Kay Kays | A 30-Year Pancreatic Cancer Survivor
30-Year Pancreatic Cancer Survivor Kay Kays Pushes for Progress in Research, Funding & Detection
Diagnosed: 1994 at Age 44
Survivor: Still In Remission
Written By Julia Brabant
October 2019 (Updated October 2024)
In comparison with the four other forms of cancer that claim the most lives, pancreatic cancer is the least-funded and toughest to detect, but this wasn’t something Kay Kays planned to sit back and accept.
One of the longest-living pancreatic cancer survivors, Kay first began battling the deadly disease back in 1994, after suffering severe back pains. Initially, she was thrilled to find out she wasn’t dealing with gallstones, but her joy was short-lived. She soon learned, thanks to the help of some diligent interns, that she had pancreatic cancer. Likening the diagnosis to “getting hit by a freight train,” she had little time to let the news sink in before finding out she was a candidate for the Whipple procedure, which involved, as she put it, an “extensive re-plumbing of the digestive system.”
Soon after having the head of her pancreas removed, Kay learned that she not only had pancreatic cancer, but that she had cyst mucinous adenocarcinoma, a rare, slow-growing form of the disease for which there was no form of treatment available. Without chemotherapy or radiation as viable options, Kay’s doctors told her that, should her cancer return, she would likely succumb to the disease within four to six months.
Five full years passed before Kay found out that cancer had, in fact, returned to what remained of her pancreas, at which point she had both her pancreas and spleen removed. She felt hope for the first time in a long time, but that hope was short-lived, and she soon learned that the cancer had metastasized to her lymph nodes. At this point, doctors deemed her inoperable, but after reading an article in a newspaper about pancreatic cancer researcher Dr. Daniel Von Hoff, Kay made an appointment to meet with him and learn more about potential treatment options that might not have been available when she received her initial diagnosis.
“The man is a bulldog,” she said. “He’s not only a fantastic researcher, clinician and mentor; he’s a fantastic patient advocate. He’s more patient-oriented than any doctor I’ve ever met.”
About eight years after her initial diagnosis, Kay took advantage of one of those novel treatment options and underwent “neoadjuvant” chemotherapy, or taking chemo drugs before surgery, rather than after, using the drug gemcitabine. At the time, there were very few clinical trial options available due to a funding shortage, making Kay’s access to this treatment especially significant. The neoadjuvant therapy had its intended effect and shrank Kay’s lymph node tumor to the point where doctors could remove it.
Several years later, Kay’s cancer reemerged in her lung. She ended up having a portion of it removed. Now, 30 years after her initial diagnosis, Kay may not have a pancreas, spleen, gall bladder or a full lung, but she has something arguably just as invaluable: hope. She’s also become an ardent patient advocate, helping patients come to terms with their diagnoses, navigate their treatment journeys and stay informed about new developments in pancreatic cancer treatment and care.
Kay emphasizes the critical role that research plays in fighting cancer and encourages patients to explore all available treatment options, including clinical trials.
“Clinical trials should be your appetizer in your treatment, not your dessert,” Kay said, of the importance of exploring research studies that test and assess new treatments, drugs, vaccines and care approaches. “Some are just studies – they aren’t all treatments.”
Kay notes that clinical trials should be a key consideration early on, because, in some cases, having
chemotherapy or radiation beforehand can make people ineligible to participate in certain trials.
“As patients, we have to help,” she said. “We have wonderful researchers, but we have to know about
these studies and help them out. Without them, we might not be where we are today. We need that information to end this cancer.”
Staying Vigilant in Survivorship
Kay’s advocacy work extends beyond encouraging people to consider clinical trials and find care teams they believe in, although those are certainly important aspects of it. She also urges others with pancreatic cancer to push their care teams for follow-up appointments, even if their medical teams don’t insist upon it.
“You need to really push for follow-up,” she said, noting that after 12 years without evidence of disease, recent bloodwork showed enlarged lymph nodes. While Kay doesn’t have any other notable symptoms, she recognizes the importance of staying vigilant and not ignoring those that may seem minor.
Often, once a patient surpasses five years of survival, their doctors no longer insist that they have annual checkups. Despite having 30 years of survivorship under her belt, Kay still insists on regular checkups, noting the unpredictable nature of pancreatic cancer and acknowledging that proactive monitoring is necessary for both catching recurrences and maintaining peace of mind.
Kay also encourages people with pancreatic cancer to keep a close eye on other aspects of their health that may have ties to pancreatic cancer, like their heart, eye and brain health.
“I see a cardiologist; there’s now a lot more attention given to how pancreatic cancer is watched by cardiologists,” Kay said. “This is one of the things that I know, as a survivor, that I need to keep an eye on.”
While more research is necessary to study the link between pancreatic cancer and heart health, cancer-related issues like inflammation, malnutrition and chemotherapy side effects can all raise the risk of certain cardiovascular issues. Some people with pancreatic cancer also develop certain heart-related complications like thrombosis and venous thromboembolism, further highlighting the importance of collaboration between oncologists and cardiologists.
Kay also closely monitors her skin and has had three melanoma removal procedures in recent years. She notes that there is a common gene, p53, between pancreatic cancer and melanoma and that melanoma is particularly prevalent among people with this type of cancer.
Kay also encourages cancer patients and their caregivers to recognize that many of the long-term beliefs people hold about pancreatic cancer treatment and care no longer apply. For example, some doctors have historically advised patients against getting CAT scans due to fears about the risk of radiation. However, Kay was told that improvements to equipment and imaging software have reduced risks and improved diagnostics, paving the way for earlier detection and more effective treatment options for patients.
Raising Awareness & Funding for Research
While Kay frequently speaks with pancreatic cancer patients on a one-on-one basis, she’s also taken her advocacy efforts to a broader stage. She initiated the formation of the first disease-specific specialty group of its kind in the state in 2003, and she regularly partners with other nonprofits and research organizations to host fundraisers and raise awareness.
She is also a regular speaker and fixture at Seena Magowitz Foundation events, including 2024’s Power of Us fundraiser in Milwaukee, Wisconsin. Kay will also attend the Steppin’ Up Against Pancreatic Cancer fundraising walk the foundation now hosts alongside the HonorHealth Research Institute, with the next edition set for Nov. 2, 2024 at Mountain America Stadium at Arizona State University.
Kay also serves as a patient advocate for a cancer research program overseen by the U.S. Department of Defense, a position she’s held since 2011. In this role, she reviews grant proposals and offers recommendations about where funding for pancreatic cancer will likely make the biggest impact. She also sits on several data and safety monitoring committees for clinical trials for people with pancreatic cancer, helping assess the safety of the trials and identifying those that may cause more harm to patients than good.
“It’s something I don’t think a lot of patients are aware of, but it’s important to know when you’re on a clinical trial that you’re being carefully watched by more than just your dedicated research team,” Kay said.
While Kay’s advocacy work is valuable for patients, it also keeps her looped in on new developments and research in the fight to eliminate pancreatic cancer for good.
“It keeps a smile on my face; I think that’s why I love being a research grant reviewer,” she said. “What I do is look at new, innovative ideas and decide whether they should be funded.”
Kay regularly reminds other people facing pancreatic cancer about these ongoing developments and advancements to make them more aware of their options.
“We have pancreatic cancer expertise we didn’t have before,” she said. “You have options now. There’s clinical expertise and clinical trials that weren’t around before, and that’s a big part of why survivorship went from 3.7% to 13%.”
Kay has also seen progress in terms of support groups emerging that cater to people during different stages of their pancreatic cancer battles. She is one of the hosts of the Seena Magowitz Foundation’s Pancreatic Cancer S.O.S. (Support for Survivorship) group, which provides support specifically tailored toward the newly diagnosed.
“Newly diagnosed people have different needs than long-term survivors,” she said. “Groups targeting the newly diagnosed help people feel free to ask questions without fear. What do I do first? What does ‘standard of care’ mean? How do I move forward? We’re working to get rid of these fears and replace them with faith.”
Kay acknowledges that some areas of pancreatic cancer research are advancing faster than others.
“The one thing I wish was more prevalent is early detection,” she said. “We’re doing very well with our treatments, but we’re still among the top cancers for fatalities, and we have no early detection. As a research advocate, that’s something I want to see. We need to have early detection NOW.”
While pancreatic cancer currently has no cure, Kay has seen firsthand how quickly science and research are advancing toward one.
“There is no cure, but we can make this a chronic disease,” she said. “I’ve proven that, and so have a lot of other survivors.”
Five full years passed before Kay found out that cancer had, in fact, returned to what remained of her pancreas, at which point she had both her pancreas and spleen removed. She felt hope for the first time in a long time, but that hope was short-lived, and she soon learned that the cancer had metastasized to her lymph nodes. At this point, doctors deemed her inoperable, but after reading an article in a newspaper about pancreatic cancer researcher Dr. Daniel Von Hoff, she made an appointment to meet with him and ultimately ended up signing on as one of his first targeted therapy patients.
Three years later, her cancer reemerged in her lung, and she ended up having a portion of it, too, removed. Now, 30 years later, she may not have a pancreas, spleen, gall bladder or a full lung, but she has something arguably just as invaluable: hope. She’s also become an ardent patient advocate, helping patients come to terms with their diagnoses and treatments while touting the work of Dr. Von Hoff.
“The man is a bulldog,” she said, noting that he’s known for pulling out chairs for his patients and urging them to call him “Dan.” “He’s not only a fantastic researcher, clinician and mentor… he’s a fantastic patient advocate. He’s more patient-oriented than any doctor I’ve ever met.”
“I’ve survived a very long time after first being diagnosed with pancreatic cancer. It is important that my story is being told because people need to know that a diagnosis of the worst of cancers does not mean an automatic death sentence. Patients are living longer and longer as medical advancements are occurring at a more rapid pace. Sustaining hope and courage is so important.”
– Kay Kays
Kay Kays Speaking About Pancreatic Cancer SOS
Kay Kays Interview in July 2012
109 thoughts on “Kay Kays is a 30-Year Survivor: The World’s Longest Survivor of Pancreatic Cancer”
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These Warriors are courageous beacons of hope. Have stories that shed light and instill gallantry to win the fight.
Carrying the torch of awareness. Providing missing links to medical research discovery. When the ultimate cure arrives, it is they that will have lit the path.
I would love to meet with Kay face to face to discuss her journey .. ♥️
My husband was just diagnosed with Stage 4 metastatic Pancreatic Cancer and I would like to ask her questions, pleas.
My husband is detected with last stage of pancreatic cancer can you please answer my questions
Test results not looking good. I want to live!
Thank you for sharing your inspirational story of hope and perseverance!!
Where is Dr. Von Hoff located?
I’m also a pancreatic cancer patient. It’s been 6 years since doing my whipple surgery. Done 20cycles of chemotherapy and radiotherapy. Was not an easy one I admit. I’m still a survivor by the grace of God. God bless you all who are suffering and I wish you all a speedy recovery. Do not lose hope. Lots of love
My husband was 49 when diagnosed and he was in remission for 12 years without having the Whipple procedure. It returned and he was gone in 18 months. We packed a lot of life into those 12 years! May God continue to bless you.
I just passed 13 years; 10 months!! Congrats to all the PC patients/warriors/survivors!!
I’m also a 4 year prostate cancer survivor!
Where is Dr.Von Hoff located
How can I contact Kay Kays and where is Dr. Von Hoff located?
What stage was Kay’s pancreatic cancer when first diagnosed in 1994?
Chris. Im sorry to hear your husband passed but remarkable he survived so long without whipple i have stage 3 , what treatments did he have that gave him the 12 yrs. I may have a shot at surgery but not guaranteed. As I just did proton radiation any advice from survivors that did not get whipple?
Tom Burke, how did you find you had it and what did you do and take?
I need to know the same
Dr VonHoff does not see patients however. Dr Borazanci see patients and works alongside Dr VonHoff. https://www.honorhealth.com/physicians/Erkut-Borazanci?utm_source=GMB&utm_medium=local&utm_campaign=Erkut_Borazanci
my father sufer from pancreatic tratement cancer
Pancreatic cancer my son stage (2) 32
My 44 year old son was just diagnosed with pancreatic cancer he has always been healthy he starts chemo in 2 days trying to stay positive he has the best oncologist in the state of ohio this is a horrible disease prayers to all
I’m was diagnosed with stage 4 PC. The only treatment offered was high dose chemo. I could barely spell the name of the treatment. They sent me home with a thick package of information on the chemo name with ingredients I’ve never heard of and all the side affects.
This would kill me sooner.
Thank you for sharing. I would be so grateful to hear of links to any research on other pancreatic cancer patients who have successful resectioning surgery (Whipple) and have relied on surgery and wellness (rather than chemo). Thank you!
My brother was just diagnosed in Ohio. Looking for a good oncologist. Any suggestions would help.
What an amazing story, I am a 2 time survivor. thyroid when I was 38 and at 57.I had breast cancer and it was in my lymph nodes also. I had a double mastectomy chemo and radiation and her Elton and I’m still here at 64. God bless the doctors.
My sister had the Whipple procedure on March 17, 2008 and is still alive.
I was diagnosed a year+ with Stg l/lla PC. Got the Whipple 10/17/22 went thru the first 3 cycles of chemo before the surgery and last 2 treatments now completing. I’m healed back to work, I’m an Administrative Nurse. I intend on being a survivor spokesperson for PC ,GOD healed me, he gave those beautiful doctors wisdom a d skill.
Immunotherapy has saved my brother stage 4 pancreatic Cancer dx 2 yrs ago m. His tumors are empty shells currently. He is in studies. Black seed oil daily. That is also in studies. Demand immunotherapy. Start black seed oil.
Hi Marie, Did your brother have any prior treatments-chemo or radiation or Whipple surgery? or did he strictly just go right to immunotherapy and black seed oil. Thank you for your info its much appreciated.
No surgery 3 rounds of chemo. He was so sick he said no more chemo. Unbeknownst to him that finally made him eligible for the immunotherapy. In addition to the black seed oil he also does quite a few more supplements. NAC, Quercetin, Vit D, 2,000 mg Vit C, Tumeric, Aloe. bitters. He stopped immunotherapy a year ago and as of now is ust taking the supplements. He gets checked every 3 months. Lab work remains normal
I know Dr’s want you to follow their protocol but with a prognosis like that it’s makes you willing to go outside the box . Of course prayers too!
Marie thank you so much for this invaluable information, it’s all in what has been proven to work. (agree about going outside of the box!) I am so very happy for your brother and family. & yes prayer is the best medicine. God Bless & Thank you again.
Hi I’m Mick, I’m a 53 year old widower with 4 children I have just been diagnosed in January with stage three in operable PC. Took them five months nine CT scans three endoscopy‘s before they found it. I’m just about to start my third round of six chemo. The pain is becoming unbearable. I’m 6 foot two down to 167 pounds breathing is getting bad does anybody have any advice? I can’t leave my children. Thanks and God bless you all.
My mother-in-law was just diagnosed in Ohio as well. I would like to know who this specialist is please. Thank you.
I was diagnosed with stage 4 pancreatic cancer September 28, 2021. I have been on high doses of chemo since November 2021. My cancer has been “dead” on two PET scans. This is not the usual result but I hope it offers you hope. I have been searching for others who have had this result from chemotherapy. I am 68, 69 April 3. I take lots of vitamin supplements and drink a green food. I have had many praying for me and believe that prayer has contributed to my healing.
My husband passed from PC last April,, he did the chemo,, they couldn’t do the whipple because some had spread to his abdominal lining,, his tumor on pancreas shrunk to a fluid pocket,, but at same time it spread more to lining,, he was 73,, doing so good,, I wondered if they did everything they could for him
I got diagnosed with Stage IIIA PC last year in May. Since then I have had a surgery of tripple abdominal bypass + 6cycles of Chemotherapy 5FU. My tumor is localized Alhamdulillah and the last CT and PetScan shows 45% reduction in volume. I hope its operable now since it was close to my portal vein earlier. Waiting for my Oncologist and Surgeon to confirm for either The Whipple or Radiotherapy. Please pray for me and best wishes to everyone suffering from this. I hope we’ll grt through this for our loved ones. Stay strong !
My dad was a 10 year pancreatic cancer survivor. He knew something was not right and went for treatment. Had the Whipple surgery and radiation. He was lucky.
My husband has stage 4 pancreatic cancer 2 1/2 years now pain meds sometimes work heating pads are great. Get the GI exam to make sure you don’t have fluid building up in your stomach That does not always show on the test but it is a big source of pain
Hi Mick,
Please scroll down and read Marie’s post her brother cured his sage iv with the following:copy and pasted from Marie’s post below: here It is:” Demand Immunotherapy. In addition to the black seed oil he also does quite a few more supplements. NAC, Quercetin, Vit D, 2,000 mg Vit C, Tumeric, Aloe. bitters. He stopped immunotherapy a year ago and as of now is ust taking the supplements. He gets checked every 3 months. Lab work remains normal
I know Dr’s want you to follow their protocol but with a prognosis like that it’s makes you willing to go outside the box . Of course prayers too!
I wish you the best Mick stay positive and Best wishes for HEALING anything is worth a try that especially when so far proven to work. I will keep all in my prayers.
*Read Marie’s post’s below
My brother was recently diagnosed with pancreatic cancer and is emotionally struggling. Is there a way you can connect with him to help?
I’m so sorry you and your family are going through this. Please join ‘Always Hope’ cancer support group on Facebook. Also look into Fenben and Rick Simpson Oil. Alternative therapies have had success. Wishing you all the best.
I had chemo radiation plus paw paw tablets then a Whipple operation in 2010 for Pancreatic cancer.
Angela there is imense support,help and information for all cancers.I have had whipple proceedure Jan 23 2023 Iam about start my 6 months of chemo as strong as I can be for 57year old single mother of 3.I found my specialist surgeon and all of his many supporting surgical colegues to be very informative and supportive and encouraging all questions are valid and answered with patience experience and care by all of them! The nurses and psw’s are very much a source of support and Counsiling as well as the gentle nursing care and drug administrations.They are there to help to work together to make you well.Trust ,talk to them they understand and do care ! They all reach out &can be reached by family at any time!Stay positive it really helps ask questions they will answer them day or night !also it can be strengthening to each other when patients have semi private or ward hospital rooms.It helps to talk to each other and support each other during prior surgery and recovery. Hope this helps
Happy to hear about your brother’s success with immunotherapy and supplements! My husband has been diagnosed with stage 4 pancreatic cancer and is receiving chemotherapy. There is now a nationwide shortage of a key chemotherapy drug which has resulted in a missed treatment and the future is uncertain. Could you please share the supplement brands and dosages your brother used? Also what type of immunotherapy did your brother receive? Wishing your brother all the best.
My sister is a 16 year survivor of pancreatic cancer. She has had a few recurrences. After about 7 years it showed up in her liver and part of the liver was removed. She now has a tumor in her abdomen and is being treated with stem cells. She still works and celebrated her 60th birthday on February 20. She’s been able to watch her two sons grow up and get married. The youngest was 12 when she was diagnosed. She was always tiny, and we thought that might have helped her find the tumor herself. We cherish every day. “Loving you Frances.”
I just found out my mom has metastatic pancreatic cancer today. Myself and my family are devastated. I came online to search for people who out lived their prognosis. I’m feeling a little hopeful now.
My day on 25 February found out by he has 2.1cm tumor on his pancreas head. He found out by luck, by doing regular blood check up. His C9-19 markers tumors where 100.
He had Whipple surgery on 20 March. I am so afraid. He will need to do Chemo after as preventive treatment. My biggest fears is that i read a lot on the google about this, it is doom and gloom, even those who had surgery, they might be recurrence after surgery. My dad is 62. I didnt wanted this to happen. I really want him to be at least 15+ more years with me.
dad*
I am 68, diagnosed with stage 2 PC in February finished the first cycle of chemotherapy, intended to be six months following by whipple surgery.
Everything is ok so far just some fatigue, doing my routine life including a daily one hour walking and reading lots of articles about pc and am determined to get through this.
Marie wrote 1 month, 3 weeks ago
No surgery 3 rounds of chemo. He was so sick he said no more chemo. Unbeknownst to him that finally made him eligible for the immunotherapy. In addition to the black seed oil he also does quite a few more supplements. NAC, Quercetin, Vit D, 2,000 mg Vit C, Tumeric, Aloe. bitters. He stopped immunotherapy a year ago and as of now is ust taking the supplements. He gets checked every 3 months. Lab work remains normal
I know Dr’s want you to follow their protocol but with a prognosis like that it’s makes you willing to go outside the box . Of course prayers too!
My mother was diagnosed with pancreatic cancer in 1992 at the age of 58. She is still going strong today at nearly 89 years of age. 31 years since diagnosis.
Do you feel the paw paw worked? My mom just got diagnosed and I have heard of multiple studies proving their efficacy.
I was diagnosed with pancreatic and kidney cancer in July of 2022, stage 2. I have completed chemo, had the Whipple procedure and my kidney removed. I start 5 weeks of precautionary radiation next week.
I have a very supportive family, friends and employer, which has helped me remain very positive.
Stay off of the internet, it’s nothing but doom and gloom!
Diagnosed September 2019. Whipple followed by precautionary Folfirinox chemo. Clear CT Scans for over 3 years now. I feel very good. I take Creon everyday. Thousands of people have prayed for me. Thank you God.
Our prayers are with you
I was diagnosed with PC on July 29, 2004. I had the Whipple in August, followed by Chemo and radiation starting in October. These last (nearly 19 years) have been some of the best years of my life. I am very blessed.
My mommy Caroline has been diagnosed on thanksgiving of 2023 went to hospital she had a side-effect and the side effects to the pancreatic cancer. Where is jaundice. And was told she couldn’t have the surgery because of the intestines being entangled that she was not a candidate for. My sister lived up in Tennessee, so she rushed mum and myself to go to Vanderbilt Hospital,where there’s a cancer center there. One thing lead to another she had fallen hurt herself chemotherapy stopped now she’s in a rehabilitation facility hopefully to get stronger to receive more treatment, so she can live. We need a miracle please help us. My e mail address is ladymidnight1973@yahoo.com
Any information would be appreciated
I have heard great things about Houston Methodist Hospital and Immunotherapy for PC. Contact them and have faith. I am praying for you all.
I’m going on 3 years of remission. Chemo, surgery, then chemo. I went from 215 lbs to 125 lbs now back to 190 lbs.
I am a 27 year law enforcement veteran. You always train that if you are the one shot you will survive. That mind set is necessary for survival. You have to be that 1%. There is no reason you cannot be.
I was 49 when I began this journey. Young enough to survive the chemo, surgery, chemo. It was terrible. No words can describe it, but it was necessary.
Control what you can control I.e. eating. Find what you can stomach and devour it, all day everyday. Mine was smoked meats. Coupled with protein drinks, I consumed 3,000 calories a meal.
Find god, and put all faith he will heal you.
There will be many, many obstacles, overcome each one and survive.
When going through the chemo after surgery it is the worst. Take everyday one day at a time. Don’t count down to the last session. Attack each one independently. Looking at the distance you have to go can be debilitating.
Brother, I was close to your same age when I was diagnosed. Hell on earth can’t be enough to explain it. I’m a father of 4. I hid the anguish as well as I could. Stay strong.
I survived. Back to work for last few years, no pain, no issues.
Believe in god and beg for support.
You absolutely can do this. One day at a time. Don’t look forward and cherish everyday you get.
I was not given an optimistic outcome. I’m going on 3 years clear of cancer. My scans are now every 6 months soon to be every year.
Don’t give up, retain hope, and fight. Give complete faith that god will get you through this!!
Dx with PC Dec 2021 stage 2B – Full Folfirinox Chemo – radiation and then additional chemo. Told I was inoperable due to SMV involvement. Stable bloodwork for over a year with no metastasis and no tumor growth. Now possibly operable and a laparoscopy is scheduled for the 25th of May (to be followed by a Whipple if all goes well). Please keep my family and I in prayers. Really want to join the long survivors team. <3
Amen sir!
I was diagnosed with Pancreatic cancer stage 4 in July of 2020. The tumor was large 5;centimeters. Prognosis 3 months with no treatment maybe a year with chemo. I chose chemo. the Tumor continued to dramatically reduce. 3 years of treatment and I am still here. They say I am a miracle. So glad for everyday with my grandchildren.
Kay is such an amazing person!!
My name is Anthony Deblase I’m know as Tony Hollywood diagnosed with stage 4 adenocarcinoma pancreatic cancer .
Palomar hospital gave me 2 months to live.today I live in oceanside after being treated by Kaiser with the Whipple in Nov of 2010 . Supposed to be diabetic and I’m not . And I never lost any hair from kemo or illnesses from side effects of the kemo treatment. The most part I developed a herniated stomach.. I have never changed my diet , but this passed Christmas I ended up going to tri -city hospital for an ULSERED bowel . Almost didn’t make it…. I’m constantly undergoing torment by the SSI dept. Living in poverty on SSI dissability. And yet still holding my own supporting my girlfriend and cat for 13 yrs now . If you want to here my story call me at (619 )827 -6066.
Just to add to the story I’m a former actor and singer appearing in tv shows such as The Rolanda show N.Y.C.The paramedic in ER. 1996. Talk soup w John Hensen ( during the Emmys sweeps of 1996).
I was diagnosed on July 15 2010 ,at Palomar hospital finding out I had galstones and a 4.5 cm tumor at the head of my pancreases non recetable.
I’m so happy to hear how well you are doing! I just lost my niece last week to pancreatic cancer. We were so hopeful because she found it so early, but she only had about 18 months since being diagnosed. I hope you continue to thrive. You are an inspiration!
Please pray for my mom. We just learned she has pancreatic cancer around the liver. God can do all things. She is at a point in her life where she has been doing so much better for herself and I believe this will also be a mirescle, because the Doctor said months to a year to live. But I Have Faith in Jesus Name.
Okay everyone – my turn. ; )
An currently stationed in Okinawa (Military school system – DoDEA) and am heading over to Taiwan next week for my Whipple procedure. Adenocarcinoma (Pancreatic Cancer) Stage 2a/b depending on how you assess it, but I have been stable since last Oct (chemo-radiation-chemo all last year). Found out the tumor had cleared away from my SMV enough to give the surgery a month ago and my doc is returning from a conference at MD Anderson tomorrow. Keeping my fingers crossed that we can deliver a knock out punch, and am so appreciative of the stories of hope here. Stay strong everyone, and I will report back when I get to the other side of this forthcoming adventure. : )
Hi scot, I finished 4 cycles of chemo and after 12 cycles I go for whipple surgery.
How did your whipple go and how long the recovery took and how hard it was?
Ray
I was diagnosed with pancreatic cancer Augh 27, 2012. I went into surgery oct 1 1012 and woke up 7 weeks later paralyzed from the neck down. I spent almost a year in the hospital, or long term care. I am bed bound but I am still alive. I am glad to see you did so well.
My mother has been in remission for about 29 years or more. She had chemo, radiation and the wihipple surgery. She is currently 82 and doing well
Hi Rita, what do you think made the difference in such a dire case like Stage 4? What chemo was used?
Need help for my friend Sarah
My friend Sarah is fighting pancreas cancer has moved to liver…she in n out of hospital. Pls help they gave her a year..i just want to spend a fun day with her…but lost on what to do she has feeding tube n oxygen tank. Pls help
Thank you Tony for sharing details about your incredible Stage 4 survival and life over the past 13 years.WOW!!! I am passing along your encouraging words to my sister. May GOD bless you even more than He already has.
I have diagnosed with pancreatic cancer stage four after Whipple procedure ,my self 49 years old.
My self Roopa Arora 49 years old, diagnosed with pancreatic cancer stage four , Doctors done Whipple procedure on 20 th March 2023, after removing pancreatic head, gall bladder,bile ducts and some parts of stomach they said your cancer spreads into your liver and they started chemotherapy , still on chemotherapy,if someone have any idea to save life please help
The father of my two sons is fighting for his life with stage 4 pancreatic cancer. From the moment we learn of his medical condition we called him, but his wife continued to tell us, that he is too weak to talk to us and for our sons to visit him. I asked My Pastor, church, and prayer warriors, that I know to pray for the eradication of his metastasized and now spreading over his entire body. He has always been very healthy and a fighter. Suddenly, after he married his Sister Linda died, baby brother Kenneth died of cancer. His brother Ron died. Next, his eldest brother James died. They all died right in a row. Now, he is fighting for his life. His half sister talked with me every day and mysteriously she stopped. I learned from his wife, that she was aware along with her daughter and half sister Katherine. The moment I learned of his medical condition I asked her to call and check on him, but she never told me nor my sons that their father is fighting for his life…
The Holy Spirit guided me to call the cancer unit at UT Southern in Dallas. I shall trust God to touch his medical team with superior knowledge and touch his entire body with healing power this very second.
What kind of back pain did she have? I been having severe back pain for a month and I am 36 yrs old. It hurts everyday and I got a MRI of my spine and showed nothing.
I was diagnosed with pancreatic cancer in April 2022 after an ultrasound for another issue. The tumor was small, no sign of spreading, but was blocking some blood vessels along the wall. Had 10 rounds of aggressive chemo to shrink it for surgery and it totally disappeared. Had distal surgery in December and it went well. Both surgeon and oncologist were very optimistic. Had a pet scan in April and it was clean but my CA19 count was very high. In July a cat scan and biopsy confirmed pancreatic cancer in my liver. Without treatment I have 18-24 months, with palliative chemo I can extend both my life and quality of life for maybe 3 years, or I could die in an accident next week. Who knows? At least now I know my time is limited so I best get my affairs in order and make the most of the time I have left.
Was back pain her only sign?
I have had pancreatic cancer for 6 years . Whipple surgery chemo then lung and middle lobe removed taking one day at a time. I was 59 when diagnosed . Scared of course
Hello. My brother who is 51 years old was recently diagnosed with stage IV pancreatic cancer that has spread to his liver. He is currently taking chemo but his liver enzyme’s is increasing. The doctors are not very hopeful.
My sister 66 years old was just diagnosed with pancreatic cancer. She was diagnosed in November 2022 with diabetes which now they think was the start of the cancer. She is scheduled to start chemo this Wednesday set up every other week for 48 hrs for 12 sessions
She is very healthy has great family support is a nurse
What can I do to help and support her through this ?
My husband 44 yrs old has been diagnosed with pancreatic cancer. It has not spread to any other organs. Hoping chemo and surgery do the job and cure his cancer. Praying for a miracle.
Amen
I was diagnosed pancreatic adenocarcinoma in December 2021, had whipple surgery at MD Anderson January 2022 , followed by chemotherapy at city of Hope last year from April to October. It goes well and I eat and live normally and everything ok now. I exercise regularly so far ok in every check up. Be joyful and faithful, it will be little tough during treatment but eventually will be ok. God bless him and all your family.
Praying
I had a Whipple in 2003 for what turned out to be ampullary pancreatic cancer. It was stage 2 with vomiting as the only symptom.I required a reattached of the anastomosis after 3 years. I am now 70 and want to know the reoccurance rate is.When doctors are told how long I’ve lived, no one ever said anything except “oh”. Why doesn’t anyone want to study me? Or write a paper? I’m upset that I’m not more interesting.
Live in New York City. 76 years old just told I have a Pancreatic cancer. Start chemo next week at Mt. Sinai Hospital. Told the cancer has not spread. But in a bad spot near other vessels. Too large and in a bad spot for surgery. They want to shrink with chemo first and then try radiation. Only symptoms now is jaundice which they are treating and some belly cramps. No back pain. Good appetite but have lost 15 lbs. Eating better now. Any suggestions appreciated. God bless you. Nick
My mom-Rita Gates-had the whipple procedure at the Mayo clinic in the 1970’s before I was born in 1973. In fact, they ended up calling me the miracle baby (I call me the oops baby 🙂 ) as I am the youngest of 7. She did have reoccurences twice but lived a pretty good life until 2011 when she did pass away from liver cancer. So the whipple procedure did save her and also gave my family a new life (me).
My wife was diagnosed with pancreatic cancer 1 year ago. She has stomach pains that radiated to her back. She had Whipple surgery pathology report said cancer free. 2 months later her CA-19 TUMOR marker was at 1700. She started chemo again, alighted dose than she had before surgery. After 1 treatment her CA 19 was 409. A month after her next treatment of chemo her CA 19, is at 138. And she continues her battle. It’s tough one day you have hope then the next day you are doen. It’s a Rollercoaster of a ride. We are Christians and saved by God’s grace. That is by far the best news. I hope this helps. And if at anytime someone needs a prayer you can email me and I will be happy to offer a prayer.
My mom was diagnosed with PC stage 4 in May 2023, when we placed her to one of the best hospital in Turkey, doctors said unfortunately too late, max 20 days, but the Shafi Allah is the Greatest! It’s we stepping into 6 months now and 3 November, 2 days later is my mom’s 67 birthday, sometimes she wants gave up, but NOPE vs HOPE- just change 1 first letter in your mind and everything inshAllah will be alright!!!! Don’t give up nobody anybody anytime!!! Thanks to Eldar Ahmedov ( Turkmen pop star) for his hope song ( Bagyshla menu) gift to my MOM!!!!
Kay Kays is an incredible inspiration.
I was told my liver enzymes are increasing, and don’t know how to help with lowering them, I’m not told anything either or if there’s any help to decrease liver enzymes
Is there anybody out there that can help my mom… she has Stage 4 Pancreatic Cancer… we’ve tried multiple chemos and nothing has worked… they have now deemed her terminal… is there anybody who can help my mom plz… she’s survived breast cancer once but this cancer is different. If anybody can help asap please contact me. She’s a fighter and if someone can help her best this I’m sure her story and life is something she and I would dedicate our lives to helping others in the same situation
Nice to see others are having the same success.. My dad had the whipple procedures in 1998 and almost 26 years later he’s still here, huge thank you to professor Neoptolemos. I could never thank this man enough for all the extra years I’ve had with my dad and looking at this it looks like my dad is amongst the longest living survivors. I knew he’d done well but wow.. Let’s hope one day, cancer can be eradicated and gone for good
I’m so happy you wrote this gives me hope because your don’t see many of these comments
Can you please contact me I have some questions I am hoping you can answer. I am a pancreatic cancer survivor. 470-931-2331
who was Kay Kays’ surgeon?
I was diagnosed in 1996 but had mucinous cyst adenocarcenoma of the pancreas before 1989. I had surgery and no chemo or any other treatment. I am now 70 and have just been diagnosed with pancrateogenic diabetes or type 3c. I feel that I have done ok.
my sister just got diagnosed with PC, I just know the tumor is 2.5 cm, she is just 36 years old, always been really active and never smoked nor drink. she will be getting chemo first and then will try to do surgery. they didn’t mention what stage she was on. But im hopeful and have faith that we will have the victory in Jesus name.
I will be 70 in two days. I had been having burning stomach pains off and on for years. Docs looked for ulcers, h pylori, reflux, etc. They found some anomalies, treated it but with no impact on my occasional stomach pain. , Finally Jan 2023 was diagnosed with pancreatic neuroendocrine tumor with liver metastasis. My Docs in Idaho said I needed to seek out best place to go out of state. I chose MDAnderson in Houston. Docs there told me I was not a candidate for whipple or liver resection. Nor radiation. Only chemo . So I started oral Cap-Tem . Tumors grew considerably after three sessions Switched me to IV Etoposide and Carboplatin. 8 full rounds. My tumors decreased substantially . Stopped the chemo and waited. For 7 months straight my tumors did not grow. Very hard to even see on ct scans. So docs said my response, though totally unexpected has now renewed my options. .Oncologist called me an anomoly. Surgery now !!: liver resection in July, whipple a couple months later. Fingersx
I am a 9 yr PC survivor so glad to read others have lived so long with this dreaded disease. I have mentored 9 others but all have died, ages 39-82. I was 72 when diagnosed, horrible chemo and the Whipple with great doctors and many prayer warriors I too look forward to many more years. God is good
My mom had a Whipple 20 years ago at age 63. She did not need any further treatment at that time. Fast forward 20 years a cancerous tumor showed up. She went thru chemo and radiation last year. 1st pet scan was clear. 2nd one was done last week. Showed cancer activity in the area of what’s left of her pancreas. Tumor markers are up. Doctor is saying only option is surgery to remove whole pancreas
I had my Whipple September 24, 1996 followed by chemo and radiation. This September 24 it will be 28 years of life after my Whipple. I did a lot of research and completely changed my lifestyle, started a vitamin regiment and semi-vegan diet. Obviously, what I did worked! I wrote a book about my journey “How I Beat Pancreatic Cancer” available on Amazon. I hope this comment offers “HOPE” for those going through this awful cancer. There are people who have survived so please do not give up hope…survival can be done!
I’m also a pancan survivor! I did have the whipple last year, but they left a positive margin and didn’t say thing about it. 8 months later I had new tumor nearly the same size as the first one right at that positive margin. They tried to sweep it under the rug by refusing to treat me and refusing to release one of my scans for 2nd opinion and treatment elsewhere. I immediately began taking ivermectin and fenbendazole. My CA-19 tumor dropped back down and for 3 months my tumor stopped growing! And thankfully bc it meant that new tumor stayed local and never went to any lymph nodes or my liver. New oncology team gave it a final zap of chemo/radiation that should’ve been done last year and it’s gone! Here’s to many more years! Bc I’m not even 40!
I am newly diagnosed with adenocarcinoma of the pancreas with mesenteric vessels encapsulating the tumor on the head of my pancreas. I have an appointment with Dr Borazanci with HonorHealth on Monday 10/21 and will meet with a doctor at the Mayo AZ. Can you tell me the best pancreatic centers, surgeons and oncologists in the US with state of the art modalities and the best outcomes?
Thank you. Your story is inspiring.