Desperate for information!

sharynann
sharynann Member Posts: 28
edited March 2014 in Rare and Other Cancers #1
We just found out yesterday that my Mom, in all probability, has pancreatic cancer. I'm scared to death. I'm not ready to lose her. I know it is bad though. Her doctor called me because Mom felt like she wouldn't be able to answer all the questions that I may have. They found a mass in her pancreas that measures 8 x 5.3 cm. Her doctor advised me against going on the internet. She says "take it one day at a time and stay off of the internet. It's only going to scare you". Heck! I'm scared anyway. I feel our best offense is a good defense. I'm not listening to her and I'm researching everything I can about this. In my heart I know it is advanced from reading the report even though they haven't given us a confirmed diagnosis of cancer. The doc referred us to a surgeon for a biopsy so today we will find out about scheduling for that. My Mom already said that she absolutely does not want chemo. Of course, I don't even know if that will be an option for her. From everything I read last night, surgical resection is really the only thing that will help someone with this type of cancer. Am I wrong? I also have learned that with a tumor of her size, that might not even be an option. I would appreciate any advice that someone could give us. I am so scared right now.
Sharyn

Comments

  • roxanne53
    roxanne53 Member Posts: 154
    #2
    Hello~
    Sorry to hear about your mother's cancer. I had used Johns Hopkins web site and PANCAN.org to get information on pancreatic cancer.
    These are pretty good sites.
    These 2 sites should give you the options. Many times it depends on the nature of the cancer itself. My dad could not really have any of the treatments. He tried chemo. This was just to harsh for him. This was back in 1998. It had been advanced. The whipple was not an option either.

    This is a nasty cancer as it sneaks up on a person. There has been more findings since 1998.
    Being informed is a good defense. Also, too much information may overwhelm.

    A friend of mines mother in law had been on a clinical trial and worked for some time. It was 18 months for her.

    Take care.
    I hope those 2 sites help. At least they are reputable ones.

    Roxanne
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #3
    Hi Sharyn, I just got my computer back online recently and found this board tonight. My Mother in law was diagnosed on 12-10-04 and they were able to do a whipple on her on 12-13-04 . she was very lucky. Her surgeon removed the whole tumor cleanly...as it had no tentacles,and it was easy to get at because she is so thin, unfortunately it has spread to her lungs. She has moved in with us and started chemo in early feb of this year and tumors in lungs are shrinking.I never thought she would leave the hospital.And she did. I did not think she would ever eat again...She is. I never thought they would be able to remove her feeding tube...it's gone and she is maintaining her weight even through chemo. She is doing extremely well it is just unbelievable. Stay hopeful. I prayed and meditated like crazy for her she is still here. I really think attitude is everything.I agree with you... get all the info you can ,wherever you can. Knowledge is power.Think good thoughts..Take care... Laura
  • roxanne53
    roxanne53 Member Posts: 154
    #4
    AuthorUnknown said:

    Hi Sharyn, I just got my computer back online recently and found this board tonight. My Mother in law was diagnosed on 12-10-04 and they were able to do a whipple on her on 12-13-04 . she was very lucky. Her surgeon removed the whole tumor cleanly...as it had no tentacles,and it was easy to get at because she is so thin, unfortunately it has spread to her lungs. She has moved in with us and started chemo in early feb of this year and tumors in lungs are shrinking.I never thought she would leave the hospital.And she did. I did not think she would ever eat again...She is. I never thought they would be able to remove her feeding tube...it's gone and she is maintaining her weight even through chemo. She is doing extremely well it is just unbelievable. Stay hopeful. I prayed and meditated like crazy for her she is still here. I really think attitude is everything.I agree with you... get all the info you can ,wherever you can. Knowledge is power.Think good thoughts..Take care... Laura

    This is really great to hear.
    We have keep our hope and faith alive. And prayer is always part of it all.

    Roxanne
  • Cindy6540
    Cindy6540 Member Posts: 7
    #5
    she will probably have Whipple surgery if it has not spread to other organs. Than radiatio( and chemo(Gemzar). Our oncologist kept telling me to stay away from the internet also, but I found alot of useful information including the clinical trials which my husband is currently in. Research everything just like you are doing,stay pro-active! Good luck and remember miracles do happen.
  • kate2
    kate2 Member Posts: 1
    #6
    roxanne53 said:

    Hello~
    Sorry to hear about your mother's cancer. I had used Johns Hopkins web site and PANCAN.org to get information on pancreatic cancer.
    These are pretty good sites.
    These 2 sites should give you the options. Many times it depends on the nature of the cancer itself. My dad could not really have any of the treatments. He tried chemo. This was just to harsh for him. This was back in 1998. It had been advanced. The whipple was not an option either.

    This is a nasty cancer as it sneaks up on a person. There has been more findings since 1998.
    Being informed is a good defense. Also, too much information may overwhelm.

    A friend of mines mother in law had been on a clinical trial and worked for some time. It was 18 months for her.

    Take care.
    I hope those 2 sites help. At least they are reputable ones.

    Roxanne

    Hi Roxanne, our best friend was diagnosed 2 1/2 years ago with inoperable pancreatic cancer and given 6 months. He is still here! He went to the Dana farber clinic and had some experimental chemo. I think it was cisplatin and one called something like jimbeamsome. He faired really good with that. He has just had a bought with another couple of cancers but he seems to bounce back. You can contact the Dana farber Clinic by just going to www.DanaFarberCinic.com Hope this helps. My husband has esophageal cancer but is now a little over 1 year cancer free!!!! Don't let her give up there are new things found every day. Kate
  • waynec
    waynec Member Posts: 3
    #7
    Cindy6540 said:

    she will probably have Whipple surgery if it has not spread to other organs. Than radiatio( and chemo(Gemzar). Our oncologist kept telling me to stay away from the internet also, but I found alot of useful information including the clinical trials which my husband is currently in. Research everything just like you are doing,stay pro-active! Good luck and remember miracles do happen.

    Knowledge is power. Get all the information you can and keep asking questions. Five years ago I was diagnosed. Mine was pancreatic in nature but was in the duodeum. They couldn't remove the tumor. I had the first round of chemo and radiation. They gave me FU5 by continous infusion. They only gave me six months but here I am 5 years later. Don't give up. You need someone to talk to and you need all the information you can get. Hang in there.
  • roxanne53
    roxanne53 Member Posts: 154
    #8
    waynec said:

    Knowledge is power. Get all the information you can and keep asking questions. Five years ago I was diagnosed. Mine was pancreatic in nature but was in the duodeum. They couldn't remove the tumor. I had the first round of chemo and radiation. They gave me FU5 by continous infusion. They only gave me six months but here I am 5 years later. Don't give up. You need someone to talk to and you need all the information you can get. Hang in there.

    YOu got that right Wayne.

    No matter what cancer, we got to keep on fighting and get knowledge and keep caring.

    Roxanne
  • oliverandCSN
    oliverandCSN Member Posts: 1
    #9
    waynec said:

    Knowledge is power. Get all the information you can and keep asking questions. Five years ago I was diagnosed. Mine was pancreatic in nature but was in the duodeum. They couldn't remove the tumor. I had the first round of chemo and radiation. They gave me FU5 by continous infusion. They only gave me six months but here I am 5 years later. Don't give up. You need someone to talk to and you need all the information you can get. Hang in there.

    Thank you waynec, this goes a long way..

    We are looking for professional nutritional care/advice for my dad - diagnosed with pancreas cancer.

    Has had a 45 days straight diahrea. Started chemo last week.
    He is now losing weight very rapidly.

    Could you tell us if you know anyone who could help and/or say not what is bad (a lot, apparently) but what is GOOD for him ?

    Easy to eat + Frequency of meals

    All info very welcome

    from his family who wants to know WHAT TO DO FOOD WISE ?
  • KarenW3
    KarenW3 Member Posts: 1
    #10
    oliverandCSN said:

    Thank you waynec, this goes a long way..

    We are looking for professional nutritional care/advice for my dad - diagnosed with pancreas cancer.

    Has had a 45 days straight diahrea. Started chemo last week.
    He is now losing weight very rapidly.

    Could you tell us if you know anyone who could help and/or say not what is bad (a lot, apparently) but what is GOOD for him ?

    Easy to eat + Frequency of meals

    All info very welcome

    from his family who wants to know WHAT TO DO FOOD WISE ?

    My 67 year old husband was diagnosed 12/23/05 after losing about 40 pounds in 2-3 months. The diahrea (sp?) is very hard on the body, and the best advice we've gotten is to take pancreatic enzymes, increasing the dose to match the amount of fat per food he eats. He started with Pangestyme CN-10, taking it 1 pill for every 5 grams of fat ingested, taken throughout the meal, and he is now taking 1-1/2 to 2 pills per 5 grams of fat. This is slowing down the diahrea a lot. The oncologist said to titrate the dose until we found the amount that would stop this symptom. Of course, there are prescriptons for diahrea, like lomotil, but if the stools are greasy and runny, rather than just watery, it is probably the pancreatitis that is causing the diahrea, and the pancreatic enzymes in Pangestyme or Creon (both made to correct a deficiency in pancreaatic enzymes) are the best bet for stopping it according to our oncologist.

    Regarding things to eat: try Boost Plus. It has 360 calories per 8 ounces and 14 protein grams, and it tastes great. If he can drink 3 or 4 of these a day, it will make a big difference. If he is having trouble with his appetite, ask the oncologist for Megace, which is an appetite stimulator that you get by prescription. Try to get him to eat the highest calorie and protein foods around. If he is not diabetic (my husband is) it will be much easier to find foods that will work to stop the weight loss by looking at the calorie and protein amounts. My husband was losing 2.5 lbs. a day until we got his calorie intake up to 3100 calories plus per day. It's really difficult to do this, but it's very important. It will be easier to break the day into four or five small "meals" rather than try to do three regular meals. He can essentially eat all day long if that's what it takes to get the calories into him. Monterrey Jack cheese has a good calorie and protein amount, if he likes that.

    Good luck!

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