Hi Lewisboy, I was diagnosed aged 60, four years ago and was profoundly shocked to realise that I had an incurable cancer.
I too knew a few weeks before all the test results were in that I had myeloma. For those of us with ” a myeloma defining event” which I suspect your father’s bone pain signifies, the disease is active. Drs look for ‘CRAB’ features, ‘C’ high calcium levels which show that the bone destruction/repair system is out of kilter, ‘R’ renal (kidney) problems which are usually caused by myeloma light chains causing blockages, ‘A’ anaemia which is caused by myeloma cells crowding out the bone marrow so other blood cells can’t develop, and ‘B’ bone lesions causing bone pain & possible fractures. They will also test to determine which subtype of myeloma your father has. Most commonly this is heavy chain myeloma, IgG or IgA but can be kappa or lambda light chain, or rarely a different subtype.
It is significant to know the level of myeloma infiltration into the bone marrow. This is often 60% or more, sometimes over 90% . If it is less than 60% and there aren’t any CRAB features then treatment often isn’t started, and a watch and wait strategy employed.
Multiple myeloma has earned its ‘multiple’ prefix in numerous ways, but one is the number of problems it can cause, hence patients need to go through a barrage of tests as Lottie has said, to identify problems caused.
All myeloma is caused by genetic mutations. Some of these are statistically more difficult to treat than others, so genetic testing is done on a sample of bone marrow to check whether we have any of these higher risk genetic features. Another sample of bone marrow looks at the different proteins found on the myeloma cells, which helps assess prognosis for an individual patient (& in time may suggest he or she might respond to specific non myeloma drugs).
A general health check is done to ensure any other health problems are understood before treatment is planned.
Otherwise healthy patients, esp those under 70, usually have a 4 drug regime of targeted myeloma drugs. Although we often call them ‘chemotherapy’ they are more specific. Fairly recently it was realised that patients live longer if ” the kitchen sink ” is thrown at the myeloma from the start, hence the 4 drugs with different mechanisms of action. Myeloma UK has good information about these (Daratumumab, Velcade, Thalidomide, Dexamethasone).
Usually patients have 4-6 cycles, either until the myeloma cannot be detected, or until responses have tailed off and only a small residual amount if myeloma can be detected. Each cycle lasts 28 days, so roughly 4-6 months although sometimes this is extended if a patient needs to change drugs. Often the drugs plus the frequent trips to hospital that they entail, take a toil on patients stamina. There can be side effects such as shingles, peripheral neuropathy, dizziness, fatigue but some patients manage to work throughout treatment.
Even if myeloma is not detectable after the 4-6 cycles, further treatment is needed because the myeloma will still be there in the bone marrow, either at a tiny active level, or dormant. In UK it is usual to have a stem cell transplant at this point, using cells harvested from the patient themselves at the end of treatment. The method of harvesting means myeloma cells are unlikely to get through, and it is safer for patients than using donor cells. It takes about 2 months to have the harvest & additional testing before having the transplant. All stem cells in the body are destroyed with a high dose of melphalan, a chemotherapy drug, then the patients stem cells are reintroduced. The immune system is extremely compromised for about a fortnight,vans it usually takes about 3 or 4 months to recouperate. Until recently all stem cell transplants were done in hospital, now some are done in flats on hospital campuses with beds available should the patient need it.
The speed at which patients are informed of their progress varies between hospitals. The hospital I am treated at uses an online patient portal so I get to see my results- good and bad-before my haematologist, some within hours of the blood test. It usually takes 3 or 4 days for the electrophoresis test which shows an ‘M spike’ if myeloma is present, to come through. I have always had my test results on the day of my consultation, but in some hospitals they are given a month in arrears.
If the treatment is working (which it usually does), the myeloma level will start reducing straight away. Some patients have a slow and steady decline, others a rapid one.
No one is really going to be able to predict your father’s possible remission time, not only because myeloma is such an individual disease (because there are billions of possible genetic changes), but because the treatment pathway that he is on is so new. It is known to give longer periods of stable disease, remission, than the old 3 drug treatment, which with maintenance after SCT gave an average of 58 months before first relapse.
I hope that your father does well, we really are on the cusp of this disease becoming a chronic, treatable condition. Do not give up hope that your father will be with you for a long time. There are a few patients, without the benefit of modern treatment, who have lived for 20 years. There will be far more who will live long lives now.
Hi Mark
For many of us life does get pretty much back to normal once the myeloma is inactive, which for many of us is after SCT.
The person who leads our local support group was in a wheelchair for her first six months after diagnosis, but for the past 18 years has been able to dig her allotment, lead walking groups, have active holidays.
This disease isn’t a one way street, it ebbs and flows. At the moment you are taking a combination of serious drugs, and have a regime that is dominated by hospital visits. Even without the myeloma the drugs would take a toll on what you can do …. But things do get better, often much better, beyond expectations.
Dear AC, I think you’ve hit the nail on the head about the side effects of stem cell transplant. The problem is that we have to be told everything that CAN go wrong. Most of us do have some of these listed side effects, but most of us don’t get all of them, or the more serious ones. SCT doesn’t work for all of us, but neither does any particular drug.
Statistically SCT works and extends a period of stability (which we often call remission) so most of us in the UK will agree to it.
For me certainly it was much easier than I’d imagined. The fear was much worse than the reality. I had nasty diarrhoea, felt a bit of nausea and was sick 3 times. I was totally zonked out for 3 days, days 9-11 and caught a virus which meant I had to be readmitted for 5 days, within hours of being discharged on day 14. However I felt pretty much recovered by day 60 and have had 3 1/2 years of stability since. Two friends had immediate severe reactions to the melphalan, being unable to lift their heads without nausea or sickness. Their recoveries took longer than mine, but they too have had in excess of 3 1/2 years of just about normal life since.
Another friend had no side effects at all apart from hair loss and a level of fatigue (although the drs apparently said they’d never seen this before).
I had a phone call this week from another friend who was then on day 5 after transplant, feeling tired & with a metallic taste in his mouth, otherwise fine (although days 7-11 tend to be the worst). He said his Dr has said new prophylactic drugs are given now so patients shouldn’t have the worst of side effects any more. That doesn’t mean that all patients get a Complete Response, that is still a bit of a gamble, but some patients without a Complete Response go into an MGUS like state of stable myeloma levels,which can last many years. I hope this helps.
According to Cancer.net
“People who have been exposed to radiation or to asbestos, benzene, pesticides, and other chemicals used in rubber manufacturing may be at higher risk for developing myeloma. People often exposed to wood products, such as carpenters, furniture makers, and paper makers, are also at higher risk”
This suggests that there may well be a correlation between your husband’s diagnosis & that of his colleague. However this may be impossible to prove. I know two immediate next door neighbours who were both diagnosed with myeloma,& have heard of a husband and wife who both have the disease and of 7 myeloma patients who use the same GP surgery. These all suggest possible environmental issues at play. But myeloma is still rare, for instance most wood workers will not develop it.
As your husband and his colleague may not be being treated at the same hospital, let alone by the same doctors, it is worth telling your husband’s consultant about his colleague’s diagnosis. At the moment we have no national database to record this type of information but hopefully overtime additional pieces of the jigsaw puzzle that is myeloma will become apparent.
It’s believed that myeloma results from multiple mutations over time, we must all have a number of specific causes or causal events. But once we have myeloma, I feel that the cat is out of the bag, and knowledge about how we developed the disease is less important than identifying successful ways to keep it inactive (or find a cure).
I try not to worry for my children as their father has MGUS and I have myeloma- were we all exposed to something carcinogenic? Instead I concentrate on things I can do something about. But you will have to make your own decision.
Thank you for updating us Sparks, and it’s good to hear that you (like me) are having a relatively straightforward experience.
On day 12 I woke up knowing that I felt a little better, that total exhaustion that is felt from day 9 had gone, and hour by hour I could literally feel myself getting better, so that by early afternoon I was euphoric. Even though I ended up with a readmission for a few days, I knew the hurdle was cleared. I hope your neutrophils return soon and you will be home shortly.
Hi Alex, I have emailed you.
Jane
Hello Bumblelion,
I’m sorry that you’ve been left in this limbo state, it is very stressful to be left in that way. If you haven’t seen it already, Myeloma UK have some downloadable information about so called Smoldering Myeloma, this intermediary stage that your husband seems to be in.
My understanding is that Smoldering Myeloma is myeloma, is cancer of the plasma cells in the bone marrow, but that it is at a comparatively low level so that your husband wouldn’t currently benefit from treatment. If there are no other symptoms, treatment is recommended when infiltration is 60% or more of the cells in the bone marrow. 30% or 60% sounds horrifically high, but some of us have over 90% at diagnosis.
Myeloma cells are non functional immune cells that have become immortal, they reproduce but do not die, so the problem is that they can crowd out healthy blood cells in the bone marrow. They can also cause damage to kidneys and affect various processes in the body, most significantly weakening bones through the development of lesions.
Therefore it’s important that your husband’s level of myeloma is monitored more regularly than he has needed previously, to ensure no physical damage is done. There are patients who live with smoldering myeloma for many years (I’ve heard of one who has ‘smoldered’ for 18 years so far) but many need treatment within a few years and a few within months.
At the moment, because myeloma treatment doesn’t cure the disease, treatment isn’t given unless myeloma is symptomatic. There are new and more effective treatments in the pipeline so this may change in the future.
The problems that your husband needs to watch out for (as you probably know) are so called CRAB features, high calcium levels, renal (kidney) problems, anaemia/fatigue & bone pain .Myeloma patients are particularly at risk of spinal lesions & fractures & rib lesions & fractures, so if your husband has pain, it should be checked out. Some patients have had better experiences in this regard than others, some of us have had to learn to be persistent.
The whole point of diagnosing patients with this early cancer (smoldering myeloma) is to be able to treat them at the precise time that they will benefit most, and I hope that’s what happens for your husband.
Hi Zainab, welcome to the forum and to the unwelcome world of myeloma.
The RADAR study as you know is looking at more personalized treatments for myeloma. In the UK at the moment all myeloma treatment follows a set protocol determined by NICE. It isn’t a poor set of treatment options by international standards, but many of us feel a more personalised approach would be better for some of us, especially those who have less favourable responses to standard treatments, but perhaps ultimately for all of us since myeloma is a particularly heterogeneous disease, and there are, perhaps, countless different variations.
It’s very difficult being asked to take part in a trial when you have only just been diagnosed with a disease, and you are on a steep learning curve about the condition and how it is going to impact your life.
However you are about to embark on what is likely to be the most important myeloma treatment, the first one.
People taking part in myeloma trials have access to the very latest drugs, and are monitored by very experienced clinicians. The drugs will have been tested initially on myeloma patients who have no other treatment options, after becoming refractory to all other myeloma drugs, so you can be confident that the drugs used in the trial are known to work well against myeloma.
Taking part may, or may not help you personally, but it is very unlikely to give you a worse outcome than the standard treatment.
From what I’ve read, RADAR trial participants will be given induction treatment comprising of 5 drugs. The current standard is 4, when I was diagnosed in 2018 it was 3, before that it was 2. It’s now known that average ‘remissions’ are longer the more drugs that are thrown at myeloma at the start of treatment, whereas a few years ago it was thought that it may be better to hold some back for treatment later on. Overall survival times are improving, and that’s down to these newer drugs, and better combinations of them.
Whether or not to take part in the trial is a personal decision. After finding out as much information as possible, you must go, ultimately, with your gut feeling on what is best to do.
I’m really pleased for the myeloma community that trials like this are taking place, but participation is voluntary!
Hi Dave
I think we all learn that we greatly benefit from advocating on our own behalf, and if our gut feeling is that something is wrong, or something needs to be done, then we are usually right.
Sometimes you just need to make a fuss, the squeaky wheel gets the oil and all that.
There is no reason to put up with pain that isn’t getting better. Shout loudly!
Jane
Hi Lottie,
During my induction treatment (which was velcade, lenalidomide & Dex, so a bit different from yours) I experienced tingling in my feet. My consultant felt it was caused by the velcade and stopped the drug temporarily then reduced the dosage. A while later the same thing happened again, tingling toes, and he further reduced the dosage so that I ended up on 50% of the standard dose of velcade. Nevertheless my paraproteins continued to go down and although they were still there by stem cell transplant. However I had a Complete Response (ie no apparent paraproteins) by the end of the stem cell transplant process. I’ve always thought it seems odd that there is a standard dosage for most of these drugs when we can be such different weights etc.
I have not had any further trouble with neuropathy so far.
My neutrophils bounced around a fair bit during treatment, I think the time during the cycle that the blood tests were taken perhaps had a bearing on this.
If you are unsure what blood tests are being done, you can always ask the phlebotomist doing them to tell you . I needed thyroid tests too & sometimes these weren’t on the system so I got used to asking, or ringing the myeloma nurse before I went to ask for them to be put on the list. Although the phlebotomist can’t do tests without authorization, if the test isn’t on the system he or she can ring the myeloma team who can authorize it (at least where I am treated).
Thank you for the update JoJo….
and I hope that your mother is discharged from hospital properly soon.
Unfortunately it’s not uncommon to be given inaccurate and alarming information initially, or at least that was my experience too. However once I had a designated myeloma expert consultant, this stopped and I’ve been able to have complete confidence in the information I’m given. I hope that’s the case for your mother. If not, it is worth investigating whether it is feasible to get a second opinion appointment from a regional hospital (who will be treating more of us myeloma patients).
Some myeloma patients do continue to have a more or less constant level of paraproteins after treatment, almost like MGUS, the pre myeloma condition. For some this remains stable for years, so I hope that is the case for your mother and her appetite and general health now improves.
Good morning Jolly Northerner
It’s always profoundly shocking to get this diagnosis, and easy to worry that the damage we have at diagnosis will be permanent, after all we are told that this is an incurable condition. However this isn’t true. As treatment progresses and the myeloma burden reduces, our symptoms usually significantly improve. (During treatment we may get other side effects of the treatment itself which can affect quality of life, but these are mostly transient although pretty consuming at the time).
I found I had to moreorless give a year up to treatment, induction therapy followed by stem cell transplant, but for the three years since have enjoyed a near normal quality of life, far from what I feared. I feared “treatable” in myeloma terms meant maintaining a steady state, but it really means very significant health improvement.
I did not have the lesions & bone damage you are experiencing, but one of my friends, who after diagnosis 18 years ago, was in a wheelchair for 6 months, is now leader of a local walking group and digs her own allotment. Mobility does slowly improve during treatment.
I wish you well during your treatment & that you can soon see improvements.
Jane
My taste buds were definitely affected during induction (velcade, lenalidomide, Dex) and even more so during the stem cell transplant process. I often had a metallic taste, dulled taste and I craved spicy food. My taste went back to normal once I was just on low dose lenalidomide maintenance – although I still eat a lot of spicy food, more than I used to.
I’m sorry that you’ve had this set back Peter, some one I know very well experienced the exact same thing. He’s just finished another course of treatments, hopefully this time the stem cell transplant will go ahead as scheduled in a few weeks time. N
Many of us with myeloma have hurdles of one sort or another prior to transplant, another consequence of this being such an individual disease.
I hope that you have a good response to whatever treatment your doctor plans, and that you manage to enjoy the summer rather more than you would have done had your transplant taken place.
Hi Dave, welcome to the forum and to the myeloma community, even though you’d rather not be here. If you scroll to the bottom of the heading that you want to post in, you will see a box to write a heading for your post . You need to look further down the page than you got, I suspect.
I look forward to reading your post,
Mulberry
