Topic: clincial trial/chemo options for my dad?

This post is copied (with some modifications) from my first post yesterday under Introductions, but since I haven't received any comments, I thought maybe it was more appropriate under this category.  Sorry if I'm breaking protocol by posting the same info twice, I'm new to these message boards and I'm really trying to find out as much as possible to help my dad decide what to do.


My dad, who's 75, was diagnosed with an extrahepatic bile duct tumor in March and had the Whipple procedure at the Mayo in Jacksonville in April.  During surgery they found some spots (largest was 1 cm) in his liver which on initial biopsy were reported as benign, but the final pathology report said that 2 of them were indeed cancer that had metastasized from the bile duct.  The primary tumor was about 1.5 cm and had attached to the portal vein.  The surgeon was able to resect from the portal vein and also removed the 4 spots he saw on the liver.  Due to the involvement of the portal vein and the metastases in the liver, his cancer was categorized as Stage IV.  His lymph nodes and his pancreas were clean, so it's just the liver at this point.

The oncologist at Mayo is recommending chemo.  He has offered my dad to participate in a clinical trial of Avastin and Tarceva or he could go a standard protocol of chemo with Gemzar.  I am a bit worried by the potentially serious side effects of the Avastin and was wondering if anyone has had any experience with this trial or either of these drugs. 

My dad feels so good right now and it's unclear to me as to whether this treatment will prolong his life significantly and if it's worth the potential serious risks and side effects.  We're also having trouble deciding what to do next because we don't really know if he has any visible tumors in the liver right now, since the surgeon said he removed the spots he did see during the surgery.

If anyone has experience with these drugs and their sides effects I would really love to hear from you.  Also any thoughts in general on whether to go with the chemo at all at this point would be much appreciated.

Thanks so much,
zuzuby

2 (edited by marions Thu, 28 Jun 2007 15:26:32)

Re: clincial trial/chemo options for my dad?

Dear zuzuby,

What I have learned so far is:
The chemo agents you are mentioning are amongst several being used in the fight against this cancer, some with promising results.  Unfortunately, it cannot be predicted as to who will respond well, and who doesn't show any improvement at all. 

A good place to start is the "What's working/good news" and the "Experience" section of this forum in order to gain more answers to your questions in addition to, it might be helpful in the decision making process in regards to your Dad's treatment options.

Hoping and wishing for the very best for your Dad

Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: clincial trial/chemo options for my dad?

ZuZuby.... I have the same input as Marions.  Also, when making your decsions remember this cancer is considered systemic and there is always the possibility some free radicals are still in the bile.  I was giving clean margin ect. and no signs of tumors, but it still came back.  Then again, he could go years with no problems.  I guess that is what makes these decisions so dog gone difficult.
God Bless!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: clincial trial/chemo options for my dad?

Marions and JeffG,
Thanks for your input. I will check out those other subject areas you mentioned and see what others have found helpful.

After much searching on the internet, many telephone calls and talking with my mom, we've decided to call his doctor and ask about my dad getting a CAT scan so we can see if there are any tumors in his liver right now or not.  It's been almost 10 weeks since his surgery, when everything they could see was supposedly removed.  I realize that there are probably cancer cells in his liver, but if things are still so small they can't be seen, maybe it's not worth him starting any type of chemo at this point. 

When I spoke to the clinical trial coordinator at the Mayo in Rochester, she said in order to be in the trial he has to have "measurable disease".  So I could be doing all this research on the trial and he may not even be a candidate for it.  That's why we've decided to see about getting him a CAT scan.

Any other comments on the chemo drugs will still be appreciated.  I want to learn as much as possible so if/when the time comes to decide, I'll have some info to base it on.

I'm so glad I found this site, it's great to have access to a resource like this.

Thanks,
zuzuby

Re: clincial trial/chemo options for my dad?

Hi Zuzuby,
I don't feel qualified to respond to most of your questions, as I have only personal experience to go by and I hate to be a downer by relating only negative aspects of chemo. I think it's so hard to decide for or against chemo because it is so variable and everyone responds differently. You think if you don't try it, you'll kick yourself because MAYBE it could have been that miracle cure that it is for some people. Well, not a CURE, because there really is none, but a prolongation of life. I think I read that chemo has a positive effect on only 30% of cc patients - I may have that number wrong, but it was less than 50%.

The question that was most important to me when deciding about chemo for my mother was whether it would improve her quality of life, or let her have a DECENT quality of life for a while, whether or not it shrunk the hundreds of tumors in her liver. We were told unequivocally that it would improve her quality of life, so we went for it. They were wrong in my mother's case, but for some people the chemo does wonders (many people on this site). My mother only had two rounds of Gemzar and Xeloda for two 2-week cycles and she didn't handle the side effects well. She had a compromised immune system to begin with, and was overly sensitive to most drugs, even aspirin and Pepto Bismol, to name two. What I'm saying is that you may want to take your father's physical tolerance into account - can he tolerate pain well? Does he have adverse reactions to drugs on occasion? I read up on the chemo agents before my mother took them, and found that 90% of people have side effects that are mild and treatable and not too debilitating. This was NOT the case with my mother, unfortunately. Also, anyone over 60 years of age usually has less ability to fight off the effects -- usually. There are a lot of "ifs" and "buts" and it's very frustrating. As far as side effects, the Gemzar was the worst for my mother - made her very nauseous (and the anti-nausea drugs didn't provide complete relief), killed her appetite, which wasn't so great at that point anyway, and made her anemic and short of breath so she had to be hospitalized. I really think the stress to her body made her succumb more quickly. As for the Xeloda, I forget her dosage, but the side effects were initially bad so she had to take a lower dose, then she had few problems. Everything tasted metallic to her, but she didn't have the dreaded hand/foot syndrome that you hear about with Xeloda.

My mother was also stage 4 with her whole liver involved, but they found a couple of very small spots on her lungs that really weren't symptomatic - but would have been over time. So it doesn't need to spread beyond the liver to be debilitating. She never had surgery, however, because it was too late when it was discovered, so your father has a much more positive prognosis.

I think your idea about the CAT scan is the wisest choice right now - and I would hold off on chemo until you feel he's deteriorating in some way. This is just my personal opinion, mind you. If he's still recovering from surgery, it may be better to wait before you put his body through more stress. Then again, he could have bounced back very well from the surgery -- like I said, so much depends on the individual and even then it's hard to predict outcomes. I've heard that Avastin, while somewhat effective, can be very hard on the body and they don't always like to use it on older people for that reason. We put off chemo until my mother started to get uncomfortable symptoms, but in hindsight I wouldn't have done chemo at all - she only lived 2 months after diagnosis and had terrible quality of life.  My stepfather died of lung cancer 4 years ago and he adamantly refused any type of chemo, and that made it so much easier for us that he had such a phobia about chemo, so we didn't have to make a choice. You hate to think you're giving up hope by giving up on chemo, but there are many people on this board who swear by natural remedies and foods - carrot juice, mushroom extract, etc. You can try those while you're hashing out the chemo question.

Sorry to ramble on - I'm sure you'll find useful info on this site, and please remember that there is no RIGHT answer, no matter how much information you absorb. I still feel guilty about letting my mother do her last round of chemo when I could have stopped her, but if she didn't do chemo, I'd feel guilty too, so it's a catch-22. What's most important is to respect your father's wishes and keep him informed. And, of course, to be there for him and let him know how much he's loved. He could live another year or another 10 years - and I hope he continues to enjoy good health long after that.

Best of luck to you and your family - let us know how everything turns out. We're all pulling for your father and sending our love -

Joyce

Re: clincial trial/chemo options for my dad?

Hi Joyce,
Thanks so much for your reply.  I'm sorry to hear that things didn't work out for your mother, but appreciate your honesty about her experience with the chemo.  I don't expect it to be an easy road ahead, but want to be as informed as possible, given the circumstances.

I spoke to my dad's doctor yesterday and he agrees that getting a CAT scan is the way to go.  He said that my dad's MRI taken on March 30 (his surgery was on April 20) showed no visible tumors, so this will be the baseline.  It's been about 3 months now, so it should give us an idea of what's going on in his liver.  He also told me that the surgeon did not remove all the spots he saw on my dad's liver (the report said "numerous spots on the liver"), but they were small.  I guess he only biopsied 4 of them and 2 (both in the same segment of his liver) came back as malignant. 

My dad had a tough time recovering from the surgery and from this experience I've learned he has a pretty low tolerance for pain.  And right now he's feeling so good, I know he's nervous about chemo and feeling bad again.  So, I'm praying that nothing significant will show up on the scan.

This doctor has been so wonderful, he spent almost 30 minutes on the telephone with me discussing my dad's case.  He also felt that chemo was not necessarily the best course of action right now, and waiting was definitely a reasonable option.  Of course, he also said there are no right or wrong decisions and that it's up to my dad to decide what he wants to do.

My mom will call on Monday to schedule the scan.  I will update once we get the results.

Thanks again to everyone for their replies and support,

zuzuby

Re: clincial trial/chemo options for my dad?

Dear Zuzuby,
It's wonderful that you have a doctor that is honest and informed and takes the time to talk with you - that's half the battle right there! There are so many questions with this cancer and it's a relief to get some real answers from the medical professionals -and it sounds like he gave some good advice so you can rest easier. You're very lucky on that score.

Keep us updated on your father's progress and we'll all be pulling for a good outcome when he gets his scans.
- Joyce

Re: clincial trial/chemo options for my dad?

zuzuby - is your dad being treated at Mayo?  If so, I'm curious who is the oncologist on his case?  It's great to hear that your dad is receiving good treatment. 


Regarding Avastin, my understanding is that it is tolerated very well.  I believe Avastin is a biological agent that inhibits the growth of blood vessels to the tumors.  At least from my perspective, I think I would be more concerned about the side effects from the chemo agents rather than the biological agent

30-something caregiver

Re: clincial trial/chemo options for my dad?

Sara,
My dad is being treated at Mayo in Jacksonville (FL).  The doctor I was referring to who is so wonderful is his gastroenterologist, Dr. Wallace.  He's been with us since the beginning, when his local doctor referred him back in March for a blocked bile duct.  He's always been there for us and has been very supportive.  We only met the oncologist once, his name is Dr. Kim.  He was ok, but he wasn't completely familiar with my dad's case (not that I expect him to know all the details).  He was a bit formal at the beginning, but after spending an hour with us, by the end he was more relaxed and open to discussion.  He said we could call anytime with questions. 

I decided to call Dr. Wallace first, since he's more familiar with my dad and his case and he has been coordinating everything for him.   I've also met him several times, since I've flown in from Boston when my dad had his surgery and consults.  The CAT scan will be done locally (my parents leave about 3 hrs. from Mayo) and the report will be sent to Dr. Wallace.

Thanks also for the info on Avastin.  I guess it was the list of potentially serious/life threatening side effects that scared me (bowel perforations, internal bleeding, breathing problems).

zuzuby

Re: clincial trial/chemo options for my dad?

Hello Zuzuby,

I just want to briefly let you know of my experience.  I am a 67 year old male that was diagnosed with cc last aug. 06.  A whipple procedure was done and the surgeon told us that they got all the cancer they could see. He recommended follow-up chemo-therapy with radiation for insurance.  a month later i went to a oncologist for treatment.  a catscan found cancer had spread to liver.  largest lesion was 1.3 cm.  he put me on xeloda,  since then. 8months later my largest lesion is less than .6 mm and my tumor markers have dropped from 485 to 53.  I have not had any side effects to speak of.  I know every one responds differently but these were my experiences.  hope this helps and good luck.

Re: clincial trial/chemo options for my dad?

Isaac... I also have tumors on liver and lungs.  I was wondering if Xeloda was the only treatment you have been on these past eight months ?  I'm getting ready to start up chemo again after having radiation for a tumor they found on my spine and if Xeloda is working that good by itself I might try leaving out thr oxaplatin(sp).  Really glad to hear your doing so good keeping things at bay. 
Best wishes!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: clincial trial/chemo options for my dad?

Jeff,  In answer to your question, xeloda is the only drug that i have been on since my surgery.  My oncologist said that he didn't like to mix cancer drugs because you don't know which is working for you.  I guess I was lucky that this has worked.  I am always thinking about when it will eventually quit working.  My doctor says not to worry and enjoy what I have now.  I hope you find a drug that will work for you.

Isaac

Re: clincial trial/chemo options for my dad?

Isaac,
Thanks for relaying your experience.  It sounds like xeloda is working well  for you.  Did your doctor ever mention Gemzar? (gemcitabine is the generic name).  That's what the doctors at Mayo are recommending if/when my dad does decide to do chemo.

So far my dad's tumor markers have always been in the normal range, so at this point, that's not a parameter that can be used for monitoring his progress.

We're still waiting for the hospital to call with an appointment for my dad's CAT scan.  I'll update once we have the results.

Thanks,
zuzuby

Re: clincial trial/chemo options for my dad?

Zuzuby,  I asked my doc what drug he would recommend when the xeloda stopped being effective and he said he would like to go with gemzar.  it will be an adjustment being that gemzar is administered intravenously versus the xeloda, orally.  if it works is what counts. i hope your Dad's scan turns out well.

Isaac

Re: clincial trial/chemo options for my dad?

My dad had his CT scan on July 17th and I'm happy to report that it came back clear with no visible tumors.  The exact words of his doctor "Overall, these findings are very favorable and showed no current evidence of cancer."  He recommends repeating the CT scan, along with bloodwork, in 3 months.  This is the best news we could have received.  My dad is feeling great and we are all praying that he will stay this way for a while.

Thanks to all of you for sharing your experiences and for your advice and support.  This list is a wonderful thing for anyone searching for information and support on CC and I'm so glad I found it.

I will update again when my dad has his next scan.  In the meantime, I will keep all of you in my thoughts and prayers.

zuzuby

Re: clincial trial/chemo options for my dad?

Great news! Congratulations!!! This should be moved to the "good news" section, as we all like to hear it when someone is doing so well. All the best to your father - so glad he's feeling well and had such great test results.
- Joyce

Re: clincial trial/chemo options for my dad?

Thanks, Joyce.  I just posted under the "Good news/what's working" section as you suggested!

zuzuby