Hi Otto,
I’m one of the forum volunteers and my dad was diagnosed with MM back in 2013.
I’m afraid I can’t offer any insight into whether or not you should come off the maintenance treatment or not but would definitely discuss the pros and cons with your medical team.
In terms of NHS, dad has always been treated on the NHS and after his SCT he was on lenalidomide as maintenance which he continued taking until his relapse in 2020. He is currently undergoing treatment for the relapse, started with DVd (daratamumab, velcade, dexa) which didn’t work for him and is now on ixazomib, lenalidomide and dexamethasone. I don’t know what maintenance he will be on following this.
Hope this is helpful. x
Hi Sandra,
To add a photo, if you hover over your username in the top right corner it should bring up a menu with edit profile option for you to click on. In the profile tab of that there is an option to edit profile photo so if you wish you can upload a photo but many choose not to, so don’t worry if you don’t want to!
My dad is now 72 and was 62 when first diagnosed. It may be a little soon from the next consult based on what we were told to see any ‘real’ results but it will hopefully give you an indication.
The first time round all that was spoken about with us as markers was paraproteins and it was only when dad relapsed we started hearing the term light chains, so you are not alone. It is essentially another marker to monitor how MM is progressing. There is a really useful article on the News & Stories blog > ‘ask the nurse’ section of the site that explains paraproteins and light chains much better than I probably can:
“Antibodies are made up of two parts, heavy chains and light chains. When making antibodies, plasma cells normally make more light chains than required. These lights chains enter the blood as free light chains.
The light chains in antibodies come in two types – kappa (κ) and lambda (λ).
In people without myeloma, light chains are present in the blood, but the balance between kappa and lambda types (called the kappa to lambda ratio or free light chain ratio) will be fairly even.
In myeloma, the myeloma cells produce either kappa or lambda light chains only, so the level of that type will be higher, and the kappa to lambda ratio will change.
An abnormal ratio can indicate active myeloma and is considered to be as important as the kappa and lambda levels for diagnosing and monitoring myeloma.
Therefore, as myeloma cells produce the paraprotein they also produce excess amounts of one type of light chain.”
Full blog article: https://www.myeloma.org.uk/news/ask-the-nurse-paraproteins-and-free-light-chains/
Hope this helps x
No problem. Hope it all goes smoothly for you x
No problem. Glad it helped reassure you and hopefully you’ll be able to enjoy all your foods again soon xx
Hi Nick,
One of the forum volunteers here. My experience of MM is through my dad who was diagnosed back in 2013 and is currently undergoing treatment for his first relapse.
Sorry to hear that you didn’t stay asymptomatic but pleased to hear you have treatment lined up soon.
My dad was on D-vd and he had quite bad digestive side effects with vomiting and diarrhoea and lost quite a lot of weight. Hopefully you wont suffer the same side effects or not as badly as everyone seems to respond differently to the meds as I know dads tolerated other treatments that others have not. All I’d say is keep your team informed of any side effects that you may encounter as they may be ale to help alleviate symptoms so that you feel as well as possible throughout the treatment.
Good luck with the treatment x
Hi ren,
Sorry to hear you have had such a rubbish 12 months. Im another of the volunteers on the forum and my dad was diagnosed with myeloma back in 2013. He had a very successful treatment the first time round but when he went into relapse in 2020 it has been a bit more of a struggle. He is now on the same combination as you (fourth cycle) after the previous one failed to work and, though it is early days, his last consultation showed positive reductions in his light chains and paraproteins and he has another consult in early June where we are hoping the pattern will continue. Unfortunately it is difficult to predict as MM seems to be such an individual disease and everybody responds differently to the meds.
I hope that you also have success with this combination as we were worried after dad didn’t respond as he should to his previous treatment which has been successful for so many so can understand your concerns. How long have you been on this combination? Dads consultant said it would be from third cycle when ‘real’ impact of the meds would be seen (he had also had a period of no drugs following the cessation of his dvd treatment). Hope you have some positive results soon x
Hi Lottie,
You’re very welcome. Great to hear that the medical team have been supportive and helpful. We had a fabulous experience with our medical team when dad got diagnosed and found it very reassuring. Don’t hesitate to reach out with any more questions on here or the infoline. Keep positive and hope the consultant appointment goes well xx
Thanks for the update mbb. Good to hear that you have a good care package in place for your mum’s return home and pleased you pushed for her to be kept in until everything is more under control. Hopefully once she is back home she will feel a bit happier and the support you have found at home and on here will help to alleviate some of her concerns. If she does have any concerns or questions when she gets back do pass on the infoline number to her in case she finds it of use. Hope her homecoming goes well xx
Hi,
My dad is on the same combination and is experiencing changes to his taste too – finding foods bland, metallic and some with a minty type flavour to them.
He also had changes to his taste buds when he went through his first round of treatment back in 2013 but his taste did return with no permanent effects so hopeful this will be the same case this time around xx
Hi mbb,
Sorry to hear that your family are going through a tough time right now – it is difficult when our loved ones are far away. It is understandable that you mum has heard and focussed upon the cancer part, it is definitely scary to hear the C word but the good news is that myeloma, whilst can’t be cured, as you have likely read it can be managed very well.
I’m not sure how old your mum is, but from your age I’m guessing 70s/80s which will probably mean she won’t be offered a stem cell transplant and more likely to be managed with drug combination. There are many new treatments coming along all the time which is great news. My dad was treated initially back in 2013 (so it is unlikely your mum will get the same combination as treatments have moved on so much) but we were lucky in that dad didn’t suffer many side effects. He was much more vulnerable to infection so did end up in hospital a few times with pneumonia until things were under control and he suffered with fatigue, getting exhausted very easily. I would say it was about a year after his stem cell transplant before he started returning to normal levels of activity, albeit at a slower pace with more rest afterwards. The good news is that one he was in remission, he pretty much returned to a normal life.
The next year or so is probably going to be quite tough for you all but hopefully things will start to normalise after that. Obviously this is just from my experience with my dad and everyone’s experience with myeloma is slightly different – it is a very individual disease. I would advise asking as many questions of your mum’s medical team as possible and taking along a notebook for answers and to keep track of test results etc as it is a bit overwhelming initially with all of the new information.
I hope this is helpful for you. The infoline is also a great source of information- 0800 980 3332 and don’t hesitate to come back to us on the forum.
Good luck with everything xx
Hi Lottie,
As mulberry says, most of the ‘older’ treatments were a 3 drug combo, so though I haven’t had experience of my dad taking the same combination as you are starting on, he did experience digestive issues of sickness and diarrhoea with both daratamumab and bortezomib. His care team strongly advised him not to suffer in silence and flag up the side effects and how bad they were, which he did. He is now on a different combo which agrees much better with him so I’d say see how you get along with the combination as everyone reacts differently but make sure you flag any issues with your team as they may be able to help manage any side effects. Hopefully the side effects will be minimal for you xx
Hi Jane,
My dad was on lenalidomide maintenance following his SCT as part of a trial and luckily had no significant side effects. However, he didn’t get on so well with daratamumab which others tolerate better and after a couple of months and discussions he came off it and is much better in himself as a result, so it really is very individual. I’d definitely echo what others have said about speaking with the consultant as quality of life is so important.
Good luck! xx
Hi Peter,
Great to hear about Andrea and the blood results 🙂
Frustrating you still have no dates. Dad got his quite quickly but this was back in 2013 and pre-covid which I think has rather messed up waiting times for things. I’m pleased you have chased it up though and hopefully you will get it through soon!
Dad has also experienced withdrawal after coming off the steroids – hoping yours don’t last too long xx
Hi lisajoy69
My dad was on a clinical trial back in 2015 when he went to the USA and managed to get travel insurance. It was a while ago so I cant remember who it was with unfortunately and we did have to do some phoning around to speak to people directly to discuss the exact details since it wasn’t straightforward, but it is possible. Good luck! xx
Hi Lottie,
Sorry to hear about your diagnosis – it must have come as quite a shock, especially through a phone call so I can totally understand why you are feeling worried.
I am one of the discussion forum volunteers here and my dad was diagnosed with myeloma in 2013 at the age of 62. It is great that they haven’t found any bone damage so seems they have caught it early. As Kevin says, whilst myeloma isn’t curable, it is very treatable and more treatments are coming along all the time. It is very much an individual disease. Everyone seems to react differently to the treatments and the disease itself.
Speak a lot with your consultancy team and ask as many questions as you need. I found it very helpful to take a notebook along and write down as much as possible as there is a lot of information, acronyms and different treatments to take on board so is helpful to refer back to. I also write down questions that come to me (even now) to ask at the consultations so I don’t miss anything. We are all here as well to support you and share the information from our individual journeys and there is the infoline which is very helpful too 0800 980 3332.
Not everyone has a SCT. Some choose not to and some aren’t able to because of health/age. The best thing is to speak with your team about the treatment options they would advise for you. Try not to worry too much about the treatments. Dad had barely any side effects from his first treatment and recovered well from his SCT. It is a slow recovery in terms of getting energy levels back but he got stronger every day. He had a 7 year remission period before relapse where he lived a very normal life. He hasn’t had as much luck with side effects this time around with his first treatment for his relapse but he has since switched on to another course of treatment which he is responding much better to and feels much much better.
Hopefully you will find a treatment that works well for you and before you know it you’ll be back to your normal activities.
Take care of yourself and let us know how you get on xx
