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I had an SCT 3 years ago, pre pandemic so out of date, but headed in like you with VGPR to induction and with CR within 100 days, which I hope is your outcome too.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.)
Hello Emma
Thank you for sharing your family’s terrible experience with your dear mum’s myeloma, your loss and the failings of her hospital treatment.
They strike a chord with me as there were a catalogue of errors in my late mother’s care, a world away from the care that I have received as a myeloma patient at my current hospital.
I am still processing my mother’s death 18 months later, but would suggest that you try to remember your mother as she would want to be remembered, not for her final few weeks. It may be helpful to contact PALs at the hospital to record your concerns over your mother’s treatment if you feel this will help you, and to seek counselling as Rich has suggested. The suddeness of your mother’s death is bound to make you worry about your own health and the health of others you love, it will take time to be able to take health for granted again.
With condolences for your loss & thanks for your posting, Jane.
Hi deec
Have you been told what visiting arrangements/restrictions there will be?
When I had my SCT 3 years ago I was told to have complete changes of day and night clothes every day, I would not have managed that without visitors!
It is almost inevitable that you will have diarrhoea, and be attached to a drip stand which will make getting to the toilet a challenge, so plenty of spare underwear and incontinence pads are useful. Also soft toilet paper!
I found squash & snacks helpful to keep nausea at bay, and visitors bringing in the unusual things you find yourself fancying to eat.
I took films, puzzle books and some craft type activities in, but didn’t take most things out of the case. I took books and an iPad and listened to audio books though. I tried to keep physically active, walking outside my room a few times a day,but found the two hourly monitoring of temperature and blood pressure etc 24 hours a day, made me doze quite a bit during the day, so although I only felt ill for 3 days (& that was mostly extreme fatigue) I also didn’t do that much. (But I was allowed daily visitors who distracted me)
I had had cyclophosphamide before my SCT so had already lost my hair. I think the nurses are very used to shaving heads if you want to leave your hair as it is before you go in, I’d take some hats with you, baldness feels quite cold.
Phone & charger are lifelines and the iPad was invaluable- but make sure there is WiFi (although surely this must be available?)
Good luck with the SCT- remember that you’ve been warned about everything that can go wrong, but not everything will go wrong. Most of us experience some undesired side effects, one person I know had no problems at all, and very few people have serious side effects.
Best wishes- oh, and don’t forget to arrange to have ice or ice lollies before, during and for about half an hour after your melphalan infusion. It can prevent the stem cells in your mouth & throat being killed off by the melphalan, which avoids some of the nastiest side effects of SCT. You may never be able to face that type of ice lolly again – so don’t choose your favourite!
I agree with Bear, you will have many options after eventual relapse.
Specialists cannot even agree how many subtypes of myeloma there are- or even if it really is just one disease. Prognosis is therefore hit and miss on an individual basis, with some patients either doing a lot better or worse than their chromosomal features and staging at diagnosis would suggest. You have had a better response than most and I’ve heard it said that the longer you live with myeloma, the longer still you are likely to survive. That’s certainly true in the early days after diagnosis as some people are so poorly by the time that they are diagnosed that they scarcely start treatment, but also true of some of the very long lived patients.
Some patients seem to have myeloma mutations which are particularly slow and indolent. Some of these patients have lived for over 20 years, even without the benefits of the induction treatments most of us, including you, have experienced. More of us should survive for 10 &
20 years with the newer treatments available, and with newer still treatments being approved and new treatment targets being identified, the hope has got to be that some of us will experience myeloma as a chronic disease (like say diabetes) rather than a killer, and a few of us may well be functionally cured by CAR-T cell therapy, or bi specific antibodies or perhaps other treatments aimed at improving our immune systems.
Myeloma does invariably relapse at the moment, but there are better treatments available than ever before, and if you are able to take part in clinic trials other options are opened up. Some UK patients end up having 6, 8 or more different lines of treatment, if you respond to them as well as you have your first line, you could well end up dying of something other than myeloma, which is what I guess our haematologists want for us all.
If you harvested enough stem cells, another stem cell transplant might be very effective for you- a number of people in our local support group have had ‘remissions’ of more than 5 years from second SCTs.
Try not to worry about the future, you are more likely to relapse slowly and with warning, than for it to be sudden, requiring immediate treatment.
I hope you continue in your current remission for a long time to come, it does more recently diagnosed patients like me good to hear of long remissions after SCT.
Hi Emfen,
Welcome to this forum.
I first had contact with Myeloma UK before I was diagnosed, but when tests were pointing in this direction. The charity and this place are definitely the place to come.
It is always terrifying and soul wrenching when you or a loved family member gets such a diagnosis, and a fear is that the disease is a one way progression towards death. However for the large majority of us, that is far from the case. For example I was diagnosed 4 years ago, and for the past three years have had a near normal life (or would have done without the risk of COVID). After a year of treatment and recovery, I’ve had little sign of having cancer, and I’m totally confident in the monitoring I receive from my lovely hospital team. I’m in a very different place to the one I found myself in 4 years ago. The symptoms people can have at diagnosis vary widely (which is why it’s pretty difficult for GPs to suspect). Many people have quite significant problems with bones, kidneys high calcium levels and /or anaemia by the time they are diagnosed. Many have significant pain or mobility problems. However most symptoms greatly improve during and after treatment,for example one person in my local support was wheelchair bound for some months after diagnosis, but belongs to a hiking group and digs an allotment now, 18 years later! Her story may be exceptional but more of us will survive for longer now, as new & more effective treatments are being approved regularly.
I hope your mum gets a diagnosis, whatever it is, quickly, and starts treatment, the first step towards getting back to reasonable health.
I hope that you are home again & much better now Geoff. What a traumatic experience.
Best wishes, Jane.
Done
Could you give some more information and put a link to the petition please?
Hi Geoff
Sorry to hear about your anal fissure. My father had one. My father’s heart was too damaged to do surgery under general anesthesia & his hospital weren’t keen on operating but his quality of life improved greatly after it was repaired under local anesthetic. I hope yours is repaired soon, they are extremely painful.
Hopefully you will get to enjoy good health and sunshine soon.
Best wishes, Jane
I have been on lenalidomide maintenance for nearly 3 years & am seriously considering MRD testing to inform about the relative merits/risks of remaining on maintenance indefinitely.
I don’t think that MRD testing can give the degree of certainty I’d like, there is still professional uncertainty about which myeloma patients would do well without maintenance, and I know certain renown USA specialists are still recommending maintenance until relapse or side effects prohibit it, despite MRD test results. The depth of testing available is also another consideration- as this is a fast changing field . However, I still would be very interested to know what level of myeloma is detectable within me.
So far I have been told that (as Bear said) samples can be tested in Leeds, and possibly in London, and Sachbarnes has been told Oxford Churchill offers it. Is anyone aware of anywhere else?
Do you know if it’s ‘just’ flow cytometry which is offered or NextGen sequencing too?
Hi Jiffe
I’m sorry to hear that you have been so poorly,it must have been terrifying. I hope that your recovery is now well on its way and that your myeloma is now inactive and that you have a long period of ‘rwmission’.
Best wishes
Jane.
Hi David
You describe wonderfully the turmoil and chaos we all feel when given this diagnosis. Myeloma is a complex disease so it takes some time to understand the relative significance of our individual symptoms and test results, as well as dealing with the total disruption of our old lives caused by treatment and monitoring.
However most of us do go on to assimilate myeloma into our lives, our disease is not apparent to others and we can enjoy life again.
When we are diagnosed we are told that myeloma is incurable but treatable. It can take sometime to appreciate that the “treatable” bit is more significant than the ” incurable”. Myeloma research has been remarkably successful during the past 20 years, and new treatments are being approved by FDA every few months, NHS treatment is improving every year. There are an increasing proportion of us surviving for over a decade or even 20 years, and younger people such as yourself tend to do very well.
Its not a good idea to look for survival data on Google, much information is seriously out of date. Even GPs can give misleading information- mine told me I could be dead in 3 months, 4 years ago, and currently I am absolutely fine, no one would realise I have anything wrong & my life is pretty ‘normal’.
Expect to give a year over to myeloma treatment but after this there is every reason to hope for a good life again. You are not on a one way street.
Hi Henza68
Myeloma UK have recently launched a new peer to peer service for those affected by the disease, your wife can find details on the main website. A coordinator (Courtney) at the charity can arrange for your wife to have up to 6 regular phone or zoom calls with a fellow myeloma carer if she feels this may help.
As a patient I have often felt that the diagnosis is even harder on our spouses, we have no choice but to get on with the gruelling treatment, and generally experience alot of support and attention from professionals who know what they are dealing with, whereas our spouses are thrown in to the scenario without preparation, or medical knowledge and most of them do a totally amazing job of supporting us even though their own world is turned upside down as much as ours.
