Sunday, December 29, 2013

5 miles...DONE!!!! But, not alone...

It has been over 3 years since I did a five mile run. I worked very hard after all of my surgeries to build back muscle strength and endurance.  Since starting my anti-PD1 trial, almost exactly 3 years ago, I've fought to rally back after every set of injections and infusions.  I walked, I jogged, I did the elliptical, I did INSANITY.  Poorly immediately after the bug juice, then a little better, and a little stronger...only to slide backward again when side effects of aches and pains and tiredness and wheezing would begin again.  There were no 5 milers.  Having had my last infusion in June, I guess Rosie was right when she ran with me in November and said she felt I was getting stronger.  I have gradually increased my weekly miles, running more frequently, running 3 miles more often than the two that was most often what I stuck with over the course of my treatments.  But, today, I decided it was time for 5!  So...I did it.  5 miles in 58 minutes.  No speed record to be sure.  But, no breathers either.  There have been plenty of runs in which I had to stop every quarter, or every half mile, to catch my breath.  Not today.  I am proud.  Proud of my determination to get through all of this.  Proud of working hard to keep my strength to the best of my ability, never knowing what I have yet to face.  But, most of all, I am strong, because of those who run with me.  Those who have helped me, encouraged me, pushed me, rested me and my spirit.  Friends and family who have always filled just the space I needed them to be make me laugh, to hold me up.  So very best ones...propelled me forward again.  Without my Roo, Fred-o, and Bentie...I would certainly never have made it through....much less made my run today.  And while they hold me and I do the same for them...I run for you, too.   It does indeed take a village.  Ubunto - c

Tuesday, December 24, 2013

Life is just a party, Baby!!!!

We all have so much to celebrate, if we just take a moment to think about it. 

When it is Thanksgiving...and even when it's not....

When we have more than we need to eat...

When we have wonderful peeps and pups to walk with....

Even with graduate application hysteria...

When congratulations are in order...

With a proper British tea...replete with sandwiches and scones...

When there are beautiful friends with whom to share...

When silly laughter rings through the air...

When there is music and dance and love.....

Yep.  In spite of work and worries and septic tank issues and the unknown and melanoma....there is ever so much to be grateful for.  My deepest gratitude to all of you who share my life and bring joy to my little mutant babies!!!  Big hugs and a huge congratulations, Roo!!!  Life it just a party, Baby.  Live it up! - c

Saturday, December 14, 2013

Update on PV-10 (Rose Bengal) for melanoma

I first wrote about PV-10 (also known as Rose Bengal, a pretty cheap derivative of fluorescein, that has been used for over 80 years to stain necrotic tissue in the cornea when corneal abrasions are suspected and as an IV diagnostic of liver impairment) being used in melanoma patients in October of 2012.  The study I reported on was one in which Stage 3-4 melanoma patients had up to 4 courses of PV-10 injections into up to 20 cutaneous and subcutaneous tumors.  The cool thing was that not only did many of the injected tumors respond and shrivel, but some tumors at distant sites (even in the lungs) that were NOT injected, shriveled as well!!!

Results:  Objective response was achieved in 51% of target lesions (25% complete response and 26% partial response).  Furthermore, disease control (combined Complete, Partial, and Stable responses) was achieved in 69% of lesions.  In bystander lesions: 33% = objective response and 50% achieved disease control in these lesions.

Yeah, still sucky I know....but in melanoma world....

So...the folks at Moffitt must have thought the original study in mice and this data looked pretty good.  See the report below.....

Single Injection of PV-10 Being Tested in the Treatment of Advanced Melanoma
By:  Jo Cavallo via ASCO post, 8/28/2013

A new study underway at Moffitt Cancer Center in Tampa, Florida, is investigating whether an intralesional injection of PV-10 (a substance derived from Rose Bengal, a staining agent that has been used to assess eye damage), is effective in reducing tumors and the spread of cancer in patients with melanoma.  Early clinical trials show PV-10 can boost immune response in melanoma tumors and in the bloodstream.

"We are in the middle of our first human clinical trial of PV-10 for advanced melanoma patients. In addition to monitoring the response of injected melanoma tumors, we are also measuring the boost in the antitumor immune cells of patients after the injection," said Dr. Sarnaik.

Guess we'll have to see how the ratties do with this one.  Hang in there.  Call Moffitt for more information if this trial is of interest to you! - c

Wednesday, December 11, 2013

Everything cures/kills melanoma ~ one 'mo one....

If you look back on my post from July 20, 2013 you'll see a large collection of research articles enumerating studies that proved all sorts of things - coffee, cucumin (turmeric), cimetadine ( to decrease stomach acid), doxycycline (an older antibiotic), NSAID's (like ibuprofen), and even shitake mushrooms - kill melanoma cells!!!  Well, here's another:  STRAWBERRY JUICE!

Antineoplastic activity of strawberry (Frafaria x ananassa Duch.) crude extracts on B16-F10 melanoma cells
By:  Forni, Braglia, Mulinacci, Urbani, et al.
Of the Department of Biology, University of Rome, via Mol Biosyst, 2013 Nov 4. [Epub]

So....these peeps extracted the juice from strawberries (anthocyanin-rich strawberry fruit crude extracts) and squirted it on some mouse melanoma cells they had scattered about in petri dishes and found.... {DRUMROLL>>>>>}.... "the strawberry extract produced a remarkable reduction of cell proliferation."

Thought you should know.  Now...go have a "fruit snack"!!!!

PS...Fred, Shane, and Rose should never have any worries having eaten more than their weight in fruit a zillion times over!!!  Remember Fred trying to get out of the grocery cart to get to the strawberries when he was a baby, Ruthie????

Wonder if it counts if you eat strawberry ice cream?  Hmmmmm... - c

Sunday, December 8, 2013

How am I? Thankful....

Running yesterday, I realized that I had not given an update about ME, in a while....and that's a good thing!  In thinking about how I am, mostly, I am thankful.

I am thankful that even though B doesn't know the difference between violas and pansies....he knows pretty faces are important!

I am thankful, that in our shared, weird and wonderful spirit of celebration and defiance, B and I attended yet another of Vince Gill's annual Song for the Children concerts to benefit the local chapter of the Children's Advocacy Center.  Our first attendance was literally days after my last surgery for melanoma, a tonsillectomy, oddly enough, in November of 2010, just before starting my anti-PD1 trial that December.  Gill and his band provided another amazing show.  Thanks Vince!!!

I am thankful that I got to see another beautiful fall here on the mountain.

I am thankful, that despite about a month's recurrence....that never got as bad as they had been....mouth ulcers and mucositis have been pretty much absent from my world!!!  Occasionally there is a sore spot on my tongue or cheek that worries me...but to be honest...had I not experienced what I have, I would probably not even notice!

I am thankful that I've been allowed to watch B's cherry trees, planted after almost 5 years with melanoma,  grow 5 more years!

I am thankful for a wonderfully delicious and fun Thanksgiving with B and the kiddos.

I am thankful for a job that is certainly keeping me busy, but is filled with many dear patients and friends.

I am thankful, and somewhat astounded that I AM NOT getting scans in the coming week as my heretofore every 3 month regimen required for the past 3 1/2 years!!!!!

I am thankful that I AM NOT going to Tampa in the coming week as I have been for the past 3 years!!!  Will be doing all of those things in March, I suppose...but not this week!!!

I am thankful, despite all its difficulty, that I did have the opportunity to attain the treatment I have received.  Though I do not know how much longer my reprieve from melanoma will be granted, I am certain I would not be here today without it.

I am thankful for the Affordable Care Act.  Through, (Yes, the very site that had problems at first, is now working very well!!!)  I have been able to successfully sign up for an insurance plan for me and my children DESPITE my pre-existing condition that is actually CHEAPER and provides BETTER coverage for the three of us, starting January 1st, since Brent has retired and we will no longer be covered by the insurance through his work.  And though I HATE ALL INSURANCE equally and with a passion, it is essential in this day in age in order to have medical care without the risk of financial bankruptcy.  At least this legislation prevents discrimination against the millions of us...including newborn babies, Mr. Hudgens, Mr. Fire and Insurance Commissioner for the state of Georgia....who did NOTHING WRONG...who for all sorts of reasons ended up with that soon-to-be irrelevant label....pre-existing condition!  So, yes, I am thankful.

I am thankful that it seems this blog provides at least some information and succor for those in need.

I am thankful for dear friends and family who keep me in their hearts.

Yes, I am thankful indeed! - c

Friday, December 6, 2013

Way to go, Sally!!!!!

Some of you may remember my excitement at finding a Sea Turtle, named Sally, (Yes, that was her name....she told me!!!) on a Florida beach back in July of 2010.  She came ashore and into my life just as I had advanced to Stage IV melanoma and endured stereotactic radiation for my brain tumor with the removal of my lung's right upper lobe for a tumor within the bronchus.  I could find no additional trial or treatment at that time, but....along came Sally.  If she could survive and complete the tasks her life demanded of her despite mean sharks, gigantic boat motors, BP oil spills, not to mention navigational issues and obnoxious people and their trash, over the 9,000 mile sojourn she had just made...then.... Hey! I could find a way to deal with melanoma!!!

Today, I am happy to share a report from NBC News noting that "Endangered green sea turtles are making a comeback in Florida"!!!!  In 1979, only 62 sea turtle nests were found in the state.  This year: 35,000 were discovered.  Experts credit bans on harvesting turtle eggs, turtle fishing and the sale of sea turtle meat for a lot of the success.  Additionally, the Florida home owners and visitors who have complied with recommendations to turn off lights near beaches, especially from spring to fall during the nesting season, since the lights can confuse hatchlings....drawing them inland toward the lights rather than out to sea...have been very helpful to Sally and her babies as well.  Hazards to the turtles remain in the form of fishing nets and lines, trash (esp plastics and Styrofoam) littering beaches and the sea floor, as well as boats who pose risks to turtles when propellers crack their shells.  But overall, conservationists consider the results "phenomenal"!

Sally and I do, too. - c

Sunday, December 1, 2013

T-cells infected with genetically modified HIV...KILL Cancer!

Docs at Children's Hospital of Philadelphia and the University of Pennsylvania are working with genetically modified T-cells to fight leukemia.  T-cells are collected and purposely infected with a virus that genetically changes them in hopes that those dubbed "serial killer cells," will now see and react against the cancer cells once they are reintroduced to the patient.  HIV that has been modified so that it can no longer cause disease, but remains able to reprogram the T-cells, is the virus used in this clinical trial.  The doctors readily admit that this is a last ditch effort, currently utilized only in patients for whom there are no other options, and even with some successes, patients may not survive the procedure. However, you need only see the film hope.

Fire with Fire

Leukemia Patients Remain in Remission More Than Two Years After Receiving Genetically Engineered T Cell Therapy 
University of Pennsylvania Researchser Report on Results of Trial in 12 Patients, Including Two Children   Penn Medicine News, December 9, 2012

In this report they state:  Nine of twelve leukemia patients who received infusions of their own T-cells after the cells had been genetically engineered to attack the patients' tumors responded to the therapy.... Clinical trial participants, all of whom had advanced cancers, included 10 adults...with chronic lymphocytic leukemia...and two children with acute lymphoblastic leukemia.  The report goes on to state that: 2 of the first 3[adults] treated remain healthy and in full remissions more than two years after their treatment.  Information regarding the other patients was not included in this particular report.

Good luck, Emma.  Live free. - c