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
Hi jojomeddgooglemail-com
Which treatment is your mum on, and how old is she/what are the dr’s longer term treatment plans?
For those of us under 70 often the plan is a stem cell transplant after between 4 & 6 rounds of a combination of 4 drugs, Daratumumab, velcade, thalidomide and dexamethasone. Although some patients manage to keep working, many of us do have side effects which adversely affect quality of life to a greater or lesser extent. However once we have got through this treatment, & then the stem cell transplant, we return to much the same life we had prior to myeloma with minimal side effects.
For older patients, and those with coexisting serious health problems, the plan can be continuous lower level drug treatment. In this case it is really important that side effects can be managed so that patients don’t have the quality of life issues that your mum had been experiencing.
I hope that now your mum is in hospital that her drugs will be tweaked to make them more bearable. I think a good proportion of us will have needed them adjusting for one reason or another, I certainly did.
I hope that your mum is feeling better soon.
Welcome to the forum k.
There are many conditions and complicating factors which feature with an individual’s myeloma experience, most of which are rare: known about but rare, within a disease (myeloma) which is itself rare, (or MGUS which is less rare. )
Guillain Barre syndrome is one of those, so TBH it’s unlikely that any of us will be able to answer your question, although it’s possible the Ask The Nurse service will, or message your consultant to ask.
Sorry to read that you have had to wait a long time for your actual diagnosis kenb. Sadly that is not uncommon for myeloma patients as many symptoms are non specific, and myeloma can affect us in different ways. I found Myeloma UK & the Ask The Nurse service very helpful in understanding the disease & treatment in the early days. Although it’s terrifying news to be told that you have an incurable cancer, the reality is that it is highly treatable for most of us, and there are increasing numbers of patients living with myeloma for 10, 20 years and sometimes longer. I would have been far less traumatized after diagnosis if I had realised I was likely to be as well as I am 4 years later, when to all intents and purposes I am absolutely fine. I found that a year was taken up by treatment & frequent hospital visits, but since then, for the past 3 years I have been very well, with minimal consequences from the myeloma. Keep hope alive & best wishes for your treatment getting the myeloma under control.
