Thank you 🙏🏼 x
Hi
Thank you so much. Thats really helpful. Dad’s now triple refractory and end of life and his consultant has applied for compassionate use as last effort. We are waiting to hear back as to whether this is successful. Dads had a lot of issues on his treatments over the years regarding side effects – he seems to win the lottery and get pretty much every single side effect listed, shame it’s not so successful with the actual lottery! – so am bit worried about the corneal side effects and good to hear there are some with minimal complications. At the moment he’s not on any treatment so has a lot of pain so hoping if this does go ahead we can get him started sooner rather than later abs hopefully buy him some more time and of better quality than he’s had the past couple of years. Will just have to wait and see.
Appreciate your reply.
Thank you xx
Hi ree2112,
Your experience sounds very like my dad’s. He would get up to see my mum off to work then head back to bed for a good few hours. His fatigue gradually improved but I’d say it was a year after SCT when he was fully back to his usual self energy level wise in terms of not napping and being up to a decent speed moving around.
Hope the recovery continues to go well x
Hi Sandy123,
I’m afraid I don’t have any direct experience on this but my understanding is that it isn’t advised as can accelerate thinning and scalp irritation. Sorry I can’t be of more help!
Whatever you decide, I am sure you will look fabulous and I hope you have a great time at the weddings x
Hi hally24,
My dad had his SCT back in 2013 and the main side effects he experienced were some taste changes, gastro upsets and fatigue. The fatigue was the one that took the longest to get over and though he made sure to get up every morning, he did often have to go back to bed for naps and it took many months for him to walk at a normal speed etc. However, we have no regrets about going through the experience as he had 7 years in remission post SCT which after the first year were pretty close to normal living and even with his hair loss, it grew back with no greys so he was pretty pleased!! Make sure to follow the advice about sucking ice/lollies non stop during the melphalan treatment to avoid the sore mouth.throat issues. I fed dad them non stop despite his complaining and he suffered no issues at all which as great.
Hope everything goes well xx
Hi Kevin,
Though I live in the south my dad is located up north so I’m not able to offer any advice regarding the best southern clinics. However, I think that you are approaching your move in a great way as when my parents moved, dad was also in remission so we hadn’t really thought about it but when he relapsed and had to go to a different hospital we noticed a dramatic difference and really missed the high standard of care at the previous location. I don’t know if being post covid had something to do with it or the larger size of the hospital vs the previous or just generally not as good but I hope you have the opposite and find an amazing centre and wish you all the best for the move xx
Hi Bugsby
Sorry to read about your recent diagnosis. I hope the treatment goes well for you. I’m afraid I don’t have any experience of osteosclerotic myeloma but just wanted to mention that you can always contact the info line on 0800 9803332 for more support or use the ask the nurse function if you are unable to find any others with it as it is a more rare form of MM. Wishing you all the best x
Hi Dawn,
I’m sorry to read about your dad. It must be very disheartening for you all to not get the results you’re hoping for with each treatment. Unfortunately there’s not really much advice I can offer as Dad responded well to his first line treatment (ctd) plus SCT, with a remission period of 7 years, but since his relapse in Dec 2020 we’ve been unsuccessfully going through the treatments – Dvd, Ird and about to start 4th line Isa-Pd. If this one doesn’t work we will be in a similar position. Our consultant has been reasonably helpful when pushed but I wouldn’t say overly proactive its more when we start to ask particular questions about trials, courses of treatment, side effects etc but it does feel like hard work at times.
Sorry not to be able to help more and i will keep everything crossed this next treatment works for your dad x
Hi pottersgirl,
Im afraid I don’t have any experience of Carfilzomib but I can definitely say that dad has experienced fatigue throughout his myeloma journey (since 2013 on various different treatments). As Katie has mentioned in her reply, it does unfortunately seem to be a problem with myeloma. Dad has only seemed to really not have fatigue when he’s been in remission periods and on maintenance, but all of his treatments have given him issues with fatigue to varying degrees. He is currently in between treatments, starting 4th line treatment next week, and has got some energy and thinking more clearly which is nice so we will see what effects the new treatment bring…. One thing dad’s consultant has always said to us is not to be afraid to report any side effects so they can try and remedy them where possible, so please do keep highlighting it to your medical team to see what they can do to try and improve it. Hope the fatigue improves for you x
Hi Squirrel,
Glad they checked you out and you have the medication. Hoping the side effects will improve for you. Dad has the jaw pain too which we think may be from the zometa. He is moving on to his 4th round treatment next week with Isa-Pd so Im hoping he doesn’t suffer with too many side effects but you just never know, do you? Unfortunately the steroids are always problematic! Hope you are feeling bit better x
Hi Nightowl,
So sorry to read of the tough time you are having. It is very hard being a carer and the emotions do take a huge toll along with the physical exhaustion of having to keep so many balls in the air at any one time.
I hope that the consult on 24th goes well and can at least give you some idea of treatment options for your mum going forward. My dad was diagnosed with MM in Jan 2013 and it came as a huge shock as he’d always been fit and healthy and suddenly he looked like a skeleton. Like you, there were many sleepless nights trying to figure out what to do and thinking about various outcomes and situations and whilst I didn’t have the breadth of issues you are having to deal with, there were other things going on that just added to the mix plus travelling 10+ hours every week to visit my dad in hospital and support my mum and hold down a day job. I look back and wonder how I managed it! But we do just somehow seem to carry on but you must remember to find some time to take care of yourself as well, which is hard.
I second mulberry’s suggestion to talk to someone either through counselling or someone in a similar situation through the peer buddy scheme. I think it would have been really helpful for me to have someone to talk to when we went through all of this as you do feel rather alone and are doing your best to stay strong for your parents.
Dad responded well to his treatment and although there were some side effects, it was definitely worth it. I asked everything I could of dad’s medical team and took notebooks to all of the appointments to gather as much information as I could. I found, for me, that this was helpful as I had notes of everything discussed to refer back to and could jot down questions or concerns as they came to me so I did forget to bring them up in the consults. We had a lot of support from his team, particularly the two nurses, and I hope that you have a similar experience with your mum’s team and don’t be afraid to contact them.
Wishing you and your family all the best x
Hi Paul,
Sorry to read about the short relapses your wife is experiencing. It must be very disheartening and worrying for you all. I hope that the latest treatment brings a much longer relapse period for her. If not, try not to lose hope – there are so many combinations and treatments available and moving on all of the time. We were lucky the first time round that dad responded well but the 2nd and 3rd line treatments have been much like your experience and it is very frustrating as just as you feel like you are moving forward it takes two steps back again. As Mulberry says, it may be worth looking for a second opinion on treatment options at a different hospital as they may suggest a different combination that might be better suite to your wife. Keeping everything crossed that this one works for her xx
Hi Don,
My dad had to have a tooth removed during treatment. He spoke with his medical team and they advised what he needed to do with regards to his medications. I can’t remember exactly what he had to stop taking etc but they will be able to help.
Regarding the zometa and denosumabe, I believe both are effective in MM but the zometa is cheaper so more widely used (to my knowledge) xx
Hi loopykat,
Sorry to read of your diagnosis. It is hard to process but I’m pleased to see that there is no bone damage and the kappa numbers are still pretty low. I hope that it stays smouldering for many many years for you. Just stay aware of any changes and don’t be afraid to flag them with your medical team. When my dad’s MM relapsed it was him feeling bone pain returning rather than bloods (as his frequency of tests had reduced) that alerted us and he flagged it and they confirmed it with the bloods.
Wishing you all the best xx
Hi Flora22
So sorry to read your post about losing your dad. So hard for you all, my heart goes out to you. The pandemic definitely made things more difficult and so sad that he was alone.
I don’t know what happened with your dad, but as mulberry suggests, the PAL team may be able to help?
My friends dad was diagnosed late with his MM following a fracture that did not heal after many months which triggered further investigations and he sadly passed away quite quickly as a result of the late diagnosis so it may be the same for your dad or a combination of that and other conditions.
I hope you are able to find out more information to get some closure. Sending much love to you xx
