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“The most important thing in illness is never to lose heart.”  – Nikolai Lenin

As someone dealing with Myeloma, now, in almost 2011, I can’t tell you how frustrated I get when I read online or someone writes me, and OLD information about MM is STILL being disseminated – such as a 3-5 year survival! There is so much more going on and this “opinion” is way outdated. If you are beginning your journey with MM, please, please, please, don’t get caught up in all of that. If you see a doctor for consultation that holds this view, don’t go back.

For instance, chromosome deletion is no longer an issue in places like Little Rock or Huntsman in Utah. Its only something to know, but by no means untreatable, with good survivability numbers if you fall within the low risk group, approximately 80% of MM patients do. Even the high risk patients are getting some good results in Little Rock. You should, at the very least, consider Little Rock in your consultation process and get an apples to oranges comparison in viewpoint and treatment.

I know how hard it is when you are in the “throws” of a cancer diagnosis of a disease you most likely never heard of. Its in your blood, you may have some broken bones, or kidney failure, you are in bad shape, or just afraid, and Little ‘ol Lor is telling you to be hopeful and don’t forget to get more than one opinion. How do you do all that when your world is turned upside down? I don’t know how you will do it, except that you need to pull yourself up by the bootstrap, put on your “game face” and get’r done. Its your life and your survival we are talking about here.

“Don’t worry about the HOW,

just state the WHAT,

and the HOW will work itself out…

It always does.” – Lori Puente

Initially, most of you will probably be put on an oral chemotherapy, which hopefully will help you get stable. Once you get that stability you need to find a way to get more than one opinion and in that process, Little Rock or Huntsman should be one of them. Why? Because it is so vastly different from the other consultations you will receive. You will get more diagnostics than any other facility. Most will only look at previous scans done by the diagnosing docs. Little Rock will redo all of them and add their own. You will need at least five days for your tests and then you will meet your doctor to go over everything. You will come away knowing more fully, YOUR Myeloma presentation. This (and Huntsman) is the only facility that does a DNA gene array and have identified high risk tumor markers that physicians outside of Little Rock will not have. Once you have both sides of the coin you will be in a much better place to pick your path and make your decision. It still may not be clear, you most likely will continue to have some uncertainty that you are making the right decision, but at least you will have made one based on your own assessments of more than one opinion. Sometimes we make it based on instinct, circumstance, hard data and hopefully, all of the above. (By the way, Little Rock is a “self-referring” facility. You do not need a referral to go there.)

Aside from that, (and I hope you read my article on “Why a Researching Facility vs. a Treating Physician”) your opportunity without stem cell transplant, with stem cell transplant or tandem transplants has greatly increased over the last 5 years. If you hear anything different from your physician, run, don’t walk, to another facility. Please, if you trust nothing else I’m telling you, trust in that. Three – five year survival is old news, and yet, doctors around this great country are still holding to that mortality number and it irritates me to no end. It’s just not true and maybe they know it, or have read it, but for some reason, either they don’t believe it, or they are not treating their MM patients with up to date protocols. For them, it is completely true – their patients will die in 3-5 years. Don’t you be one of them.

If you are in relapse, approximately half of the patients who go to Little Rock were treated elsewhere first. There IS hope – for all of you.

“A patient diagnosed today with low-risk multiple myeloma can expect to survive more than 10 years.” – (see attached Myeloma Briefing Fall 2009)

Myeloma Briefing Newsletter Fall 2009

Great post over at Nick’s on this briefing and his personal Q&A with MIRT Director, Bart Barlogie on the details of the findings. (If you haven’t explored Nick’s Myeloma Blog, it is a must. He gets into the nitty gritty with great data intertwined with wry humor. If you like science and details, Nick is THE MAN!)

“Myelomaville” comes from Sean Murray over at MyelomaYoureloma.com, a blog worth reading.

One Response to “Frustrated in ‘Myelomaville’”

  1. Lori Puente Lori says:

    Sean Murray, of Myeloma Youreloma, also writes for The Myeloma Beacon. Here are two articles you might like to read if you are on the fence about making the trek to Little Rock (or Huntsman) for consultation.

    “My Adventures Through Total Therapy”

    “New Myeloma Patients Are Put to the Test”

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