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ethan20 · Regular Joined: 12 Jan 2009 Posts: 23

My dad (63 and otherwise healthy) found out he has pancreatic cancer with liver mets. this December. He has started Gemzar and will begin taking Tarceva. They also said there is a type of chemo that can be put directly into the liver. We haven't heard anything promising. The most hopeful came from the surgeon who said that the best situation would be that the chemo works and they can operate. Which is still scary from everything I read out the Whipple. We also looked into the cyberknife.

My question is, has anyone had luck with gemzar/tarceva, mini whipple, or the cyberknife.

My other question is does anyone use anything alternative they could recommend? I have read about Triphala, vit C, milk thistle, hydrogen peroxide therapy. Is there any truth behind it all? I would try anything at this point.

Adagio7780 · Posted: Mon Jan 12, 2009 5:32 pm Post subject: Re: new member

ethan20, I am sorry to hear about your father. I was also diagnosed in Dec 08. (See my post below, 'Never thought I'd be here'.)My adenocarcinoma is in the body of the pancreas, not the head, so I would not have been a candidate for the Whipple procedure. Since I am stage IV, I am also not a candidate for any surgery at this time. I am expecting a call from my oncologist Jan 13 to discuss possible Clinical Trials. I want you to keep me posted on your dad's meds and progress, and I will do the same from this end. Good luck and godspeed, son.
_________________
Man tracht, Got lacht (Man plans, God laughs)

ethan20 · Regular Joined: 12 Jan 2009 Posts: 23

Floyd, thanks for the reply. My name is Christine and my dad's name is Ron. My ethan user name is because of my son. We are from NJ and my dad is currently at Jefferson Hospital in Pa. We also looked into the cyberknife at Cooper Hospital in Camden NJ. The cyberknife is attractive because of it non invasive method. Like everywhere else the Gemzar is the 1st and standard practice of care. The sad part is Gemzar alone doen't have a good success rate. I am trying to get my dad a PET scan for the end of Jan. to see how things are going. That would mean he only had a month of chemo. They orginally told me three months of chemo then a scan. Kind of scary. My dad's tumor is in the head of the pancreas and a spot in the right lobe of the liver. As of his last scan, it was confined to that area and did not invade the vessels or duodenum. He had two sessions of gemzar and other then being tired and constipated, not so bad. We are keeping our fingers crossed. He stopped smoking and drinking all together. I wish he would change is diet more, but I know he is trying and it is hard to change yourself into a health nut overnight. I would like to see him try some supplements and herbs but I'm leary to just buy a bunch of random things. I have been researching on the internet but the doctor he sees never recommends any. I am determined to find something or a combination of things that will work.
Not prolong, a real solution.

I am realistic, sadly I see this everyday. I work in Pathology in a hospital in Atlantic City NJ. When this happened a doctor I worked with looked me in the eyes and said- bad things happen all the time. I thought about and he was right. Then I thought and realized that good things happen all the time too. I stopped reading all the statistics and the generic pancreatic info. I look up survivor stories and promising new research. When doctors tell me if it worked we would be doing it, I think well it worked on somebody why couldn't it work on my dad. I will let you know how things are going and anything else my dad decides to try. Please do the same. If you ever want to talk my email is christine_volpe@hotmail.com

Also what do you think of the Cancer Treatment Center of America. I have talked to two people that were treated there. The people they highlight on their website. A couple people online had said that they are really just good at their marketing. Not sure what to think.

Also I read some articles on a cholesterol medicine called Lovastatin. You should check into it.

I will keep you and your family in my prayers.
Hope to hear from you soon.
Christine

tweetybird · Regular Joined: 29 Jan 2008 Posts: 18

Hi, etha20...

I am going through this journey with my mother now, and have been for 2 years feb 09. Although as far as we know my mothers cancer has not spread. Hers is affecting some arteries though. I mainly just wanted to post and tell you, to maybe give you some relief or hope, and know that somebody is out there and has been on the same chemo's as your dad is on. My moms oncologist started her on gemzar at the beginning of her treatments, she did i think two cycles of that i believe along with taking a tarceva once a day. After the cycles of gemzar her tumor did shrink some, and they thought they would be able to perform surgery to remove it, but couldnt because of the arteries involved. After her surgery they took her off of gemzar and left her on the once a day tarceva. Shes been only on that for about a year now, and just recently theyve taken her off that due to other health issues, and we have to figure out the next step.

But I just wanted you to hear that someone else has been on those same drugs and so far cant complain about the results. The cancer has responded very well for her, which is great, and i hope they do the same for your dad. I know how hard this must be for you and your family. Also i wanted to add, you were talking about your dads diet, im not sure if its the medicines or the cancer itself, but my mothers changed on its own, and shes lost a ton of weight. Shes not even healthy anymore, so i think your on the right path of trying to find a supplement for him. What he has is a very nasty disease, and it effects each and every individual so differently.

So please keep us posted, and i will say a prayer for you and your family each time i pray.

ethan20 · Regular Joined: 12 Jan 2009 Posts: 23

Hi tweetybird,
thanks for the reply it means a lot to talk to people that understand what you are going through. Have you considered cyberknife for your mom? My dad's weight is actually good, I was more concerned because he is generally not a healthy eater. He is supplmenting his diet with high protein low carb drinks we bought from Target. His problem is that he feels full quick and he gets constipated. I will buy Ensure with fiber next.

I am looking into something called Triphala that is suppose to help with digestion.

I am happy to hear your mom is doing well considering what a bad situation this is. I hope you able to get her weight up. Please keep me updated and I will do the same. I will pray her and your family. What is your mom's name?

Adagio7780 · Posted: Mon Jan 12, 2009 10:50 pm Post subject: Re: new member

Nice to meet you, Christine. Would that it be under better circumstances. I know my oncologist recommends against CTCA, but I don't have any information one way or another, nor the education to evaluate one place of treatment over another. I'm a little old-fashioned, though. I don't like the come-on with the advertising. We have just one shot at this, and I'll take mine at Duke University Medical Center, MD Anderson, or a similar facility.

My stepfather died in 1992 from a type of bone marrow cancer that he fought for nine years with the help of the doctors at Duke. To hope to survive as long with this stuff is difficult, but progress is made each day in the search for a cure.

You are wise to look for positive things. As soon as I was diagnosed, I (like most people) started looking at statistics, each set more grim than the last. At your suggestion, I am going to begin the search for everything positive I can find about this. Thanks for the great idea! Also, I have added Lovastatin to my notes to discuss with my doctor.

I applied for Social Security Disability today. My sister works in social services, and told me that this diagnosis is an automatic full disability. As I was completing the application, I noted that my prognosis was terminal, and a new window opened up that urged me to go down to the local SS office after I had finished my online application. It said that the process was automatically sped up for terminal diseases. We hope it's not terminal, of course, but it will help the process in the meantime.

I will send you an email soon. I also look forward to getting to know you and Ron. Tell him I said hello! Smile

_________________
Man tracht, Got lacht (Man plans, God laughs)

Sherry · Regular Joined: 30 Dec 2008 Posts: 45 Location: Missouri

Hi Christine.
We've been going through this with my mother-in-law for 2 years now this past November. Our situtation is very much like tweetybirds.

My suggestions to you are one to stay on top of the meds they give and the nutrition. My mother-in-law gets confused sometimes and doesn't take her medicine right or maybe won't even eat. My husband made a spread sheet and bought a divided clear craft box and labeled the top (lid) of when to take each section. He fills it for her. He keeps 2 boxes with 8 days going at a time. It's labled before breakfast, during breakfast and so on. At the end of the day we can see what she has taken and what she has missed. It seems like when she misses doses of her meds she has bad times or days.

I cook dinner every night for her and her husband and then we eat with them. I fix breakfast on the weekend and my brother-in-law tries to do that during the week. He's retired, my husband and I aren't. At lunch they eat leftovers or a sandwich. They're not able to cook for themselves. She's very weak and her husband is spoiled and not used to doing for himself plus has early stages of Alzheimers. I think when we eat with them it gives her the incentive to eat too.

Oh one other thing-attitude is a big thing too. She is pretty tough. I tell her don't give up and she says I won't. But I can tell there are days that she wants to throw in the towel and I know it must be very hard. But there are days I can tell she is fighting like mad and that's usually a good thing.

I'm sorry you're going through this. It's not an easy road to go down. My thoughts and prayers are with you.
Sherry

ethan20 · Regular Joined: 12 Jan 2009 Posts: 23

Sherry thank you for the advice. It really gives me something to look forward to when nice people post replies. Your mom is lucky to have her family looking out for her. I'm really close to my dad and my young boys adore him. The hard part is that he is an hour away. My sisters and mom are with him everyday and I try to get home as often as I can. It makes me sad to think of the people that have to go through this alone. Family and friends make all the difference. Please let me know how your mom is doing. I will say a prayer everyday for my dad, your mom, and all the others that have to deal with this.

Sherry · Regular Joined: 30 Dec 2008 Posts: 45 Location: Missouri

Oh and just another thought, I don't know how your mom or family is about having a clean house, but that is important to my mother-in-law. The house doesn't get very dirty, but we give it a really good cleaning every so often and she says that makes her feel good. So sometimes it's just the little things that help them to feel better. Maybe this would even make your mom feel better. It gives her more time to spend with your dad.

ethan20 · Regular Joined: 12 Jan 2009 Posts: 23

Sherry- that's a really good idea!

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