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kh0305 2 years, 5 months ago.
My mum was diagnosed with smouldering myeloma a few years ago and began treatment in November. She used to be full of life. There are now days she doesn’t get out of bed. She is struggling to walk as she feels constantly dizzy and sick. She isn’t eating due to feeling sick. She has lost her she of taste. Are these normal side effects? The doctor has said the treatment is working well but she has no quality of life. Does everyone have a remission period? I am thinking of trying to get a second opinion as the doctor seems to be only bothered about how the myeloma is treating to treatment and nothing else. She is currently in hospital due to feeling so ill. Thanks
Hi jojomeddgooglemail-com
Which treatment is your mum on, and how old is she/what are the dr’s longer term treatment plans?
For those of us under 70 often the plan is a stem cell transplant after between 4 & 6 rounds of a combination of 4 drugs, Daratumumab, velcade, thalidomide and dexamethasone. Although some patients manage to keep working, many of us do have side effects which adversely affect quality of life to a greater or lesser extent. However once we have got through this treatment, & then the stem cell transplant, we return to much the same life we had prior to myeloma with minimal side effects.
For older patients, and those with coexisting serious health problems, the plan can be continuous lower level drug treatment. In this case it is really important that side effects can be managed so that patients don’t have the quality of life issues that your mum had been experiencing.
I hope that now your mum is in hospital that her drugs will be tweaked to make them more bearable. I think a good proportion of us will have needed them adjusting for one reason or another, I certainly did.
I hope that your mum is feeling better soon.
Hi. She is 76 and not having the stem cell treatment. Her main drug is Lenalidomide, she is on a low dose, along with a cocktail of others. She will need to be on some sort of treatment for the rest of her life but i was hoping she would go into remission then have to start again in the future but the specialist hasn’t said that. They have taken her off lenalidomide in hospital so I’m hoping they will change it to something else which will suit her more. She isn’t eating because she feels sick and its a vicious circle as the anti sickness drugs have a bad effect on her too. She also doesn’t have any sense of taste to add to everything! The specialist only seems to be bothered about the cancer and not her quality of life. Thanks for your response too, it really helps!
Hi there,
I am one of the forum volunteers and I have Myeloma. I think it is true to say that people respond to treatment in different ways or degrees of feeling unwell depending on their age and what other underlying conditions they might have. I had similar treatment to your mother and was very ill during the regime, far worse than the disease made me. However I have now been free of active cancer for 2 and a half years, so for me all of the feeling ill and unpleasantness was worth it in the end.
Tell her she is not the only one to suffer, but if she stays with it, it might be better for her in the long run. And of course there is always hope, so try to keep her spirits up and look at the long game rather than what is happening today, although I know from personal experience that that is easier said then done.
Please keep us updated as to how she is.
Regards, Tony
Thanks so much for your kind words Tony. They really have helped more than you know. I will let her know too as I think she is thinking this will be her life from now on. I hope you stay free of active cancer for many years to come.
Thanks again
Jo x
Just thought of another question, sorry. Hope many cycles of treatment did you have?
I initially had 6 rounds of VTD. (Velcade, Thalidomide and Dexamethasone).
These drugs may be different from the regime your mother is on, I think they tailor the drugs to the needs of the patient. You will hear of other drugs, but I think generally they do the same thing but in slightly different ways. And thanks for your kind words about my condition, it is very nice of you.
keep in touch. Regards, Tony
Hi Jo,
My dad is 72 and currently going through his first relapse(he was diagnosed in Jan 2013). He was being treated with DVD for his relapse but this made him very sick and he did not respond to it, yet many have a great response to this combination. He is now on IRD (Ixazomib lenalidomide and dexamethasone) which he has fewer side effects with (he was previously on lenalidomide as maintenance following his first treatment). He still suffers fatigue and some sickness but this combo is much better for him and the MM is responding well. I know it is very hard to see the light when you see your loved one go from being very active to having no energy and being poorly but once your mum gets through the treatment into remission, as Tony says, life will return to much more normality. In dads 7 years of remission he lived a virtually unchanged quality of life to pre-Myeloma. If you believe that your mum isn’t improving in terms of getting used to the treatment then push back to her medical team for alternatives. I had to do this with dads DVD treatment as I think often they don’t necessarily understand just how much the treatment is hitting them. I made a big deal of how much weight dad had lost and how poorly he had been and this seemed to get some action moving in terms of looking at solutions.
I hope this helps xx
Hi. Thanks for this. I need to keep on at them I think. She is still in hospital but noone still seems bothered about her not eating and her quality of life. I have a call in with the haematology nurse to discuss things. They just keep saying she will continue on the treatment until it stops working. They have said nothing about remission and the doctor said If she stops taking the medication she will be dead in 8 weeks. No talk of a remission period which to me doesn’t seem right based on what I have read. Plus they say the treatment is working well. It is so difficult as different departments do different things. They need a project manager to look at everything like they do in industry! Thane for all of your kind words and words of encouragement. You guys have given me more info and support than the medics! Xx
So. A lot has happened in the last few days. Mum was released from hospital as the doctor forgot to tell the nurses she needed to stay in due to issues with her liver. So she is back in now! I also spoke at length to the haematology nurse who said her paraprotein levels have been the same for 4 months now at 2.4 so she should does not need to be on treatment and is classed as in remission! It’s all been a complete mess and I’ve had to try to sort it and I’m hoping we are there now. Oh and apparently the doctor telling me she would be dead in 8 weeks of she came off the treatment was incorrect and due to either him mixing up his patients or not reading the notes! A fairly strong statement without being sure! This forum has helped greatly so thank you. Xx
Thank you for the update JoJo….
and I hope that your mother is discharged from hospital properly soon.
Unfortunately it’s not uncommon to be given inaccurate and alarming information initially, or at least that was my experience too. However once I had a designated myeloma expert consultant, this stopped and I’ve been able to have complete confidence in the information I’m given. I hope that’s the case for your mother. If not, it is worth investigating whether it is feasible to get a second opinion appointment from a regional hospital (who will be treating more of us myeloma patients).
Some myeloma patients do continue to have a more or less constant level of paraproteins after treatment, almost like MGUS, the pre myeloma condition. For some this remains stable for years, so I hope that is the case for your mother and her appetite and general health now improves.
Unfortunately it was the myeloma consultant who said it. I am just now hoping that we can get her infection free and back at home soon. Thanks for the support
Hi Jo,
Great to hear your mum’s paraprotein levels are stable and she is in remission but a shame she is still having problems with her liver. I share your frustrations with some of the information that is given and I personally have found it has been much worse since covid and complete agree that a project manager would be extremely useful as I’ve also found that one person doesn’t seem to speak to another and have had dad sent home without his meds or bloods being taken even when he has questioned it! Definitely keep pushing!! I hope she is back home soon xx
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