[CathyAnn]

Re: Is smoldering multiple myeloma cancer?

by CathyAnn on Fri Feb 05, 2016 12:00 am

I was just diagnosed not quite two weeks ago. I am a physician myself so I had read a lot about first MGUS (when we thought that's all it was) and then smoldering myeloma. In most medical references, smoldering myeloma is referred to as a "premalignant condition" I asked my hematologist how smoldering myeloma is NOT cancer, and he couldn't give me a satisfactory reply. He compared it to precancerous conditions in the breast and cervix, but those can be surgically removed so it's not a good analogy to me. Then he said if you define cancer as something that will inevitably lead to your demise if not treated, then it's not cancer. But that's not a good analogy either, because many elderly men diagnosed with prostate cancer have no treatment and live for years before dying of something else, and we still say they have cancer.

As a physician, I can't wrap my head around saying it's not cancer simply because you don't have enough cancer cells and they haven't done anything bad to you (meaning no CRAB symptoms yet). I'm in the process of enrolling in a clinical trial, and the consent document refers to it as cancer. And my life is now the life of a cancer patient in many respects – regular doctor's appointments at a building that says "cancer center" at the desk, regular tests to look for progression (and worry about them every time), medication (if I am in that arm of the trial), and of course, every time something new hurts, I'm going to want an x-ray looking for bone lesions. To me it's still cancer, or maybe "cancer lite."

I'm trying not to get too hung up on whether they officially call it cancer or not, it's just semantics, IMHO. But the next time I go to a hockey game where they're raising money and ask all the cancer survivors to stand up, am I going to stand up? Absolutely.

[Restlessrebel]

Re: Is smoldering multiple myeloma cancer?

by Restlessrebel on Fri Feb 05, 2016 1:34 pm

Hi CathyAnn,

It is a little frustrating that the doctors cannot get on the same page as to whether it is cancer or not. I asked the question originally because my family asked me if they diagnosed me with cancer, and I researched it and saw so many different views from so many different professionals. I said I have no idea.

Someone else brought up an excellent point regarding life insurance. It is full disclosure, of course, and you will most likely be denied insurance for having "cancer," even if you are in the MGUS or smoldering stage.

I am with you. I have been going to Cedar Sinai to the comprehensive cancer center every 3 months since September 2012, originally being followed for MGUS until last week when I got my bone marrow results. I should change my sign on name from Restlessrebel to confusedasheck!

Take care of yourself.

[JPC]

Re: Is smoldering multiple myeloma cancer?

by JPC on Tue Feb 09, 2016 7:30 am

As CathyAnn has mentioned, there is so much complexity to multiple myeloma, a relatively rare condition itself. There are numerous sub-types and nuances, with different prognoses for good (or poor) outcomes, that the question becomes semantical and near impossible to pin a simple definition.

On a practical level, I recall a myeloma specialist (I believe it was Dr. Lonial) saying in regard to smoldering myeloma that there are two general categories. There is a subgroup that advances slowly, where if you reach 3 or 4 years, you will probably reach 10 to 15 years at the smoldering stage. There is another group that blasts through smoldering in one to two years to active multiple myeloma.

My wife and I were not very well researched at the time she advanced from MGUS to smoldering (probably 8+ years where we knew it was MGUS). We relied somewhat on very general stats that it was 3% a year, and were hoping not to deal with it for another 15 years or so, but she blasted through smoldering multiple myeloma to active multiple myeloma in about a year.

That was about 18 months ago. Since then, the amount of clinical trials actually treating smoldering has increased a great deal. So, not a perfect definition, but if you are in the slow growing arm of smoldering, it seems to be its not yet cancer. If you are in the fast growing, it very well may be a cancer at that time. They don't have a test to predict that for sure yet, but I think that would be an important thing to come up with. Rgds

[CathyAnn]

Re: Is smoldering multiple myeloma cancer?

by CathyAnn on Fri Feb 12, 2016 2:26 pm

I had sort of an "aha" moment when I was talking to a friend about this yesterday. I think for most people without a medical background, calling it cancer but saying that we just watch it is hard to wrap your head around, unless you're talking about an elderly person with clearly a slowly progressive problem where the treatment is worse than the disease (like very elderly men with prostate cancer). And now that we know that the genetics clearly affect how aggressive the disease might be, it may make more sense to not call it out-and-out cancer unless there are clear signs of high-risk of progression (the "ultra-high risk smoldering multiple myeloma" / "early active myeloma" group). The longer I think about it, the more I think it's really just semantics.

I finally got a copy of the rest of my bone marrow results. The only thing that came up abnormal was a 14q32 IGH translocation. None of the "bad" genetic markers are present (yet). That's good news. Just waiting to find out (today or Monday) if I will be randomized to observation or Revlimid for the clinical trial.

[Hopeful InTheMidwest]

Re: Is smoldering multiple myeloma cancer?

by Hopeful InTheMidwest on Thu Feb 18, 2016 9:21 pm

This is a very confusing topic, whether smoldering myeloma is or isn't a cancer. We asked the doctor this right away, when my husband was diagnosed in early 2015, and she said it was. He too is being seen at a cancer center.

We purchased cancer insurance several years ago and they made a diagnostic lump sum payment. We all know that insurance companies rule the world, so it must be a cancer. Ha!

We see the oncologist every three months and we are very, very stressed before each appointment, but so far she has been pleased with his numbers. We are hoping for the same report at our next appointment next week.

I appreciate all of the information. Thanks so much!

[CathyAnn]

Re: Is smoldering multiple myeloma cancer?

by CathyAnn on Thu Feb 25, 2016 10:25 pm

The more I think about this, the less the uncertainty and ambiguity bothers me. Whether you call it cancer or not sort of depends on what the context is and what you need the definition for. Apparently it satisfies the definition of cancer for this cancer insurance policy. I go to a local support organization for patients with cancer and their families or other loved ones. It's enough "cancer" to participate in their programs. But if I have a friend or family member who won't really understand the nuances and will worry excessively, I have no hesitation in saying that "it's not cancer but they have to watch me closely because it could become a cancer someday." All of those scenarios are true without minimizing or exaggerating the situation.

[Ericabowman]

Re: Is smoldering multiple myeloma cancer?

by Ericabowman on Wed May 18, 2016 6:17 am

So confusing, I agree. I was diagnosed in April with smoldering. Started treatment today with Revlimid and dexamethasone because my kidney function is being impacted.

I often use humor as a way to cope with stress and fear, and was joking with my husband and friends about how, now that I have a little cancer problem, the least he can do is get a vasectomy (because Revlimid ... yikes!) My friend (a nurse) looked at me and said, 'are we calling it cancer? I didn't think it was that progressed.'

Her question gave me pause, because I hadn't really thought about it in terms of not having it. It's been explained to me by my oncologist as 'inactive cancer.' Revlimid is chemo (even says so in big, bold letters on the bright yellow bag it came in today, lest I forget), and I see my oncologist regularly. Kinda seems like cancer.

But I also don't want to make it more serious than it is sooner than it needs to be, or diminish the seriousness of the disease for those who have active myeloma or other cancer and are suffering from it.

The irony is, I feel fine and need to take drugs that are likely to make me feel lousy in order to try and keep it inactive / smoldering. Maybe I'll start calling it 'slacker cancer'. I imagine it as a 40 something in the basement of its parents home, playing video games in the dark all day. Every now and then it tries to get a job (hence the kidney function issues), but nothing really sticks and it falls back to its old inactive, slacker-y habits. I'm hoping it stays down there forever, regardless of what I call it.

Am pretty new to the Beacon as this is a recent diagnosis for me. I love the articles, forum posts, etc. It is so helpful to hear from others who are going through similar experiences and emotions.

~Erica

[Yogesh Shah]

Re: Is smoldering multiple myeloma cancer?

by Yogesh Shah on Thu May 19, 2016 5:26 pm

I was diagnosed with smoldering multiple myeloma 3 years ago at Sloan-Kettering in New York. Since then, I have to go to Sloan Kettering for monitoring every three months. When first told about having it confirmed and clarified that it's an inactive form of multiple myeloma, I asked the hematologist / oncologist (having experience of nearly 30 years), as to when this will become an active one, he stated, "maybe 6 months, a year" and nodded when I told him that I knew of two guys, one of who has it for 13 years, and the other for 5 years! Meaning doctors do not yet know how to predict time for activation.

Therefore, I am inclined to agree with JPC stating that if it is there for 3 to 4 years, it will be the same for 10-15 years! Anyhow, I treat it not as "cancer" but simply as a "stable bone marrow disorder"! I was told recently by a young hematologist / oncologist that with an appropriate drug, my myeloma can be kept inactive for a long period of time! Well, if you go through the FDA and NIH lists of ongoing trials for treatment or new drugs for multiple myeloma, you will see that within next few years or so there is a high likelihood of effective treatments and drugs being available. So, hold on for another few years!!

In any case, I, being over 75 years of age, treat my myelomic condition as a blessing because it will take me out before I can barely walk straight or drive safely and become a burden to my children and the society as a whole (including, of course, the U.S. government!)! I will resist any disabling treatment if it gets activated 10 years from now. I think that spirit by itself allows me to be worry free and enjoy my life fully of whatever is left of it! My point is, accept it with a smile and keep on going because doing so won't hurt you.

[Restlessrebel]

Re: Is smoldering multiple myeloma cancer?

by Restlessrebel on Thu May 19, 2016 6:08 pm

Hi Yogesh, very true. I try not to dwell on it too much. I really only feel like it's cancer when I visit the cancer center for my appointment. Otherwise I try not to think about it.

[Colm]

Re: Is smoldering multiple myeloma cancer?

by Colm on Sun May 29, 2016 8:41 pm

Hi all,

I've just found this site, and glad I did. Everyone is so positive.

I've been a regular blood donor (68 donations) and have been on the bone marrow registry for many years. My blood donation was refused recently (anaemia) and I believe many MGUS sufferers discover the condition this way!? I wonder if there's a link between regularly (I gave every 3 months) stimulating the marrow to replace all the blood cells and the speed MGUS advances to smoldering myeloma?

I went from being told I was MGUS a month ago, one week later an aspirate/biopsy (no CRAB) of 20-30% and I'm suddenly smoldering myeloma.

The 'is smoldering myeloma cancer' is a very relevant question. In my situation it's relative! My elderly parents have been told it's (not cancer) a slight protein imbalance. My friends are like 'Well you are healthy, so it's not that bad!' My wife is distraught. I'm in a really good place with it, ok it does consume much of my waking hours thinking about all the different permutations, but I'm not stressed over it at all. My only concern is my wife and two children, and them having to deal with the grief if I 'depart' soon.

I'm Irish, population 5 million, 220 cases of multiple myeloma a year so it's quite rare. That makes it difficult when occasionally discussing it, combined with the fact that I'm healthy!

I'm 55, and during my lifetime have seen so many other people having to endure so much. And bad things always happened to other people...not me! So if it is my time I'm ok with it.

Sorry for the off topic rant

Stay well & positive