Let me share some important myeloma related odds-and-ends from the past three or four days.
First, remember my post following last week’s 60 Minutes episode,
Many Multiple Myeloma Patients Face Depression
Apparently the segment caught the eye of a number of others in the medical field, too.
Click-on the headline link below to read an interesting perspective about the depression/placebo controversy:
Placebo Role in Depression Tx Stirs Debate
By Crystal Phend, Senior Staff Writer, MedPage Today
While not all medical professionals who comment for the article are critical of the 60 Minutes coverage, the American Psychiatric Association (APA) called the segment “irresponsible and dangerous.”
I thought MedPage Today’s approach was actually quite balanced. See what you think…
Next, I wanted to share a pointed “short and to the point” email I received about Saturday’s post about myeloma patient and Orlando Magic executive Pat Williams:
One person’s reaction to today’s post: ”Excuse me, Pat, but it is not ALL about YOU!”
Charlie
My response: Fair enough!
If you didn’t get a chance to read my commentary about Mr. Williams on Saturday, I would like you to go back and check-it-out. I knew I was walking a fine line by writing about his situation that way–even though it is how I felt.
You see, I’m fascinated by why patients decide on which therapy to try–and why and where they choose to pursue it.
I’m sure the hematologists in Orlando Florida Hospital, where Mr. Williams was treated, are excellent physicians. But that facility certainly doesn’t do as many transplants as several other nearby institutions in Florida, including Moffitt Cancer Center in Tampa, where I had my transplant this summer, Shands, at the University of Florida or Mayo Clinic-Jacksonville. And I can’t recall listening to any of the faculty from Orlando speak at ASH or ASCO–or read any myeloma research studies from Florida Hospital. Doesn’t mean it hasn’t happened. I’m just saying I’m not aware of any.
I recall laying next to an older gentleman of Asian Indian descent while my stem cells were being harvested at Mayo Clinic almost five years ago. Turns out he was a highly rated cardiologist from Dallas. When I asked him why he chose to travel to Minnesota for the procedure, his response was “Mayo is the best.”
Now, whether you agree with that approach or not, I can’t help wondering why Mr. Williams wouldn’t also take a similar route.
And maybe he did, ultimately choosing to stay close to home. Or maybe his doctors reached-out to other experts in the field and did the extra ground work for him.
So yes, Charlie. Saturday’s post was a bit self centered and “all about me.” I didn’t do any research or call Mr. Williams–mainly because I didn’t feel he would be forthcoming with me about how and why he chose to do what he did.
And of course, he would have been under no obligation to do so. So Charlie, you are right again.
So I apologize to anyone I might have offended–including Mr. Williams.
But I hope my main points weren’t lost in my poorly conceived post. First, always get a second (or third or even fourth) opinion before making major therapy decisions–preferably from one of a half dozen or so medical institutions which specialize in multiple myeloma, such as Dana-Farber, M.D. Anderson, Mayo Clinic or UAMS–even if it is simply get a consult.
Second, become an informed patient and learn as much about your cancer as possible, because your life may depend on it.
And finally, don’t be afraid to reach-out to other members of the myeloma community with questions, or for emotional support.
I will update you about Mr. Williams condition if and when I learn more.
Moving along… Last but not least, I would like to note that one of my dear support group friends from back in Stillwater, Minnesota, Dee Steil, passed away from myeloma related complications earlier this weekend.
Dee was an incredible human being. She was always cheerful–often in the face of unsettling and terrifying news that her myeloma was not responding to treatment.
But Dee hung-0n for much longer than anyone would have had a right to expect. Pattie and I would like to send our condolences to her family.
Dee, you will be missed! Pat
February 27th, 2012 at 8:05 am
Hi Pat,
Bill & I contacted Mr. Williams as soon as his
diagnosis was made public. We urged him to go
to one of the centers for another opinion if
nothing else. He basically told us he was confident
in his doctors here and their treatment plan.
We have contacted him once or twice since
then to wish him well basically or to
update him on Bill’s progress since we
have been to Moffit and we are now at
UAMS/MIRT….both with a good history
of treatment for MM. Pat is very committed
to his group in Orlando, which of course
is every patient’s ultimate decision to make
as to where they want to battle this
disease.
We really appreciate you sharing as you
do! Great blog as always!
Jodi
February 27th, 2012 at 9:57 am
Mmm… Thanks for the insight, Jodi. So he didn’t consult a major “player” for advice. Once again, I have never heard about anything myeloma related from that hospital. Doesn’t mean they don’t know what they are doing. I guess what bothered me most is I could tell Mr. Williams wasn’t that interested in learning about myeloma or his treatment options. It was an inconvenience to be pushed out of the way. My readers must know by now how much I HATE THAT! It isn’t like the old days when you simply do what your doctor says, don’t bother to learn the name of your chemotherapy or why or how much you are taking. I HATE THAT!
February 27th, 2012 at 10:57 am
Pat,
I have only my experience, but it probably isn’t that unusual . I was diagnosed in June 2005. I live near Sacramento ,ca and use Sutter doctors and the Sutter cancer center. They are not MM specialists but my hem/ onc , I feel he knew what to do. Honestly, I was in a daze,had a horrible bone biopsy in T10 and NEVER even thought to get a second opinion nor travel anywhere for a different protocol.My son was only in 5 th grade and my daughter 18. I had 17 rounds of radiation, 5 months of Doxil ,dex.. And then did my sct right here. At Sutter General hospital in Sacramento in their bone marrow unit. They were phenomenal. I still would not go for ( at this point) a second opinion since with every thing I’ve read( and I’m way better informed), my oncologist is doing a great job. I see him this week and hopefully my numbers are still good but I trust him even though he’s not necessarily an MM specialist.
So, I guess my point is I understand this guy just going local. I know people, like Lori puente, and others have gone to great institutions and I know her husband had great results. But for me ,what I could handle was only in my own back yard( so to speak).
I also, know if at some point I didnt feel he was moving in the right direction for me, I would seek out out a second opinion but probably locally. I’m just not the kind of person who would go all over trying to find answers. ( but , I do add in , never say never till you get to that point!!!
February 27th, 2012 at 11:10 am
Great points, Christina! My goal is to help myeloma patients get through that “daze faze” as quickly as possible so they can become an informed patient and make good decisions. I won’t say you were “lucky.” It does sound like your team did a great job. Everyone doesn’t need to travel great distances… I just want them to make informed choices so “luck” isn’t a major part of the equation.
February 27th, 2012 at 3:07 pm
Pat – Many thanks for your public and non-defensive response to my “pointed” critique of your Feb. 25th post on Pat Williams. While I would be very reluctant to presume to know his motivations or mind-set (of course I have not had personal conversation with him as you have), I couldn’t agree more with the importance, at critical junctures and ongoing — however much confidence you have in your local doctor(s) — of at least one second opinion from a myeloma specialist, preferably at a major center. As I mentioned in my e-mail response, I would not make this journey without the guidance and oversight of my at-a-distance MM specialist, Dr. Jayesh Mehta, Lurie Cancer Center, Northwestern Memorial Hospital, Chicago. He and his MM specialist wife, Dr. Seema Singal, serve on the International Myeloma Working Group, have published a major medical text on MM, etc. For other “seniors” out there see: http://m.bloodjournal.hematologylibrary.org/content/116/13/2215 for their paper on “How I Treat Older Persons with MM”. I see Dr. Mehta once or twice a year, but send him my monthly lab reports and review all significant developments and treatment decisions with him. He is a MAJOR part of my medical team!. Charlie
February 27th, 2012 at 5:04 pm
Dear Pat,
Thanks for your willingness to instigate meaningful discussion in this space. I might point out, however, for a guy who is battling mm, while writing about and compiling research data, attending conferences and speaking to support groups, you take a lot of hits in here.
I think we should be able to discuss, disagree and argue for a better understanding of the sphere of issues surrounding mm. It seems to me that the one critique that will never apply here is, that ‘it’s all about you.’
I can only think the author of that phrase is new to the site or somehow misspoke . If this is redundant to another comment I apologize, but I want you to know that your significant effort on mu behalf is appreciated.
February 27th, 2012 at 5:22 pm
Charles-
So glad you have a medical team you can trust! Thanks for participating and sharing your thoughts…
Thanks so much for the support, Stephen. But actually, I take far fewer “hits” than I would if I were a sports writer or political blogger, that’s for sure. Part of it is “no one wants to be too critical of a guy with cancer…” So as odd as it seems, I embrace a bit of testiness now and then. So no worries here! After dealing with myeloma day in and day out, I can handle a bit of flak from my readers!
But I’m not going to argue with you after you wrote-in supporting me! So thanks again–and thanks for reading!
February 27th, 2012 at 8:26 pm
Pat – I agree there are many well known institutions for MM, but I disagree that if your doctor or hospital does not present at ASH they are not the best. I live in the Chicago and have many options such as Northwest University and University of Chicago, both well known for MM, though I decided to have my treatment at Rush University and have been thoroughly happy. I had a second opinion at University of Chicago and to this point they agreed with everything that has been done.
I asked my doctor at Rush why the IMF does’t not refer him or Rush when calling the hotline, his response was Rush does not have the staff to market their services. Though my doctor does not present at ASH he attends the conference every year, I think not necessarily presenting, but attending is important.
Keep up the good work Pat.
Tim
February 27th, 2012 at 10:13 pm
Of course their are plenty of great docs who don’t present at ASH. But if I had your Chicago docs, I still might seek a consultation from a well known myeloma specialist. Maybe not–and that’s fine. Much easier to do than it used to be–and insurance usually pays–or you can get a free consult at an IMF Family and Patient Seminar. I was born and raised in Chicago, by the way. Glad you are happy with your myeloma health care team…
February 28th, 2012 at 5:23 am
Tim, the fact that your doctor attends conferences and presentations, is much, much better than most local docs treating MM. Most of them do not. It is not their speciality and they don’t see enough, but presume they can handle it by reading the articles.
February 28th, 2012 at 10:49 am
Pat, Christina, Tim, Lori,
Excellent discussion. I agree with Pat that everyone should get at least 2 opinions upon at diagnosis. One should be from an Institution that has an established Myeloma practice from a Doctor that specializes in Myeloma. My perception is that the large speciality Institutions provide 2 advantages over others. They are better at diagnosing (assessing risk level of the individual patient) because they get more patients and the patients will be able to get access to newer drugs due to the larger Institutions running more Clinical trials.
On the other hand, most of the therapy in Myeloma (though certainly not mine!) revolves around admininstering Chemo. While an Auto is a difficult therapy for the patient to endure, it is not a difficult procedure for a Transplant center to perform. Does it really matter what Institution administers you Chemo or writes you a prescription for Revlimid/Velcade/Dex? I was fortunate that an Institution listed on the IMF website is 45 minutes from my home. I did get another opinion from a more recognizable Institution, but I thought the long term treatment strategy at the Institution close to me was far superior. Could it be that the treatment strategy was better thought out because the other Doctor I had a consult with spends a lot of time travelling, making Internet videos, etc to market his Institution? How does that help one of his patients?
Mark
February 28th, 2012 at 11:04 am
Excellent point, Mark! It doesn’t matter so much where you receive treatment–although I would want to get my SCT at a center which does at least a hundred or so each year. We are talking about a consult. Speaking with one or more experts. Ideally, that person or persons then works with your medical oncologist or local hematologist (as well as the patient, of course) to develop treatment and dosing strategies…
February 28th, 2012 at 3:32 pm
I agree with Mark’s comments that the routine care of myeloma can be pretty straightforward. However, this discussion reminds me (and I don’t think it’s off topic) that although the SCT procedure itself is pretty routine I want myself or loved one to be at a facility that can handle the unexpected. Pat, I’m thinking of your recent experience in the community hospital ER. So whenever we have our drothers we choose to be in the company of professionals who can handle worse case scenario. Not hard for us as we live in Philadelphia but I wonder what contingencies others sometimes make who have distance challenges to competent care.
February 28th, 2012 at 4:58 pm
Mark and Kate-
Yes, yes and yes! Always easier to be close to home. My only caveat is to remember an SCT is a relatively easy procedure to perform–as long as something unexpected doesn’t happen. Lots of unresponsive nausea is a common example. If a center does 200 or more SCTs a year, they have lots of experience about how to minimize side-effects. But I can certainly see how that would be offset by convenience of being close to home. I was an hour away–only 8 miles short of being able to claim up to a $10,000 travel and lodging benefit from my insurance company–an advantage to being father away most probably don’t consider…
February 28th, 2012 at 5:55 pm
Response to Stephen Greene — As the author of the admittedly harsh sounding phrase “it’s not all about you, Pat”, two responses: 1) you are right, I am new to the site. 2) if I had posted that phrase publicly, I would also agree with you that I had “misspoken”. Instead, I sent that to Pat in a private e-mail because of my reaction that he had taken too personally Pat Williams failure to contact him regarding treatment decisions. It was Pat K’s decision, after securing my o.k., to quote my private comment in his Feb. 25 blog. My public comment that day was kinder and gentler I think, though it made the same point.
February 29th, 2012 at 12:30 am
Charles did just that. I want to apologize, Charles. I never intended to make you an easy target! Thanks for the support, dear readers. Always nice to know that so many have your back! But Charles did nothing wrong and everything right. Thanks for participating, Charles–and for giving me permission to print your on point email. Lay-off the guy, OK? And he wasn’t even wrong! Please don’t hesitate to comment in the future, Charles…
February 29th, 2012 at 4:09 pm
Response to Charles Frazier – Charles, I considered an inflammatory response for the sake of keeping the action going. I hope you agree that this has been interesting at least?
Be that as it may, I sincerely apologize for my overzealous response. I agree that your public post was well stated and a clear indication of your intent.
Best to you, Charles!
(If turns out that you are Pat’s undercover literary agent, you’re doing great work…)
February 29th, 2012 at 5:40 pm
If only our politicians could get along this well…
February 29th, 2012 at 10:57 pm
Thanks, Stephen! One thing about having myeloma: it makes this stuff pretty tame, even fun, as long as there are no bruising attacks. All was well intended as far as I can tell.