Hi Peter,
I’m one of the discussion forum volunteers and my dad was diagnosed with MM in Jan 2013. I can totally understand how your wife is feeling. It comes as such a shock and all you hear is the incurable cancer and it throws your world into turmoil. Like others have also said, I ‘coped’ by reading up as much as I could on MM and bombarding dad’s medical team with questions so I could understand what to expect as much as possible. It is a hard and uncertain time but it does get easier as you get used to the treatment cycles, hospital visit schedule and eventually the remission periods where life returns back to something resembling normality once again. Dad was in remission for 7 years following his SCT and lived a normal life during this period. We are now seeing him through his first relapse which does bring about some of the original worries and uncertainties, but we know how well he bounced back last time so we are staying positive. The forum is here to support you and your wife and there is always the infoline on 0800 980 3332 that you can ring. As Mulberry has mentioned, there is also the peer buddy programme which might be helpful to your wife to talk to someone who has gone through something similar. It is a tough time, especially so early on following diagnosis, but the research and treatments keep moving on so well in the MM field so many reasons to be positive. Hopefully as treatment progresses, you and your wife will be able to start getting back to some sort of normality too. My mum found that keeping her hobbies such as dancing and badminton going (though she changed the days so they didnt coincide with dad’s treatment days) helped give her some escape from the MM worries so hopefully your wife can find something similar to help give her a break from thinking about it too. It is hard but hopefully it will get easier soon! Take care and keep us updated – we are all thinking of you both x
Hi Sian,
Whilst it is a shame the appointment has been put back I’m pleased to hear you are getting your MRI today as that will hopefully give some clarity as to what is going on there. I hope it all goes well and the wait until May passes as quickly as it can. Take care and let us know how you get on with the MRI results x
Hi Suzi123,
Sorry to hear of your diagnosis. Im a volunteer on the forum here and my dad was diagnosed with MM back in Jan 2013. He was in a pretty bad way when diagnosed but following recovery from his SCT he had 7 years in remission where he was virtually back to normal with no real side effects other than a slight change in his hearing. He is currently undergoing treatment for his first relapse which has been a bit up and down but is starting to feel much better again. As Tony says, whilst it isnt curable, there are so many treatment options available and research is moving on all of the time so lots of reasons to keep positive. There is the infoline you can use too if you need any more support on 0800 980 3332 and the forum are here for you. Keep us posted and good luck with the treatments. I’m sure your consultancy team will take very good care of you. x
Hi Geoff,
Glad to hear the SCT is working well and hope the infections/fluid retention improve soon and you are feeling better x
I totally understand how you feel. It is like you are always just waiting for the next thing and then it will be ok, but then there’s something else and you suddenly feel like you are just spending your whole time waiting. I’m sure the team will be able to get you sorted and give you a bit more direction and hopefully it won’t be too long before some sort of normality will resume. Stay positive and try to focus on the now as much as you can. Thinking of you x
Hi neilmaurer,
I am one of the discussion forum volunteers that Myeloma UK recently introduced.
Whilst I haven’t any experience of anything like you have been through, I just wanted to reach out and see how you were doing since your post. Have you now restarted your chemo? I hope that you aren’t suffering any significant side effects if so.
Following my dad’s initial CTD treatment and SCT he was on Lenalidomide maintenance and luckily had no significant side effects though when he started on DVD for his first relapse he suffered a lot with digestive system issues and losing a lot of weight. He is now on a new combination which suits his body much better and he is back out in the garden laying his patio!
His consultant has told him to make sure he doesn’t suffer and to speak up so they can do what they can to help him manage any possible side effects so I’d say if you are experiencing any particularly bad side effects speak with your consultant team and see if there is anything they can offer to help with them. I hope that you are feeling ok though and this hasn’t disrupted your progress following your whipples procedure x
Hi sachbarnes,
Great to hear that dad is recovering ok following the SCT and infections. It must be nice to have him back home again.
I would echo Caroline’s message in terms of speaking to your dad’s consultant as I think it can be between 3-6 months post SCT so best to check with them in terms of scheduling. Hope your dad continues to improve each day x
Hi shropshiremum,
I’m one of the discussion forum volunteers and saw your post. My dad was diagnosed with MM in 2013. Luckily he somehow avoided any kidney issues so I cant comment on how his kidneys were affected during illnesses. However, there were a few times though when he was down with particularly persistent bugs that his blood counts were definitely affected. I don’t remember the exact figures but the reason I remember is that his consultant took him off or tweaked his treatments during these periods to give his blood counts a chance to recover, so I would guess that because you have been unfortunate enough to have a bit of a run of bugs they’ll be having some impact based on dad’s experiences. Probably worth just mentioning the illnesses at your next consultation, if you haven’t already, and getting some feedback from your medical team as to best course of action to get you back on track. Hope you are feeling better soon bless you – you must have had your share by now! Take care of yourself x
Hi Beat the Average!
Another of the forum volunteers here 🙂
Lovely to hear you’re looking to getting back out there and ticking those countries off your bucket list.
Funnily enough it was a long haul flight I believe that saved my dad’s life. He had been complaining of pains for almost a year and it had been put down to his manual labour job and he was given painkillers for it then flew off to Cuba with my mum and contracted what ultimately became pneumonia from the flight. This was back in 2013. He was admitted into hospital there and then transferred back to the UK where his MM was diagnosed three days later. Had he not flown, I’m not sure it would have been picked up early enough.
Anyway, back to your concerns. At the moment, my dad is going through his second treatment for his first relapse so isn’t in a position to travel anyway. However, following his first treatment, he flew out to visit me in the USA (where I had moved following Dad’s successful SCT) around 18 months after his SCT. This was of course before covid times, but he still was very careful all the same given the pneumonia incident! I’m in good health myself and think pretty much every long haul flight I’ve ever taken I’ve ended up coming down with a cold afterwards so there was always a risk of illness being cooped up in a metal box for so long even pre-covid and it is about weighing up the odds, but I can certainly understand that you want to get back out there and enjoy life!
For dad, insurance was tricky but not impossible and he got sorted and, like you mentioned in your post, he also went with the view that the medical care in America is good should anything happen. He spoke with his consultant team before he booked anything and they helped him with medication etc for when he was out there and gave him some advice plus a letter to take with him in case of any issues and needing treatment. O n top of that he was extremely careful in terms of wiping everything down and using hand sanitiser. On the flip side, you would like to think that with covid, the airlines will be taking more care to keep everything cleaner than previously??!
He had a fabulous couple of weeks out in the states with us where we did New York City, Chicago (another internal flight following the same precautions) and the Catskills and he had no issues whatsoever.
I think that if you really want to get out there, it just comes down to talking with your medical team and following their advice and if you take the decision to fly, being super careful and hopefully you can get all of those bucket list items ticked off! x
Hi Satellite,
Hope you are managing to get more sleep and that you are feeling better. Not too much longer until we are into April and then hopefully you will have some answers. We are all thinking of you x
Hi Caroline,
One of the forum volunteers here. I’ve just contacted our moderators to see if it is possible to move the post across to the treatments section. I’ll let you know! I’m sure people will see it here in the meantime though.
I’m so sorry to hear you’re feeling down and worried right now. I can understand that. When my dad was diagnosed it was all so overwhelming and scary and you just don’t know what to expect and then when his treatment stopped working during his first relapse all those feelings resurfaced. I haven’t any experience of DT Pace or the tandem transplant to share with you unfortunately, but I’m sure that if his consultancy team are looking at it then they will be looking at best options for his situation. Hopefully once you have run through the information with them it will help settle some of the worries. In the meantime I always found it helpful to research the treatments as it helped me feel prepared and I’m sure there will be others on here that can offer some direct experience stories to you which will hopefully help. Try to stay as positive as you can, easier said than done I know, and we are all here to support you as much as we can. Keep us updated with how everything’s going x
Hi Tommac,
Another of the discussion forum volunteers here. My dad was diagnosed with MM back in early 2013 when he was in quite a bad way and is currently undergoing treatment for his first relapse. He was living a normal life from 2014 to end of 2020 when he relapsed, you would never know he had been so poorly. It’s lovely to hear your positivity and there are so many treatments available for MM now and it sounds like they’ve been quick off the mark getting you started which is brilliant. Hope the consultation yesterday went well and you have a plan in place. We are all here to support you if you need us! Good luck with the treatments x
Hi Forest1,
I am one of the new forum volunteers and came across your post. I appreciate it was quite some time ago but thought that even if it isn’t applicable for your situation any ore, it may be helpful for others in similar situation as I’m sure many of us have been there.
My dad has MM and is currently going through his first relapse. He responded very badly to the first drug combo they put him on at relapse and, probably due to covid, it was very slow getting him on it in the first place so he was in pain for a long time and then had the bad side effects of the medication on top. After over a year of being in pain and having lost over a stone in weight not being able to keep his food down and having bad cramps and no appetite, he had quite understandably had enough. We spoke to his consultant who gave him some advice on his pain meds to try different dosages at different frequencies which helped a little and we tried to organise small family events to try and take his mind off the pain and made sure he had a rest and some pain meds beforehand so he could enjoy it as much as possible. It seemed to help. It is hard as you seem to be waiting all of the time – for treatment to start, the next set of results, meaningful improvements etc. and it is exhausting but just try to take one day at a time, keep his spirits lifted as much as possible and as the previous response said, just let him know you are there for him. I hope by now things have improved for you both and your dad’s MM is under control. Sending you all the best x
Hi Satellite,
Another forum volunteer here! My dad has myeloma and I can understand why you have come across myeloma as a possible cause of the issues as my dad is currently going through his first relapse and the first symptom that the MM was kicking off again was a pain in his hip (although the first time round it was rib pain).
Hopefully the results from the 21/4 will give you some definitive answers as to what is causing the pain and keeping fingers crossed it isn’t anything serious, though as Tony has said, there are many people living near normal lives with MM and certainly before the relapse, dad had 7 very normal years in remission.
Have you tried meditation before bed to try and help switch off so you can sleep? I know it is hard to turn off the mind but it may help. The headspace app that Rich mentioned is good or the aura apple app offers a free trial so may be worth a try to get through the next few weeks.
Try not to worry (easier said than done, I know!) and keep us posted on how you’re getting on x
Hi harflepd,
Wow that is a long lead time 🙁 I guess not helped by covid delays. I hope that you manage to get a private appointment soon and they can get to the bottom of what is going on for you. It is funny how your symptoms are pretty much the exact opposite. I guess MM continues to be a unique experience for each person in many ways! Please keep me updated how you get on. I hope that you are able to get your hearing back like dad did. Thanks for your good wishes and wishing you all the best too x
