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Thread: I Need Some Help From Those Who Have Been Through It

  1. #21
    Geary41,

    I love your post, and its so very true... from reading mags and booklets about pancan...One doesn't really know!
    We have to Pray and hope that the time given isn't correct and its based on the Dr's medial profession (their Job).
    I truly pray that they are so very wrong...

    Thank you for your post!

    Lisa

  2. #22
    Quote Originally Posted by mswoowill3 View Post
    One doesn't really know!
    We have to Pray and hope that the time given isn't correct and its based on the Dr's medial profession (their Job).
    I truly pray that they are so very wrong...
    One of the best who specializes in advanced stages of pancreatic cancer research on the West Coast at UCSF told us back in July 2011 "you have 3-6 months with no treatment and possibly extend your life a bit longer with treatment if you can tolerate it." Shook his head in disbelief when we returned to him in June 2012 to review first NED scans post diagnosis and he ordered us to stop all treatment. A re-visit with him last month almost one year post stopping all treatment to review quarterly scans and liver panels and he said "well you proved us all wrong." There is HOPE!
    07/2011 - Annie age 57 dx w/inoperable stage 4 pc; 5cm tumor/body, two spots on liver 1cm each, CA19-9=21,000+
    08/2011 - folfirinox
    01/2012 - CT: liver healthy, tumor=4mm, CA19-9 normal
    06/2012 - comp 9.5cycles. Tumor=scar tissue.
    CT: NED (No evidence of new or progressive metastatic disease, No tumor recurrence.) Chemotherapy STOPPED. Only medications taken are EPIVIR for the liver and METFORMIN for type 2 diabetes.
    09/2012 - CT: NED
    12/2012 - CT: NED. Runs a 10 kilometer race.
    01/2013 - re-instated gym membership 2-hrs back to back daily training 5x weekly.
    05/2013 - CT: NED; 3-hrs back to back workouts at the gym
    08/2013 - CT: NED; 3-hrs circuit training 6x weekly

  3. #23
    Hiyasofsj, I love your post...gives me hope that my hubby will like your wife Annie..( love to hear and see these success stories) I'm hoping for the best for my hubby after having his 2nd CT Scan yesterday. Which showed a mass on his left kidney.(wasn't there before) So any light in others stories, makes me believe that it can happen to him. (more time). He's going on the chemo pill starting next Tuesday.. Again thanks for your post and love your Bio

    Lisa

  4. #24
    Quote Originally Posted by BraydensMeemaw View Post
    DebbieC---- The Clinical trial is in Phase 2. Since it is randomized and the computer does all the picking we are keeping our fingers crossed that he gets the trial drugs. They are MK-2206, taken by mouth once a week and AZD6244 hydrogen sulfate taken once a day as opposed to the FOLFOX.
    The doctor gave him Ativan after the first surgery to help with nausea. He said that back then they seemed to also make him sleep. He wasn't having too many problems with sleeping at that time anyway though. I was given Ativan before all this started for other anxiety issues and I know that when I took it and went to sleep I sleep pretty hard. So he has tried taken it again recently but it didn't seem to do much of anything. I guess maybe the difference is that now his body went through those chemo treatments. I am going to ask the doctor to try something else.
    Fingers crossed for you that whatever the treatment is, that you see some success with it!
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  5. #25
    Hiyasofsj -
    Success stories like your wifes are what keeps my hopes up. Now if I could just pass the hope on to my husband. I feel so bad for him because, unlike me, he isn't interested in reading as much as he can about this horrible Cancer. He has what I call an "Eyore" personality to begin with ("That'll never work.....) so now he is even more dark and negative. But stories like yours makes me think I have enough hope for both of us!
    Last edited by BraydensMeemaw; 05-30-2013 at 07:08 AM. Reason: forgot something

  6. #26
    It helped for me to read some of the best posts to Joe. Reading all of them can make a person feel pretty bad. And then again some of the really sad posts gave Joe some more fight. One comment from him to me in a really down time about dead man walking set me off. We are all dead men/women walking. Any of us could fall over one day with a sudden heart attack or stroke or hit by a car or any other disaster. No one is immune young or old. As harsh as it sounded for me to speak about this it did seem to put a new light on the thinking around here.

    So far the chemo has shrunk Joe's mass by one third for now. I need to update my signature line. Praying for more shrinkage and Lord willing shrink that baby down to scar like hiyasofsj wife.

    Chris
    73 Year old Husband has/had:
    1-23-13 Mass on pancreas. Stent placed. Adenocarcinoma diag.
    Jan 31,2013. Stage three due to non operable.
    2-18-13 Port placed.
    2-19-13-First Folfox rounds reduced after third and tenth through 7-26-13.
    8-2-13 CT scan Mass strands have moved away from SMV.
    8-14-13 Whipple. Pathology clean margins no lymph involvement. Hospitalized 24 days.
    11-5-13 Still too weak after surgery and pneumonia for chemo
    12-10-13-CT scan clear NED Blood work Ca 19-9 35 No chemo or radiation at this time.WT184.6
    2-26-14 Next CT scan and Blood work Still NED Doing great so far.
    6-3-14 CT Scan still NED Ca 19-9 31.5
    8-26-14-CT Scan Ca 19-9 31.4 and Still NED
    12-2-14- CT Scan Ca19-9 30.1 NED with Concern area on lung Check next scan. WT211.7
    7-7-15 Biopsy on lung nodule positive for re-occurrence of PC. Ca 19-9 47. Xeolda
    4-26-16 Tumors in lungs=3 growing started Gemcitibine. Ca 19-9 339.

  7. #27
    Amen to that.

  8. #28
    Senior User
    Join Date
    Jun 2012
    Posts
    128
    There's no need to force him to eat. It doesn't extend life expectancy. At all. The only thing you can do is make sure that his food is appetizing. When my dad was sick, I used to tell him he could eat whatever he wanted. Then, I would run around town to try and find it. Cold foods are usually easier to digest. My father also used to drink ginger ale because it has more calories than water and it's good for your stomach.

    His favourite food was icecream by far.

    Also, it's important not to get frustrated if he's not eating. Whenever we got mad about it, it made my dad extremely nervous. This doesn't help. It's better to have a lay back attitude about it and never approach eating as a chore. What I used to do is this: Instead of saying: "Diner's ready!" I would always try to bring it up in a casual manner, like: "Hey, I just bought this new pack of icecream, would you like to try it?"

    I hope this helps.
    - Dad, 56, diagnosed with Stage IV Pancreatic Cancer August 15, 2012.
    - Dad passed away January 25, 2013 at 2:56 PM.

  9. #29
    Newbie New User
    Join Date
    May 2013
    Posts
    3
    Meemaw,

    Sorry you had such a long and harsh experience. PC is not only a tough diagnosis to hear, but a tough one to live with. Couple of things I wanna mention to you.

    1) It seems that your husband had an open procedure the first time as opposed to a laproscopic procedure. That of itself raises my eyebrows. The difference is that in a laproscopic procedure they make a couple very small, 5mm incisions in the abdomen where they first visualize the tumor, the liver, the intestines to make sure there are no liver mets. Then, and only then they would proceed with the procedure first laproscopically, but sometimes open. This is protocol, because CT and PET scans do NOT reveal lesions less than 1cm in size so they do miss mets (that's what happened with mom and that's what medical journals out there are saying.) So before creating "a big scar across the abdomen" he should have looked first. This alleviates the pain after surgery. My mom stayed 1 night in the hospital cause she only had 4 small incisions on her abdomen.

    2) My opinion: Careful with clinical trial. If your husband is determined that he is a "good" fit for folfirinox then he should get folfiriniox. It is a regiment that has been studied and shows great outcomes, so I wouldn't try anything else as a first line. If you can, try to get second and third and even fourth opinion. I did that with my mom and 3 oncologist suggested that she be started on folfirinox, that's when I knew that she's getting the right regimen that best fits her.

    3) loss of appetite: what helps my mom is sitting together as a family and eating. We go go out and eat outside if home has become too depressing. Soups of different flavors have done wonders. So we would go out and just order soup. It seems like his appetite is getting better so let him eat whatever he desires till he puts on a couple of more pounds. Ask for CREON, its a pill for pancreatic enzymes that help absorb the food, so that might help with weight.

    Best of luck, will keep you in my prayers.

  10. #30
    Hiyasofsj,

    Just curious, did your wife go through her chemo treatments at UCSF? I know you told me that one of the best there told her she wouldn't make it and then he shook his head when she returned to him a year later. I am asking because I decided that I have let it go too long that my husband has not been given any treatment toward actually trying to fight this cancer and one of the Pancreatic Cancer Specialists at UCSF is reviewing his case next week and will hopefully come up with a better treatment plan then what he has had at UCD. I know UCSF is in the top 10 for treating Cancer and UCLA is ranked even higher with an 80% success rate and getting non resectable tumors back into the resectable range. 50% of the patients are living more than 52 months and there is even a pretty high % that find themselves "cured". But thats at UCLA.
    I just thought I would see what you thought of the program at UCSF overall if that's where your wife was treated. But you can believe that if I don't get any better options at UCSF, we will be heading to UCLA.

    Thanks for your wifes story, it gives many of us hope,
    Staci

 

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