Hi Caroline
I have two friends whose myeloma does not respond to treatments for long. One was diagnosed about 7 years ago now, but has only had about 6 months between treatments. He has taken part in a number of trials which he accredits with his survival. He is hoping to have CAR-T cell treatment, which is now approved for myeloma in UK, once the admin issues have been cleared which is expected to be early next year. Although CAR-T cell treatment has not worked for everyone, there are patients whose treatment profile was similar to his, who after a single CAR-T cell treatment have been clear of myeloma for several years (&continuing) without any ongoing drug treatment. Miraculous.
The other friend, who needed several lines of treatment to get to SCT, has been told by his doctor that CAR-T cell treatment holds the best long term hope for him, and his hospital are envisaging him being one of their first patients to receive it.
It may be worth your husband talking to his haematologist about CAR-T, which will only be done at the bigger, regional hospitals, as SCTs.
Thank you, we all have our parts to play.
I hope your father is feeling well.
Hi Lilib
I hope that your husband’s discharge and hand back to his original hospital went smoothly. I’m sure it is easier for you both with him being at home, even though he will still be extremely fatigued & not yet able to do very much at all.
Jane
Hi Simon
I haven’t personally, but someone active in my local myeloma group had a plasmacytoma on the top of his head which was successfully treated years ago, leaving a slight indent, but no recurrence.
Jane
Hi Sachbarnes
I believe it’s only the ratio that is of real significance.
Since my SCT 3 1/2 years ago my kappa levels have been outside normal limits (high) despite me having lambda myeloma. My consultant has said that this is, if anything, a positive thing. The ratio is within normal range.
Even if we are in a stable position disease wise, or if no myeloma is evident, our bone marrow remains ‘abnormal’ so perhaps that is the explanation.
Hi Andrew,
Dr Martin Kaiser at the Royal Marsden sees patients privately. He is one of the top Myeloma specialists in the UK & is at the forefront of myeloma research. You can find his contact details online. ( There are other good UK myeloma doctors who offer private consultations.)
It may be useful to you to read a blog called ‘Margarets Corner’ online & on Facebook. Margaret is an American living in Italy who was diagnosed with Smoldering Myeloma 19 years ago, and who is still smoldering, so has not yet required conventional treatment. She uses supplements, in particular curcumin. This does not have such a dramatic effect on all patients, but some others with SMM have found it helpful.
BTW You may get more responses if you start your own thread, which can be done by scrolling down the page at the top of the category heading.
Jane
Hi Lilib
Having platelet transfusions is very common during the transplant process. During a local myeloma group outing a few weeks ago, someone mentioned platelet transfusions (as one of our number was having a SCT and had messaged to say he’d have to have one) and I think all but one of us said we’d had at least one during our SCTs.
My experience was that I was told that I needed at least two, but my platelets started to rise after the first one, and I didn’t need more. I hope the same proves to be true for your husband.
I’m sorry that you’ve been left high & dry over the Bank Holiday weekend, always a worry. But I’m glad your husband is almost well enough to come home.
Some hospitals operate a quick access number for cancer patients, if your husband was given a card with a phone number on it during induction, & he is discharged, you could ring the hospital on that number so it’s logged on the system that he’s been discharged. Better still he could ask for confirmation that his ‘home hospital ‘ have agreed to do the platelet transfusions, know he is being discharged & have given him a specific first appointment, during the discharge process.
Best wishes for his recovery at home.
Good morning Nick,
Some people (not all, I didn’t) have bone pain prior to harvest due to the drugs used to encourage the stem cells out of the bone marrow into the bloodstream, but you shouldn’t have pain or discomfort afterwards. Actually you are likely to feel really well, apart from the anxiety of the approaching SCT. You will be free of all the side effects of the induction treatment, your myeloma level will be minimal, and you are likely to feel better than you have in months.
Good luck with the MajesTIC 3 trial, which drugs does this involve? It’s heartening that there are new trials going on again post pandemic to explore better relapse options.
Hi SMJ, I know several people with myeloma in my local support group who live alone & have had SCT, so it is do-able.
We are, and have to be, told all the fairly common side effects, but you are as unlikely to have all of them, as none of them.
Most of us have some level of nausea and diarrhoea, lack of appetite and fatigue, especially when neutropenic. This is when the old stem cells have died, about a week after the melphalan infusion, before the transplanted cells really come into their own around day 12.
I remember feeling quite elated and energetic on day 12, when I could literally feel myself getting better hour on hour, and was discharged only a couple of days later. (However I had picked up a virus and ended up being readmitted for a further 5 days). So I was finally out on about day 22.
For the first few days at home I was shocked by my level of fatigue. I definitely benefitted from someone preparing all meals, doing washing etc for the first week at home. I definitely couldn’t have made meals from scratch, and spent all the time in bed, sleeping a lot.
After a week or so (c. day 29) I started improving day by day, and on day 37 I remember telling my consultant that I felt much better. By this stage I was up pottering around the house much of the time but still needing naps.
By day 60 I felt more energetic, and able to do more, although I still tired more quickly than normal.
By day 80 I was raring to get back to ‘normal life’, which I couldn’t as I still had low neutrophils, but I’d more or less stopped naps, resumed cooking, washing tasks- not so much cleaning (& as I write this I realise that my husband still 3 years later often does the hoovering!!). There were cleaning tasks that I worried were potential infection risks, if you can afford to get a cleaner to help for two or three months after the SCT that would overcome that risk.
On day 100 I got the ok to go on holiday (the joys of pre COVID days) & went off for what proved an active ‘normal’ holiday on day 102.
I am aware that I had a relatively easy ride through SCT. I did not have mucositis, the sore mouth that can accompany the procedure, & very little sickness compared to some.
I know someone who had a first transplant when her partner was alive & felt able to have another once she was living alone. It really is not impossible, but it would make life easier if you could identify someone to stay with you for the first week or so after discharge (which will be an unpredictable date, so some flexibility would be necessary).
Jane
I’ve always taken it last thing at night, with water but without food, on the basis that it makes some people sleepy. Some people have it at the start of the day, I haven’t seen any evidence that it’s more effective one way or the other, so it seems best to take it at a consistent time each day, when it’s unlikely to be forgotten.
Hi Josie
You will be given a complete assessment by the haematologist, including the definitive test for myeloma which is a bone marrow biopsy. This involves a needle removing a sample of bone marrow from your hip, looking for tell tale proteins & myeloma cells. The sample should be tested for certain genetic changes if myeloma cells are found.
There are a number of subtypes of myeloma, kappa light chain myeloma is one of these, but it is normal to have a certain level of kappa light chains in the blood. A normal level of kappa light chains is up to 19.4 mg per litre. However it is the ratio between the kappa light chains and lambda ones which is more significant, this should be between 0.26 & 1.65.
It is always terrifying to be told that you have been referred for a 2 week wait appointment, however some patients have light chain levels up in the many thousands when diagnosed.
Myeloma is a very individual disease, there are perhaps a billion possible variations. It is called Multiple Myeloma for very good reason, so numerous tests are required. However not everyone who is tested, even if they have certain signs of the disease, will need active treatment. There a is a pre myeloma condition called MGUS (monoclonal gammopathy of unknown significance) and an often slow, indolent type called Smoldering Myeloma. Although both conditions require monitoring, they don’t require treatment, for years, perhaps ever. I’m glad that you have found us, you may also find it helpful to talk to the helpline, I know that I found it helpful when I was waiting for my haematology appointment.
Hi Lewisboy, I was diagnosed aged 60, four years ago and was profoundly shocked to realise that I had an incurable cancer.
I too knew a few weeks before all the test results were in that I had myeloma. For those of us with ” a myeloma defining event” which I suspect your father’s bone pain signifies, the disease is active. Drs look for ‘CRAB’ features, ‘C’ high calcium levels which show that the bone destruction/repair system is out of kilter, ‘R’ renal (kidney) problems which are usually caused by myeloma light chains causing blockages, ‘A’ anaemia which is caused by myeloma cells crowding out the bone marrow so other blood cells can’t develop, and ‘B’ bone lesions causing bone pain & possible fractures. They will also test to determine which subtype of myeloma your father has. Most commonly this is heavy chain myeloma, IgG or IgA but can be kappa or lambda light chain, or rarely a different subtype.
It is significant to know the level of myeloma infiltration into the bone marrow. This is often 60% or more, sometimes over 90% . If it is less than 60% and there aren’t any CRAB features then treatment often isn’t started, and a watch and wait strategy employed.
Multiple myeloma has earned its ‘multiple’ prefix in numerous ways, but one is the number of problems it can cause, hence patients need to go through a barrage of tests as Lottie has said, to identify problems caused.
All myeloma is caused by genetic mutations. Some of these are statistically more difficult to treat than others, so genetic testing is done on a sample of bone marrow to check whether we have any of these higher risk genetic features. Another sample of bone marrow looks at the different proteins found on the myeloma cells, which helps assess prognosis for an individual patient (& in time may suggest he or she might respond to specific non myeloma drugs).
A general health check is done to ensure any other health problems are understood before treatment is planned.
Otherwise healthy patients, esp those under 70, usually have a 4 drug regime of targeted myeloma drugs. Although we often call them ‘chemotherapy’ they are more specific. Fairly recently it was realised that patients live longer if ” the kitchen sink ” is thrown at the myeloma from the start, hence the 4 drugs with different mechanisms of action. Myeloma UK has good information about these (Daratumumab, Velcade, Thalidomide, Dexamethasone).
Usually patients have 4-6 cycles, either until the myeloma cannot be detected, or until responses have tailed off and only a small residual amount if myeloma can be detected. Each cycle lasts 28 days, so roughly 4-6 months although sometimes this is extended if a patient needs to change drugs. Often the drugs plus the frequent trips to hospital that they entail, take a toil on patients stamina. There can be side effects such as shingles, peripheral neuropathy, dizziness, fatigue but some patients manage to work throughout treatment.
Even if myeloma is not detectable after the 4-6 cycles, further treatment is needed because the myeloma will still be there in the bone marrow, either at a tiny active level, or dormant. In UK it is usual to have a stem cell transplant at this point, using cells harvested from the patient themselves at the end of treatment. The method of harvesting means myeloma cells are unlikely to get through, and it is safer for patients than using donor cells. It takes about 2 months to have the harvest & additional testing before having the transplant. All stem cells in the body are destroyed with a high dose of melphalan, a chemotherapy drug, then the patients stem cells are reintroduced. The immune system is extremely compromised for about a fortnight,vans it usually takes about 3 or 4 months to recouperate. Until recently all stem cell transplants were done in hospital, now some are done in flats on hospital campuses with beds available should the patient need it.
The speed at which patients are informed of their progress varies between hospitals. The hospital I am treated at uses an online patient portal so I get to see my results- good and bad-before my haematologist, some within hours of the blood test. It usually takes 3 or 4 days for the electrophoresis test which shows an ‘M spike’ if myeloma is present, to come through. I have always had my test results on the day of my consultation, but in some hospitals they are given a month in arrears.
If the treatment is working (which it usually does), the myeloma level will start reducing straight away. Some patients have a slow and steady decline, others a rapid one.
No one is really going to be able to predict your father’s possible remission time, not only because myeloma is such an individual disease (because there are billions of possible genetic changes), but because the treatment pathway that he is on is so new. It is known to give longer periods of stable disease, remission, than the old 3 drug treatment, which with maintenance after SCT gave an average of 58 months before first relapse.
I hope that your father does well, we really are on the cusp of this disease becoming a chronic, treatable condition. Do not give up hope that your father will be with you for a long time. There are a few patients, without the benefit of modern treatment, who have lived for 20 years. There will be far more who will live long lives now.
Hi Mark
For many of us life does get pretty much back to normal once the myeloma is inactive, which for many of us is after SCT.
The person who leads our local support group was in a wheelchair for her first six months after diagnosis, but for the past 18 years has been able to dig her allotment, lead walking groups, have active holidays.
This disease isn’t a one way street, it ebbs and flows. At the moment you are taking a combination of serious drugs, and have a regime that is dominated by hospital visits. Even without the myeloma the drugs would take a toll on what you can do …. But things do get better, often much better, beyond expectations.
Dear AC, I think you’ve hit the nail on the head about the side effects of stem cell transplant. The problem is that we have to be told everything that CAN go wrong. Most of us do have some of these listed side effects, but most of us don’t get all of them, or the more serious ones. SCT doesn’t work for all of us, but neither does any particular drug.
Statistically SCT works and extends a period of stability (which we often call remission) so most of us in the UK will agree to it.
For me certainly it was much easier than I’d imagined. The fear was much worse than the reality. I had nasty diarrhoea, felt a bit of nausea and was sick 3 times. I was totally zonked out for 3 days, days 9-11 and caught a virus which meant I had to be readmitted for 5 days, within hours of being discharged on day 14. However I felt pretty much recovered by day 60 and have had 3 1/2 years of stability since. Two friends had immediate severe reactions to the melphalan, being unable to lift their heads without nausea or sickness. Their recoveries took longer than mine, but they too have had in excess of 3 1/2 years of just about normal life since.
Another friend had no side effects at all apart from hair loss and a level of fatigue (although the drs apparently said they’d never seen this before).
I had a phone call this week from another friend who was then on day 5 after transplant, feeling tired & with a metallic taste in his mouth, otherwise fine (although days 7-11 tend to be the worst). He said his Dr has said new prophylactic drugs are given now so patients shouldn’t have the worst of side effects any more. That doesn’t mean that all patients get a Complete Response, that is still a bit of a gamble, but some patients without a Complete Response go into an MGUS like state of stable myeloma levels,which can last many years. I hope this helps.
