Hi Yvonne I hope the consultant is able to reassure your husband and yourself somewhat today.
Back pain seems to be the most common way that Myeloma is diagnosed, often there are fractures and a great deal of pain. The good thing is that over time and with proper use of painkillers most patients regain full function. Someone in my local support group spent 6 months in a wheelchair after diagnosis- but that was 18 years ago and since then she’s regained a very active life, including leading a hiking group. She’s had a very active life, in recent years taking holidays abroad every 2 months or so, even during COVID.
It’s always profoundly shocking to get this diagnosis for oneself or ones spouse, especially to hear that it’s not a curable cancer. However it is very treatable, and most younger patients like your husband do very well, and have long periods of stability when myeloma is not the main thing in life.
Welcome to the forum.
In many areas there are local myeloma support groups that enable patients to have face to face contact and friendship with other people living with this disease.Myeloma UK has a list of these on the website if you think this may be useful for you.
We all share the experience of being profoundly shocked to get this diagnosis, but with the treatments now available and with even better ones in the pipeline, many of us can anticipate leading pretty normal lives over many years.
For some years now I’ve described myself to my consultant as a fraudulent patient- I hope you will come to feel like this too!
Jane
I think potentially some patients may react differently to the fillers used in any prescription drug. I take a generic thyroid drug which is fine for me, but I know a few patients have side effects from it, and need to be prescribed the original, more expensive, version.
Conversely I suppose it’s possible that we might have fewer side effects from the fillers in a specific generic drug.
Something for our doctors to keep an eye on…
Although it’s worrying when any parameters start moving outside normal ranges, it doesn’t seem to necessarily indicate progression.
Someone in my local support group had gradual increases in paraprotein levels over 8 months to the point that she was told re-treatment would be necessary, but at her pre treatment test it had fallen slightly so treatment was delayed. Her paraproteins continued to decline over the next few tests, and whilst they yo-yo, She still isn’t on treatment 18 months later.
I’ve got IgG lambda myeloma but my kappa levels have been high, outside normal parameters, since SCT (Feb 2019). My uninvolved kappa lightchain graph results are long 12 month curves between 35 & just about normal. The lambda (involved light chain) yoyo ed alot over the first year, then was stable (though now might be rising above the normal range)
About a year after SCT my ratio was slightly above the normal range, like your father’s, but has since had a downward trend, more or less to mid normal range.
If my results are anything to go by, it would seem your father’s may be pretty normal. I hope so, but one to check out with his consultant.
Sorry you’ve had no responses Roger, perhaps use the Ask The Nurse service?
There is a known connection between myeloma and prostate cancer so you are unlikely to be the only one to have had finasteride during MM treatment.
(There is a history of prostate cancer in under 70s in my family which I believe is connected to my myeloma diagnosis.)
Jane
But I hope you don’t have to consider another SCT for a long, long time. (Thanks to lenalidomide maintenance which we are now able to have, thanks to Myeloma UK)
I haven’t used lenalidomide manufactured by Sandoz, but have been using generic lenalidomide for 3 1/2 years. (Cipla & Dr Reddys).
When I first used it I had samples of both tested by mass spectrometry. These showed near identical amounts of lenalidomide, with slightly different fillers.
Fillers cause slightly different side effects potentially, but I have experienced the same (minor) ones I had whilst on Revlimid.
I hope this reassures you, although like you I would have wanted to be warned about the change.
I too was a fit and active woman diagnosed suddenly when I was 60, nearly 5 years ago now. Welcome to the forum.
In the UK it is standard practice to encourage patients who are younger than their early 70s to have stem cell transplants, if they are fit enough. However in the USA there is no such standard practice and some consultants rarely advise SCT in the light of the range of targeted drugs now. If you do regret not having a SCT it is worth asking your Dr if it would still be possible to collect stem cells and to do the procedure. Lenalidomide is known to impair stem cell production so this may not be possible. However as rosary has pointed out, not all myelomas respond to stem cell transplants, and some patients do not benefit, or not for long.
My guess is that you made the best decision that you could at the time, with the information that you had. Try not to regret the decision you made, no one knows for certain how myeloma will respond to any specific treatment.
New drugs such as bispecific antibodies may become game changers for us with myeloma, in the meantime there are a number of good drugs approved by NICE for NHS myeloma treatment. By the time you come to need new treatments, novel treatments may be approved & available which may outweigh the collateral damage done by melphalan during SCT. It may turn out that those of us who had SCTs then feel that you made the right decision.
Best wishes, Jane
Re Hickman line.
I was given strong anti everything liquid body wash which destroys the skin microbiome and was asked to shower in the hospital shortly before the procedure.
I had the option of local or general anaesthesia, but was warned after general anaesthetic I’d be kept in the hospital for a few hours (& I could see a groggy patient coming round from anaesthetic) so I opted for the local.
The surgeon and nurses kept up a constant dialogue, telling me what was being done and what to expect.
It was an odd experience, with a bit of tugging as the lines were inserted through the skin, but it wasn’t painful or terrifying, and should I need one again I’d again go for local anaesthetic.
I was out of the hospital within an hour of it being done I think.
I didn’t enjoy having the Hickman line in and although it caused me no problems like infection and only minor blockage, I was very pleased to have it removed (which seemed relatively quick and not painful).
While you have the Hickman line in, you need to avoid the area getting wet when you shower.
I found putting the tubes into a zip lock plastic bag, zip lock downwards, then taping it to my shoulder worked pretty well, whilst I showered.
Best wishes to everyone going through this procedure.
Happy New Year Peter,
I’m sorry that you are having to start another line of treatment, but 3 cycles of treatment doesn’t seem many to me as a patient, to knock the myeloma back to the point where you are likely to have a long period of stability.
I haven’t had carfilzomib (“k”) yet, but it is newish (it was only in trials when I was diagnosed 4 1/2 years ago) and has a reputation as an effective myeloma drug. Lenalidomide (Revlimid, the “R”) is the backbone of all myeloma treatment. It’s 8% more effective than Thalidomide and is a kinder drug, less likely to cause side effects that would stop treatment. The “D” is the dreaded Dex, which you’ve had before.
As you will have heard, myeloma affects different patients differently, and we don’t all respond well to the same drugs. Hopefully you will respond as well to KRD as you did to VCD, without the side effects, so you are able to tolerate it for as long as you and your Dr feel is necessary.
Best wishes, Jane.
Best wishes for your transplant Lottie.
I remember the nervousness well, having had so many treatments and procedures, warnings about side effects etc leading up to SCT.
I found that the team looking after me were kind and experienced, and the procedure was not as daunting as I had expected, I hope the same is true for you.
My SCT now feels in the dimmed and distant past: 4 years ago at the start of February. Since then I have only needed low dose maintenance, and I often feel I am a fraudulent patient. Just bi monthly blood tests and telephone appointments, it’s now easy to get on with other things in life.
I hope your stay in hospital is as short as possible, and side effects are minimal.
Take things to do which are easy to concentrate on, and some hats to keep your head warm.
The recent ASH conference in December published research to show that SCT patients do not need the strict neutropenic diet that has been used up until now, so hopefully you will be able to eat anything that you fancy.
Please let us know how you are getting on.
Best wishes
Jane
Welcome to the forum Ethan, and Happy New Year (although I guess you’ll have to wait a while for Chinese New Year).
Wishing you all the best in your treatment, and may you do as well as many of the other “young” patients.
It’ll be interesting to hear how your treatment protocol differs from the ones commonly used in the UK given that all health systems seem to be collaborating with research and sharing results.
Best wishes
Jane
Hi Liz
It may be useful for you to seek specialist employment advice from the Myeloma UK ask the nurse team, or better still from Macmillan who have real expertise in the area of employment rights.
If course you want to continue to support your husband, and to continue to shield him by avoiding viruses yourself.
It’s very disappointing when employers fail to support their staff dealing with stressful family circumstances.
I’m glad that you contacted the haematology team, you definitely don’t want this uncertainty hanging over you over Christmas & New Year.
If the results suggest you need treatment, don’t panic or loose hope. Myeloma treatment is fairly dramatically improving for the majority of us.
You didn’t say what your father’s experience of myeloma has been, but treatments have even improved in the last 4 1/2 years since I was diagnosed.
But of course we hope that your medical problems are limited to diabetes and gallstones, that sounds enough for anyone to be getting on with.
Our doctors have to tell us everything that CAN go wrong during stem cell transplants, which can really raise our anxiety levels, but the reality for most patients is that while they do get a few side effects, they don’t get all of them. In fact one person in the support group I go to had no side effects at all except loosing her hair. She did not feel ill at all.
I think it must be a bit like childbirth, at the time we might say “never again”, but many of us repeat the process – because it gives us what we want, in this case a long period of stability.
My friend had felt very nauseous soon after the start of her transplant, and I assumed that this would be my experience. However apart from some diarrhoea I felt ok until day 9. On days 9-11 I was sick a few times and just wanted to sleep all the time. On day 12 I felt myself getting better hour by hour. Was it worth doing? For me, definitely. I had my stem cell transplant 4 years ago in February, 100 days later I was walking through gorges in Crete, forgetting all about myeloma, and I’m still “in remission” from it.
