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Pancreatic Cancer Survivors

jimnsherry's picture
jimnsherry
Posts: 23
Joined: Jun 2005

Hello, I am wondering if there is a place to find out the longest surviving Pancreatic Cancer survivor. I am doing great myself since 1/2005 Whipple. I thank God for my blessing. I am looking forward to getting through five years, only 3 1/2 years to go, so I was wondering if anyone has contact or knows any Pancreatic Cancer survivors of 5 years or more, it would be nice. THANKS

Myroslava
Posts: 2
Joined: Sep 2012

My prayers for your wife recovery. May i ask what kind of chemo therapy your wife is having? I am sorry for my English, but i am an Ukrainian and live in Ukraine at this moment. My mom has a Pancreatic Cancer and she had her Whipple in April 10 2012, now she is going through second round of Chemo. Here in Ukraine they did for her first chemo Gemcitabine with Xeloda (3 weeks), but the side effects was to bad for her, so... for second round of chemo she has only Gemcitabine (4 weeks). I was so happy to find this blog, because ,after all this Chemotherapy Side Effects, my mom start to give up and ask me all this questions about survivors and i didn't know what to say untill i did not find this site!!! I want to thank everybody, who finds time to write here. I am very sorry because my mom dont speak English, but i will translate for here all this life stories. If somebody would like to share with me an chemo expirience it will be a HUGE help for me.
Thank's to everyone
God bless you all!

marineth.miranda
Posts: 6
Joined: Jul 2012

dacarbazine is what my wife is using for her chemotherapy, my wife is only 31 in age and maybe a factor on how her body is reacting on the medication. we are even amazed that until her 2nd seesion, she is not showing any violent side effects. today is her 3rd session and hopefully she will continue her progress. the tumor that was removed to her is actually 11cm in size and even now, the doctors are amazed on her progress because tumor size is also a factor in survival issues. just pray hard, very hard coz it helps a lot, and i do myself believe on that. vegetarian diet i believe is a factor too. ill keep u posted. wish for your mom to be good and strong.

marineth.miranda
Posts: 6
Joined: Jul 2012

dacarbazine is what my wife is using for her chemotherapy, my wife is only 31 in age and maybe a factor on how her body is reacting on the medication. we are even amazed that until her 2nd seesion, she is not showing any violent side effects. today is her 3rd session and hopefully she will continue her progress. the tumor that was removed to her is actually 11cm in size and even now, the doctors are amazed on her progress because tumor size is also a factor in survival issues. just pray hard, very hard coz it helps a lot, and i do myself believe on that. vegetarian diet i believe is a factor too. ill keep u posted. wish for your mom to be good and strong.

Oneshot's picture
Oneshot
Posts: 84
Joined: Jul 2009

Myroslava,
Tell your mom to take notes or have you write down all the pains and issues she has. The ones that do not seem normal to her or that you notice. Chemotherapy has many side effects. Some people have the most common ones and others have many that are not mentioned by the doctors until you or her mention the problems to them. If they mentioned all the possible side effects. It would make people not want to take "chemo". Most do not get more than a few of the side effects. I pray your mom only experiences very few. But, as you notice them. Write them down. Then mention on the next doctors visit or over the phone.

Tell you mom I am a 4 year survivor of stage 3 pancreatic cancer.
I will keep you and your family in my prayers

Oneshot.

marineth.miranda
Posts: 6
Joined: Jul 2012

hey!!that's great, hopefully u would pass the 5 year mark, my prayers is with you and hopefully, we could all pass thru this situation and my wife, with you and all the others
facing the same sickness.

4timer
Posts: 2
Joined: Aug 2012

I had my Whipple (Ampulla of Vader carcinoma) in 1992. Survived great for 20 years! Then in 2012 (this year) the rest of the darn pancreas got bit by cancer. Well, they plucked that sucker (pancreas) and the naughty nodes surrounding it. Gone! So, now I have survived cancer #1 55 years, cancer #2 54 years, cancer #3 20 years, and cancer #4 2 months.

mockhill
Posts: 2
Joined: Jan 2013

2013-01-18     I had adnocarsinoma of the pancreatitis in Oct.2003  I had surgery in Jan. 2004.  I have been cancer free since.  When it was removed they dicovered one lymp nobe was affedted. In surgery they removed half of the pancreatitis. my spleen. and a small piece of my colan.  I still go in for my yearly check ups- which always make me nervous.  So for those out there who read the 5 yr. life expectancy--forget it.  Put it in Gods hands and enjoy every day.  Smile

Oneshot's picture
Oneshot
Posts: 84
Joined: Jul 2009

Mockhill, 

I do agree with the nervousness that shows up around check up time and your last two lines.

 

"So for those out there who read the 5 yr. life expectancy--forget it.  Put it in Gods hands and enjoy every day"

gemzar1
Posts: 2
Joined: Mar 2013

I am a 61 year old male. I underwent a Whipple surgery in December 2007, after suffering with chronic pancreatitis for 2 years. I had a wonderful team of surgeons, to whom I am forever grateful. They found a 2 cm malignant tumor on the head of the pancreas, removed the head of the pancreas, and told me that they were pretty sure that they had gotten rid everything. My fantastic Oncologist suggested that I have a 4 month cycle of Gemzar Chemotherapy as an insurance policy, and that if the cancer returned, it would return in 2 years. If it did not return, I would be free and clear. I had the chemo treatment, and unfortunately, EXACTLY 2 years later, that cancer had spread to the lungs, and became Stage 4 terminal. I was pretty disheartened, as I thought I had beaten it, but I did not give up hope. This was 3 years ago. I have been in constant chemo - GEMZAR - for the past 3 years, and thus far the cancer has been well controlled and maintained solely in the lungs. Being a 5 year plus pancreatic cancer survivor, I feel very blessed, and very lucky. I changed and introduced a lot of things in my life over this period of time, and would be happy to share this with anyone who is interested in hearing about it. Just this week, I started on a new chemo drug called Abraxane, which has recently shown some excellent results for pancreatic cancer in clinical trials, and has just recently been approved by the the FDA in the USA for pancreatic cancer. (It has been predominantly used over the past several years for Breast cancer.)  I constantly seem to amaze my doctor with my results, and for this reason, if I could help just one other person with my experience, it would be my absolute pleasure, and give me a lot of gratitude - as I feel that we MUSt work as a team!

gemzar1
Posts: 2
Joined: Mar 2013

I am a 61 year old male. I underwent a Whipple surgery in December 2007, after suffering with chronic pancreatitis for 2 years. I had a wonderful team of surgeons, to whom I am forever grateful. They found a 2 cm malignant tumor on the head of the pancreas, removed the head of the pancreas, and told me that they were pretty sure that they had gotten rid everything. My fantastic Oncologist suggested that I have a 4 month cycle of Gemzar Chemotherapy as an insurance policy, and that if the cancer returned, it would return in 2 years. If it did not return, I would be free and clear. I had the chemo treatment, and unfortunately, EXACTLY 2 years later, that cancer had spread to the lungs, and became Stage 4 terminal. I was pretty disheartened, as I thought I had beaten it, but I did not give up hope. This was 3 years ago. I have been in constant chemo - GEMZAR - for the past 3 years, and thus far the cancer has been well controlled and maintained solely in the lungs. Being a 5 year plus pancreatic cancer survivor, I feel very blessed, and very lucky. I changed and introduced a lot of things in my life over this period of time, and would be happy to share this with anyone who is interested in hearing about it. Just this week, I started on a new chemo drug called Abraxane, which has recently shown some excellent results for pancreatic cancer in clinical trials, and has just recently been approved by the the FDA in the USA for pancreatic cancer. (It has been predominantly used over the past several years for Breast cancer.)  I constantly seem to amaze my doctor with my results, and for this reason, if I could help just one other person with my experience, it would be my absolute pleasure, and give me a lot of gratitude - as I feel that we MUSt work as a team!

Margaretoddie
Posts: 1
Joined: Apr 2013

Hi to all,
I have never posted on a blog site ever before. I was diagnosed with stage 3 pancreatic cancer and borderline resectable 2/14/2011. I received gemzar(16treatments)and radiation(25 treatments) before having my whipple surgery and then chemo (8treatments) again.I have also had incisional hernia surgery 12/2012.I do feel as though I have handled things well thus far....though as time goes on and scans come up I get more nervous. I would so love to hear more in detail what pancreatic survivors have done with their diet since there surgeries.What do you do extra ... if anything?Have long term survivors done alternative treatment besides medical treatments? So interested in more about the long term pancreatic patient....please give more info!
Margaret

mymomisthebest
Posts: 1
Joined: May 2013

My mom was diagnosed in April 2013 of pancreatic cancer. She is 65 years old and was in perfect health. 25 days later she had the Whipple procedure done at University hospital in London, Ontario, Canada. Her symptoms were itchyness, jaundice, tiredness and weightloss 2 weeks prior to diagnosis. Her tumour was 4cm in diameter and located near the duct. This was discovered by an ultrasound that was ordered once her bloodwork came back irregular. 2 days later it was confirmed by a CT scan and she had an appt. with a surgeon the next day. We are wating for pathology results from surrounding tissue to see if she will begin chemo/radiation therapy. She has been in the hospital for 5 days and is doing OK.

I love these stories of survival and will be sharing them with her. Most posts about pancreatic cancer give such horrible stats.

jdix
Posts: 1
Joined: May 2013

I found this site, because I was looking to see if there were any long term survivors of Pancreatic cancer.  My husband was diagnosed with Pancreatic cancer and underwent the Whipple procedure on 13th April 2004.  Before the operation and post op he lost about 30kg, but it was weight he needed to lose.  He underwent chemotherapy for about 6 months.

It is now more than 9 years, and he recently had a routine endoscopy and colonoscopy.  All clear.  He eats the same amount he did before the cancer and has maintained his weight all this time.  He works 4 days a week as a mechanic running his own business, and recently gave up golf due to arthritis, but still plays lawn bowls.  His Gastroenterologist calls him his 1% man.

The surgeon who performed the procedure tells him to just keep doing whatever he is doing because he is so healthy and maintaining weight.

I am glad to see there are others who have beaten the odds against this dreadful cancer which has claimed so many and I hope my husbands and other's stories give some measure of hope for ohers who are experiencing the disease right now.

Oneshot's picture
Oneshot
Posts: 84
Joined: Jul 2009

jdix,

Glad to hear the good news about your husband. I've been on the site for a lil' while. I was going to post a lil' good news myself for others to see and realize, from time to time more of us are making the 5 yr. mark or better. That is when I saw your post. 

 I know the Dr's always use the date when the person was diagnosed.  But I always saw it as remission started after the cancer was disappearing or removed. So having said that.  I past my 5yr. mark on the 10'th of this month.  I was told when diagnosed with Stage 3 PC.  My prospects were slim to none to make 6mos. With the Whipple,chemo and rads!    And yet here I'm able to post that, I'm still here!  I eat most anything that doesn't bite me first!

Similar to your statement. I have always said "Odds are made to be beat!"  I'm always glad to hear anyone beat any kind of cancer!

Prayers to all who have to fight this desease!

pancreas1
Posts: 4
Joined: Aug 2013

I am looking for anyone who has the same diagnosis as me. Neuroendocrine small cell carcinoma of pancreas, poorly differentiated, mets to omentum and liver.

I was treated with chemo and have had clear scans for 10 months now.  I havnt met anyone yet who has the same diagnosis??? Very rare.

Petere
Posts: 3
Joined: Sep 2013

I have Pancreatic Cancer - neuroendocrine small cell carcinoma and my story is the post below Pancreatic Cancer Survivors.

rebelwhg1's picture
rebelwhg1
Posts: 8
Joined: Jul 2015

just wanted to say to all>>>>never give up...after being down from my whipple surgery and chemo i was ready to give up a few times but glad i didnt, you have to keep fighting, its been 6 1/2 years now since my surgery and my last cat scan last month turned out good,  still have minor problems with effects from the surgery like bowl movements and dibetic problems but that i can handle... just glad to still be here, prayers to all the survivors and all who has had cancer or those still fighting it..god bless..

moonyean22
Posts: 1
Joined: Jun 2016

Hi I am going thru the whipple procedure at loma linda on friday june 17th and I am scared to death. The dr told me I was going home with 3 tubes coming out of me, I want to come home and take care of myself he said I need help. Can anyone tell me what to expect? They are leaving my stomach. I have a 1.8 cyst with a growth coming out of it and they also have to remove my large spleen.

Nelsonsummer1
Posts: 1
Joined: Oct 2016

Hi I am 4 weeks post whipple procedure and I tell you it is hard work,  I am lucky I have a great circle of family and friends.  I am still scared for the future as I have to have chemo when I gain weight I am 48kg dropped from 56.6.  How much exercise are you supposed to do.  I get up from bed and walk around the house but then I am back to bed as exhausted.

survivor friend
Posts: 1
Joined: Jan 2017

Just to let you know, my companion had pancreatic cancer 25 years ago.  He had the Whipple procedure, no chemo or radiation.  This was at Mass General Hospital in Boston, MA.  He was told he would probably only live five years.  It has been nearly 26 now.  He is 90 years old. He has been experiencing some intestinal problems, mainly gas and abdominal discomfort of late.  The doctors cannot find a reason for it, but they believe it is related to his original surgery.  He has no other cancer.  We are looking for someone who had pancreatic cancer and is a long term survivor to determine if intestinal symptoms are not unusual after this length of time.  The doctors tell us there is no one else who has survived this long, but I don't believe it.

 

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