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Nature Coast Multiple Myeloma Support Group

Home/Tag:Nature Coast Multiple Myeloma Support Group
18 04, 2014

More about dexamethasone

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I've recently received a lot of constructive criticism from readers that feel my doctors should reduce my weekly dexamethasone dose--or eliminate it altogether. I understand the risks of higher dose, long term use of any corticoid steroid.  But statistics clearly show the anti-myeloma benefit that dex brings to the table. Before I get started, here's

19 06, 2013

Myeloma Updates: Durie/Novis insight & support group shout-out

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I have several different items to share with you today.  First, I have been saving a link to an in-depth article OncLive ran a week ago about the International Myeloma Foundation's power couple, Dr. Brian Durie and Susie Novis.  The article features fascinating personal insights, most of which were new to me; and I know

15 05, 2013

Nationwide myeloma support group broadcast tonight

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Tonight I'm taking part in an experiment.  With the help of Priya Menon and the team at Cure Talk, we will be launching an on-air, nationwide multiple myeloma support group. The broadcast will begin at 6 PM Eastern time.  Due to a scheduling snafu, it happens to air at the same time my local support

24 04, 2013

Cautious optimism and “keeping it real”

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Pattie and I returned home last night after a short visit to Rockford, Illinios, to visit my ailing 91 year old father.  He’s doing better than one might expect for a guy that has had valve replacement surgery and recurring prostate cancer.  It was great to see him! On the flight home I wrote my

17 05, 2012

Take the time to develop a “myeloma philosophy”

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Mixed-in with a lot of new research teasers from the upcoming ASCO meetings in Chicago, a number of significant and touching eulogies and several inspirational stories of myeloma warriors like you and me, I thought I would share some thoughts from readers about myeloma philosophy. Not just a treatment philosophy--although that's a big part of

21 04, 2012

“Crazy Guy on a Bike” full of unexpected surprises

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Wednesday evening I attended my local multiple myeloma support group's monthly meeting. I soon learned that we had an unscheduled speaker:  Myeloma patient and cross-country cyclist Andy Sninsky. A citizen of both Austria and California, Andy was just finishing up a cycle ride of over 1300 miles from New Orleans to Jacksonville, Florida. Why?  "To

13 03, 2012

News and views from “New Treatment Options” seminar last night at Moffitt

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I attended a Florida Educational Advocacy Group event last evening at Moffitt Cancer Center in Tampa.  The topic:  New Treatment Options for Multiple Myeloma. Since I'm just completing a new book on the subject, I felt it was important to attend. I rode down and back with JaneClare and Walt, a fun couple I know

10 03, 2012

Every community large enough to support a stand-alone cancer clinic should also feature a multiple myeloma support group

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That's right.  Every cancer clinic of any size should help promote and sponsor a multiple myeloma support group.  Every one. The group doesn't need to meet at any particular clinic.  As a matter of fact, it is probably better that is doesn't.  That way myeloma patients and caregivers from a number of different facilities can

28 12, 2011

News and views that you might have missed over the holiday…

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Last Wednesday, Californian Lori Puente stopped-in to visit our Nature Coast (Florida) Multiple Myeloma Support Group meeting and Christmas party. Her husband, Dave (the patient), was unable to attend because he was fighting a cold. Lori writes an excellent caregivers blog called Riding The Wave.  She is a tireless advocate for the UAMS/Arkansas myeloma treatment

20 09, 2011

Mary Doyle With Davita Dialysis Featured Speaker At Nature Coast Multiple Myeloma Support Group Meeting Wednesday Evening

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I have been sharing my experiences from last week's support group tour the past few days... Speaking of support groups, one year ago, a fellow patient named Richard and I founded a new support group here near my new home north of Tampa. Now called the Nature Coast Multiple Myeloma Support Group, our IMF supported

23 08, 2011

Why Won’t Medicare Pay For A Myeloma Patient To Collect And Store Their Stem Cells? THAT’S CRAZY!

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In yesterday's article about stem cell transplants for older multiple myeloma patients, I mentioned in passing how Medicare might have an issue with harvesting first and transplanting later. My source was a myeloma survivor named Walt, and his wife and caregiver, JaneClare.  While speaking with them last week during our local Nature Coast Multiple Myeloma

18 08, 2011

A Newly Diagnosed Multiple Myeloma/Amyloidosis Patient Needs Our Help!

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I had the opportunity to attend my local multiple myeloma support group meeting last evening for the first time since my stem cell transplant. It was wonderful to see so many of my old friends and fellow multiple myeloma survivors.  I had the opportunity to talk a bit about my recent experiences, and to show-off

17 05, 2011

Take Me Out To The Ball Game!

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I just completed a new post for our other daily site, I noticed how many interesting pictures I have been running there lately--practically with every article.  So why don't I do more of that here? Good question!  Setting aside the reality that blood and bone marrow cancer and myeloma research isn't a very photogenic

1 05, 2011

Sad News About My Friend, Linda

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Yesterday I wrote about a friend of mine and fellow Nature Coast Multiple Myeloma Support Group Member, Linda Howell.Linda had been resting comfortably in hospice as she slowly slipped away.  She died early this morning.In her mid seventies, Linda was bright and feisty.  She fought right up to the end.  Linda's caregiver, her sister Paulette,