This diagnosis is soul shaking for all of us, all the more so if you have young dependent children. There is a Facebook group for under 50s with myeloma, sadly you are by no means alone.
In terms of prognosis, bear in mind that the peak number of myeloma diagnoses occur in the age group 85-89, in which case a survival time of 5 years would be perhaps pleasantly surprising. The average age at diagnosis is getting on for 70. Actually the prognosis for under 50s who are diagnosed is better than for any older age group. Myeloma is more like (& may be) a collection of very rare diseases of the plasma cell, and although NHS/NICE have standard treatment pathways (at the moment) our symptoms at diagnosis and responses to treatments vary widely. The positive thing about being diagnosed now, as opposed to any time in the past, is that there are more new treatments and targets for treatment being trialled and approved, than for any other cancer. There have always been a few patients who have lived for more than 20 years with myeloma, but there will be an increasing number who do now we have access to many types of treatment. Already 14% of myeloma patients in USA have lived with the disease for more than 20 years. The survival statistics that we read online includes the very elderly patient with lots of other health issues 14% of whom die within 2 months of diagnosis, tilting the statistics & terrifying the rest of us, who really do not have
such a dire outlook. Survival statistics are by their nature out of date when novel treatments are available, and we do need to wait to see how we respond to treatment before anyone is in any position to offer a meaningful prognosis. ( I was scared witless by my GP who said I could be dead in 3 months, then alarmed by my diagnosing haematologist who said she’d still be seeing me in 3 or 4 years. I was diagnosed 3 years ago and am in Complete Response (“remission”) after a stem cell transplant 2 years ago and in excellent, pain free health. I don’t know how long this period will last, but I expect to be able to have many more treatments in the future) You are in the world of myeloma for the long haul though and it’s worth having a specialist myeloma consultant if that is feasible, they are found at the bigger regional hospitals. As myeloma is pretty rare, and has numerous subtypes, it is worth asking how many myeloma patients your doctor is treating, as you will benefit from seeing someone who is seeing plenty of other myeloma patients. If in ANY doubt about your diagnosing Dr, you can ask for a second opinion from another doctor of your choice.(You can get information online about haemo oncologists with an interest in myeloma in your area). I am so glad that I did this even though it felt “disloyal” to the diagnosing doctor at the time.
I had anaemia at diagnosis (almost 3 years ago) and symptomatically it worsened during induction therapy. I felt dizzy when I bent down which severely compromised what I could do (even things like cooking). I had a SCT after which the dizziness went completely so that by day 60 I felt better than I had since before diagnosis. It’s only in the last c 6 months that my heamoglobin says I’m not anaemic, but I haven’t had symptoms other than a degree of fatigue, since SCT.
I have always had constipation whilst on Lenalidomide, but can avoid it with careful use of cosmical, a stool softener. Eventually I worked out that I need 3/4 sachet daily in a 22 day cycle, starting the night before the lenalidomide cycle.
I would check this out with your consultant, or the team.
I am treated on NHS outside my area and this has never been an issue for me. I was diagnosed at the hospital in my area but asked for a second opinion at the regional centre which is in a different health authority. I stayed on as a patient in that hospital, so in principle it does seem that we have a choice. Good luck, I hope you can have your new home and your old hospital team.
Firstly congratulations on reaching the point of unmeasurable disease, that’s good news, a major hurdle over. It does make the question of SCT and the timing of it less clear, however protocol in UK is for everyone who is fit enough to have SCT. In USA there has been a move away from ‘one size fits all’ myeloma treatment and it seems that some centres very rarely recommend SCT at all, but offer patients new generation drugs which are not available to us on NHS (On average NHS/NICE do not approve cancer drugs until 12 years after FDA safety approval). USA patients harvest stem cells immediately after induction therapy (immunotherapy myeloma drugs damage stem cell production) but don’t necessarily use them, and certainly not more or less straight away as we have done in Uk.
Some patients can remain with inactive disease for years, others for no time at all. Several USA patients that I “know” have had fairly short periods of inactive disease without SCT, 6-9 months. Currently there is no way to determine which way an individual patient will respond. There can be collateral damage to the bone marrow from SCT, but it does give an average of 30 months of inactive disease without maintenance. Given that lenalidomide maintenance is now available to patients in Scotland and England, average periods of inactive disease will be at least 60 months after SCT. A few myeloma patients have always survived for decades, with or without SCT but these are a tiny minority, an unreal expectation.
I still had a small m spike before SCT so there was no real decision for me to make, and the process got me into a state of inactive disease. I did sustain some damage to bone marrow which has left me unable to tolerate normal dosage of lenalidomide. I had been on a 25mg dose during induction without a problem but after SCT could not tolerate 10mg as maintenance(because it made me neutropenic) so I just have a 5mg dose. I don’t know whether this will have consequences for future drug therapies, but I’m hoping that the SCT will give me a long period of inactive disease. I found the SCT itself much easier than I feared and I felt well by day 60 and went on a physically active holiday on day 102. I’ve had 2 years of good quality health since then and have no regrets about having an SCT, although as I said wasn’t in remission before I went down that route.
I hope you are able to have a full and frank discussion with the consultant at the transplant unit where you would have the procedure done, and I hope your decision turns out to be an easy one.
I hope it turns out I was scaremongering.
Hi user 1203, I truly hope that your mum is offered maintenance. I was told by a consultant that they will have to state on the paperwork how many days post SCT the patient is, and that 100 days is the cut off, so I calculated the date from that. I hope at the moment with appointments being delayed, and the treatment only just approved there is some leeway. For all clinical decisions there is an appeal process if patients feel strongly.
I hope your mum is offered maintenance.
There is such a broad spectrum of ‘normal’ responses to SCT it is difficult to say. However some patients have been exceedingly unwell after SCT (the family of one of my friends was called in to say goodbye) 7 years later she is still here, but wouldn’t have another SCT! I think it can take some months to recover, so don’t loose hope. It is possible to go through SCT with no side effects as someone in our local support group demonstrated earlier this year, personally I had minimal side effects, yet other people can take many months to recover.
Statistically myeloma remains inactive (“remission”) for an average of 30 months after SCT for standard risk patients without maintenance treatment. With lenalidomide maintenance myeloma remains inactive for an average of 60 months (& rising as some of the trial patients are still “in remission”).
Lenalidomide maintenance is not being offered to those of us who had SCT more than 100 days ago but still have stable or inactive disease. This is on the basis that it hasn’t been research tested on such a group of patients. It makes financial sense to NHS, but not clinical sense to me as all other myeloma treatments are given to us irrespective of the time we have had symptoms. Given there are moves to start treating high risk smoldering myeloma, to me post SCT patients seem to be in the same camp.
In the scheme of things there are not many of us patients in this scenario. Those who had SCT before Nov 2017 had the option of joining the trial. Patients who had SCT after Nov 2020 will be offered maintenance. So there are around 4000 of us whose only option to get the drug is to pay for it ourselves.Drastic. However this is an option that some of us have chosen.
I hope the guidelines are stretchable to include patients such as yourself who so recently had SCT, have you contacted your consultant yet? It would be interesting to hear what he or she says.
Its now on the main Myeloma UK website, discussion about it between Ellen watters and Shelagh McKinlay. Its also apparently in the Daily Mail & its definately on Graham Jacksons twitter feed, and in the Pharma Times yesterday.
MM patients in England & Wales who have recently had SCT, or do so in the future, should now be offered low dose lenalidomide maintenance. At long last today it was announced that NICE & NHS have reached a financial agreement with the pharmaceutical company so patients can benefit from this highly successful treatment. I am so relieved, even though it won’t help us who went through SCT some time ago.
Brilliant news today, NHS/NICE have agreed to a draft agreement to prescribe low dose lenalidomide maintenance for mm patients after SCT. It seems it will be offered to all patients who respond to SCT in the future, and I hope to all patients who had SCT during the past few months.
Hi Koalacub
It’s always very shocking to the patient and family when given the diagnosis of myeloma & frightening even when there isn’t a pandemic. The best place for information about myeloma is Myeloma UK, either the information sheets or direct contact with the nurse or other staff, who are lovely.
There are at least a dozen subtypes of myeloma, and it’s thought myeloma is the cancer with the highest number of prognostic parameters.This means that myeloma tends to be a pretty individual disease, with different patients experiencing different symptoms, or degrees of symptoms at diagnosis and during the course of the disease.
However having said that, for most patients it is very treatable, and in USA now 14% of patients live for over 20 years.
When I was diagnosed, almost 3 years ago, I assumed that I was on a slippery slope, that I’d never feel significantly better. However that has not been true for me, and I am now perfectly well for the time being. There are a heartening number of treatments now for myeloma and your father is likely to start on a combination of treatments shortly, depending on any other medical problems he may have. It usually takes around 5 or 6 months (again this is variable) to get myeloma initially under control. About 50% of us then have a stem cell transplant to stabilise the myeloma, often giving a few years (sometimes more) without active disease. The problem is as yet that myeloma does always return, genetically mutated so that the drugs previously used are ineffective. There are a number of new drug types in trials now which may offer those of us in the early stages of myeloma, significantly longer lives.
Myeloma drugs are often called “chemotherapy” by us patients, but they are really much more targeted drugs. They do have side effects, usually, but not things like hair loss, and some of us get through with minimal problems except that the treatment process takes over life for a time.
Your father should have access to a named myeloma nurse who will be able to point your parents in the right direction, depending on you
How old is your father? The average age at diagnosis is around 70, but it’s a disease that can hit at any age, (although it’s exceedingly rare in under 30s.)
One of my friends was diagnosed in similar circumstances to your father and was wheelchair bound for around 6 months. Now 17 years later she leads a physically active lifestyle, long walks daily and looking after an allotment single handedly, no obvious evidence of the damage myeloma did to her spine.
It must be so difficult for you separated from your parents because of the pandemic, but I hope that your dad responds well to treatment (that may include more non drug treatment to his spine) Best wishes.
We have to be told of all the potential problems with SCT, it would be unethical not to warn people. However the majority of us have only have a few side effects, only a minority have many, a tiny minority have serious ones and a tiny minority have none. (Including this year, someone from my local support group….no nausea, sickness, diarrhoea, nothing- I’ve never heard of anyone being warned that could happen!). Certainly whilst the SCT experience puts a few people off repeating it, most of us are willing to go through it again if we get the chance, a bit like child birth?
My SCT experience wasn’t nearly as dramatic as I’d supposed. I was sick 3 times in the course of 14 days, only felt nausea at these times, had an odd appetite but could always eat something. I had complete fatigue days 9-11 so just slept which was alarming for family, but I wasn’t in pain. The biggest nusiance was diarrhea, but on day 12 I could literally feel myself getting better hour by hour, I have never felt so elated. I was discharged day 14, readmitted 2 days later with a virus (HPI) I’d picked up (& ironically sickness) but I didn’t feel ill ill, and in effect I convalesced in hospital for 5 days.
My neutrophil and white blood counts, which were within normal limits prior to the SCT have never fully recovered. I wasn’t expecting permanent damage to the bone marrow, which I seem to have sustained, presumably the melphalan. However I’ve had no infections since the HPI virus, which I recovered from as quickly as someone without a depleted immune system.
