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Here's news and info about three primary blood cancers, Lymphoma, Myeloma and Leukemia with a decided patient's perspective.  I hope this helps whether you're newly diagnosed or veteran survivor.  

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Tissue Bank Study for Blood Cancer, a patient driven Clinical Trial

IWMF Tissue Bank Study, a Clinical Trial Update      10-18-2012

Making headway against the blood cancer Waldenstrom’s Macroglobulinemia (WM) is challenging. Because the population of WM patients is so small, we receive almost no share of research funds from either government agencies or pharmaceutical companies. The priorities of government agencies are set to accommodate the majority voters while those of the pharmaceutical companies are influenced by growth and profitability. In either case, research targeting an orphan disease will never be at the top of the list. ....not all the needed resources are financial. There is another important way in which WM patients can support WM research: participate in clinical trials.

Our friends at the Multiple Myeloma (MM) Research Consortium funded by the Multiple Myeloma Research Foundation have had great success with their tissue bank program to help accelerate the development of novel agents that treat a similar blood cancer, multiple myeloma. There are a few simple steps that require your active involvement and co-ordination. 

An inside view at the world's largest research-based Big Pharma -Pfizer

This week, I attended a two day seminar, the "Personalized Medicine Workshop" at Pfizer Inc., the world's largest research-based pharmaceutical company.   I have a keen personal interest in Pfizer because it is an industry leader in biomedical research and in a particularly strong position in Oncology research, a topic near and dear to me.  As there is no cure for my type of blood cancer, I take a forward looking posture betting on science and medicine to find the next biologic agents that will help manage my cancer or even better cure it, a distinct possibility.  

Unfortunately, it has become fashionable to bash Big Pharma.  Even the term seems to have a pejorative meaning. ..... Anytime I encounter one of those 'conspiracy theory' nutcases and ask for actual evidence, not conjecture, they seem to run and hide.  .....  Just my opinion, but Big Pharma's DNA leans toward integrity; it's a science thing. 

The most interesting part of this two day seminar/workshop was to learn more about "The Case for Personalized Medicine" from the Personalized Medicine Coalition.    Check it out.

Two routine days, except for another bone marrow biopsy

Day 1:  I'm such a veteran of managing this lymphoplasmacytic lymphoma that I should have known better.  For many, this would be no ordinary day at Dana Farber Cancer Institute.   I don't like bone marrow biopsies.  Nobody does.There's a secret code amongst cancer patients.  Don't talk about it or write about bone marrow biopsies.  This is the only medical procedure that even nurses and doctors say ewe, oh no, or yikes, patient-speak. They too think, "poor bastard". Ouch. This is my eighth bone marrow biopsy.  

Too bad they don't give some kind of award,.... The only way in is through a bone, your bone.  Which bone?  The pelvic/hip bone.  

Do yourself a favor.  ...don't watch those YouTube videos unless you are absolutely sure you don't have cancer and you will never get cancer. 

This week the cancer gods have decided

Last week I wrote about receiving an envelop from the cancer gods almost every week. These almost weekly envelopes contain a script or playbook for what's going to happen during the week.  Typically, some new symptom or side effect.

One of the more recurring envelopes I receive is a script centered around my throat and lungs.  The chronic pneumonitis (lung inflammation) seems to have subsided.  But, the persistent cough won't go away and every day I lose my voice in the afternoon.  This is chronic laryngitis so I'm told.  My oncologist called in some heavy guns from the pulmonary practice at Brigham and Women's Hospital.  I met with Dr. Victor ... a forthright professional, very engaging, exceptionally bright and not afraid to have some fun during the visit. ...his confident smile was a heads up that he's gonna be good, very good.  

....suddenly you realize this thing is down your throat, not bad.  You can see what the doctor sees but on a TV monitor.  I like looking around 'in there' wherever "in" may be so I'll often ask the doctor a lot of questions.  Is that my larynx?  What's that thing?  How come it looks like that? Hey is that normal? ... Is this you?  Do you ask these questions?

11th Annual WEEI/NESN Telethon with the JImmy Fund to raise money for DFCI cancer research and care

What an incredible effort by so many volunteers, radio and TV personalities, Red Sox players and management and contributors from across the United States.  This is the 11th annual Telethon and since its inception in 2002, it has raised more than $30 million to support pediatric and adult care and research at the Dana Farber Cancer Institute in Boston.

I was fortunate to represent DFCI as a patient volunteer and participate on a few Radio and TV shows again, my second year.  I hope to set up a separate page on this site that presents some highlights, photos and perhaps some videos. It's amazing how much effort is put in to make this a success, having raised $3,311,563 this year.  Although she is well known, much of her work is done behind the scense; Lisa Schereber, the Director of Patient and Family Programs deserves the BIGGEST HUG possible for her accomplishments and special interests and care over the many young cancer survivors introduced during this Telethon.  Also behind the scenes and an incredible force is Jason Wolf, Vice President Programing for Entercom/WEEI who works tirelessly to create public awareness which directly helps achieve the fundraising goals each year.  Way to go Jason!  

It was fun to meet Red Sox players Dustin Pedroia (again), Clay Buchholz and a quick hello with Adrian Gonzalez and Jarrod Saltalmacchia.  Later, the entire team stopped by to meet with volunteers and fans. More info and photos on a separate page.

The battle goes on, The Ride of the Valkyries

When describing managing cancer, people use words like battle, fighting, cancer warrior, etc.  After a courageous battle he beat or lost... I prefer terms such as living with cancer and managing cancer.  I don't find myself in much of a battle that I'm winning or losing. When hooked up to an infusion pump sitting in an infusion chair, there's really not much you can do other than sit there.  Bring it on, baby!   I often listened to music, tried to read even have some fun visualizing the 'novel agents' entering my bloodstream, targeting a B cell (good or bad), like marking those cells with an X so a Natural Killer NK cell produced by your immune system comes along and kills it.  This is immunotherapy, sort of a targeted chemotherapy.

Just for fun, I visualize that cell level battle underway in my blood system and bone marrow. The best music for this is the "Ride of the Valkyries"... popularized as the theme in the 1979 American epic war film, "Apocalypse Now".  Many believe that visualization works. I don't.... 

Oral Chemo Parity Bill, railroaded off track at the 11th hour

At 11:30 PM last night I got a phone call from an 'insider' at the Commonwealth of Massachusetts State House saying don't expect any positive vote on the Oral Chemotherapy Parity bill before midnight. ....at midnight on July 31, the regular legislative session comes to and end.  ... he said "it's over for now".  As someone at a senior level position ...  rammed through an eleventh hour amendment that would neutralize this proposed legislation, 

Oral Chemotherapy Parity Bill

We are so close.   The Commonwealth of Massachusetts could be the 20th state to adopt legislation the corrects a serious inequity and discriminatory practice in cancer care.  Currenty when a subscriber to a healthcare insurance provider requires chemotherapy and that chemo is given by way of a traditional intravenous (IV) infusion, he or she will normally receive 100% reimbursement or direct paid coverage.  If patient receives one of the emerging 'targeted therapies' in a pill form, the insurance company can determine that is pharmacy coverage for which a co-pay of up to 30% or more is required.  This means patients who must take pill form for some of the incurable blood cancers such as mine, will incur substantial pharmacy costs while the costs to the healthcare insurance provider, the healthcare provider and in some cases the state or federal healthcare service sees dramatic savings realized from the much lower cost pill form chemo.   Massachusetts supposed to be the technical and legislative leader in healthcare enacted legislation long that penalizes cancer patients today.....  Time to fix this! 

Red Sox Nation... again?

Got a call from DFCI asking if I would "do" the WEEI/NESN radio/TV telethon in conjunction with the Boston Red Sox and the Jimmy Fund who are again fundraising for research, care and some cures for cancer patients.  Wow, will I "do" as though do has some professional, high-value meaning, not like "do us a favor" but more like "do your stuff".  In a heartbeat, I said, sign me up.  Last year, NESN Sports TV Network produced a commercial for this annual event where Tom Caron (TC) local sports commentator came to my home.  

And Jerry Remy, Don Orsillo, Heidi, yes Heidi Watney was there and, Mikey Adams, Glenn Ordway, Michael Holley, Peter Gammons, Joe Castiglione, and, and .... Uncle Henry and Auntie Em.. The alarm goes off.

This one's personal

Some physicians and medical care professionals maintain an arms length relationship with their patients.  You see this on TV when stoic physicians just can't get involved. You know, don't shed a tear stuff.  From the outset, I knew that my oncologist, one of the best in treating Lymphoplasmacytic Lymphoma and Multiple Myeloma at DFCI would become a best friend.  After six years of great care and participating in many clinical trials, it's no surprise that we'd become good friends, very good friends, hugs and all.  Dr. Irene has two of the best oncology nurses in the business. And that team is supported by an incredible team of infusion room nurses who get to know you at your worst.  More about this incredible team in another blog where they deserve more time and space that I can give now.  

But today is an important day ...

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