I developed brain fog after three months of lenalidomide and cyclophospahimde treatment. When I raised this with my consultant he pointed out that I had become anaemic (my haemaglobin level had dropped from 126 to 98). I was given a blood transfusion and the dosages of lenalidomide and cyclophsphamide have been halved. After the transfusion I felt much brighter but one week later the effect has worn off and brain fog is returning.
It seems to me that the anaemia was caused by my lenalidomide. I haven’t had a blood test recently but suspect that my haemaglobin level is still pretty low.
Hi Sparkles
Everybody’s myeloma story seems to be different but there are a few similarities between mine and your mother’s so you may find this helpful.
I’m now 76 and male. Until February of last year I was fit and active. Like your Mum, I also played golf (but badly). In February I developed back ache which I put down to muscle strain, however, within a few weeks the pain moved to my right thigh and became paralysing. By early May I was pretty sure that I’d be in a wheelchair for the rest of my life.
An MRI scan revealed that a growth on my L4 vertebra was compressing the nerves in my spinal column and it was that which was causing the pain in my thigh. I had an operation to remove the growth and as soon as I came round from the anaesthetic I knew that the pain had gone. The growth was sent for analysis and it was subsequent to this and a bone marrow extract that I was diagnosed with myeloma.
The pain had paralysed my right leg but gradually my mobility improved. Then, after a few weeks, the pain returned – not quite as bad as before but enough to put me back in a wheelchair for hospital visits. I had another MRI scan but the conclusion was that the growth hadn’t returned and I didn’t need another op. In July 2021 I started chemotherapy. Over the next few months the pain eased and I was able to start walking again.
I stopped chemo in March of this year and since then my general wellbeing has improved a lot (I suffered quite a lot from side effects). I am now able to do jobs around the house and garden. I use a stick when I go for a walk.
I have constant pins and needles and numbness in my lower legs and feet, and jobs that require me to lean forward soon give me backache but the debilitating pain that I used to get in my thigh has gone completely. I get tired quickly but, after about 12 months of inactivity, that’s not surprising. I am trying to build up my strength and stamina but, given that my L4 vertebra is described as ‘collapsed’, I’m not sure about playing golf. I am able to walk for over a mile without needing to rest and, I think it’s true to say that it’s arthritis in my hips that causes me most discomfort.
I’ve never had a satisfactory explanation as to what caused the pain to return (although I have been told that it was the chemotherapy that stopped it).
My paraprotein levels have always been low and I don’t suffer from high levels of calcium, kidney problems or anaemia that affect many myeloma patients.
I was a mere stripling of 75 when myeloma reared its head. I had a rough few months but now I’m enjoyinng life again.
I hope this helps.
NormanT
Hi Jolly Northerner
My experience has some similarities with yours. Here’s a brief rundown in case it’s relevant.
I’m now 76 and until this started I was fit and active. In Feb 2021 I developed a pain in my lower back. I’d been doing some diy that involved crawling round the floor and putting pressure on a screwdriver so thought I’d strained a muscle but after three weeeks the pain hadn’t eased. Then the pain seemed to move and it became more intense. By now the pain was mainly in my right thigh, and it soon became paralysing. I needed a wheelchair to get about.
The local GP decided it was arthritis in the hip and left it at that. Eventually the pain was so bad that I went for a private consultation.
The first thing the consultant said was that there was no way that the degree of arthritis that I had would put me in a wheelchair and he sent me for x-rays and an MRI scan.
It was the MRI scan that revealed the cause of the problem and his advice was to go to A&E immediately. What the MRI scan showed was a growth on my L4 vertebra that was compressing the nerves in the spinal column. I felt the pain in my legs (both legs by now) but the problem was the growth on my vertebra. A few days later I had an operation to remove the growth. As soon as I came round from the anaesthetic I knew that the pain had gone.
The growth was sent off for analysis and the results of that indicated that I had plasmacytoma (which later developed into multiple myeloma).
After about six weeks the pain came back and I had another MRI scan. This revealed that there was no need for another op and I started my chemotherapy.
Over about three months of chemotherapy the pain subsided. I suffered quite badly with the side effects of the chemotherapy but stuck with it for another six months. Eventually I came to the conclusion that no-one could demonstrate to me that it was doing me any good (my paraprotein levels had never been high). I stopped chemo after nine months rather than the 12 that the consultant advised.
Since then I feel much better. Some activities give me backache and I have permanent numbness and pins and needles in my lower legs and feet. When it comes to walking I think it is the arthritis in the hips that cause me most trouble now.
Like you I tried various painkillers. I found oramorph most effective.
Altogether I was pretty immobile between Feb 2021 and May 2022 months, and it’s taking me time to build up my strength and stamina but I’m now able to do things around the house and garden that have been neglected for more than a year.
I hope that this is some help
Normant
Thank you all for your replies which are all very helpful. Thank you also for your good wishes
Here is some more information about my particular situation. I am 75 years old and, until February 2021, I was active, fit and healthy and on no medication at all. I think that the discovery of myeloma came about by an unusual route. I had none of the usual CRAB symptoms but had an intense and persistent pain in my right thigh which was so bad that I needed a wheelchair. An MRI scan revealed that a growth on my L4 vertebra was compressing the nerves in the spinal cord. What I was experiencing as leg pain was referred from this compression. Within a few days I had an operation to remove the growth and the pain disappeared. The growth was analysed and proved to be myeloma and this was confirmed by a bone marrow extract.
I am told by my consultant that blood tests show that my paraprotein levels are consistently low and that they aren’t any help in monitoring progress. My own research tells me that this is typical of oligosecretaory myeloma. which is a rare form. I’m coming to the conclusion that the risk of myeloma to me is much more from bone damage than from a cmpromised immune system. But, of course, my immune system is being compromised by chemotherapy. So that’s all the more reason for not prolonging it unnecessarily.
I have asked whether a stem cell transplant is on the cards for me, but apparently not. I guess that I’m deemed to be too old.
I have also asked about the possibility of a break in my treatment but the cnsultant says that would only happen if the treatment was cuasing me physical harm and not merely discomfort.
I had an MRI scan just before my treatment started and another at the end of my sixth cycle, and, without being specific, my consultant told me that the result showed signs that the treatment was working. But these scans are six months apart so it’s not clear whether the benefit was gained early on in the treatment or whether it is continuing. My next MRI scan will be at the end of my 12th cycle. Clearly, I don’t want to stop treatment that is benefitting me, but we seem to be working blind. And, from what I have found out so far, the duration of my treatment is planned to take twice as long as what Blood Cancer UK and MyelomaUK say is typical.
As you may have gathered, my consultant is not very forthcoming with details and explanations. It’s taken me six months to work it out but it seems that I need to be armed with very specific questions and requests. And I’ve found that it’s best to email them in advance of the consultation. Otherwise I get vague and non-committal replies.
Thank you again for your replies and best wishes to you all
Norman
