This week's poll is about how many myeloma experts you have consulted with about if, when, where, and how to treat your multiple myeloma.
A few clarifications:
First, this question is only for readers who have symptomatic / active multiple myeloma. That is, not MGUS or smoldering myeloma.
Second, by "myeloma expert," we are referring to hematologist/oncologists who specialize in multiple myeloma and treat many myeloma patients at a given time. Please do not count general oncologists or hematologist/oncologists who treat mostly other types of cancer.
Third, you can count any myeloma expert whom you see regularly to review lab work or discuss treatment options, or whom you consulted with during one or more private in-person or by-phone meetings in which they reviewed your medical history/records and gave you an informed opinion about if, when, where, or how to treat your myeloma. Please do not count myeloma experts you may have communicated with briefly in a public manner (e.g., during a Q&A session of a teleconference call) or without them having access to your medical records (e.g. a brief email exchange or these forums).
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers. For instance, why have you chosen this number of myeloma experts to consult with?
Forums
8 posts
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Re: Weekly Poll - Consultation With Myeloma Experts
Am I the only person wondering whether the low number of people who have answered "zero" for this poll question is representative of the typical myeloma patient?
Or do most myeloma patients really consult at least one myeloma specialist at some point while they're being treated?
Or do most myeloma patients really consult at least one myeloma specialist at some point while they're being treated?
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TerryH
Re: Weekly Poll - Consultation With Myeloma Experts
Unlike other cancers, multiple myeloma typically progressess slowly, and its path is somewhat predicatable. I think this gives people a lot more opportunity to do their research and seek out the advice of experts. EJ went to Dana-Farber midway through his induction therapy as a reality check to make sure we were on the right path, and that a SCT was the right choice for him. He's in remission now, but I suspect we will seek out an expert's advice again when his M-spike starts to rise again.
Lyn
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Weekly Poll - Consultation With Myeloma Experts
Hi Terry,
I think the low number of 'zero'...is indicative of the type of patient population that frequents the forum. i.e. 'don't take no for an answer' , type A's, ....so the forum will have higher numbers of folks who went for a second consult. Also, multiple myeloma experts are not a dime a dozen in many area of the country which could make it difficult to get a consult with one.
I suspect you are right though, that many patients find themselves so overwhelmed with the diagnosis and hearing the word incurable along with the prognosis that they do not have the emotional willpower to look further than the community oncologist their primary doc may have recommended. Folks are just stunned and reeling from the diagnosis, what it means and then the battery of tests, acronym words and tests ALL create a sense that the person is so out of their depth until they do not wish to look for another doctor. At least he is a familiar entity in the strange journey of the unknown you have just been thrown into. That familiarity is like a safety net.
My experience also was that the doctor is recommending specific treatment NOW. He is not telling you that you can wait to start therapy. You really have to be a well informed or highly confident individual to buck that recommendation and look further initially, especially if the clinician is a knowledgeable compassionate human being. Most folks don't learn until much further down the road how rare multiple myeloma is as a cancer, such that they only represent 1-2 patients in the oncologists practice. That's when they may start to look around as they recognize how the word incurable is not a good thing combined with a doctor who has little or no expertise in that area, even if they are a great oncologist, the doctor simply does not see enough folks with myeloma to warrant remaining under their care.
So, I would say yes, to your last question.
I think the low number of 'zero'...is indicative of the type of patient population that frequents the forum. i.e. 'don't take no for an answer' , type A's, ....so the forum will have higher numbers of folks who went for a second consult. Also, multiple myeloma experts are not a dime a dozen in many area of the country which could make it difficult to get a consult with one.
I suspect you are right though, that many patients find themselves so overwhelmed with the diagnosis and hearing the word incurable along with the prognosis that they do not have the emotional willpower to look further than the community oncologist their primary doc may have recommended. Folks are just stunned and reeling from the diagnosis, what it means and then the battery of tests, acronym words and tests ALL create a sense that the person is so out of their depth until they do not wish to look for another doctor. At least he is a familiar entity in the strange journey of the unknown you have just been thrown into. That familiarity is like a safety net.
My experience also was that the doctor is recommending specific treatment NOW. He is not telling you that you can wait to start therapy. You really have to be a well informed or highly confident individual to buck that recommendation and look further initially, especially if the clinician is a knowledgeable compassionate human being. Most folks don't learn until much further down the road how rare multiple myeloma is as a cancer, such that they only represent 1-2 patients in the oncologists practice. That's when they may start to look around as they recognize how the word incurable is not a good thing combined with a doctor who has little or no expertise in that area, even if they are a great oncologist, the doctor simply does not see enough folks with myeloma to warrant remaining under their care.
So, I would say yes, to your last question.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Weekly Poll - Consultation With Myeloma Experts
I didnt have to seek a specialist, was emediately referred to a myeloma specialist at Mayo Clinic, where my plan of attack was planned. My chemo was then done at my local oncologist's, with my stem cell transplant in Rochester. Between these two centers my care has been virtually seamless.
Julia Munson
Calumet, Mich.
Julia Munson
Calumet, Mich.
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Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
Re: Weekly Poll - Consultation With Myeloma Experts
I'm sorry if this is the wrong site to post this question but I'm newly dx and very nervous. Living in the SF Bay Area, I don't know where to go for a specialist in this disease. Diagnosis was done by an emergency room of all places, and I don't have confidence in my PCP for this referral. ANY suggestions or re-direct greatly appreciated. I prefer to be treated locally, but can travel for special services or an experienced physician. Thanks, Bob
Re: Weekly Poll - Consultation With Myeloma Experts
Hello Bob,
This link will take you to the Beacon's directory of major myeloma treatment centers, including those near you:
https://myelomabeacon.org/resources/treatment-centers/#California
UCSF, Stanford, and perhaps UC-Davis are good bets, in terms of treatment centers close to you.
You also may want to check out the list of myeloma-related clinical trials at http://www.clinicaltrials.gov .
Several newly diagnosed patients here in this forum are taking part in clinical trials, including one being run by the National Institutes of Health / National Cancer Institute.
Feel free to ask further questions that may come up as you learn more about your exact diagnosis.
Good luck!
This link will take you to the Beacon's directory of major myeloma treatment centers, including those near you:
https://myelomabeacon.org/resources/treatment-centers/#California
UCSF, Stanford, and perhaps UC-Davis are good bets, in terms of treatment centers close to you.
You also may want to check out the list of myeloma-related clinical trials at http://www.clinicaltrials.gov .
Several newly diagnosed patients here in this forum are taking part in clinical trials, including one being run by the National Institutes of Health / National Cancer Institute.
Feel free to ask further questions that may come up as you learn more about your exact diagnosis.
Good luck!
Re: Weekly Poll - Consultation With Myeloma Experts
Not of the doctors I have been treated by were myeloma experts.. so "Zero"
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sandbass - Name: Sandbass
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Fall 2007
- Age at diagnosis: 33
8 posts
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