June, 2009

Tuesday, June 30th, 2009

Houston, We Have Infusion!

So I’ve got the final OK – I have found a location to receive my Much Needed and Long Overdue infusion of Zometa!  YAY!

Much Needed and Long Overdue by 2 weeks.  Two weeks that have past while I was struggling to find a solution to a problem that should NOT have existed.

The location will be North Cypress Medical Center – Ambulatory Infusion Therapy Center.  Let’s hope their infusion procedures are better than the PET/CT Scan procedures of the North Cypress Medical Center Imaging Center which – supposedly – are not quite as close to protocol as they should be

I’ve talked with Novartis Oncology Patient Assistance Program, and they are good to ship my “new” prescription of Zometa directly to the NCMC Infusion Therapy Center Pharmacy, so the Burzynski Clinic will have no handling of the 3 small vials of Zometa, so there SHOULD be no need for any $1500/month charge for “Medicine Management”.

The total infusion charges will now be $310.78 per month (just a little bit higher than originally suggested, but still Much lower than the $1000 at the Burzynski Clinic)… this will include receiving the Zometa, compounding the Zometa for infusion, infusion procedure utilizing my port and storage of the vials.

I am scheduled for this upcoming Thursday – July 02.  If it hits me as hard as it did last time, I’m gonna have a helluva July 4th… And since Mom will be in Corpus with Dad, recovering from his surgery, I’ll be doing this one alone… ~sigh~

The “good news” though, is that the extreme symptoms I experienced with my first Zometa infusion were uncommon, and the more common “mild” flu-like symptoms usually occur with first treatment only.

Let’s Hope.

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Monday, June 29th, 2009

This Week In cancer

It’s WTH… seems like an abnormal number of cancer deaths this past week… or is it just that I am more aware… becoming more aware each day…

I’ve got to stop taking these so personally… but it’s difficult not to when I am fighting this fight myself.  Everything has changed since I got diagnosed.  Well, not immediately, but as more time passes and as I become more aware of… of the fact that this is a very tough fight and not everyone makes it… it’s difficult to see these people passing – dying – and not to take it personally, to not be scared… petrified.

I want to have Faith, but how do I have Faith when I Am Not Ready?  I look around and see all that I have Not accomplished, but do I have time?  Do I have time to make up for poor choices?  There is no “undo”, no “redo”, this is it… Do I have time…?

I want to just stand up and scream… I AM NOT READY.

How do I get ready when I don’t want to…?

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Monday, June 29th, 2009

PASSED: Fred Travalena (lymphoma)

Impressionist, Comedian, Vegas Headliner Fred Travalena Dies

Travalena was diagnosed with non-Hodgkin’s lymphoma in 2002 and prostate cancer in 2003. Following five years’ remission, the lymphoma returned in 2008. He beat cancer twice but succumbed to the latest attack, which resurfaced about eight months ago, said his publicist, Roger Neal. Travalena died on June 28, 2009, aged 66, at his home in Encino, California.

Fred Travalena
Impressionist Fred Travalena dies at 66
Impressionist, Vegas headliner Fred Travalena dies

Fred Travalena, 1942 – 2009

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Sunday, June 28th, 2009

Comments

It’s Tough writing this Blog, each letter I type is a reminder of my situation and the fight I am fighting, the fight I do Not want to be a part of, but I am… the fight that I Hope to win, the fight which I Might loose.

A fight in which I am not alone, yet I am very alone.

Sometimes it would be easier to forget and simply retreat into a cocoon of denial… but I can’t, I Need to write, I Need to feel that I am Somehow making a difference with my fight.

I Hope there are people who are reading this Blog, I have people tell me that they are, but I really don’t know.  I find it interesting to note those “friends” who have pulled away since my diagnosis… or those who “can’t bring themselves to read” my Blog because it’s “too difficult for them”.  Well, lemme tell you just how difficult this is for Me.  I’ll go through this nightmare without you.

I want to Thank those who have left comments… my Real Life Friends who stop by and take a few moments to leave me words of encouragement – Christy W, Crystal G, Amber H, Marianne M, Katherine R… people who I have met via online groups – Bridgette M… people who I never met, but who have gone out of their way to leave me a few words – Gina M, Karin W… and All the people who have donated money for my treatment and recovery and left comments of encouragement with their donations… yes, the money helps ease my financial stress, but it’s Not just about the money, it’s about the Comfort and Power of Prayer.

You all Have No Idea what your support means to me.  At this time, when it’s So Very Tough for me, I cherish each and every word you share with me.  They bring me Much Comfort.

When I come up here to write, and there are no new comments – which is more often than not – I seek out your words and re–read them for comfort.  If they were paper they would be tattered from use, tear-stained and imprinted with my gratitude…

Thank You.


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Sunday, June 28th, 2009

PASSED: Dr. Jerri Nielsen FitzGerald (recurring breast cancer)

NEWS:  Dr. In S. Pole Rescue Loses Cancer Battle

One minute you’re “Up” with Joy and Hope, the next minute you read something like this and its a Horrible Crash of emotion… this cancer is Such An Evil Disease. Another Warrior with a (seemingly) strong and supportive partner.

Dr. In S. Pole Rescue Loses Cancer Battle
Dr. Jerri Nielsen FitzGerald Was The Center Of A Dramatic 1999 Rescue
BOSTON, June 24, 2009

(CBS/AP)

Her husband, Thomas FitzGerald, says she died Tuesday at their home in Southwick, Mass. The cause was cancer.

Nielsen was the only doctor at the Amundsen-Scott South Pole Station when she found a lump in her breast in June 1999, raising fears of cancer. Weather conditions didn’t permit a rescue, so she performed a biopsy on herself with the help of staff.

She began treating herself using drugs dropped by parachute in the dark polar winter in July, in a mission documented by CBS News.

Despite her illness Nielsen kept busy with her duties up until she left the South Pole, her sister-in-law, Diana Cahill, told CBS News in 1999.

“She didn’t have time to focus on her condition at all. She’s a very giving person,” Cahill said.

Following the dramatic airlift, she told The Vindictor newspaper she wanted to return to the Antarctic.

“It was such a wonderful place. I still love it. I would do it again. Even knowing what happened to me, it was the best year of my life,” Nielsen told the newspaper.

Her cancer went into remission until 2005.

Jerri Nielsen FitzGerald, 1952 – 2009

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Sunday, June 28th, 2009

NEWS: PARP Inhibitors Working Against Inherited Cancers

More UNBELIEVEABLE Information!  This has been a Very Special Week in the War Against Cancer!!

I NEED to find out if this cancer I have is inherited.  I’m guessing that it is Very Possible, since Mom had the Same type of cancer 26yrs ago…

June 25th, 2009
PARP inhibitors working against inherited cancers
Posted by Dana Blankenhorn @ 6:29 am

If a genetic condition leads to cancer there is new hope in a class of drugs called PARP inhibitors.

Poly (ADP-Ribose) Polymerase (PARP) is a protein cells use to repair genetic injuries naturally. But cancer cells also use this protein to repair their own DNA damage. Inhibiting this action allows chemotherapy and radiation to do its job against cancers resulting from genetic mutation.

In a study causing much excitement in the cancer-fighting world (CBS called this the “holy grail” of cancer research, thus the French Taunter above) scientists at the Institute of Cancer Research in Sutton, England gave 19 patients with advanced cancers caused by mutations in the BRCA1 and BRCA2 genes a PARP inhibitor and over half saw their tumors shrink or stop growing.

The drug had no effect on 41 patients whose tumors were not the result of the genetic defect.

The big excitement is that PARP inhibitors can be designed against other forms of inherited cancer. They are already being tested against a form of breast cancer. And there are few side effects — you take a pill twice a day and may get some indigestion.

The new drug has the name olaparib. The full article is now in front of the New England Journal of Medicine firewall.

The Royal Marsden NHS Foundation Trust, which worked with the Netherlands Cancer Institute and drug maker KuDOS Pharmaceuticals, now owned by AstraZeneca, is a charitable group affiliated with that nation’s National Health Service. They would welcome your contribution.

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Sunday, June 28th, 2009

NEWS: New Drugs Could Transform Cancer Treatment

OMG, the implications of this study!!!  I can’t stop crying, can’t stop hoping…  THANKS to Vicki for sharing this info with me at the Baby Shower yesterday!!!

I’ve GOT to find out if/how I can qualify for clinical trials!!!

PARP inhibitors appear to destroy disease, small but stunning study shows
Commentary
By Robert Bazell
Chief science and health correspondent
NBC News
4:13 p.m. CT, Wed., June 24, 2009

Just-released research about a new class of drugs called “PARP inhibitors” is the most exciting development in cancer research in a decade or more. In just a few years it could save thousands of lives.

In the longer term, the drugs could represent a transformational approach to understanding and treating several forms of the disease.

All this enthusiasm is based on a small report published today (June 24) in the New England Journal of Medicine. It focuses on one clinical trial in its earliest stage in 60 patients with breast, ovarian and prostate cancer. Some — but not all — of the patients whose cancers seemed hopeless saw them shrink drastically or disappear. Many avoided the typical side effects — nausea, hair loss — associated with cancer treatment.

Of course, as with any good science, it is not just that one report that generates such excitement. The new research builds on many years of solid basic science and on other clinical trials that are either completed or in progress, which appear to show similarly dramatic reduction of certain breast, ovarian and prostate cancers.

The story of PARP inhibitors began in the early 1990s, when some scientists realized that breast cancer ran in certain families, and that some of the women in those families had an extraordinarily high — as much as a 90 percent lifetime risk — of getting the disease. There was a frantic and well-publicized hunt for the “breast cancer gene.” The hope was that finding the gene could provide crucial information about the cause of breast cancer and how to treat it.

BRCA1, BRCA2 raise risk for breast cancer
In September 1994, scientists from a company called Myriad Genetics and government researchers simultaneously won the race. It turned out there were two genes called BRCA1 and BRCA2. As they studied the genes, the researchers learned that they account for between 5 and 10 percent of all breast cancers, as well as a similar percentage of ovarian cancers and prostate cancers in men who are born with the mutated gene.

The immediate result of the gene discovery was that families and individuals at high risk could find out when they were affected. That continues to this day. But for those at risk, the treatment options are limited: surgical removal or close monitoring of the organs that might become cancerous.

What initially eluded the scientists was how BRCA1 and BRCA2 caused cancer. “We found the breast cancer gene, but we don’t know how it causes breast cancer,” one scientist famously quipped.

Years of hard work eventually revealed the mechanism. BRCA1 and BRCA2 produce proteins that repair mistakes in DNA that occur continually as cells in the body multiply normally. If a person is born with one defective of copy of one of the genes, the cells continue to grow but there is a far greater chance that an error will occur in the DNA that will cause cancer to arise.

ARP inhibitors kill cancer cells
The next big discovery came in 2005 when scientists found in lab experiments that they could make a drug, called a PARP inhibitor, that would interfere with the normal copy of the protein made from BRCA1 and BRCA2 genes. If cells have defective genes, when the drug is added, the DNA cannot be repaired at all. As a result, the cells die. And that is how PARP inhibitors kill cancer cells.

In experiments so far, the drugs have worked only in people with BRCA 1 and BRCA2 mutations resulting in breast, ovarian and prostate cancers. But there is evidence they may work in people without the mutations — particularly in cases of ovarian cancer for which better treatments are desperately needed.

The story of the PARP inhibitors is fine example of how research can move from the laboratory bench to the bedside, and it also shows how long and difficult journey can be.

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Saturday, June 27th, 2009

Bob & Sofia – Melanoma Patient at Burzynski Clinic

When I got back home this evening, I found an email from Sofia

On 6/27/09, Sofia <(deleted)> wrote:
> Hi Denise, sorry for the late reply. I’ve been busy with work and Bob.
> Bob hasn’t been back to work since we got back from Houston. His blood
> pressure keeps going up and he gets very tired. We still pray and hope for

> the best We don’t know yet if any of his tumors have gone down. I’m glad
> to hear things are looking different for you. You are in our prayers. Take
>care.
> Sofia

It breaks my heart to hear that he is having a tough time.  I sure Hope he starts responding… Please keep praying for Bob & Sofia!

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Saturday, June 27th, 2009

Baby Shower – Raquel & Neil, June 27 2009

Today was a rare day – something non-cancer related – YAY!

Today was a Baby Shower for Dear Friends, Raquel & Neil who are welcoming their first – a Baby Girl.  (Raquel is from Brazil, and her name is pronounced “Ha-Kell”, and Neil is, well – Neil  *LOL*)

To say that her pregnancy was a surprise is putting it mildly.  They are mid/late-30′s and as long as I have known them (about 5 years) they have maintained that they did not want children.  Actually, I personally believe that it was more Raquel, cuz I always thought I could see in Neil’s eyes that he would love a child, but he loved Raquel more and knew that was how she felt.

I know Raquel is concerned about the type of parent she will make, especially cuz she thinks she will be too strict.  But, as I told her, children need the structure, they need the boundaries and the limits – otherwise you end up with what you see so many children have become these days – pain in the butt, spoiled brats that you don’t want to have around.  That Little Girl will have Neil Wrapped Around Her Finger, so Raquel will be the one to keep them both in line  *LOL*  She Will Be Fine.

It’s been a difficult pregnancy for Raquel, she’s been ill most of the time.  But, with their dispositions, this baby cannot be any less than a Beautiful person and a Beautiful child.  Raquel & Neil will make WONDERFUL Parents.

Anyway… the purpose of the post…

The Baby Shower was held at the home of R&N’s next-door neighbors, and Dear Friends, Vicki & Steve.  It is a Lovely home and is Great for entertaining!  Vicki & Steve both have grown children, and they are looking forward to a baby to cuddle and spoil right next door.  Plus they love R&N, so that makes it even better!

The Party was LOVELY.  I was worried – like many Baby Showers that I have been too – that there would be an abundance of sweets and no food of substance.  Since I am on a somewhat “restricted” diet which stresses no refined or artificial sugars, a menu of all sweets is pretty tough for me.  So, just in case, I brought some fruit and veggies for me to munch on.

Was I Ever Surprised to see that, along with one small chocolate (torture for me!) cake, and some brownies (more torture!), the majority of the food was Brazilian appetizers!  And I Love Brazilian Food!

There were coxinha (“little drumsticks” – soft, fried dumplings filled with savory, shredded chicken and covered with a soft, delectable pastry coated in fine breadcrumbs), pão de queijo (small, cheese-flavored rolls), shrimp, chicken and beef empanadas and empadinhas (a folded dough or bread patty around a flavorful  stuffing – one was a cornmeal dough, the other was a flaky pastry dough ), and shrimp and chicken empadinhas (small tarts).  The food was Wonderful and the Mimosas were Yummy!

And the Party was FABULOUS!  Vicki & Steve are Fantastic Hosts, and co-hosts Ellen & Martin were Just As Gracious!  A Lovely Baby Shower for a somewhat “older” crowd”.  The decorations were tasteful and somewhat low key, but still prevalent – there was no doubt it was a baby shower.  The games were FunFunFun – with prizes like sets of travel candles and bottles of champagne!

Games We Played:
* TP Belly – guess how much TP would go around Raquel’s belly once!
* Purse Weigh – (non-traditional Baby Shower game!) weigh all the Ladies’ purses and the Heaviest won!
* M&Ms in The Bottle – guess how many M&Ms were in the BIG Baby Bottle (M&Ms were pastel pink and purple and had “Raquel” printed on them)!
* Messy Diapers – 4 diapers with messes in them… guess which CHOCOLATE BAR was each mess (totally melted and smushed Almond Joy, Reese’s, Rollos, Musketeers – Very Authentic Looking, but Yummy Smelling  *LOL*)!

I had a Wonderful time, it was a Lovely day, and I took a BUNCH of photos!

CONGRATULATIONS TO RAQUEL & NEIL!!!

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Saturday, June 27th, 2009

Hairy Legs

Last night I dreamt that I had hairy legs – hairier than I have ever had in my life.

I remember looking down in surprise and thinking – “I’m Cured!!!!!”

What a dream…

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