As you say Mariposa, we have all been through this terrifying route of discovery.
These weeks ahead will seem an eternity, until you know the details of what you are facing.
Despite everything, myeloma is actually pretty slow growing, so you have time on your side for your doctors to investigate all likely aspects and complications of myeloma and associated conditions, to work out exactly what is going on, and to assess whether treatment is advisable now.
The scans should show any bone lesions, 80 % of us have lesions at diagnosis, and will show whether they require additional treatment.
The bone marrow biopsy is not pleasant, but is better if the performing doctor leaves the local anaesthetic for 5 minutes or so to work. If the doctor is reluctant to do this, I ask for gas and air. I don’t know why this isn’t offered, as it makes the whole procedure much more bearable.
The results are really useful, although to us patients they can be alarming. Some myeloma patients have over 90% myeloma cells in their bone marrow (how we function like that I don’t know). The biopsy should also check which proteins are evident on myeloma cells- most of us have quite a variety present, of a wide possible range. This ‘FISH’ tests gives drs information about the starting point of our myeloma, and the degree of ‘risk’ (statistical treatability).
Do let us know how you get on.
Jane p
Hi Linda
I had my velcade dose reduced twice during induction as I was experiencing ongoing numbness in my toes. Complete feeling returned, and my feet have been fine since I stopped taking velcade at the end of induction.
Hope it’s the same for you.
Good luck with harvesting- painless luckily!
Jane
Hi Jo
I have been taking lenalidomide as maintenance since I had my SCT. I don’t have high risk genetics, but it makes sense to keep myeloma at bay for as long as possible. I won’t be able to use lenalidomide later, but there are already new drugs available on NHS since I started lenalidomide maintenance over 3 years ago, and I’m hoping that there will be even more effective treatments available by the time I need them.
Maintenance does extend progression free survival (myeloma XI trial results) and although overall survival differences are pretty difficult to assess in these days of so many different treatments and changing protocols, I personally feel it has benefited me psychologically to have maintenance; I have done all I can to keep the beast at bay. I am surprised that your husband’s doctor sounds like he is sitting on the fence. Have you thought about getting a second opinion?
Best wishes, Jane.
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.
