GregP_WN

i went through the surgery to use leg bone to replace jaw bone in along with muscle to rebuild gum line july of 2013. Now goign to see if i can get dentures done on bottom now

Greg,

Someone has made a documentary about my cancer journey. If you would like to review it to see if it is good for posting here, let me now and I will send you link.

Dan

Gm Greg,Ty for your message..It comes and goes and not always for the same things.I dont feel the need to seek help for this since the gal i went to has never had cancer.What would she tell me that i dont already know..I feel asking questions on here is more realistic to my life than a dr who takes notes and looks at you like your "sick".How can you relate its not possible.All the schooling doesnt help me if you havent experienced what we have.I say i have been to hell and back.So i guess crying is a cleansing???I just want to understand where its coming from and why since i am cancer free now since Jan 7,2014 still a newbie but a very big milestone to add to my belt of things i have conquered in my life.Well I hope your doing well and all is good with you these days.Im sure the crying will go away and i wont realize its gone until it hits me that omg i havent cried in a while.Take care

Greg. Just thought I would let you know that the problem isn't totally fixed, but my husband discovered if the comments don't show up, which they usually don't, if I hit the view button on the tool bar and then hit refresh the comments show up and I can read them again. Don't know if that will tell you anything or not, but at least I can get back on the site.

Hello,
I receive a message on my wall whereas you stated how I was doing. I have not been on site as much being more involved in Relay for Life of Maricopa. I am the online co-chair. Currently learning more of backend. I did have a pain in hip and lower back but had Xrays, blood test, and Pet Scan. Still in remission I need to do things like. Make sure I exercise more, use old fashion heating pad, maybe go Jacuzzi every now and then. I have arthritis/orthopesis. I know I did not spell that right. How are things going with you? By the way I know you are busy man thank you for asking.

thankyou for making me feel welcome ,goodluck will talk soon , bob

Hi Greg,, I'm sick to my stomach another friend of mine has reoccurance,, how do I delete my profile here,, I've decided I need to spend more time in prayer. thx

Hi Greg -- Somehow my journey experiences got broken up between my multiple cancers. (In other words, I screwed up.) Is there a way I can just combine them into one journey?

Congratulations to an amazing couple! Thank you both for being such an inspiration!!

Hi greg, I hope that I'm selected to participate in that deal for BCC. It has an hour long phone survey, where I hope that they ask more intelligent questions. Most of the initial questions were about taking different chemo creams-so I'm not sure they want to talk to surgery or radiation patients. I think that is a shame. Also, they didn't ask if a person was in remission or not--- Also, it seems like they'd ask if the bone was involved or not.

What I don't like about the chemo cremes is that, so far, they keep the tumors below the skin's surface, it does slow them down, but they are still spreading and tunneling.

If they bother to call me, then they'll send me a video camera and I'd blathering about this for 5 days and send it back to them.

I'll let you go-by the way, if you get a chance to see "The Monument Men", do so. Clooney did it very tastefully, and did a good job of showing the sensabilities of the 1940s with a comedic touch. Like an Army doctor was smoking while he was listening to the lungs of a smoking man. I remember my doctor smoking, while I was saying-"Aah". The French were brave, the Americans honest and kind, the Russians fierce and determined. I'm half German, so I can say-the Germans were shown as scared, cruel, guilty, and brown nosers. It showed that 12-13 year old boys were given rifles to fight for Germany-which is true.

Greg, when more women are diagnosed and die from lung cancer each year in America, it seems like more money should be spent on lung cancer research. I think that there is an unconscious bias toward people that have a cancer that could be prevented. People with breast cancer don't have that stigma. People think -OK-the lung cancer was caused by smoking, People forget that there are female miners, construction workers, farm workers, women on assembly lines with cancer causing agents, etc.

I've signed petitions by people about the disparity in rationing the money. Probably one reason we have so many breast cancer patients/survivors around is because of the money spent on research, which is great.

I wouldn't wish any cancer on anybody. I know that breast cancer is horrendous, but I've also read opinion pieces by oncologists and researchers about this issue throughout the years.This is how I've come to this conclusion. Did you know that Brazil is the world leader in researching and treating ovarian cancer? I'm just saying that maybe it's time for research to be dictated by statistics.

A few years ago, I had a friend in American ovarian cancer research, so I am aware of other research. I don't mean to sound pompous, but I'm not the only one that feels this way. I did purple my page so somebody-no matter what type of cancer they have- will benefit from Chevy's effort to help everyone.

Greg, Re HER2-negative Breast cancer - I don't know what to do with this or where to post information I got from a friend at NIH. It appears legitimate. Author info at the end. Can you help? aor maybe it has no place here -- I dunno. Thanks. jad

Sent: Tuesday, December 31, 2013 1:36 PM
Subject: New drug for HER2-negative breast cancer

Do you know anyone this could benefit? If so, please pass it on.

BMS's Leukemia Drug Shows Promise in Holding Breast Cancer at Bay in HER2-Negative Patients

December 24, 2013

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By Turna Ray

Originally published Dec. 23.

A leukemia drug that inhibits a cancer-linked protein called Src has shown early promise in stopping the spread of hormone receptor-positive, HER2-negative breast cancer, researchers reported at the San Antonio Breast Cancer Symposium earlier this month.

However, due to the small size of the study, researchers believe their finding needs further confirmation. They also urged for the identification of biomarkers that can home in on molecularly-defined subsets of patients who derive the most benefit from Bristol-Myers Squibb's Sprycel (dasatinib) and letrozole.

Sprycel is an inhibitor of the Bcr-Abl and Src tyrosine kinases and is currently marketed as a treatment for chronic myeloid leukemia and Philadelphia chromosome-positive acute lymphoblastic leukemia. The Src protein has been shown to spur the spread of estrogen receptor-positive breast cancer to the bone. As such, a Src inhibitor, such as Sprycel, may prove to be a future option for certain molecularly-defined HER2-negative metastatic breast cancer patients, a group that has limited treatment choices that impact their survival and improve the quality of their lives.

At SABCS, researchers presented data from a 120-patient Phase II study in which women with advanced hormone receptor-positive, HER2-negative breast cancer were randomized to receive either Sprycel plus standard anti-hormone treatment letrozole or just letrozole. In the trial, funded by BMS, researchers wanted to primarily assess the clinical benefit rate of patients on each regimen, by combining the number of patients who experienced a compete response, a partial response, and stable disease for six months or more. They also gauged toxicities and progression-free survival how long during and after treatment patients' breast cancer didn't get worse.

The addition of Sprycel to letrozole didn't significantly impact the clinical benefit rate (71 percent on Sprycel/letrozole vs. 66 percent on letrozole), but it did double progression-free survival, reported researchers led by Dev Paul of Rocky Mountain Cancer Centers in Denver, Colo., at the meeting. Patients receiving Sprycel plus letrozole had median progression-free survival of 22 months compared to 11 months for those on letrozole. Those receiving Sprycel did experience more side effects than those in the letrozole-only arm, such as rash, but Paul and his colleagues didn't identify any severe adverse reactions in the Sprycel-receiving cohort.

The size of the Phase II study was small and its design was a non-comparative, parallel group randomized trial. When patients in the letrozole-only arm progressed, they could switch to the Sprycel arm. Similarly, if patients experience adverse events to Sprycel they could not tolerate, they could switch to just letrozole. This could have impacted the study findings.

While most patients tolerated the full Sprycel dose (100 mg), 27 percent needed a dose reduction. Meanwhile, researchers crossed over 35 patients on letrozole who progressed on the single agent to receive Sprycel plus letrozole, and 23 percent had a clinical benefit rate.

"This data suggest that maybe dasatinib is inhibiting the emergence of acquired resistance to oral aromatase inhibitor therapy," Paul said at SABCS. Letrozole is an aromatase inhibitor commonly given to hormone receptor-positive breast cancer patients after surgery. He noted, however, that other studies have shown that Sprycel doesn't seem to extend progression-free survival in metastatic breast cancer patients previously treated with aromatase inhibitors, suggesting that the response to Sprycel may be most pronounced in those receiving aromatase inhibitors for the first time.

Despite the positive impact of Sprycel and letrozole on progression-free survival, Paul and colleagues noted the need for a biomarker that is associated with Src activity in breast tumors and that healthcare providers can measure to identify best responders to the regimen. Researchers are looking for biomarkers in archived breast cancer patients' tissues to help inform patient selection for future studies, Paul said at the meeting.

Paul told PGx Reporter that BMS is searching for a Src biomarker, but the firm hasn't yet identified it precisely. BMS has“narrowed it down to eight or nine [markers], and it seems to be tissue specific,” he said. “It might be all eight or nine that we need, or they may narrow it down further.”

The US Food and Drug Administration approved Sprycel first in 2006 as treatment for chronic phase CML and Philadelphia chromosome-positive ALL patients who are resistant or intolerant to previous therapy. Then in 2010, the agency again okayed the drug for chronic phase, Philadelphia chromosome-positive CML. By inhibiting proteins, such as Bcr-Abl and Src, which spur growth of cancer cells, the drug enables the bone marrow of leukemia patients to produce red and white blood cells.

BMS is studying Sprycel in a number of different cancers, and breast cancer is a main focus. In partnership with MD Anderson Cancer Center, BMS is studying Sprycel in combination with zoledronic acid in breast cancer patients with bone metastasis. The partners are also investigating if Sprycel can decrease the level of biomarkers known to drive breast cancer and prevent the spread of the disease to the unaffected breast. BMS is studying the drug in advanced triple-negative breast cancer patients and those with HER2-positive, hormone receptor-positive patients.

Sprycel garnered more than $1 billion in sales last year. The drug, which has patent exclusivity until 2020, is projected to bring in nearly $2 billion for BMS by 2018.

http://www.genomeweb.com/sites/default/files/turna.jpg

Turna Ray is the editor of GenomeWeb's Pharmacogenomics Reporter. She covers pharmacogenomics, personalized medicine, and companion diagnostics. E-mail Turna Ray or follow her GenomeWeb Twitter account at @PGxReporter.

Hello. I don't know if this is like private messaging.
Since you seem quite active on here, I thought
I would pass this on to you. The first is rxoutreach.
They are a nonprofit pharmacy at St. Louis. They
Are available nationwide. They deal primary with
generics. Most cost $20 for a 6 month supply, free
Shipping.
Second, many people may have went with
The bronze plan, so they may need to stand
the first $5000. Many things such as labs
And radiology exams are paid by the deductable.
Look at direct labs, they have discounted
Lab tests. In most cases you don't need an
rx, and they send the results to who
YOU specify. ((This is actually lab corporation)).
Also on direct labs website there is a link
To a discount immaging programs where
You can save 30 to 70% on CT, MRI, etc.
Look them over, if they pass your mustard,
They could be good resources for some.

Greg, I'm glad your test went well. I trust you kept 'em rolling in the aisles with your jokes! Best, Carol

Greg - how did everything go today?

Hi Greg. I have back to back meetings tomorrow at work and did NOT want to take a chance on missing the window of opportunity to wish you luck on the colonoscopy. Keep the faith that all will be okay. (I hope you have your comedic material all lined up : )

Greg, I, too, was having stroke symptoms for at least a week before I "flipped out" and my family called 911. I had very severe heart pain/pressure for a week and then a severe, debilitating head pain for at least 4 days before I became incoherent and combative. I hope your stroke was as small as mine, and that you are now well on the road to recovery. I can recommend physical therapy for any lingering symptoms (I'm still slow, unsteady, and confused); and had my first physical therapy appointment today. I know they will help me get back to being better than I was before the stroke! I wish you strength and sunshine and improvement.

Nick, my dearest friend is the one going through a extreme rough time. I'm taking care of him...

Greg, I don't know how to get this out to the leukemia and lymphoma folks since that is not my type of cancer, but the 9th annual Lone Star Blood Cancer conference is Saturday Feb. 22, 2014 from 8:30 - 4. It is at UT Southwestern medical center in Dallas.It says, "Come hear the latest on disease management and survivorship from top hematology/oncology specialists!" Totally free, but registrataion is required at (800) 800-6702 or www.lls.org/ntx/lonestar

Thank you Greg for your welcoming message and also for your post to my query regarding elevated cholesterol. I truly appreciate the openness in others sharing their experiences so that we can learn from each other. Thank you.

Thank you

You are such a wonderful person to have gone through so much yourself and still be able to help so many people. You really must have a big heart. We all should thank God for you and all your support. God bless you!

HI Greg, John's getting worse. Is there a better place for me to go to than WN? I feel everyone wants inspirational stuff - and I fear our stuff will be a bit too sad. Heck, it's a bit too sad for us. Let me know if there's a better place for me to post to. Thanks,

Greg, I am putting you on the top of my prayer list starting NOW! Good luck next week, keep the faith, and I know you, of all people, can handle whatever the outcome...remember what we always say to others: you are not alone in this...you have your family and you have US! God bless.

Good afternoon Greg - hoping my messages finds you feeling well!! Not sure why but I have been unable to respond to your posts?? Cold & what if's - - anyways as for cold funny thing as a Northern boy in my youth I laughed at constantly!! played / hunted in it often and hard and a few times worked in it! And I mean 50 below at times! Well life is funny! Lost allot of tolerance for it over time! Broke down and bought my 1st pair of driving gloves in 2006 it has certainly bothered me allot more since Oxyplatin in 2012!! I think your observations about What if's is spot on for people in our situations! Kinda one of those things - there is a place and time for every thing even "What if's"!! Knowing when that time is - is critical - knowing when to exercise the old what if along with when not to is phenomenal!!

Greg, could you pretty please give my e-mail to lilymadeline? Thanks a bunch.

Hi darling, I hope that you and your family had great holidays. I want to thank you for the care you give this site.

I'm glad that you didn't allow yourself to be tubed. I'm appalled that they are tubing people and not providing a trained nurse or, better yet, a speech pathologist to assess these people to keep them from choking on a sip of water. My daughter gave these poor patients pacifiers to suck, because that sets up the working of throat muscles without a chance of them choking to death.

Right now my oncologists are laying the law down to the other DRs. that I should not lose weight. I never contacted my oncologist because I knew it wasn't cancer or radiation.

I had a fabulously wealthy aunt that did ranch work in her old age. They wanted her to lose weight for a hernia repair. She did everything that they told her to do. She got tired of the doctors, and she hurt- cussed the doctor out and dared him to put her in a hospital for a week or 2. They did that. They gave her some lettuce, hard boiled eggs, cottage cheese, and grapefruit. Lying around in bed all day caused her to gain weight. They did her surgery.

I'll be 72 on the 27th. I had a doctor ranting on me that I needed to weigh 120 lbs. Like many slim cowboys that worked hard, now that I'm old and not riding-I have a belly. The muscles in my arms and legs are defined. I thank god for my oncologists.

Oh, I had a brain fart below. Missy was wanting attention and I had a gap-big jump from one subject to another. I didn't go to my oncologists about the strep, because I knew it wasn't related to cancer. It looks like I officially had one year of remission. I now have 2 non-cancer doctors that I trust- my ENT and a GYN. I was given a card with a code word on it for an immediate appt at GYN if I ever need it. When I had the tonsil problem, my ENT got me in the next work day-there wasn't even room to sit-but he fit me in.

Hi Greg! I'm Linda Bruzzone, President of Lynch Syndrome International. Love what you are doing.... Our website is at www.lynchcancers.org and addresses everything Lynch....comprehensive, we have information on preparing for surgeries, information about surgeries, information about chemo, hair loss, neuropathy, nails, diet, exercise, genetic testing, genetic counseling, information on the mutations, the risks, the management and the ongoing cancer screens, etc. We also have the latest studies posted and information on everything Lynch..., please visit us, learn more and keep up the great work with support. We also have a dedicated web page for thousands with Lynch syndrdome. Thanks! Linda

GregP You wanted to know about my trip to Houston went.... CA19-9 down to 47. It was 67 in October. I have not had any chemo since the oral chemo I took in connection with my radiation in June! My blood work was picture perfect and the CT has not changed in 2 months. The doc wants me to see my local oncologist for blood work and port flush once a month. He will see me again in April. I know deep in my heart that it is all the prayers that have been said on my behalf since this all began 12/23/2013!