Dr. Vincent Tuohy's Research on Breast Cancer Prevention Vaccine

Dr. Vicent Tuohy, Toni Turchi
and Melissa Paskvan

October 5, 2013, I had the pleasure of meeting Toni Turchi, my Triple Negative Breast Cancer Survivor and founder of the Toni Turchi Foundation and Dr. Vincent Tuohy, the researcher behind the breast cancer prevention vaccine. I spoke and listened to Dr. Tuohy, and I'm telling you, this is a story you should be following... waiting on FDA approval to go forward with a Phase 1 clinical trial.
Pictured with me is Toni Turchi and Dr. Tuohy at the Toni Turchi Foundation 5k run/walk benefiting the Cleveland Clinic and the research of Dr. Tuohy's vaccine.

Press Release Sept. 17, 2013
http://my.clevelandclinic.org/media_relations/library/2013/2013-09-17-cleveland-clinic-innovations-creates-spin-off-company-to-develop-vaccine-for-preventing-breast-cancer.aspx 
(Click link to full story)

“We have proposed that breast cancer may be effectively controlled by providing healthy cancer-free women with pre-emptive immunity against emerging breast tumors,” said Tuohy. “We propose to provide women with an immune defense or shield that will protect them from developing breast cancer. Our data show that safe and effective immune protection against this disease can be induced by vaccinating against proteins that are no longer expressed in aging breast tissues but are significantly overexpressed in triple-negative breast cancer, the most aggressive and lethal form of this disease. We hope to provide women with a safe, effective and relatively benign alternative to invasive prophylactic mastectomy.” - Dr. Vincent Tuohy

Melissa meeting TNBC sister Toni Turchi in person

We're all breast cancer survivors!

Melissa Paskvan walking for the Vac

Toni Turchi's for breast cancer research

TNBC survivor Cheryl and Melissa

Dr. Vincent Tuohy and Judy Fitzgerald
of http://www.sisters4prevention.com

Melissa Paskvan and Dr. Vincent Tuohy

Breast Cancer Awareness Month: I'm Angry, I Hate Cancer!

Words of Janelle Wade written in October 2012 after being diagnosed with Triple Negative Breast Cancer a few months prior. Janelle passed in September 2013. I wanted to share this posting as we go into Breast Cancer Awareness Month:

"October 1st. And unless you've been living under a rock, you know that today is the beginning of "Breast Cancer Awareness Month".

I've been complimented on my positivity in facing this disease. I try, and my new philosophy is that unless you can joke and find humor in your life, regardless of what is handed to you, you will become nothing if not a bitter and hateful person. But today, the first day of a month to become aware of something I'm aware of every damn day, I get to be angry.

I'm angry that I have breast cancer.

I'm angry that in 2 weeks I will have both my breasts removed. I'm angry that I can't reconstruct. I'm angry that I'm having lymph nodes removed. I'm angry I may face a lifetime of lymphedema. I'm angry that I face a lifetime of being maimed. I'm angry that I still feel my cancer, my tumor, every day because it never went away.

I'm angry that it's taking away everything about me that is feminine. I'm angry that it took my long hair, my eyebrows, my eyelashes, my nails,and now my breasts. I'm angry that I look nothing like I used to.

I'm angry that I'm leading my family into the poorhouse. I'm angry that we make too much to qualify for assistance, yet not enough to be able to pay my medical bills. I'm angry that my insurance company says I met my deductible, but that my cancer bills are above reasonable costs which leads to even more outrageous costs.

I'm angry that my son is having to grow up too fast. I'm angry that my son knows too much about cancer. I'm angry that my son had to cry to me yesterday because, after my surgery, my hugs won't feel the same. I'm angry for what it's done to my family. I'm angry that my husband is having to drop everything to take me to doctors and hospitals. I'm angry that we'll be "celebrating" our 10th wedding anniversary with me in bandages. I'm angry that my parents are having to see their daughter sick.

I'm angry that I'm having problems planning for the future. I'm angry that I feel like I can't think in terms of years. I'm angry that, when my husband says "Let's plan on doing this in two years", in the back of my mind I wonder if I'll be here in two years. I'm angry that I may not get to enjoy my retirement with my husband. I'm angry that I may not get to see my children grow up. I'm angry I may not get to see my granddaughter grow up. I'm angry I may not get to meet my future grandchildren.
I'm angry. I hate cancer."

~Janelle Wade

Scientist Identifies Triple-Negative Breast Cancer Target for Drug Development | ucsf.edu

"UCSF researcher Luika Timmerman, PhD, an investigator in the UCSF Helen Diller Family Comprehensive Cancer Center, found that many cell lines obtained from triple-negative breast cancer are especially dependent on cystine, one of the 20 amino acids that are the building blocks of proteins that all cells need. She used an FDA-approved drug to inhibit activity of a transporter protein that ferries cystine into triple-negative breast cancer cells, and found that it significantly inhibited their growth in culture and when the cancer cells were transplanted into mice..."

Scientist Identifies Triple-Negative Breast Cancer Target for Drug Development | ucsf.edu (Click link to story)

Que Sera Sera... Remembering Triple Negative Breast Cancer Sister, Janelle Wade

Tomorrow is never promised...

"Please, please, please, don't underestimate being grateful. 

Enjoy it. Relish in it. It's quite an extraordinary thing."

~Janelle Wade

"If we can leave behind a legacy of love
and memories, then we are blessed and
richer than anything money can buy."
~ Janelle Stauffer-Wade

After a courageous battle with Triple Negative Breast Cancer, Janelle Stauffer-Wade, 41 was called home to her Lord on September 16, 2013, releasing her from her pain. Janelle fought with all she had, to stay around for her son for as long as she can. I know this was heartbreaking for Janelle to have her 8 yr. old son worrying about how sick she was.... 

Janelle's journey started in April 2012 when she was diagnosed with stage 3 Triple Negative Breast Cancer at the age of 39. In just 2 short weeks of diagnosis, Janelle's breast tumor had grown from 2cm to 4cm and has spread to 10 lymph nodes and her chest wall. Janelle had undergone dose dense AC/Taxol neoadjuvant chemotherapy, a double mastectomy and 35 rounds of radiation finishing treatment mid-January 2013. Just being off from treatment for 2 months, Janelle's first post-treatment pet scan showed mets to both of her lungs. Not the news Janelle expected. April 2, 2013, she started chemo again, Cisplatin/Gemzar, but the lung tumors progressed in size.  
May 2013, Janelle's chemo was switched to Carboplatin/Taxotere, again the cancer continued to spread and grow. June 2013, Janelle's cancer had spread rapidly in her body and had invaded her liver.  
"Dear God: Please keep my mom, my dad, my dog and my family safe. Please God. I'm really scared. Amen". - my son 
Janelle's oncologist spent the next 3 months trying to get her into a clinical trial... "I will have to say that, if anything, this has taught me that you HAVE to be proactive about your health." Janelle spent this time off with spending time with her family and a trip back to her hometown. August 2013 scans showed spread to her bones, multifocal metastastic disease involving the brain and progression in her lungs and liver. 
Posted in our online support group from Janelle, "Thank you, everyone, for your love and support. I don't know what I would do if I didn't have each and every one of you in my life, even if it is my virtual life. I hope you all know how much I love and respect you!!!" We loved Janelle too!
Janelle promised her son that she was fighting this cancer really, really hard and that she fights her hardest when he fights alongside of her. Janelle had undergone full head radiation but sadly, her cancer began to overpower her...

One thing that was always constant of Janelle, was her always being upbeat and witty as she accepted her recurrence... "It's weird, maybe, but I feel almost... relieved? ...that I'll never have to obsess about whether or not it will be back. It is. And we deal with it."

Janelle had gotten a new tattoo on her wrist after her recurrence, "Que Sera Sera" from a song that her mother used to sing to her when she was a little girl,  "Whatever will be, will be." As Janelle started her new journey, her tattoo was a reminder that whatever is, is.  
Janelle was selfless and was a beautiful soul. We'll miss Janelle in our group of ladies, emptiness is already being felt. Love you and God Bless your family. 


Janelle's last post in our TNBC Sisters group dated Sept. 1, 2013:

About a year ago, after I decided to leave my job and devote all my time to me and my health, I sat up late one night perusing the internet for a like-group of women who had the same weird breast cancer I had. This breast cancer with these weird initials (TNBC??) that I had never heard of before. I needed someone to connect with. Who knew what I was going through. Who I could find support from, but somewhere I could give support to others. And I found it here on Facebook. Facebook - this silly little social networking site. That's sometimes a bit of a joke, when you speak of it you shrug a bit, perhaps in a bit of shame that you are soooooo involved in reading Facebook at 1:00 in the morning when there doesn't seem anything else to do, silly games (Candy Crush, anyone? I said I'd never do it....eating my words now!)
So I find this group of women on FB. A private group of women, spread out not only over the US but the world. For this past year, I have gotten to know these women. Our tiny group of probably less than 100 women has now exceeded 400. These women I have never met in person have become my cocoon of support and of love.
And last night I was honored and blessed to meet in person 2 of my sisters. I've known them for a year, and finally got to meet them in person. Hug them, see their faces, their crazily familiar faces that I feel I have known for years. I am so blessed, beyond words, beyond anything I can say. Thanks for making the trek to Vegas, and the trek to my house. I love you ladies so much, I am so thankful to know you, and to count you more than friends but close sisters. — with Ronise Zenon and Reata Gfm.

"Celebrate everything!"
Reata and Ronise Zenon visiting Janelle

"But you ladies, from day one, have been a sister to me. You are understanding, you get it...our wonderfully dysfunctional family. You all understand what every single one of us is going through. You ladies stick up for each other more than blood relatives often do."

~ Janelle Wade 

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18

14th Honoree - Janelle Stauffer-Wade

http://www.komensouthernnevada.org/komen-race-for-the-cure/18-faces-for-18-races/14th-honoree-janelle-stauffer-wade.html (Click link to story)

Woman Fights Rare Breast Cancer

http://www.8newsnow.com/story/22111243/woman-fights 
(Click link to story)

CaringBridge
http://m.caringbridge.org/visit/Janelleraewade (Click on link)

Janelle Wade Obituary
http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Janelle-Wade&lc=1011&pid=167020862&uuid=229f8562-d871-479d-b099-9611cbffe490&locale=en_US (Click on link)

Triple Negative Breast Cancer Article Published in Fall 2013 Issue of Cure Magazine

A few months back I was contacted by a writer from Cure Magazine asking if I would mind telling my story for an upcoming Fall issue of Cure featuring Triple Negative Breast Cancer (TNBC). Of course I agreed, anything to bring more awareness to Triple Negative Breast Cancer. I talked of our online support group and how all of us TNBC met up in Seattle for the C4YW breast cancer conference and how I met Brenda Beguin. I spoke of Brenda's amazing story of her triumph over her TNBC recurrence and being NED for the past 2 years giving other Stage 4 ladies HOPE.  The writer was very interested in hearing from Brenda and wanted me to ask Brenda if she would be up to talking with Cure magazine. Absolutely... Brenda's story needed to be heard and to have her story published in a magazine that will be displayed at every oncologist office, breast surgeon's, chemo and radiation waiting rooms, she'll be reaching out to every TNBC Stage 4 patient that is looking for a miracle and giving them hope and renewed strength to never give up.
Brenda, Thank you my sweet sister for your strength in reliving your journey thus far and sharing your story with everyone throughout our country. I know it wasn't easy but you did it, you're surviving and your helping other women.
Also, great article on TNBC and treatments in the pipeline.

Read the article in Fall 2013 Issue of Cure Magazine:
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2157 (Click link to story)

I traveled from Ohio to Seattle, Wa.
to give Brenda Beguin a hug in
person at the Young Survival
Coalition Conference.

"...Throughout her journey, Beguin found hope at Seattle Cancer Care, and strength in online support groups, where she and Paskvan became close friends."

Toni Turchi Foundation October 5th Race with Guest Speaker, Dr. Vincent K. Tuohy

Register now for this event, all proceeds will benefit Dr. Vincent K. Tuohy's further research on his breast cancer prevention vaccine to move this into trial phases and ultimately get this FDA approved. Link to video interview of 
Dr. Tuohy explaining his breast cancer prevention vaccine.

http://www.wkyc.com/news/article/314672/3/Cleveland-Clinc-team-develops-breast-cancer-vaccine (Click link to story)

www.toniturchifoundation.org

Toni
Turchi

On October 5th, 2013, I will be in Cleveland for this fundraising benefit with proceeds going towards Cleveland Clinic's Dr. Tuohy to further his research of his breast cancer prevention vaccine.

TNBC sister, Toni Turchi who is the founder Of Toni Turchi Foundation has personally invited me to this event where Dr. Vincent K. Tuohy will be guest speaker. I'm excited to meet both Toni Turchi and Dr. Tuohy and learn more about his vaccine for breast cancer prevention.

Origami Owl TNBC Awareness Locket

"Living Lockets - Every Locket Tells A Story... What's Yours? To create your Living Locket, first select Charms that have meaning to you. Next, choose your favorite Locket and Chain. Finally, add personality with a handstamped metal Plate or Dangles. It's that easy!"
Inspired by the idea from another TNBC sister, I had this TNBC awareness locket necklace made up for myself that I think is a beautiful piece of jewelry that represents my journey. One of my TNBC sisters is an independent sales consultant of Origami Owl's Living Lockets and will be happy to assist you with creating and ordering your own locket at
http://sepeters.origamiowl.com/

TNBC Foundation Spotlight Stories

I am honored to have had my story published on the Triple Negative Breast Cancer Foundation (TNBCF) website in their Spotlight Stories section.  
https://tnbcfoundation.org/spotlight-stories-melissa

"KEEPING TNBC AWARENESS IN THE FOREFRONT..."

Robin Roberts Thrives in Mandisa's Video, Overcomer

Robins Roberts faced her battles and came out on top,  becoming an Overcomer. Robin overcame Triple Negative Breast Cancer in 2008. Now after a bone marrow transplant and treatment, she is beating MDS, a rare blood and bone marrow disease know as preleukemia. Robin Roberts' recovery is featured in Mandisa's new video, "Overcomer."

My Notes From a Genetic Testing Presentation

Recently, I went to a presentation on Genetic Testing and took some notes to share. I know that me having Triple Negative Breast Cancer and being diagnosed at under age 50, I have an increased risk of inheriting a BRCA1 or BRCA2 faulty gene. I have not been tested yet mainly because of financial reasons. I am learning more and more about heredity breast and ovarian cancers, and I'm coming to terms that "power of knowledge" can have an effect on my future health. I know how serious this is to get tested and to know one way or another so I can be proactive if there is a risk.

Heredity Breast and Ovarian Cancer (HBOC) syndrome is an inherited condition that causes an increased risk for ovarian, breast, pancreatic and prostrate cancer. The vast majority of hereditary breast and ovarian cancer is due to an alteration or gene mutation in either the BRCA1 or BRCA2 genes.  These genes mutations can be inherited from either your mother or father.

Sporadic Cancer- Occurs by chance

Familial Cancer- Not inherited. Combination of genetic and environmental risk factors.

Hereditary Cancer- Altered gene passed down from parent to child.

Genetics  

Evaluate pedigree going back 3-4 generations:

 ❍ = Female, ❒ = Male

      ❍——————                             ————❍————

          Anna Keenan  ❙                              ❙                              ❙  Bertha 

      G. Grandmother  ❙                              ❙                              ❙  Great aunt

 Age 58, Lung Cancer ❙                              ❙                              ❙  Breast Cancer

                   ❍ ——— —                  ————❍                   ❍

                                      ❙                ❙  Hulda 

                                      ❙                ❙  Grandmother, 62

                                      ❙                ❙  Cancer of Spine/Tailbone, Buttocks

                       ❒——— ————————❍

           Joseph W. Stukenborg   ❙

                            Father, 59   ❙

                            Melanoma   ❙

                                            ❍ Melissa Paskvan (my profile)
                                                 Me, 41

                                                 Triple Negative Breast Cancer

11-18% TNBC is BRCA Positive

Who gets hereditary cancer testing? Having a significant family history of breast and/or ovarian cancer
- Breast Cancer diagnosed before age 50
- Ovarian Cancer
- 2 breast cancers
- Male breast cancer
- Triple Negative Breast Cancer
- Ashkenazi Jewish ancestry with heredity cancer
- 3 or more hereditary cancers on one side of family
- Previous hereditary mutation identified

Genetic Counseling

Follow-up Appointment- Must have referral

↓

1) Diagnosed under age 45

2) Preventative - Have 2 or more Family History

- Early 20's - Get genetic testing if heredity.

or

Additional screenings and treat as being positive until she gets tested.

-  Children of diagnosed parent - Child should start screening at 10 years

younger than parent's age at diagnosis.

Testing

• Blood test to determine if a woman is "highly susceptible" to breast and ovarian cancers.
• Only way to identify gene mutation carriers of BRCA1 or BRCA2
• Inform yourself on medical management decisions to reduce cancer risk
• Determine family members risk
• If gene mutation in immediate family, 50% chance of inheriting same gene mutation 

BART    }  90 %

BRCA1  }  Accurate

http://www.myriad.com

Myriad - More reliable results

             - Largest Data Base

             - Testing since 1990's

             - Less than 3% inaccuracy 

             - Cost $4000

             - 2 weeks test results 

GINA - Genetic Information Non-Discrimination Act

           - Protects Employment and Health Insurance

Bright Pink - The Little Bright Book A national non-profit organization providing education and support to young women who are at high risk for 

breast and ovarian cancer. (Young 20-30's ladies trying to decide on pursuing testing)

BeBrightPink.com

BRCA Positive Result options

1. Increase Surveillance 

• Monthly breast self exams at age 18, clinical breast exams twice a year at age 25
• Yearly screening with both mammogram and MRI starting at age 25
• Pelvic exam twice a year at age 35
• Ovarian ultrasound and CA-125 levels in blood twice a year

2. Medicine risk reduction

• Tamoxifen reduce breast cancer risk up to 53%
• Birth control pills reduce ovarian cancer risk up to 60%

3. Preventative Surgery

• Preventive mastectomy (breasts removal) reduce breast cancer risk up to 90%
• Preventive Oophorectomy (ovaries and fallopian tubes removal) reduces risk of ovarian cancer up to 96% and breast cancer risk up to 68%

USPSTF - Law for Affordable Care

↓

Qualify for 100% Coverage

BRCA 1, Diagnosis Rate        \

50-80% Breast Cancer           \

40-60% 2nd Breast Cancer      \
30-45% Ovarian Cancer             \

                                                     \      All Connected

                                                     /

Colon Cancer                               /

Pancreatic Cancer                      /

Male Breast Cancer                  /

Prostate Cancer                     /

In May 2013, 37yr. old actress, Angelina Jolie, made a choice to have a preventative double mastectomy knowing she carried the BRCA1 gene.

"For any woman reading this, I hope it helps you to know you have options," Jolie wrote. "I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices." - Angelina Jolie

http://www.cnn.com/2013/05/14/showbiz/angelina-jolie-double-mastectomy 
(Click link to story)

http://www.ohsu.edu/blogs/96kmiles/2013/05/15/angelina-jolies-double-mastectomy-and-brca-genes/?WT_rank=6 (Click link to story)

Today, I Celebrate Life, 4 Years of Remaining Cancer Free...

Last February, my blog, "Triple Negative Breast Cancer, I Won't Back Down!" was selected as one of the top breast cancer blogs on the Internet. I have over 100,00 views to my blog. I take great pride in my blog in sharing worldwide, the latest in TNBC research and stories of inspiration while keeping awareness in the forefront as early detection is critical for TNBC survival.  This week I went live in becoming an Author on "Treatment of Cancer" website and able to post my blog stories there. I published this story as my very first time as being their guest blogger:
http://www.treatmentofcancer.com/triple-negative-breast-cancer-community-remembers-lori-redmer
I just want to make clear that I am not a writer and nor do I want to be. I write to express my feelings and my experiences through my blog postings, it's more therapeutic for me in dealing with this dark cloud overhead of this 15% threat of recurrence for me. I don't know if that figure is even accurate... since my diagnosis, there has been 6 more sub-types of TNBC discovered with different degrees of aggressiveness. I don't know which of these 6 sub-types was my tumor and I may never know. It has gotten easier as time pasts as I focus on my 85% survival rate. I'm pretty confident that I'm going to remain healthy for a very long time. I've been very fortunate with making it to my 4 yr. mark of survival... This is a big deal for us TNBC sisters for most TNBC recurrences happen within 1 to 3 years of original diagnosis. 
TNBC research has progressed very slowly and there is still no known targeted therapy in the near future.  The fear is still there, for all us... We know if TNBC shows it ugliness again, it will come back with a vengance and that is what all of us TNBC sisters fear the most.  We've seen this monster show back up way too much in our support group and have wrongfully taken many wonderful young women from their families. Us sisters have discussed many times on how we identify ourselves as survivors: Cured, cancer-free, remission or NED (no evidence of disease). Tho my oncologist has told me on more than one visit that I'm cured, I have learned to not use that term so loosely, because the uncertainty always remain. Today, I celebrate life, 4 years of remaining cancer free! It's the little things in life that make me smile and laugh. Thank you to my husband, my son, my family and my friends for always making me feel loved and for your understanding as I continue to fight for my TNBC sisters in hope for more tomorrows for all. I love you all!