Hello Colm:
Hope its a very long time you stay smoldering. If it is many years, you will stop thinking about it constantly. The typical "watch" time I think is six months, but you need to be vigilant about not letting that go too long. Just to get the feeling of the trend, I would want to watch it every three months for now. If the trend is near flat, then you could go out to six months. It could be 10+ years or longer in this condition, or all of a sudden, it could start to move fast (the need for vigilance). It took my wife over 8 years to move from about 1.8 to 3.2 g/dL M-spike (18 to 32 g/L), then it started to move relatively fast, but we caught it before any bad effects did kick in.
I would suggest to you to review some of the supplement data for multiple myeloma. There are several discussions in the forum. One in particular is curcumin. It seems to be the type of thing that someone of your age (the same as mine) should take anyway. It is an anti-inflammatory and, in theory, may have to a small degree the same impact of dexamethasone (which does have single agent activity). You will probably have no way to know for sure if it helped or delayed, but in seems to fall into the category of couldn't hurt and might help. I believe that there is no firm clinical trial results on this yet, but it is being studied at MD Anderson.
You should also look for some smoldering clinical trials. I am not knowledgeable regarding the availability of clinical trials in Ireland, but a couple of people have posted that they were considering them. I am thinking of one treatment in particular. Daratumumab is a monoclonal antibody. It has side effects, but those side effects are like allergic reactions, and are believed to subside entirely over time. The reason they just don't treat smoldering is because of the potential long-term side effects of the drugs that might be used. However, because of the side effect profile of the monoclonal antibodies, daratumumab is under study for smoldering right now, and potentially other monoclonal antibodies down the road.
Being a person who had donated blood as many times as you have done, I can see that you are a generous soul, and I sincerely wish you the best. Regards
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Re: Is smoldering multiple myeloma cancer?
Thanks JPC.
Thinking about smoldering multiple myeloma, I haven't told too many people (it's difficult to explain). And even when I do, most people just don't understand. You might as well be telling them you have the man flu
So I'll be keeping my smoldering myeloma to myself in future.
But I have to admit that I've been told that other people I know have cancer, I'd be shocked, feel empathy, and then get on with my life and my problems.
Smoldering multiple myeloma is a bit like Münchhausens; we are only looking for attention.
Thinking about smoldering multiple myeloma, I haven't told too many people (it's difficult to explain). And even when I do, most people just don't understand. You might as well be telling them you have the man flu
So I'll be keeping my smoldering myeloma to myself in future. But I have to admit that I've been told that other people I know have cancer, I'd be shocked, feel empathy, and then get on with my life and my problems.
Smoldering multiple myeloma is a bit like Münchhausens; we are only looking for attention.
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Is smoldering multiple myeloma cancer?
Good morning Colm:
People are different with respect to communications. If you are comfortable with "blabbing," do so and be glad about it. If you want to keep it to yourself, that is fine too, and don't worry what others may think. The American journalist, Tom Brokaw, wrote a book last year. He kept his condition personal until about a year into treatment, and he was one of the most highly visible personalities in media. You might look it up to get another's perspective.
One more thing, not sure of your locale, but you should be sure that from time to time you see, and have on your team, a myeloma specialist that does it 100% of the time. I understand that there are some in Dublin (I recall a couple of clinical studies out of Dublin), but not sure of the hospital. In the major myeloma medical treatment centers, they do tend to have support groups where patients meet and talk about real life issues in dealing with the condition.
Again, good luck.
People are different with respect to communications. If you are comfortable with "blabbing," do so and be glad about it. If you want to keep it to yourself, that is fine too, and don't worry what others may think. The American journalist, Tom Brokaw, wrote a book last year. He kept his condition personal until about a year into treatment, and he was one of the most highly visible personalities in media. You might look it up to get another's perspective.
One more thing, not sure of your locale, but you should be sure that from time to time you see, and have on your team, a myeloma specialist that does it 100% of the time. I understand that there are some in Dublin (I recall a couple of clinical studies out of Dublin), but not sure of the hospital. In the major myeloma medical treatment centers, they do tend to have support groups where patients meet and talk about real life issues in dealing with the condition.
Again, good luck.
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JPC - Name: JPC
Re: Is smoldering multiple myeloma cancer?
Hi Colm,
I'm Irish and a smolderer too. I was diagnosed in January 2015, so I've been smoldering for nearly a year and a half. It's a bit of a head wrecker initially, but as time passes its gets easier. Most of the time I don't think of it as cancer apart from when I go into the hospital each month for IVIG.
Initially I told a few close friends and like you it took the hardest toll on my wife, but we've learned to cope with it.
Hopefully your condition stays stable for a long long time.
Good luck,
MG
I'm Irish and a smolderer too. I was diagnosed in January 2015, so I've been smoldering for nearly a year and a half. It's a bit of a head wrecker initially, but as time passes its gets easier. Most of the time I don't think of it as cancer apart from when I go into the hospital each month for IVIG.
Initially I told a few close friends and like you it took the hardest toll on my wife, but we've learned to cope with it.
Hopefully your condition stays stable for a long long time.
Good luck,
MG
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MG1 - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 15
- Age at diagnosis: 39
Re: Is smoldering multiple myeloma cancer?
Hi JPC & MG,
I'm in Dublin; with just two visits to a haematologist under my belt, and still haven't gone for my first three month check up yet. So I'm a real nube
But I am considering getting involved with a clinical trial.
It's certainly a complicated disease. Most of you guys could pass as consultants the way you discuss all the very technical aspects of myeloma!
MG - IVIG is new to my smoldering multiple myeloma vocabulary. I'll be receiving a copy of all my initial results tomorrow, so no doubt I'll get up to speed soon enough.
Thanks for your advice and comments.
Regards
I'm in Dublin; with just two visits to a haematologist under my belt, and still haven't gone for my first three month check up yet. So I'm a real nube
But I am considering getting involved with a clinical trial.It's certainly a complicated disease. Most of you guys could pass as consultants the way you discuss all the very technical aspects of myeloma!
MG - IVIG is new to my smoldering multiple myeloma vocabulary. I'll be receiving a copy of all my initial results tomorrow, so no doubt I'll get up to speed soon enough.
Thanks for your advice and comments.
Regards
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Is smoldering multiple myeloma cancer?
I was MGUS for 3 years before progression to smoldering. I never took it seriously because I thought of myself as having cancer. I've since adjusted my thinking. As far as I'm concerned, it's all cancer and people need to act accordingly. I sat for 3 years doing the "watch & wait" approach. In retrospect, I wish I had been more actively involved in maintaining my MGUS status with information and supplements.
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KGermaine - Name: Kim
- When were you/they diagnosed?: smoldering myeloma
- Age at diagnosis: 49
Re: Is smoldering multiple myeloma cancer?
My husband is just newly diagnosed with myeloma, but it is still unclear or undetermined if it is smoldering multiple myeloma or active (symptomatic) multiple myeloma. He has a 1.2 cm (1/2 inch) bone lesion on his skull and there are mixed opinions on whether it is caused by myeloma. Currently we are now waiting on an MRI and have a referral to another specialist for their opinion.
I asked the hematologist that question, and his response was most definitely yes, even MGUS is considered to be a bone marrow cancer.
It is definitely interesting to see the different responses and opinions on this subject!
I asked the hematologist that question, and his response was most definitely yes, even MGUS is considered to be a bone marrow cancer.
It is definitely interesting to see the different responses and opinions on this subject!
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Spatlese - Name: Spatlese
- Who do you know with myeloma?: Husband
- Age at diagnosis: 60
Re: Is smoldering multiple myeloma cancer?
KGermaine wrote:
Don't beat yourself up over it. There is no guarantee any of those measures would have prevented MGUS from becoming myeloma. Although an MGUS diagnosis is not a bad time to change a lifestyle if it involves smoking, heavy drinking, or regular exposure to industrial or farm chemicals.
In retrospect, I wish I had been more actively involved in maintaining my MGUS status with information and supplements.
Don't beat yourself up over it. There is no guarantee any of those measures would have prevented MGUS from becoming myeloma. Although an MGUS diagnosis is not a bad time to change a lifestyle if it involves smoking, heavy drinking, or regular exposure to industrial or farm chemicals.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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