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.
Welcome to the forum k.
There are many conditions and complicating factors which feature with an individual’s myeloma experience, most of which are rare: known about but rare, within a disease (myeloma) which is itself rare, (or MGUS which is less rare. )
Guillain Barre syndrome is one of those, so TBH it’s unlikely that any of us will be able to answer your question, although it’s possible the Ask The Nurse service will, or message your consultant to ask.
Sorry to read that you have had to wait a long time for your actual diagnosis kenb. Sadly that is not uncommon for myeloma patients as many symptoms are non specific, and myeloma can affect us in different ways. I found Myeloma UK & the Ask The Nurse service very helpful in understanding the disease & treatment in the early days. Although it’s terrifying news to be told that you have an incurable cancer, the reality is that it is highly treatable for most of us, and there are increasing numbers of patients living with myeloma for 10, 20 years and sometimes longer. I would have been far less traumatized after diagnosis if I had realised I was likely to be as well as I am 4 years later, when to all intents and purposes I am absolutely fine. I found that a year was taken up by treatment & frequent hospital visits, but since then, for the past 3 years I have been very well, with minimal consequences from the myeloma. Keep hope alive & best wishes for your treatment getting the myeloma under control.
Hi Marky Sometimes it takes a year or so to get maximum response from a stem cell transplant, although 100 days after transplant is usually significant. Only your consultant will know the significance of your result.
I hope that your appointment is soon, and your consultant can be reassuring.
I had a fairly extensive rash over my trunk area during the first or second cycle of VRd induction which my consultant said was due to lenalidomide (Revlimid.) I had a longer break between cycles and it gradually recovered without me needing to change treatments, although it took about a month to disappear completely.
I’m still on low dose lenalidomide nearly 4 years later and haven’t had any further rashes.
Hi Kim, I’ve responded to your question about maintenance on the thread you started.
Hi Otto
Your other option is to import generic Thalidomide. This is legal in UK (although not into USA)- you can import 3 months supply for your own use or that of a family member.
I am one of a number of myeloma patients who have been importing Indian generic lenalidomide for the past 3 years (ie after its efficacy had been established but before NICE protocol changed to allow our doctors to prescribe). My consultant and GP are aware. This costs me c £120 per month, as opposed to £4000 for Revlimid lenalidomide.
I had some batches tested initially and minor side effects convince me that the drug is genuine. If you want further info, PM me. I am aware that my contact can supply Thalidomide, and I have identified a reputable Indian pharmacy that can supply too, although I haven’t gone down this route myself.
Hi Bumblelion, welcome to the forum.
When I was diagnosed 4 years ago at a similar age to your husband, I was very afraid that I was on a downhill slope health-wise, and that I wouldn’t reach my pension.
I devoted a year to treatment, having a stem cell transplant 10 months after diagnosis, but since then have been in good, stable, health- actually better than before when I knew nothing of my myeloma. No one would know anything is wrong, and to be honest at the moment, not alot is. This is so far from my initial expectations!
Your husband is considered one of the ‘young ones’ in the myeloma world, and the statistics that you may have read about, don’t really apply. (Google is often very out of date) There are new treatments being approved regularly, and although myeloma is still incurable, it is for some a chronic, treatable disease, and in time more of us are likely to experience this. The leaders of my local support group have lived with myeloma for 17 & 18 years respectively, and although this isn’t the experience of everyone it’s important to retain hope.
Myeloma UK is a brilliant charity, providing us with excellent (award winning) publications, an available listening ear in various forms, nurse led information and effective advocacy on our behalf with NHS & govt.
As you are finding, the diagnostic process is quite long winded as the disease isn’t called “multiple” myeloma without reason. There are different subtypes of myeloma, involvement of different immunoglobulins and light chains (or neither), each can be associated with a range of chromosomal abnormalities, some of which are more problematic than others. Myeloma can affect different organs, to different extents, and can be identified at different levels of damage.
Once diagnosis is confirmed (which can be a while after you “know” because one test has been positive), a decision is made about whether a patients general health means they are likely to manage an intensive 4 drug treatment protocol followed by stem cell transplant. Otherwise patients embark on a 2 drug regime, but the majority of us under 65 or 70 head towards stem cell transplants. Myeloma induction treatment is time consuming, and most people have some side effects, but it is much less harsh than old chemotherapies. Although we patients tend to refer to treatment as ‘chemo’, really we are being given much more targeted drugs ( except for stem cell transplant itself).
At the moment your world probably feels turned upside down (again) but I hope that you get some answers, & some control back over your lives, soon.
Hi Sparkles, diagnosis and early treatment can be horrendously life changing initially, but some of us do get significantly better, physically and psychologically, over time. Even if this is relatively straightforward, it can take a year, or did for me. One of my myeloma friends was confined to a wheelchair for 6 months after diagnosis, but 18 years on, is fully mobile and living totally independently. It isn’t possible to accurately predict which patients will do well- I’ve had a GP tell me I could be dead in 3 months, and a haematologist tell me (4 years ago) that I’d live 3-4 years. (My myeloma is currently inactive & I’ve been fine for the past 3 years).
It wouldn’t be surprising if your mother is feeling pessimistic at the moment given that her life has changed so radically over such a short period- & the level of pain she is in- but it is possible that she will be, & feel, much better once her myeloma is under control.
You mention the change in role that has been forced on your mother.
My mother too was long term carer for my father when she developed a serious, incurable illness (not MM). My parents had had a very long and happy relationship, enjoying “carer” & “cared for” roles respectively. But my father (who had had strokes & vascular dementia) had no understanding of my mother’s problems nor was capable of empathy for her, & their needs became increasingly incompatible during the course of her disease, which was very distressing for them & for the family to witness and deal with. In effect our family dealt with this by me advocating for our mother, & my sister for our father.
If your mother is responding to treatment, and recovering from the major surgery on her hip, she may just get back to playing golf- her previous level of fitness will definitely stand her in good stead. In the meantime she might benefit from counselling from a Maggie’s Centre or Cancer Support Centre.
Hi Lottie
You are being given a fairly new treatment regime, those of us diagnosed more than about 15 months ago were given 3 rather than 4 drug regimes.
The 4 drug regime in trials has produced much longer progression free survival times, an excellent world class treatment.
These drugs are more targeted than old chemotherapies, but still can be pretty gruelling. Some of us have more side effects than others, some manage to continue a pretty normal life.
Myeloma UK have a good series of information about current myeloma drugs which will give you information about the possible side effects, (but you won’t get all of the side effects).
The drug we seem to find the hardest to live with isn’t actually one of the myeloma specific drugs, but is the steroid given alongside them.
Life feels much better the other side of induction treatment!
Good evening Lottie
I think we all go into extreme shock to the core when we are diagnosed with this disease. It turns life upside down and is totally preoccupying initially.
However after treatment – which if you have a stem cell transplant, is likely to take around a year- life really can & for most of us does- go back to pretty normal, especially for those (like you & I) who have no obvious bone lesions.
Myeloma UK has lots of excellent information for us as patients & are very supportive.
New treatments are regularly being approved & give us all hope that myeloma will soon be seen as a chronic disease, rather than an incurable one.
Welcome to this club no-one wants to belong to.
By the way I spent the afternoon with two other myeloma patients, one was diagnosed 17 years ago and the other 19 years ago……
Jane
Hi King,
I think we are all anxious at your stage of treatment. Like so many aspects of myeloma, there is a uniqueness to our response to treatment which makes our doctors the best placed to offer specific advice. I know that a significant proportion of patients (like me) do not have a ‘complete response’ to induction treatment (ie still have measurable paraproteins or out of kilter light chain ratio ) & one of my friends is about to embark on SCT with a paraprotein level of 10. Someone in my support group has never had paraproteins less than 5, in all the 17 years since diagnosis.
The SCT produces a complete response in many of us, either within 100 days, or within a year. But as the person in my support group demonstrates, it is possible live well for many years with a level of paraproteins as long as it is stable.
I hope that your treatment continues to go well & that gives you some hope.
Jane
Hi Jane, you asked about my side effects from lenalidomide. The most significant one was neutropenia, which took me by surprise as I had tolerated a much higher dose during induction.
My maintenance dose was reduced to 5mg daily 21 days on, 7 off. I get constipation on this dosage and some cramping, but nothing that is difficult to tolerate.
I hope your husband can have a frank discussion with his doctor.
Best wishes, Jane.
It good that you’ve got a holiday to look forward to after SCT.
I got travel insurance from staysure (I think I’ve used them each time I’ve been away since diagnosis) & it was relatively straightforward after SCT to obtain it.
Before I went away I looked up addresses for local hospitals just in case and wrote out my diagnosis in the appropriate language. I was given antibiotics by my consultant, just in case, although I never needed to use them.
Even before COVID I used antibacterial wipes on surfaces in planes, restaurants etc .I took my maintenance drugs in their original packaging in my hand luggage just in case of queries going through customs, or my suitcase going missing.
I am looking forward to going on holiday again too- a time to put myeloma cells on the back burner for a few weeks.
Enjoy looking forward to your time away.
Hi Jane, the purpose of maintenance is to extend the period of feeling good, as healthy as possible, and able to enjoy life. If your husband isn’t, the maintenance isn’t achieving its purpose, and as a patient I would have a conversation with the doctor about whether it is better to do without maintenance (as virtually all patients who had SCT before early 2021 do) or whether it’s worth persevering for a while to see if his body learns to tolerate it.
I was one of the patients who was desperate to try lenalidomide maintenance, which wasn’t available on NHS when I needed it, & I have argued that everyone should have access to it after SCT. I went to what seemed significant lengths to import it for myself. But it isn’t side effect free, and I wouldn’t totally compromise my feeling of well being to take it.
I think it’s become clear that lenalidomide maintenance is not for everyone.
In USA myeloma patients have different maintenance options to choose from, this is the direction we need NICE & NHS protocols to take.
Quality of life really is important & even without lenalidomide maintenance the future is looking more optimistic for us with Daratumumab approved, and other drugs likely to join the arsenal soon.
I hope your husband does come to tolerate lenalidomide – it might need lowering the dose to 5mg or even 2.5 mg daily -but try not to get demoralised if lenalidomide just isn’t the drug for him.
Jane
