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 (Google is often very out of date) There are new treatments being approved regularly, and although myeloma is still incurable, it is for some a chronic, treatable disease, and in time more of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
Hi Sparks, welcome to the forum. You may be looking too specifically for other myeloma patients who have recent experience of SCT at Kings College here. You may find your local support group knows more about Kings. However for the most part there doesn’t seem to be great variation between transplant centres so more general information may be helpful to you.
I had an SCT 3 years ago, pre pandemic so out of date, but headed in like you with VGPR to induction and with CR within 100 days, which I hope is your outcome too. Now I could ‘almmost’ forget that I have myeloma for the time being.
The most important advice that I had for SCT were:
-to suck, chew on and hold in your mouth as much ice or ice lollies as possible for 30 minutes before, during and 30 minutes after the melphalan infusion, thereby protecting stem cells in your mouth and throat in an attempt to avoid mucositis. Mouth sores are one of the most miserable side effects of SCT.
– to get showered and dressed every day, however hard that felt, and to keep exercising even if that meant walking around the room. (That’ll be easier on ambulatory care!)
– even if you don’t get mucositis, your taste buds are likely to go haywire and you may fancy things you would not normally eat, and vice versa. Home cooked food was allowed where I was- the important thing was that it was cooked. SCT units usually have freezers and microwaves available for patients food, the units don’t always tell patients, so it’s worth asking.
– I found eating little & often helped avoid nausea getting hold. The hospital routine was to wake patients early with a cup of tea, but for breakfast to be some hours later, by which time for me nausea had started. However if I ate something (a portion of cheese for some reason) it avoided the nausea starting in the first place.
– when in hospital, the routine monitoring every couple of hours, night and day, prevented solid sleep, so I dozed more than anticipated, and didn’t have time to get bored. My concentration was pretty poor so much of what I took in to while away the hours remained in my suitcase.
– take in the softest loo rolls you can, close fitting underpants and some incontinence pads in case you need them. Diarrhoea seems almost inevitable.
I wish you well during your SCT, and subsequently a long period of stability where you can concentrate on family life rather than treatment.
May be different hospitals do things differently, and my experience was on the mild end, but even patients I’ve known who’ve vomited a lot, so felt very wretched, who have needed pumps to keep topping up anti nausea meds, have not needed NG tubes. My hospital did provide ice & lollies- does his? I didn’t know mine would provide them so took some in, which may be an option for him. Could he be up front with the team about why he can’t face an NG tube, see what they say?
Hi Lili
I suspect this is another of the many examples of patients assuming that they will get every side effect/problem mentioned. Drs have to warn us of all of the known side effects or problems that can occur for patients, and this is totally alarming for us, in my case I was petrified that I would die. Although most patients get some side effects, a few get a serious one, but a few get absolutely none at all, other than loosing their hair.
I certainly was no where near needing a nasogastric tube, I was able to eat (although not quite a normal diet) throughout the entire process. Actually I have never met anyone who has needed an Ng tube, although I can see that this might be possible at the very extreme end of reactions to SCT. If your husband eats, crunches, sucks vast amounts of ice/ ice lollies, 30 minutes before his melphalan infusion, until 20-30 minutes after, he stands a good chance of protecting stem cells in his mouth and throat from the melphalan, thereby avoiding mucositis which is what leads to a sore mouth and throat.
It is far, far more likely that your husband will have extreme diarrhoea & nausea than needing an Ng tube. He should check this out with his myeloma nurse or the SCT Dr. I hope this reassures him. (By the way I had mine 3 years ago and within 3 months was feeling brilliant, which has continued since.)
