Hi Kookie47
You may get more responses to your post if you start a new thread with this message.
Although GPs are often the first to mention the myeloma diagnosis, they are not necessarily well informed. The senior GP in my practice told me that I could be dead within 3 months, that was 6 years ago. Terrifying at the time!
Your mother is likely to get a quick appointment to see a haematologist (& may already now have that appt) but there will be a series of confirmatory tests before a certain diagnosis is given & treatment planned.
The one that takes some time to process is a bone marrow biopsy, not one we patients relish, but is made more bearable if time is given for the anaesthetic to work, or if gas and air is given. It usually takes about 4-5 weeks for these results to be available.
Patients will also be given scans to check for bone lesions, more blood tests to check how quickly myeloma is progressing. (This can vary from extremely slowly, even taking years, to quickly taking weeks)
If the patient has any serious end organ damage (very high calcium levels, serious kidney damage, serious anaemia or sizable bone lesions) treatment will start before all the test results are back, otherwise it’s a safe cancer to wait for a few weeks.
In terms of treatment, it’s likely to depend on your mother’s age and frailty.
If she is under 70 or extremely fit for her age, it could be recommended that she has a stem cell transplant after 4 (or so) cycles of induction therapy of Daratumumab, Velcade, Thalidomide and dexamethasone.
If your mother is significantly older,or younger but with other serious health issues, it may be determined that she’d do better with a less intensive treatment regime, of which there are several.
The aim of all of these, intensive or not, are to reduce the Myeloma level to as low as possible, either until it is imperceptible on blood tests (called ‘remission’) or until it is at a low, stable level. Although statistically uk patients still have longer remissions after stem cell transplants, the process does have the potential for bad side effects (bone marrow damage, potential for secondary cancers later, doesn’t always work), and the approval/availability of recent new treatments are making SCT a more questionable treatment. More lines of treatment are now likely to be available to all of us, and with maintenance now the norm, continual treatment will be usual for both those who have stem cell transplants and those who don’t.
It is heartening that people are living longer with myeloma than ever before, although it’s still exceptional, one of my friends who was not expected to come out of hospital at diagnosis, is about to celebrate living with the disease for 20 years and our local support group has quite a few months members who’ve lived with the disease for over 12 years now.
I’ve been on DVD for 20 weeks. I’ve found the Velcade difficult all the way through and have had 2 dose reductions and still some neuropathy. The Dex (Like you 20mg on consecutive days with and after treatment) didn’t really affect me (except for blushing the day after) until this last cycle when I had my appointment & dex late in the day. I had initial headache and eye sensitivity to light after my first two doses of Dara, but nothing since.
Are you given omeprazol as an ongoing drug with DVd? This can cause nausea. Presumably your team have tried prescribing anti emetics.
TBH I’ve found Dara to be the kindest myeloma drug I’ve had so far, after the first two doses, but I know different patients respond differently. I hope your team come up with a plan to make it work for you.
Hi I’ve given a long answer to your question under Treatment.
Best wishes Jane
There are a pretty wide variety of “normal” responses across patients, and unfortunately it doesn’t seem possible yet to assess beforehand any individual patient’s experience.
Bear in mind that ethically drs have to tell patients everything that can go wrong, all recognised side effects even those that are pretty rare. In practice patients rarely experience all the side effects, or none of them. It’s difficult for Myeloma patients to assess the risk because we tend not to know personally anyone whose been through the experience. If we were going into hospital to have a knee replacement or whatever, we’d have a greater sense of what our risks will be.
The harvest is a benign but boring experience. Epharesis is a bit like dialysis (I think, although I haven’t experienced that). The patient sits up on a bed in a specialist ward, cared for by a personal nurse. Blood is taken from one arm, through a spinning machine to remove the heavier stem cells then the remainder of the blood products are returned into the other arm. This doesn’t hurt but you will have limited use of both arms so will need help. I found I could hold a book and more or less feed myself a sandwich but I would have needed help toileting, had I needed that. (So dress accordingly)
The nurse will test whether stem cells are coming through early on. If they are not, the process is usually stopped and a more expensive injection of stem cell stimulator given before trying again. If a limited number are coming through then the patient may have to return for one or two extra days. Some patients have so many coming through that the process only takes a few hours, but it’s more normal for it to take about 8 hours.
I had no after effects from epharesis, in fact I felt remarkably well in this time between harvest and hospital emission, which in my case was nearly 6 weeks. Despite the inevitable fear factor of the impending transplant, I was able to plan a few day trips and nice things to do to distract me from scary thoughts of the SCT itself.
I had my SCT about 8 weeks after a now friend who was diagnosed at the same time. Despite her being in her 40s and me being early 60s we got on well & shared experiences. Within minutes of having the melphalan my friend was sick. She continued with extreme nausea and frequent sickness for 12 days, diarrhoea and she looked grey and felt dreadful. She could eat, but only small amounts of things she fancied right at that moment, so was dependent on her family buying her food from the hospital based M&S.
I supposed my experience would be similar. But mine was much more benign. I had the melphalan, smelt of sweetcorn (which is normal & comes from the solution the cells are frozen in). I felt absolutely fine for about 5 days, although I had some diarrhoea & urgency (but no pain). For the following 3 days I just felt increasingly tired and a bit rubbish and my taste buds were odd (eg I couldnt stand the taste of water- I’ve heard other patients say tbis too although I still dont I understand why) I had no mouth problems. Mouth sores can be a major cause of patients having a very miserable experience but can often be avoided by using huge amounts of ice (go absolutely OTT) before, during and after the melphalan infusion for about 40 minutes in total. It may put you off the icepop or type of ice lolly you use (I still can’t tolerate the smell of camomile 5 years later- I’d made camomile ice cubes to use) The next few days I was totally washed out. I just wanted to sleep all the time and although family visited, I wasn’t really up to interacting with them. The hospital protocol of waking patients every few hours to check them didn’t help this. I couldn’t concentrate on anything and just felt rubbish, but wasn’t sick as long as I ate something (cheese & biscuits!) literally as soon as I was woken up. For some reason breakfast was served about 2 hours later. If I waited, I was sick. At all stages I made myself get up, showered and dressed which helped psychologically.
On day 12 I woke up thinking I felt a little better, within hours I knew I was over the major hurdle and by lunchtime I was estatic, I felt such relief.
I was discharged on day 14 but was readmitted on my first check up on day 16 because I’d caught a virus in hospital, was sick a few times at the Haematology Day Unit, and I was kept in a further 5 days. However I didn’t feel really ill,and this felt more like recuperation. I was able to do all those things I’d taken to pass the time during SCT which I hadn’t been able to concentrate on.
Once at home I was much more tired than I expected and couldn’t do much but watch films or listen to listening books for a week or so but by day 37 I felt better and was pottering around the house and garden. I steadily felt better over the following weeks, pretty much back to normal by day 80 and frustrated that we couldn’t go on holiday until day 100. The holiday was a ‘normal’ active holiday with some long treks- a very good distraction from myeloma and SCTs.
Many patients do take considerably longer to get back to normal or their new normal.
However the next person in our local support group to have a SCT had NO side effects at all, except loosing hair. No sickness, no diarrhoea, no sore mouth, despite drs continually warning these would happen.
All 3 of us subsequently experienced good remissions, 4 1/2 – 5 years later I am the only one who has relapsed (after 4 1/2 years) the others continue in remission and all of us would do it again (although my Dr is not proposing this for me in light of new 2nd line treatments) even the woman who had such a horrible experience.
Yesterday another myeloma patient who nearly died (of sepsis) during her second SCT (her family were called in to say goodbye to her) said she’d have a third if it was offered to her as she has had 8 years remission from that second transplant. (NICE protocol doesn’t allow for a 3rd SCT but one of our other members has had three). I was scared about the possibility of death, but when I asked the hospitals last experience of this was about 20 years before, when treatments were very different inyeloma.
I hope this helps, and good luck with the harvest and with the SCT.
Jane
I am involved with one of the local myeloma support groups. Many of our members regularly take holidays, often including foreign travel.
The person who originally set up our group was diagnosed with active myeloma 19 years ago, and has been on many lines of treatment over the years. Despite treatment she has usually taken holidays abroad 5 or 6 times a year (except during COVID travel restrictions) saying that this is what has kept her alive & well so long.
She has inspired other group members and numerous others have multiple overseas trips each year too. She’s currently off on her second holiday of the year, and today I’ve booked a trip to Mexico.
Holidays, & anticipating and planning them, are important to my quality of life.
And my Dr encourages me to take them, even when I’m in active treatment as at the moment.
Hi Brewy36
The specialist health insurers that will insure myeloma patients seem to know quite a bit about the disease. I was asked a few pertinent questions, rather than many questions, when I was in remission seeking insurance. I’m intending to go on holiday soon, but I’m on active treatment now so I suspect I’ll have more questions to answer. I’ve several friends on active treatment however who have all been able to find affordable insurance, two have been abroad 3 times in the past 6 months, so I know it’s possible, even though the first quote I got was astronomic (using a company that had offered a “discount” that clearly wasn’t!)
I am now trying to confirm dates and exactly where to go before getting the insurance sorted.
Good luck with your travel plans
Jane
Hi zozo0921
I think perhaps most myeloma patients take sometime to process their diagnosis and the consequences of living with an incurable disease. As Confucius said, we all have two lives, the second one starts when we realise that we only have one.
It’s all the harder when patients experience specific health challenges during the early months of their diagnosis so so little seems in the patients control. From what you say, your father seems to have had one challenge on top of another. Some myeloma patients do pull through these near death experiences and life calms down, and even with high risk genetic factors some patients live for 5-10 years, and will hopefully live longer in the future with new types of treatment likely to be approved.
Most patients would benefit from having psychological help to cope with the diagnosis.
Personally I benefitted from some counselling sessions provided by a local Maggie’s Centre. Other patients have had counselling from cancer centres, mental health services via GP or consultant, or have used Myeloma UKs Peer to Peer scheme (putting one patient or carer in touch with another patient or carer).
It may be that your family will have to advocate on your father’s behalf to push for him to get psychological help.
I wish your father and your family well.
Jane
Welcome to the forum.
Your father may find it helpful to ring Myeloma UK to speak the Ask the Nurse service. Alternatively, or perhaps additionally there is a peer buddy service, potentially putting carers in touch with another carer who has been in a similar situation to your father.
Your mother should have a named Clinical Nurse Specialist (CNS) who should be able to talk to your father and answer specific questions relating to your mother’s care, and any benefits that they may be entitled to, and any local resources and sources of support that are available.
I have neighbours a similar age to your parents. The wife is now chronically sick which has fundamentally changed their roles and lifestyle. The husband has had to take on new roles which he lacked confidence in, and he became seriously depressed. He has needed quite a lot of support from our local GP, and antidepressant medication which he was initially loathe to take. However the couple are muddling through and the husband has become better at asking for help.
In my neighbours case, until the wife was diagnosed, their lifestyle had been pretty “middle aged” and part of the trauma for them was realising that they are now “old”.
Congratulations David!
I’ve just started cycle 5, so still weekly appointments at the moment. I hope I get to cycle 50! That must be about 3 yrs 3 months so far?
Hi Jan66
I too belong to a local myeloma support group where we have members who have not responded for long to first (& in one case) second line treatments, but have gone on to have stable, low levels of myeloma so far for several years.
There are known to be 63 driver genes potentially allowing our myelomas to proliferate, usually in combination of at least 5 at diagnosis, which is why the course of myeloma seems such an individual thing.
However that can mean that we respond better to certain drugs than our doctors anticipate, certainly this has happened to one of my good friends, and I hope it is true for you too.
There are treatments like bispecific antibodies that are likely to be approved this year, and trials into Tri specifics. These work in different ways to other current drugs so might well work for you, and are “off the shelf” so don’t involve having to wait between lines of therapy (unlike say CAR-T cell therapy).
As your myeloma is more complicated than many, you might benefit from getting a second opinion from a major regional hospital,for another one if you are already being treated at one. Another option is asking for more detailed testing to look beyond the normal FISH testing that you probably had at diagnosis. You may need to push hard for this as it is not done routinely, but there are advantages to knowing what mutations you carry. For example there is currently a UK myeloma trial in 9 locations (Determine trial) of drugs that are known to work against BRAF V600 mutations, but none of us are routinely tested to see if we have this mutation. (It’s thought 5-7% of myeloma patients do have this mutation, and it does cause response times to be short).
Try not to despair. You are still here, and it sounds like your current quality of life is ok. Myeloma is generally like a steeplechase, most of us have occasional challenges, sometimes life threatening, but then we can be stable for many months or even many years. In the meantime myeloma research is progressing fast, and new, more effective treatments are being approved each year.
Hi Linsey
Snap! I am also on cycle 3 of DVD. I am not having problems getting to sleep whilst on the dex, although I do wake up early on the day after my second dose, at about 5 am with my mind going from subject to subject, knowing further sleep just isnt going to happen. This of course is much more manageable and bearable than the problems you are having. I eliminated sugar from my diet on the basis that dex causes spikes in blood sugar, and that dietary sugar will exacerbate the effect. I’m trying to stabilise my blood sugar levels. I believe this is the reason why I’m not having problems with sleep- although it could be just co-incidence. I stopped eating sugar (except in fruit) before starting DVD once I knew I was relapsing and would be prescribed Dex again, so I’m not sure how long it would take to notice any benefits.
Hi meliagante, I think the waiting bit is the hardest, for us all. Once you know whether you will benefit from immediate treatment it will be easier- either you wont, because you are smoldering, and you are sort of let off the hook- or you will be swept up by the Haematology team and intensive treatment will be started, a process that sort of takes over life, but where you will be well supported by the nurses and the team (In my experience anyway).
When I was at this uncertain stage I was totally preoccupied by myeloma all the time from waking until last thing at night. But this doesn’t last, eventually I acclimatised to living with myeloma, and I’ve had a good quality of life over the past almost 5 years since recovering from a stem cell transplant.
I hope you get your results, and that this waiting torture is over soon.
Hi Emmasue123 welcome to the forum.
I suspect that you will need to go through a specialist medical travel insurer or broker to get insurance, fortunately there are many.
I’ve used PayingTooMuch, which is a broker.
Although travel insurance does cost more once myeloma and related conditions rear it’s head, it is not prohibitively expensive (for most) & does give security.
Enjoy planning your next holiday! It can take a while to work out what insurance companies mean by some of their questions, so expect getting travel insurance for the first time to be time consuming,(eg myeloma is not a terminal illness in insurance terms) but it gets easier in time.
I found I “gave up” 12 months to diagnosis & treatment, but since then have had almost another 5 years of good quality life so far (I started 2nd line treatment a few months ago, but I haven’t any physical symptoms of myeloma and the treatment has proved easy to accommodate into life).
It’s good to hear that the much berrated NHS has swung into action so well on your behalf. I think many myeloma patients do experience excellent treatment under the NHS, certainly most patients in my local support group (which involves patients from 6 different hospitals) believe so.
Good luck with your treatment, may your myeloma numbers start going down with minimal side effects.
Hi Chrisska
Sadly your scenario isn’t that uncommon, ie as soon as induction treatment ends, myeloma returns, sometimes slowly, but sometimes dramatically like yours.
Its helpful that your Dr is seeking advice from the experts at the Christie who will have had plenty of experience of this.
Don’t worry unduly about needing a second line of treatment if you do, before SCT. If you need it, you do. By the time you need 4th line treatments new ones may well be available, research is moving on so quickly.
A close myeloma friend of mine ended up having 3 lines of treatment before having a SCT. But the SCT then worked (despite drs not being certain it would) and my friend was put on the same 3rd line drug as maintenance. My friend has been in remission having a good quality of life (lots of foreign travel included) for a couple of years so far.
I know of several other patients who’ve been given 2nd line treatments after an experience like yours, who’ve then moved quickly onto SCT without the delay of several months that many of us have, and this has worked for them.
I suspect that one day it will be possible to distinguish at diagnosis those of us who are likely to have this issue. At the moment only a very limited number of 5 or 6 higher risk markers are looked for, but it’s known that there are 63 driver genes that can be associated with myeloma. Myeloma is not really one disease, but a collection of very rare plasma cell cancers, and we are living with it at a time when medical science is still trying to differentiate between them. The good thing is that real progress is being made identifying new types of treatment that work, at least buying extra time for us.
