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I have been reading your posts, which has been really helpful.
I started cycle 1 of induction treatment a few weeks ago and am planned for STC.
Reading all about your experiences has given me a better understanding of what is ahead…please can someone explain what is the ‘100 days isolation’? I’ve heard 100 days after transplant mentioned too but don’t understand the significance of this.
Looking forward to hearing more
Cath
Hello Cath,
Good luck with your treatment I hope all goes well with that.
After SCT I was advised to isolate for 100 days. No meeting up with people especially indoors until I have my CoVid vaccine which is due in two weeks. I can go out walking but to avoid going near people. If I had to go shopping then to go at quiet times, I get mine delivered. I do know people with children at home have difficulty doing this and it is a case of managing the situation – plenty of hand sanitising.
I was advised after the 100 days to keep wearing my mask and sanitising hands when outdoors and just be careful but not hide away until I get all my childhood vaccines which start six months after SCT.
After SCT you will receive your protocol which gives details of your treatment, when to start and finish medication and when vaccines are due.
If I can help with any other questions please let me know.
Good luck.
Lottie
Hi Cath,
I don’t know if one of the forum volunteers can clarify this because my experience is different to Lottie’s. I left hospital nearly 3 weeks ago following my SCT and I wasn’t told anything about 100 days isolation. Admittedly I don’t have any contact with young children and my husband and I are retired so we are pretty much isolated anyway. But I have had several visitors at home since coming out. Only 1 at a time, apart from my parents, and I obviously made it clear that no one was to come who had any symptoms or been around anyone who was ill. My nurse told me to just be sensible and avoid busy places such as restaurants and shops but I still have to visit the hospital for blood tests and treatment and there is nowhere busier than there! I have my monthly consultation next week so I will mention it then and see what they say. Good luck,
Liz
Welcome to the forum Cath, and may your induction treatment go smoothly to your stem cell transplant.
The 100 days that is talked about, is the time between having the melphalan at the start of the stem cell treatment (day 0) and the day when tests are done to determine the success of the treatment (around day 100). By this time most of us are some way on the road to full recovery.
When I had SCT it was done in hospital, in am isolation room, but some hospitals now use flats or hotels nearby, or even let local patients stay at home.
Most of us have side effects to some extent, but these are often improving on day 12 onwards.
Most of us are allowed home somewhere between day 14 and day 21.
However our immune systems are still precarious, we are weak and often have gut issues. This gradually improves over days, then weeks, then months.
If your experience with SCT is relatively benign, like mine, you may feel significantly better by five or 6 weeks after the SCT (day 35 -42), but it can equally be normal for it to take longer.
However our immune systems can still be pretty much like a new born baby’s, and we have to take care not to catch viruses, or come into contact with other pathogens. By day 100 most of us have developed a new immune system that is robust enough to offer reasonable protection. For example my consultant encouraged me to go on holiday, which I did on day 102.
For the first few weeks after SCT many of us will still have myeloma cells. Gradually these will die off as a result of the SCT. Many of us have stabilized by day 100, so we are tested to check for myeloma cells, and are given a verdict. We all hope for a Complete Response (“remission”) with no myeloma cells in evidence of course, but some still have a level of myeloma in evidence. It’s disappointing when this happens, but some patients gradually lose remaining myeloma cells over the first year, (or more,) especially now that maintenance drugs are given. There are some patients who never go into “remission”, but some of us in this boat seem to go back into an MGUS like situation where the myeloma is at a low level, stable and doing no damage. This can continue for years.
I hope this helps!
Jane
Dear Jane, Liz and Lottie,
Thanks for your helpful responses about the ‘100 days’. It seems advice varies a bit – but from what I understand, essentially this is a random number of days someone has come up with, within which time most people recover from STC and after the 100 days, tests are done to see if treatment has worked. Is this when the next bone marrow biopsy is done?
Lottie you mention immunisations only starting 6 months after STC, this seems along time to wait for things like tetanus (I’m a gardener!) …… and presumably you can’t go abroad until you’ve got all you childhood immunisations? At this stage for me (one month into induction) it is all along way off, but I really need something to look forward to – it is such a long treatment, especially if there is a big gap between induction and STC.
Is the gap between induction and STC entirely because of waiting lists? I was told here that they would refer at the end of cycle 3 to the regional centre for Harvesting and there was currently a 12 week wait from then. It seems from the forum that other people have waited much longer, and then waited again for a hospital bed.
Work…. Does anyone have advice about this? I was signed off now and relieved to be as I had bad reaction to the high dose steroids. Now on a lower dose I am at least sleeping, but my brain is like sludge. Did anyone go back to work in the gap between induction and SCT? Do you go back to feeling normal at that time?
I actually had MGUS diagnosed 10 years ago after fracturing a vertebrae during an ill- advised after school sledging trip! The type of myeloma I have is SLIM, and luckily no bone lesions or other complications, with good genetics from the bone marrow biopsy. It has been hard to establish information about long term prognosis from the 4 different doctors I’ve seen over the past few months… they all say ‘good’ and give an anecdote about a patient who was in remission for 5-7 years. I am guessing that as this type of myeloma is relatively new addition (8 years ago?) that there is not the research. The ‘ask the nurse’ on this site only had older research. What are other people’s experiences of trying to discuss long term prognosis with their teams???
Sorry I have brought up so many different topics here! This is such a helpful place.
Cath
Hi Cath,
I hope I can answer a couple of your queries although, as we keep being told, this is such an individual cancer and everyone is different and so there are no generic answers.
I think SCT is probably all down to bed availability. My harvesting was done in November and I was told mid January for my SCT but it was actually mid February before I was admitted but I had weekly blood tests in between which always came back stable so I was told there was no need to worry. In between harvesting and SCT I actually felt fighting fit and a bit of a fraud when people asked how I was doing! It came at a good time because it meant I could really enjoy Christmas. So I guess you could go to work if you wanted to? I made the decision when diagnosed to give up work there and then. We fortunately didn’t need my wage to survive on so my husband and I decided we would both prefer to be doing more enjoyable things than working from now on!
I’m also hoping the innoculations can be done quicker than 6 months so that we can go on holiday but I’ve been told I shall hear from my GP about those? Again, may be this is different according to where you live?
With regard to long term prognosis – I asked the day I was diagnosed and was told 8-10 years. This shocked me quite a bit as I was only 52, but I’ve come to terms with it, especially as there are so many promising stories about people who have had longer remissions times. We must have faith that the excellent research being done in this field will be beneficial for all of us.
Hope this helpa. Good luck with your treatment.
Liz
Hi Cath,
I have answered your queries from my experience. I am based in Scotland and aware every Health area can be different.
Another bone biopsy has not been mentioned to me as yet but I have a Consultant appointment in three weeks so may find out then.
I was put forward for harvesting at the end of Cycle 3 and had kidney,lung and heart checks before then. I only had to wait a month for harvesting. I had trouble harvesting so had to be admitted to hospital for chemotherapy and harvesting was scheduled for 1st November which was successful. I was on DVTD and was advised sometimes Daratumumab can cause problems with harvesting for some people. I received an appointment to visit the SCT hospital a few weeks later, had bloods and OBS taken. I was advised that I was 12th on the list and may get called before Christmas and recommended to isolate for ten days before admission however if I was called at short notice I obviously would not be able to isolate for the required time so just to be careful. We were due to go to our son’s for Christmas but cancelled as they have two children which was really hard. I had a call on the 29th December to see if I was available for admission on the 4th January. I had my STC and was released SCT+15.
With regards to work I work from home so was able to continue with that right up to STC. I am currently on six months sick leave however I may just return for two months and leave as want to enjoy my life and not stress around work.
With regards to the vaccines I received a protocol from the hospital on discharge which identified when I had to either commence or end medication and also dates for vaccines. CoVid is the first vaccine due after three months followed by flu vaccine between three to six months. The childhood vaccines commence at six months, second dose three months later and third dose three months after that. I would guess you would not be allowed to travel until you were fully immunised however your Consultant would be able to advise you on that.
Hope the above helps.
Best
Lottie
Hi Cath
I didn’t have a bone marrow biopsy after SCT as I had no M spike or paraproteins evident by day 37 so the consultant thought it unnecessary as he was confident that it would find nothing.
I found I had to give a year over to myeloma treatment and recovery. But since that year, so far I’ve had 4 years of good health, much better than I had believed would be possible.
So far there is no evidence that the myeloma is returning.
I had my SCT prior to COVID and was able to go abroad on holiday prior to re- vaccination, but advice may well have changed now.
I hadn’t actually been working for a while as I was spending so much time with elderly infirm parents, but was able to officially retire on the grounds of ill health after diagnosis, so can now draw a pension. However I know quite a few patients who do continue to work, at least part time during treatment. It very much depends on the type of work you have been doing, whether it’s feasible to do at least some from home, and how well you are during treatment.
Quite a few younger patients return to work after treatment, to ‘normal’ life.
There is always a minimum of a month gap between finishing induction, harvesting stem cells and having the transplant. This allows for all the drugs to get out of your system and people generally feel better. A longer period is probably good for us physically, even though psychologically it’s hard, with the transplant looming.
If myeloma cells do creep back during the waiting time, it doesn’t usually matter. As long as the stem cells have been harvested when the levels are as low as possible, the melphalan during SCT should destroy any myeloma cells.
In terms of prognosis, it really is an individual experience at the moment. Even without high risk genetic features, some of us respond better to existing drugs than others, some have more infections than others or more complications from their kidneys or other organs. Younger people diagnosed with myeloma tend to live longer than the broad statistics have suggested, given that the average age at diagnosis is around 70. Added to this all survival statistics are out of date. People currently with myeloma are being treated with newer drugs where absolute survival statistics are not known.
The thing that scared me most when I was being diagnosed was a GP suggesting that I could be dead in 3 months, then the diagnosing haematologist saying that she’d still be seeing me in 3-4 years. Well that was 5 years ago now and I’m still in my first line of treatment, and (apart from a current cold) I’m absolutely fine. Those terrifying estimates were totally inaccurate. I go to a support group where the leaders were diagnosed 17 & 18 years ago, when average survival was 2-3 years, before any of the current targeted drugs were available. So there always have been outliers. There will be far more of us more recently diagnosed generation of myeloma patients who live for these lengths of times and longer, because there are more drugs available, more types of drugs available and more effective drugs available than there ever have been. There is increasing understanding about the differences between myeloma patients so hopefully one day we will get more specifically targeted treatments, which really could cure at least some of us.
I too was a gardener, but couldn’t garden when I was in treatment as I felt dizzy whenever I bent down. Even in those days I did enjoy being out in the garden, seeing nature and the changing seasons/plants even if my garden wasn’t at all manicured.
For the first year after SCT I was told to be very careful, initially not to handle soil or to prune things and I still use gloves when in the garden. We reduced the amount of grass to cut regularly by increasing a wildflower patch (which just needs one cut a year) and have left the top of the garden ‘wild’, which allows wild animals to use it (wildlife cameras show that muntjac deer, foxes, badgers and one particular cat regard this as their territory)
But for the past three years I’ve been able to get outside and to potter again in the garden, growing a few veg, and enjoying gardening again. I think it’s a really good activity for those of us with myeloma, a distraction from health issues, especially since social activities and even shopping have to be thought through due to the Covid risk.
It’s just such a pleasure to me being out in the garden, with fork in hand or a cup of coffee.
You will get back to gardening one day, even if for a while you have to enjoy it in a different way.
Best wishes, Jane.
Thank you for your last post Jane. It was really good to hear of yourself and people in your support group doing so well. I find it very reassuring to hear about people who have gone several years in remission.
Liz
Dear Liz, Lottie and Jane,
Thanks you so much for taking the time to reply to my questions, it is invaluable to hear real life experiences.
Jane, your experience of discussions around prognosis were particularly awful! Top gardening tips, thank you.
Lottie, the immunisation procedure given to you seems very comprehensive… I do hope travel is possible before all complete as it sounds as if it all takes about a year? That was reassuring that you felt well enough to work between induction and STC.
Liz, you had a long wait for STC after harvesting, must have been difficult!
I am finding the whole adjustment difficult- from working to being off sick – while not feeling desperately physically ill , but not functioning normally either! The steroids ave really been awful and were reduced last week as I was becoming progressively more manic with only a little few hours sleep for 3 days, then crashing for 3 days…one normal dy
Cut myself off!
So a rollercoaster with the steroids.
I may look for a support group, that sounds like a good idea too.
Thanks for you helpful sharing of you experiences.
Best wishes
Cath
Ive been finding this string really helpful in reading different experiences. Ive just completed week one of second cycle and i must say i didnt expect to be feeling quite so awful with the DVTD. Shaky, lacking energy … it hasnt helped that ive been on antibiotics twice for temperature spike and then elbow infection. Im still relatively active, trying to get out walking for 40 mins a day but today was bad day – spent most of it in bed. Guess my main question is does it get better or just worse ? Maybe need to lower my expectations …
Hi Cath,
A couple of months ago I went back on to Chemo after a 3 year remission. I found it tough at first, but as time went on, the impact reduced. I don’t know if I was building up a tolerance to it, or if my body was just getting used to it, but now it doesn’t bother me as much. The usual side effects are still there, they are just not as significant as before. Stick with it and hopefully, the severity will reduce, but as always, if you have any concerns, please discuss them with your medical team.
regards, Tony
Forum volunteer and peer buddy
Hi everyone,
I haven’t been on the forum for a long while. As you may recall I lost my brother in law very suddenly in January and my sister had Stage 4 Lung Cancer. Unfortunately my sister’s treatment stopped working in April and she had another treatment after that which also failed. The cancer spread to her brain and lymph nodes. She was admitted to a hospice end July for pain management but never left the hospice and sadly passed away on the 28th October. My husband and I visited the hospice everyday except for a couple of occasions, so my recovery was on hold. So it has been a very tough year.
After my STC my abnormal cells were too small to quantify. I was started on Lenalidomide in April as apparently that is the new protocol after STC in Scotland anyway and a few months later there was no evidence of Myeloma in my bloods and hopefully will continue that way for a while. Sadly, I was unable to bring myself to tell my sister my result as didn’t think that would have been fair, I do know she would have been happy for me.
I have had all my baby vaccines and due for the non live Shingles in January.
The PN in my feet have not been too bad, I have had the odd day when the feet are burning but it doesn’t last long. Bathe them and cream them. The consultant took me off Lenalidomide for a few weeks to see if there was any difference but there wasn’t. Oddly enough the feet started burning after I had the CoVid jabs and booster!
I cannot believe that next Friday will be a year since I had the STC.
I hope everyone is doing well.
I wish everyone a Happy New Year when it arrives.
Best wishes
Lottie
What a traumatic year for you Lottie.
I hope 2024 brings you good health and opportunities to live a quality of life that were just not possible this year.
Despite missing your sister & brother in law, you will benefit from not having to live with enormous levels of stress.
I hosted Christmas this year with 3 families, I was the only surviving mother- the other two mothers, both in their 60s like me, were diagnosed with serious health issues after me, and died 2 & 3 years ago. It really made me appreciate that there are worse diagnoses for many of us with Myeloma.
Happy New Year, and many more to come.
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