It is important not to despair, many myeloma patients are very poorly at diagnosis and/or during induction treatment. As you’ve probably heard, myeloma tends to be a unique ‘journey’ for every patient, but many patients belie their initial fears or indeed their doctors prognoses. One of the members of my local myeloma support group was in a wheelchair for 6 months, but 16 years later is able to single handedly manage an allotment & walking holidays. Another almost died 9 years ago, her family having been advised to come to the hospital to say goodbye. Several have myeloma which has never completely responded to treatment, but have stabilised to a minimum, stable level. One remained in this state for 9 years before needing new treatment. Some have initially gone through a number of treatments in quick succession before finding one which has worked for them.
I know that the outcome is not good for all myeloma patients, but hope that your dear dad starts to feel better soon and that your mum and dad have managed to speak to someone in their team today, before the weekend.
Best wishes, Jane.
Im sorry that your father (& therefore your family) are having such a terrible time with myeloma at the moment.
Does your Dad have a named myeloma consultant and/or named myeloma nurse? It is normal for us to have both, even if we are not as poorly as he currently sounds. Your mum and dad need advice from his doctor quickly. Although his dr and nurse wont be at the hospital 24 hours, there should be a Haematology team covering 24 hours. Usually on treatment we get given a card with a 24 hour emergency number to call. Check with your mum and dad whether he was given one when he startd on the trial drug, and use it.
If you are unhappy about the response /lack of response you are getting,during working hours ask the patient liaison (PALS) service to intervene on your dads behalf.
The drugs that we initially take to get the myeloma under control can affect patients in the type of ways you describe, but usually dosages can be altered, or frequencies of doses reduced, to make the side effects more manageable, or other drugs used.
I hope things settle down for your dad, best wishes.
I think that our needs for these groups and what we want from them change over time. I found what was helpful to begin with got worrying (esp people I didn’t know dying) or irritating over time and I left certain groups whose ethos didn’t fit with mine and found others (not necessarily Facebook) where I feel a better fit.
It helps me to learn about new treatments and to understand more about myeloma. I get this from a site called Smart Patients Myeloma, check it out if you are interested.
Hi Dave
I think we all feel shocked to the core when we get this diagnosis, and spend the first part of our treatment preoccupied by the disease, the first thing we think of in the morning, and the last thing at night. One day though you’ll realise that you got so absorbed in something else, that you didn’t think about it for a while, and gradually it’ll become part of life,rather than taking it over. The thing I wished I’d realised at the beginning was that I would feel absolutely fine in the future, I’m now 3 years since diagnosis and no one would know anything is wrong with me, in some ways nothing is.
I hope you respond well to your induction treatment, & welcome to this community no one wants to belong to.
I suspect (hope) the draft “no” is a tactic to get a better financial deal with the pharmaceutical company. Unfortunately we patients are not viewed as important individuals by those making the decisions, and historically on average it has taken 12 years from a drug being FDA approved, to it becoming available to NHS patients. However a multitude of new myeloma drugs are coming along, and I think the time frame for daratumumab (approved as 2nd line treatment earlier this year) was remarkable. The UK, largely thanks to Myeloma UK, also has a good track record of running large scale, later stage trials, so a significant number of NHS patients get access to latest myeloma drugs that otherwise would be a few years off.
Im sorry that your dad wont have access to 4 line induction therapy, I know your frustration, I and others diagnosed 2-4 years ago have not had NHS access to lenalidomide maintenance, despite it being a UK trial open to those diagnosed before us, showing its effectiveness. Fortunately that is in the past now, with lenalidomide maintenance after SCT finally being approved earlier this year.
All in all, there has never been a better time to be diagnosed with this disease.
Hi Char Cook It’s not unusual for myeloma to affect the kidneys. Renal damage is one of the key symptoms, along with bone damage, high calcium and/or anaemia.
Your dad’s kidney issues are more severe than mine were (are) but I’ve seen a number of myeloma patients say that they needed dialysis until their myeloma was got under control. Some of those have been alive for over a decade since they were diagnosed. Your dad’s age and previous good health will really help him. Im not medically qualified but I suspect that he will need a different myeloma treatment, that the one he has been on has stopped working. This is not what any of us want to hear, but it isn’t unusual. There are a number of different drugs, some of which work in different ways, and hopefully one, or a combination of these, will get his light chains down again, and his kidneys will start working reasonably again. Its a very stressful situation for you all to be in, but his team will have encountered this problem before.
Its good he’s met some other patients. Doing that settled my mind to a large extent. I was fearful of looking like a cancer patient, whatever that means, and was pleasantly surprised that I couldn’t tell who had myeloma & who was a spouse.
We all have our own way of getting our heads around the disease, for some its research, for some its maintaining as much normality as possible & for some its putting complete trust in the medical team; there is no ‘right’ way. He’s lucky that he has you to do the investigation, from what they say online, I worry that some myeloma patients’ treatment is not in line with latest research (albeit that NICE & similar bodies dictate the framework for NHS treatment in UK)
I don’t think even a myeloma specialist looking at all your dad’s test results would be able to give you a meaningful estimate of his likely response to this first round of treatment, nor to what that would mean in the longer term. It’s most likely to reduce the myeloma burden somewhat. Mine reduced by 20% and I was told that was “good”. I have IgG lambda and the light chains went from 360 I think down to normal range. I too had 6 cycles as my paraproteins were still dropping after 4 cycles, but a stubborn “less than 2 g/l” remained after 6 cycles. With lenalidomide (Revlimid) it’s better to have 4 cycles if possible as stem cell retrieval becomes more difficult the more cycles of the drug.
There are a few patients for whom this standard first line of treatment doesn’t work. In this unlikely senario, there are other drugs that work in a different way that will be used.
In terms of timing, once the stem cells have been harvested, it doesn’t matter when the SCT itself takes place, if there has been a minor rise in myeloma cells these should be killed off by the melphalan.
It’s impossible for you to calculate when your dad will be ready for SCT yet. Sometimes (often) patients need extra time between cycles if they have a side effect, either a physical one or a physiological one. Fairly frequently as you might guess from Rosary & my experience, extra cycles are added at the end.
If your dad still has paraproteins once induction treatment is completed, he will be offered a one off infusion of cyclophosphamide prior to stem cell harvest, to try to zap remaining myeloma cells.
My experience was
24/12 finished cycle 6 (started cycle 1 August)
30/12 cyclophosphamide
8/1 stem cell harvest
4/2 Melphalan
6/2 SCT (allowing extra time for damaged kidneys to filter melphalan)
Hospitals try not to have SCT patients in over Christmas, or at least that’s been local experience here.
Does your father know about local myeloma support groups? There is a list on the myeloma UK website.
Jane
Re ‘risk’. The most significant determinant of risk is whether a myeloma patient has specific genetic abnormalities at diagnosis. We all have some, but the relevant ones, which should be looked for in FISH testing, are multiple gains of 1q, t(4;14), t(14;16), t(14;20) &/or del (17).
These chromosomal abnormalities don’t respond as well to current myeloma drugs as the others.
Most myelomas are IgG, those with IgM tend to have better survival rates, those with IgA somewhat worse, the rare IgE worse still. Some people have Light Chain only myeloma, where kappa light chain myeloma fares better than those with lambda light chain myeloma. In rare cases of non secretory myeloma where no aberrant protein is produced it’s thought to respond well to treatments, but is difficult to monitor. Staging at diagnosis also has a bearing on outcome, with those having the most signs of damage to the bone marrow not surprisingly tending to do less well However response to treatment is also significant. If your father responds to induction therapy, either a slow, steady reduction in disease burden, or quickly gets a complete response, these are ‘good signs’whatever type of myeloma he has and whatever stage he was at diagnosis.
A Complete Response by 100 days after ASCT is statistically significant for longer periods of survival. However there are cases where patients never have a complete response and live for well over a decade with low and stable levels of myeloma with no further treatment (possibly returning to MGUS?).
Some people with seemingly similar myelomas have frequent infections, others non at all, or recover as quickly as healthy people. There are patients who seem to defy the odds, which is why long term myeloma is seen as such an individual experience (& why I believe that hope is realistic)
Your father is not old in terms of this disease, the average age at diagnosis is around 70 and the peak age of diagnosis is 80+. The comorbities older people have, and lower general levels of fitness mean that this is a tougher disease on the very elderly, for whom a 5 year survival might seem positive, whereas it doesn’t for those of us who are younger.
I went onto a no sugar (except fruit) diet, completely cutting out added sugar on the basis that Dex affects blood sugar levels and sugar absorption.
I am the only person I’ve heard of so far who had no side effects from Dex, no mood swings, no sleepless nights etc. In my opinion going without sugar is better than Dex side effects.
In the UK consolidation is not usual practice, (not in NICE protocol) I discussed having it, but had had a Complete Response to ASCT so my consultant thought it unnecessary.
Melphalan is given as a single high dose infusion immediately (a day or two) prior to ASCT. If Complete Response has not been reached during induction therapy, another chemotherapy drug, cyclophosphamide, is given as an infusion about 2-5 weeks previously, after the end of the last cycle of induction.
I also recommend Healthtree. There are two international databases that myeloma patients can put their details into, Healthtree and All4cure. It’s worth looking at these, both can match patients with others with similar myelomas and provide researchers with a sizeable database which hopefully will promote treatments. Neither database involves the patient doing much, if permission is given the UK hospital just automatically passes test results to the database in the same way that they do to the GP.
Myeloma UK are hoping to get a UK database, but we haven’t got one yet.
Hi Sach, I recognise your learning curve!
My myeloma treatment was delayed May -Aug 2018 as I sought a second opinion. During this time I started taking 8g curcumin, quercetin and fish oil using the protocol used by Margaret’s Corner blog & Dienneke Ferguson. My ‘new’ haemo-oncologist was aware I was taking it & was surprised that my paraproteins dropped from 43g/l to 30g/l 4 weeks after I started taking the supplements. I was not taking any myeloma drug, the only drug I was on was levothyroxine (for hypothyroidism,diagnosed along with the myeloma) He asked me to watch & wait. Over the next month my paraproteins went to 38g/l then to 35g/l. I was too worried about developing bone lesions (which I didn’t & don’t have) to continue and asked to start VRd. In hindsight it would have been interesting to wait,& I now absolutely trust him, but that’s hindsight! I’ve gone on using the same supplements since, except for 3 weeks immediately after SCT. I also take vitamin B12 (prescribed) D (now prescribed) & K.
For a while I did not take blood thinners but currently take low dose asprin again. The antiinflammatory effect of curcumin has helped my osteoarthritis and Hashimotos, I’ve had no flare ups of either since. (I had symptoms which were later diagnosed as Hashimotos thyroid disease- an autoimmune problem- when I was diagnosed with myeloma)
I’ve read that there may be 12 subtypes of myeloma, mine definitely seems connected with autoimmune issues. It may be that curcumin is only helpful for certain subtypes?
I did not get a Complete Response (get into ‘remission’ during induction) but went from 60% bone marrow infiltration to less than 2% . I had a Complete Response to the SCT however- within 37 days.
During induction I changed my diet to no refined sugar, mostly wholefood, lots of veg. This has gradually slipped over lockdown & I’m currently readdressing diet & reinvestigating supplements so your post is very useful.
I was taking 25mg lenalidomide during induction VRd in 2018, I was charged just under £5000 a month for 6 cycles. Revlimid costs the same, whatever strength, so that I would be paying the same price now, even though my blood counts can only cope with 5mg dosage on an ongoing basis.
For me the most important thing was getting lenalidomide as maintenance because research shows it extends progression free survival and overall survival. I am so relieved that this is no longer an issue for patients like your dad, who will be entitled to it if he wants it.
I hope that you have some answers soon. If you do have myeloma, try not to despair. I wish that I had realised that I would feel much better after treatment, I had misunderstood that because this is an incurable cancer, that I was on a one way downward spiral, but that is far from the case. I’m three years post diagnosis and feeling 99% fit and well (slight lack of stamina is currently my only symptom). Someone I know was in a wheelchair for six months after duagnisis, but 16 YEARS later goes on walking holidays and single handedly looks after an allotment!
I hope that you get good news after your bone marrow biopsy tomorrow.
If not, do not despair.
We all know the all pervading fear that diagnosis brings, but this state doesn’t last forever.
Try not to Google, much of the information is totally out of date. It is much better to get accurate information from Myeloma UK, both the leaflets and telephone service are world class.
Myeloma treatment is a fast moving, exciting world and there is realistic hope that many people being diagnosed now will live with myeloma as a chronic, treatable disease for many years. Already in USA, 14% of patients have lived with it for 20 years plus, and there are plenty of treatments in the pipeline.
Fingers crossed for you, let us know how you get on tomorrow.
Rosary, how are you getting access to Revlimid maintenance? My consultant (& Myeloma UK) have said that NICE have specified that only patients able to start within 100 days of SCT can have NHS lenalidomide maintenance treatment, on the (pretext) that it hasn’t been trialled for use in patients with inactive or stable disease.
I’m happy to continue to buy (Cipla) also through Nirav Sangoi, (I feel that the Indian drug is extending my life just as much as my consultant is and I now feel some loyalty to Nirav), but I’m interested if some consultants are finding ways to treat the group of patients who had SCTs after the maintenance trial closed and the NICE change of policy a few months ago.
Sachbarnes the prices quoted by Rosary and Yorkshirelad are in line with my experience too.
