asleep throughout the day. It was such a shock to see, I think particularly because he had been doing so well. It was confirmed at the start of this year that his meds weren’t working and he started a new regimen last week so keeping fingers crossed this one does the trick and gets him back to remission again. In terms of coping mechanisms, I’ve just been trying to research the various drugs as much as possible and bombard dad’s consultant with questions so I understand the situation, treatments and options as best I can. I talk to my friends when I’m feeling down as many have had parents/relatives with cancer or illnesses so understand the stresses and can offer me an ear and hug. I also try to get out and do something when I feel overwhelmed and I find it tends to be the days after dads consultations and test results that I feel particularly down so I can at least plan to be doing something those days. Other adhoc days when it catches me I have a good cry and then try to get myself involved in something other than thinking about it like going out with the dogs, doing some exercise or seeing friends. It doesn’t always work but its often when my mind isn’t busy that the feelings catch up with me. I hope you’re doing ok and managed to find coping strategy that worked for you. Take care x
Hi Jed,
I’m a volunteer on the discussion forum and just saw your post. I hope both you and your husband are in a better place mentally and physically than at the end of January.
My dad was also 62 when he was diagnosed and experienced many of the same problems you mention in your post, including going from a niggling pain in his ribs to seemingly suddenly contracting pneumonia and being in severe pain and being admitted to hospital (I believe it was him catching pneumonia that ended up getting him a diagnosis of myeloma as early as he did). He also subsequently ended up back in hospital in huge pain despite having been deemed well enough to be discharged previously. Hopefully your husband has had his scans by now and you know the extent of the bone damage and a treatment plan. It is all a bit of a whirlwind at first with the treatments and drugs, but it does get easier and you fall into a routine. It took a good couple of months for dad’s severe pain to get under control but it does get easier with time. The zometa infusions did a fabulous job for dad and since recovery from his SCT he suffered no real bone pain during his 7 years remission. Unfortunately his bone pain returned in late 2020 but we at least knew what it was this time and used it to push his doctor to get him back into active treatment, though with covid this did take a few months! It probably took dad from diagnosis to getting back to some sort of normality around 18months in total. He was feeling much better before the 18 month point but did struggle with fatigue so took a while to be able to get back to getting up to normal walking speeds/distances and not having to nap during the day.
I hope this helps to give you some reassurance that things will improve. It is hard at first but ask as many questions as you can of his medical team and there is a lot of information on this site that I found helpful and reassuring too. Good luck with everything! x
My dad also moved hospitals without any issues. Seemed fairly straight forward without issues although he does miss his old team and being at a bigger hospital now the relationships seem a little harder to forge (possibly also due to covid causing staff shortages so more faces around?) but hopefully this will improve with time!
Hi ree2112,
I’m a volunteer on the Myeloa UK forum and just saw your post. My dad was having his appointments once a month pre-covid which changed to once every two months via phone during covid. He then went into relapse in late 2020 and it seemed to take forever to get any action and no change in the frequency of appointments. He finally started treatment mid 2021 and then was put back on to consultant appointments every 4-5 weeks, though these were often over the phone and he seemed to speak to somebody different every time. It was about 3 months at one stage before we actually got to speak to dad’s consultant face to face. I appreciate with covid going on there was probably a staff shortage and they were under pressure, but it still felt very frustrating and a lot of waiting for results that weren’t forthcoming! I’ve found I have to ask for results more often than not and, since we’ve been doing this, we are getting figures given at each appointment and copies of MRI reports etc which we weren’t getting before. I hope this helps and your appointments are now more regular and treatments are all going well.
Hi Susan,
I’m a volunteer on the Myeloma UK discussion forum and just saw your post. I myself am a carer so can’t comment on a myeloma sufferer’s experience of having Covid, but I did get Covid in March 2020 (pre-vaccination era) and unfortunately did expose my dad (at the time in remission from myeloma) to it without realising what it was. He didn’t get it at all, despite being in close proximity to me for 3 days, which was great news. I know this won’t be the case for everybody but hopefully now with vaccinations available and the next booster on the horizon to help with immunity it may give you some reassurance. Hope you continue to stay well.
