Welcome to the forum stressed (good name for a MM patient)
It’s good that your myeloma treatments so far have been pretty benign, and the reality may be that you continue like this
All Myeloma patients are terrified of their first stem cell transplant because doctors are obliged to tell us all common side effects, and the less common ones too.
The reality seems to be that we all have at least one side effect- hair loss. But a few patients have no other side effect at all. (Eg a member of our local support group 18 months ago) and having gone through the expert, many MM patients are prepared later to go through it for a second time .
The melphalan we are given destroys all newly emerging stem cells in the body. Gradually over the first 5 days or so we loose the existing stem cells and can have side effects such as a sore mouth (mucositis) and diarrhoea. Making your mouth extremely cold by sucking on ice during the melphalan infusion (& a bit before & afterwards) can often avoid the mucositis and regular use of mouthwash also helps.
The trouble is that our doctors are obliged to inform us of all the common and less common side effects, which can and does scare patients, especially when warned that it can cause death- but if you ask your doctor when the last patient died during SCT, at your hospital or elsewhere, it is likely to be a long, long time ago . In reality patients are warned of this risk when undergoing all operations too, but we all know people who have safely come through operations, so we can put the risks in context. it is much harder for patients having SCT because we haven’t experienced people we know going through the procedure.
Although most patients do have some side effects, we do not get ALL of them, and most are relatively short lived.
Most patients can’t avoid a certain level of diarrhoea but it’s usually not debilitating.
Nausea is common but is well treated with antiemetics. Some patients pick up infections, but these are treated immediately.
I was very fearful of SCT myself, and had seen another patient who had been extremely nauseous, which I imagined I would be. However my experience was nowhere near as bad as I imagined. I did have diarrhoea but little nausea, no sore mouth, significant fatigue (so I slept alot) and I picked up an infection which wasn’t serious. In all I felt tired but ok for the first 5 days, and on day 12 I woke up knowing that I was over the worst.
It put me in Complete Response, where I’ve remained for the last 4 years. So was it worth it? For me it most certainly was.
Many patients are now able to have SCTs outside hospital ward stays, either from hostels/hotels or from home if they live locally. I honestly think I would have felt better if this had been an option for me 4 years ago when I had my SCT. Although patients can always be admitted if they are poorly, by no means all are, which may help put the risks of being ill into context.
I hope you find the experience straight forward, and more importantly still, effective!
Best wishes
Jane
I am sorry for your loss Flora22.
Your father’s illness and death were terribly short and shocking, made much more difficult to process because of the pandemic and being unable to be with your father.
I wonder whether the PALs team at his hospital might be able to find out for you information about the progress of your father’s illness and his treatment to give you some closure?
Even prior to the pandemic there were (& still are) some patients who do not live very long at all after their myeloma diagnosis. Sometimes these patients have other serious comorbidities and perhaps their myeloma diagnosis has been recognised very late.
I am sorry that your father did not experience the benefit of diagnosis, and that you are now left without him, and without closure.
I’m sorry to hear that Lillipops. It’s worrying enough heading into stem cell transplant, without then finding it is potentially delayed. One of my other myeloma group friends had exactly this experience, a sudden and unwelcome rise in paraproteins, last year (higher than yours!). In his case he returned to treatment for a few cycles before finally having the SCT (with a much shorter period between ending treatment and having the SCT that time).
He’s now happily over the transplant hurdle, and has started maintenance. (& planning holidays)
SCTs are done routinely at the regional centres and your transplant hospital will know what to do to get you back on track. I hope your scans next week will be reassuring & you’ll be admitted next week.
You’ve had far more than your share of twists and turns in your myeloma “journey” already, I hope things are easier from now on.
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.
Hi Bobbie
My daughter and I enjoyed a zoom cookery course together but far apart so to speak. The one she chose, Migrateful, was very good, but I think plenty are available online.
If you search for zoom courses online you may find lots of options. Some are Create & Bloom Workshops, Craftcourses.com, ClassBento.co.uk.
I haven’t tried them all but did really enjoy a flower arranging one, but can’t remember who ran it.
Another thing my daughter has done was to buy kits occasionally when we were able to physically be in the same place, such as air dry clay & paints. That gave us a good giggle.
It is certainly good for people with myeloma to get the opportunity to forget about the disease sometimes, crafts certainly helped me.
It’s now 4 years since I had my stem cell transplant, nearly 5 years since I was diagnosed, and my myeloma has been quiet and stable (“in remission”) since I had the stem cell transplant. I have to be a bit careful about not getting exposed to viruses (like wearing a mask in airports and in planes and I only go into shops or restaurants on special occasions,) and my energy levels drop in the evening, but I feel way, way better than I had expected to when I was diagnosed, and I hope this is your mum’s experience too.
I hope her stem cell transplant goes smoothly.
Best wishes
Jane
Hi Bobbie
It is always a terrible shock to have a loved one get a diagnosis like myeloma.
When you first get the news it is normal to be totally preoccupied and devastated by it.
However although myeloma isn’t curable, it really is treatable in most cases, including your mum’s. (I know because she must have responded well to treatment to be having a stem cell transplant soon). This is likely to mean that she will return to next to normal health once she has recovered from the stem cell transplant, and she may remain stable and very well, so that people who don’t know her well will have no reason to suppose anything is wrong, for years, perhaps many years.
The treatments available for myeloma patients has been improving rapidly over the past few years. This means that survival statistics will be better than ever, and certainly better than internet articles suggest or even doctors who are not myeloma experts say. The patients who started my local myeloma support group were diagnosed 17 & 18 years ago now, before the current drugs were available. There will be many more of us alive in 17, 18 years time now because we will get access to more lines of treatment and to more effective treatments.
When I was diagnosed I just enjoyed spending quality time with my daughter, occasionally we did online courses together- even when we were not physically together. If your mum is interested in crafts or cooking there are lots of options. PM me if you can’t find them.
My daughter occasionally came with me to appointments if my husband couldn’t,or to give him a break, which I found helpful. It’s always helpful to have an extra pair of ears to hear information, it’s very easy to miss some of what is said by our health professionals.
If your mum is the type of person who doesn’t like to research health issues, (eg for fear of what she might read), you could ask her if you could do this on her behalf, filtering positive information to her as you find it.
If you want to get better informed yourself, the best place to start is with the Myeloma UK patient information booklets that can be downloaded from the website, or hard copies can be sent to you.
All this can be delayed for a bit.
If you were my daughter I would want your number 1 priority to be to get through these last few months of your degree, to try to leave worries about your mum’s health to one side until you’ve completed your final essays and dissertation, revision and exams.
There will be time to deal with the repercussions of your mum’s myeloma after you have graduated, and you graduating will give her a lot of pleasure.
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
Welcome to the forum Nuala. Best wishes for your stem cell transplant, and for your return to a more normal life afterwards.
Sandy123 is right that some UK patients will be able to have CAR-T cell treatment, Bispecific Antibody treatment or other novel treatments from one of the trials currently underway in UK hospitals. But with few exceptions there are comparatively few places in comparatively few trials, and of course not everyone in the trial will get selected for the arm that has the new treatment.
Mich05, you are correct- the route for NICE approval does rely on the pharmaceutical companies submitting requests to supply drugs or treatments to the NHS.
Historically this has enabled NICE to negotiate advantageous financial agreements, which is seen as unfair by many US patients and health insurance companies.
So I suspect that there are various political agendas going on.
It’s always terrifying when we get diagnosed with a haematological disease. None of us expect to face this personally, it shakes us to the core.
No one can live with the level of total preoccupation that goes with new diagnosis. Eventually you will realise that you haven’t thought of MGUS/Smoldering myeloma/ myeloma for a little while, these times will increase in length and frequency.
In time the new reality gets assimilated into our lives and becomes just another facet of who we are.
The CT scan won’t hurt you, the bone marrow biopsy will, but this can be minimised if time is given for the anaesthetic to take effect. If you are worried that the doctor hasn’t given a few minutes, you can ask for gas and air which really has helped me.
The bone marrow biopsy results will be of fundamental importance, giving baseline information about the level of infiltration of myeloma cells, information about the type of myeloma cells present and about which proteins are present. Hopefully you won’t ever require treatment, but if you ever do, it will be helpful to your then consultants to know what changes were present now.
If you have got to have one of these plasma cell conditions, it is by far best to have it diagnosed before any organ damage is done. There is then the real possibility of preventing that damage from occurring.
In Iceland all people over the age of 40 have been asked to have blood tests to check for MGUS, they will then be followed over years to find out how many develop Smoldering or full myeloma. A very significant proportion of the Icelandic population are taking part in this study (called ISTOPMM). Already it has shown that MGUS is more common than had been appreciated, suggesting that previous estimates of MGUS progression have been overestimated.
I hope you get good news after your tests.
Jane
Hi Derek
My myeloma damaged my kidneys to some extent prior to diagnosis. I have IgG lambda myeloma and I understand that lambda light chains, being twice the molecular weight of kappa light chains, are more likely to clog kidney tubules.
My kidney function improved during induction treatment for the myeloma and has stayed stable in the 4 years since.
I have seen reports from myeloma patients who have required dialysis (which I didn’t) that their kidney function too has markedly improved during treatmwnt, although it can take about 3 months. I hope that you too have this experience.
Jane
Hi Jennya
It’s very common that myeloma patients have low lymphocytes, outside the normal range.
It does not seem to reflect response to treatment but seems to be inherent to those patients’types of myeloma. Perhaps similarly many myeloma patients have low levels of their uninvolved immunoglobulins (eg if we have IgG myeloma, IgA and/or IgM being low, known as immunoparesis) .
Hi George
I’m sorry to hear of your FISH test results, although it’s significant both that your consultant considers your overall risk as ‘standard risk’ and that you have had such a markedly positive response to treatment already.
We are just about to enter a new era of myeloma treatments, with CAR-T and bispecific antibodies tantalisingly close. These may change our outcomes dramatically, so it’s important to keep positive as after you complete induction treatment you may not require any other treatment (except low dose maintenance) for years.
In the meantime I hope your results continue as they’ve started, as good as possible.
Jane
What dosage of lenalidomide is your Dad on? When my neutrophils went under 1.0 several times, my 10mg dose was cut to 5mg 21/28 day cycles. I think my platelets were reduced too, but I can’t recall the figures offhand. My consultant said the risk of infection with neutrophils under 1.0 outweighs the benefits of the maintenance. Lenalidomide can be obtained in 2.5 mg doses so it must be possible to reduce to this level, alternate days, if necessary.
I don’t know what the long term repercussions of not being able to tolerate 10mg maintenance are, but it is what it is and there seem to be a number of us with this issue.
I hope your Dad gets answers soon and a means of raising both platelets and neurophils.
