Kay Kays | A 29 Year Pancreatic Cancer Survivor
One of The World’s Longest Living Pancreatic Cancer Patients
Diagnosed: 1994 at Age 44
Survivor: Still In Remission
Written By Julia Brabant
October, 2019
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 out there, 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, and she soon learned, thanks to the help of some diligent interns, that what she had was 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, she 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, 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, 25 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.”
– Kay Kays
Kay Kays Speaking About Pancreatic Cancer SOS
Kay Kays Interview in July 2012
69 thoughts on “Kay Kays is a 29 Year Survivor: The World’s Longest Survivor of Pancreatic Cancer”
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OUR WARRIORS
Will To Live.
Courage To Fight.
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