Pancreatic Cancer Survivors

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  • ELDOMAR2936
    ELDOMAR2936 Member Posts: 3

    Pancreatic Cancer Survivors - Would be nice if they had
    Pancreatic Cancer Survivors - Sure would be nice if they had us separated into a Pancreatic Group so that we could focus on our issues.

    I was diagnosed in Nov. 2011 with Stage 4 and would like to hear from any of you out there in the same boat.

    Lizzy

    I am a 3 year survivor of PC without the whipple
    Good luck to all!
  • spetebx
    spetebx Member Posts: 1

    my father
    My father is a survivor of pancreatic cancer. He had the whipple surgery in 98. it's been a hard road for him.. However, right now he is living in Vegas and is very active. im not sure how long the longest person has survived but in dec of this yr will be 14 yrs for my father. good luck to you.

    My father
    My father has a suspicious growth in his pancreas. It seems that we are waiting for a diagnosis most likely. Seeing these testmonials, gives me hope, and we are keeping faith. God bless you all!
  • Brucey1
    Brucey1 Member Posts: 3
    12 years and 8 months after
    Hi,
    I had a whipple to remove a tumour (pseudopapillary)on the 21st Oct 1999. I have had no reoccurances since and I'm fit and healthy today.
    The only issue after being free of it was dealing with the emotional turmoil of having had it, which I think many people don't realise that some cancer survivors struggle with for quite a few years after.
  • suhailsrs
    suhailsrs Member Posts: 1
    indiagirl said:

    hi
    my dad was diagnosed

    hi

    my dad was diagnosed with pancreatic cancer 2 months back...on july 11 th to be precise...it is stage 4...the tumour is in the body and tail of the pancreas (7*5cm)....so he never showed jaundiced..the only symptom was slight pain and discomfort in the abdomen...at the time of prognosis the cancer had metastatised to the liver..there were multiple target lesions on the liver...we were told that nothing could be done...the doctor gave us max six months..


    we nevertheless started with the treatment...he was being given gemcitabine and cisplatin...my dad was in good health at the tym of the diagnosis..

    we sought for other alternative treatments..we found an ayurvedic medicine centre in ahmedabad...we started with both the treatments simultaneously..


    after 3 cycles of chemotherapy the doc asked my dad to undergo a scan...the scan revealed that the lesions from my dad's liver are almost gone and the tumour in the pancreas has shrunk to(5*2.5cm)...thats more than 50%...the doctors were very surprised...my dad continues to be in good health owing to following a good diet and all those herbal medicines...his haemoglobin has never gone below 11....we are hopeful that he will make a full recovery...

    indiagirl

    ca pancreas recurrence
    hi there, i'm from India , could ypu please elaborate on the alternative medicines.
    My dad underwent whipples in 2010 and for two years he was cancer free.However on the latest scan there are evidences of a recurrence.Surgery cant be done and at the moment the only remedy is chemo-readiation.
    Any information would be most helpful. Thanks
  • jb2012
    jb2012 Member Posts: 1

    Experiences since Whipple 8 months ago. Malabsorption, hernia?
    I'm turning 70 this Oct 2009 and had Whipple eight months ago in Oct 2008. Diagnosis after Whipple was neuroendocrine carcinoma with resection and reconstruction Superior Mesenteric Vein, vascular tumor (3 cm) pancreatic head with extrapancreatic extension, perineural involvement, invasion into SMV, 1 of 5 lymph nodes positive. I've had 6 month checkup and all is going well except for digestive problems--gas, diarrhea, constipation, cramps--and continued loss of weight--now over 50 pounds. I'm still 25 pounds over healthy weight, but the doctor said it's dangerous to lose weight quickly. The doctor prescribed enzymes for malabsorption. I'm getting the hang of them but I'm still learning the foods I have problems digesting even with the enzymes-- salads, anything fried, grilled or breaded, spicy or sour foods, nuts, vegetables that are undercooked. And I've just made an appointment with the doctor because a "bulge" has appeared just under the top center part of my incision. My sweetheart took me on a 3-week cruise recently. Hope I didn't overdo and cause a hernia. I'm happy to have found this site. Best wishes to all of you!

    fortunate1, how are you?
    Hello, my dad is about to undergo the same surgery. Wipple and removal of the mass that is surrounding the SMA and touching the SMV. We are scared to death and very worried about the risks and recovery. Glad to see you were doing pretty well 8 months after. How are you doing now?
  • marineth.miranda
    marineth.miranda Member Posts: 6
    whipple
    my wife just had whipple procedure recently and on recovery right now. we were advised that she will be having chemotherapy maybe immediately after full recovery. help us pray for her and good thing that i had read lot of survival stories on pancreatic cancer, i love my wife and wish that she could still be with us. help me pray for her, thanks a lot.
  • Oneshot
    Oneshot Member Posts: 153 Member

    whipple
    my wife just had whipple procedure recently and on recovery right now. we were advised that she will be having chemotherapy maybe immediately after full recovery. help us pray for her and good thing that i had read lot of survival stories on pancreatic cancer, i love my wife and wish that she could still be with us. help me pray for her, thanks a lot.

    Prayers
    I pray that your wife makes a speedy and full recovery! As well as give your family comfort and strength in this trying time.

    Oneshot
  • CaseyT
    CaseyT Member Posts: 1
    PeterP said:

    Pancreatic Cancer
    Hi cbirger. My treatment started with 6 chemo (Gemcitabine as single agent) sessions over 2 month period (Mar - Apr '07). This was followed with 25 radiotherapy sessions concurrent with continuous Fluorouracil infusion over 5 weeks (May - June '07). Since then I have had 4 further chemo (Gemcitabine) treatments of either 4 or 5 cycles. My quality of life is very good. I understand that Fulfirinox is usually only used as a first-line option for patients with metastatic pancreatic cancer. If this is the case, Fulfirinox has a proven survival advantage over Gemcitabine but has greater toxicity.

    Pancreatic Cancer
    Hi PeterP. Was glad to read about your case as it had given those with inoperable pancreatic cancer hope. Were you on any special diet during your treatment? Best Wishees.

    CaseyT
  • 2466jasper
    2466jasper Member Posts: 2

    Pancreatic cancer survivor
    I was diagnosed in 2003 with tumor in the tail section of my pancreas. Luckily they were able to perform surgery short of an entire Whipple. They got the tail, spleen and lymph nodes and after a few short months I was back to raising my family and chasing more dreams, feeling like the luckiest person in the world.

    Fast forward to the past month, now 50, I saw the doctor for what I thought were menopausal symptoms (serious night sweats). He found blood in urine and elevated MCV's, then sends me on what felt like a medical pyramid scheme from one specialist to another. I kept thinking........after all this time, it can't possibly be happening again.

    Last Tuesday, I learned that there is a 3cm solid mass in my right kidney. Now I am waiting to determine if the next step will be cryo or total removal of the kidney. In any case.....it's another early catch.

    Once again, I will stand and fight. I raised a US Marine. His strength was inherited from his mother.

    pancreatic cancer survivor
    I just came upon this site and stumbled upon your entry. I, too, was diagnosed with a tumor at the base of the tail of my pancreas. I had my spleen removed and lymph nodes removed. I was diagnosed with Stage 3 Neuroendocrine Pancreatic Cancer. This was 7 months ago. I am looking for others with the same disease so I can chat about what to expect. I became a diabetic (insulin) as well as a result of this disease. I want to embrace life but seem to be on pins and needles waiting for the "bomb" to drop and the doctors to tell me that the cancer has spread. I have my octreotide scan next month. Before the mass in your kidney was discovered, were you receiving regular check ups since 2003?
  • Oneshot said:

    Prayers
    I pray that your wife makes a speedy and full recovery! As well as give your family comfort and strength in this trying time.

    Oneshot

    thanks
    thanks for the prayer, she had actually had her 2nd chemo session just the other day, the doctors were amazed on her progress, they even had a photo of her to show the surgeon, Dr. La Madrid, on how my wife is progressing, prayers do a lot of things and i do now believe in miracles, hopefully, she would maintain her progress and although financially it's hard, at least she is doing great, thanks again for your prayers
  • sheila_1968
    sheila_1968 Member Posts: 3
    jawsjr51 said:

    I am about to undergo the Whipple Procedure. Can you tell me from your experience what I will face? I have a 3 cm muscinuos cyst in the head of my pancreas. PET scan shows potential for caner around the outer rim of this cyst. I am a 56 year type 2 diabetic in outerwise good health.

    Pancreatic Survivor
    I had the whipple surgery April 20, 2012. I was in the hospital for 9 days afterward. What to eat and how much to eat is a slow and can be a painful process. Everything has been rearanged in there and it takes some time for it to work some what normal again. I have lost a lot of weight that is normal. Only eat really small amounts, like the size of a baby food jar, if that at times. I had some constipation and diarrhea and also If you don't stay on the diet they give you, you could get really sick and its not fun. I am now going on my 5th week of chemo. I get a week off and then I do 5 weeks of 5 days a week of radiation. At the same time I will have a chemo pump that pumps constantly. Then again a week off and 3 more months of chemo. I have the best doctor (surgeon) in the world and I hugged him for saving my life after surgery. You will be ok and if you take real good care of yourself and really watch carefully what you eat that is so important, you will be ok. I wish you all the luck in the world and I will pray for you.
  • Myroslava
    Myroslava Member Posts: 2

    thanks
    thanks for the prayer, she had actually had her 2nd chemo session just the other day, the doctors were amazed on her progress, they even had a photo of her to show the surgeon, Dr. La Madrid, on how my wife is progressing, prayers do a lot of things and i do now believe in miracles, hopefully, she would maintain her progress and although financially it's hard, at least she is doing great, thanks again for your prayers

    whipple
    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!
  • Myroslava said:

    whipple
    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!

    whipple
    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.
  • Myroslava said:

    whipple
    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!

    whipple
    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.
  • jmhiggins
    jmhiggins Member Posts: 3

    thank you for your reply, and your mom had to be a real trooper. My wife's mother battled cancer for 2 and half years (lung) and I know my wife was in a lot of pain watching mom go through this. Condolences on your mom, and thank you for replying. god bless your future.

    My mom was diagnosed toward the end of August. Stage 2. Doing 2 kind of chemo first, then radiation, the hopefully her tumor shrinks enough to do the surgery. I am very scared. Have any of you used the combination chemo treatment with Gemzar and Cistlatin? This is what she is getting right now every 2 weeks for 4 weeks. I haven't been able to find this combination on the internet. Also, have any of you been treated in New Mexico. Thanks so much for any information you can give and God bless.
  • jmhiggins
    jmhiggins Member Posts: 3

    thank you for your reply, and your mom had to be a real trooper. My wife's mother battled cancer for 2 and half years (lung) and I know my wife was in a lot of pain watching mom go through this. Condolences on your mom, and thank you for replying. god bless your future.

    My mom was diagnosed toward the end of August. Stage 2. Doing 2 kind of chemo first, then radiation, the hopefully her tumor shrinks enough to do the surgery. I am very scared. Have any of you used the combination chemo treatment with Gemzar and Cistlatin? This is what she is getting right now every 2 weeks for 4 weeks. I haven't been able to find this combination on the internet. Also, have any of you been treated in New Mexico. Thanks so much for any information you can give and God bless.
  • Oneshot
    Oneshot Member Posts: 153 Member
    Myroslava said:

    whipple
    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!

    Tell your mom.......
    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.
  • Oneshot said:

    Tell your mom.......
    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.

    hey
    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
    4timer Member Posts: 2
    Long living survivor here!
    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.
  • BrianC2012
    BrianC2012 Member Posts: 1
    saturn58 said:

    cancer free
    i just joined this site and saw that you were a patient at the froedtert cancer center, i am also a patient there getting
    chemo for my pancreatic cancer.
    thanks saturn58

    Still fighting
    My wife is a pancreatic cancer patient at Froedert in Milwaukee also, diagnosed on Dec 31 of 2011. She has an unresectable tumor in the the tail. A second opinion from CTCA in Illinois confirmed diagnosis and the suggested treatment. She underwent 12 weeks of chemo and did quite well. she didn't lose too much hair and her ca19-9 dropped from around 500 to around 10. Very little nausea. We opted to go to the Procure proton treatment center in Warrenville, Ill. After 33 sessions of proton treatment, with no side effects, she has done well except for trying to maintain her weight. We found the Dietary/nutritionist support at Froedert was not a resource, and there are no naturopaths in the Milwaukee area to help out so we are struggling to work out dietary issues. Her first CT scan after treatment showed 50% reduction in the tumor and her CA19 markers well within the normal range. She feels good and is quite energetic despite an occasional bout of numbness in her feet and depression (we both do) from having to deal with all of this. Any unusual ache or pain sets off an alarm. She has her next scan in a few weeks..The spiritual support from our church family has been a big factor for both my wife and I. We'll keep you posted.