Topic: Help with different chemo cocktails???

You all have been very helpful, especially PCL1029, thanks for you input.  I am again looking for your input.

My mom just got her CT scan results back and the Gemzar/cisplatin isn't working.  The tumors have grown larger.  She has already tried gemzar and Xeloda with radiation and two tumors returned.  Her doctor wants to change to another type of chemo, I do not know the name yet.  However, my mom is worried because the doctor said this will be her last option, so she really wasn't ready to go there.  Also the doctor said fluid was being released by the tumor.  They want to drain it from my mom.  The doctor said the fluid would return and this would be a continual process.  Mom is not happy about that either.

After reading the posts here on the chemo page it seems like the chemo she has tried so far are about the only ones that are used.  Any one have good luck with other combinations?

Also, I have stated before that we always go for a second opinion with Dr. Lenz at USC and take that info back to my moms doctors at Kaiser.  I thank others who have posted that Dr. Lenz is great and we should trust him.  Is there another doctor, anywhere, that you would suggest we send her info to so that we can see what else can be done?  I've seen the name Dr. William Chapman with Barnes-Jewish Hospital, but when I looked him up, he was a surgeon.  I would like to find another oncologist for a third opinion.  After searching in the tool bar, so many different name come up.  Any suggestions from all of you survivors:)

Re: Help with different chemo cocktails???

At present I believe that the Gem/Cis chemotherapy is considered to be

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: Help with different chemo cocktails???

Hi mn,  How long has your mom been on Gem/Cis?  My husband was on it for 2 cycles and the tumors continued to grow. They were going to take him off except for the fact that his liver numbers started improving, so we continued and the growths stopped. He finished the 8 cycles. He was doing well for 7 months with no growth and tumor markers and bilirubin in normal range but symptoms have returned this week so we are off for a scan tomorrow. Just wondered if they should try a little longer with your mom before switching again. Best wishes. Nancy

Loving my husband from afar.

Re: Help with different chemo cocktails???

Hi MN,

I am sorry to hear of the last results from your mums CT scan. I can't add any personal experiences regarding chemo as my dad never had that. But I  do agree with what has been said regarding getting a third opinion if your mum wants to do that. Also, I wanted to share this link with you regarding ascites that I think will be useful to your mum -

http://www.macmillan.org.uk/Cancerinfor … cites.aspx

Please do not give up hope and remember that we are all here for you. We know what you are going through right now and we care.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Help with different chemo cocktails???

You guys are the best!  Really, much more helpful than any doctors.  Isn't amazing how after you are learning about all this you think to yourself, "Gee, I should have went to medical school."  Again, thanks.

6 (edited by PCL1029 Sat, 27 Aug 2011 16:16:31)

Re: Help with different chemo cocktails???

Hi,mn,
Thanks for your compliment. I looked over all your messages entry one more time and I found one thing I should address to you first. You mentioned about your aunt passed away 2 thanksgivings ago because of CC too.  Choledochal cysts,Caroli's disease and congenital hepatic fibrosis are mentioned as genetic  or congenital risk factors for cholangiocarcinoma in research articles. since I do not know about your age;if possible ,you should try to get a Cat scan with contrast  of the chest,abdomen and pelvis or at least an ultrasound of the liver and abdomen to check yourself out every few years after the age of 45 to provide early detection of the same .

In general,tumor growth doubles its size every2-3months,some are faster and some are slower;therefore if your mom had been on Gem/Cis chemo for about 2-3 months after the most current CAT scan result;then the diagnosis that the Gem/Cis was not working may be correct.Based on your info,your mom might have FOLFOX-5FU,oxaliplatin and leucovorin as chemo and  was not effective;as well as the first-line chemo Gemzar/Cis. If the doctor wants to try a new chemo regimen,that will be fine;but to say that this is the last chemo that will work ,may be he is referring to the current first-line or available chemo protocol only and not counting the other possible treatments and clinical trials.
There are molecular targeted agents such as Avastin,Tarceva,Erbitux,Nexavar and panitumumab (this drug is on clinical trial)and even the oral  everolimus that is used for pancreatic neuroendocrine tumors may be of use in the future.

And as some member on the web site told us that Dr.Bruckner in down town New York Hospital loves to use " chemo cocktails" -consist of 5 or 6 different chemo agents at low dose combination to treat CC. I personally  ordered and await on a report  of his additional findings that supposed to be done and published in April on the J.of clinical oncology but I still have not gotten the article. So I have no opinion on Dr.Bruckner's chemo regimen.But if you look under "bits and pieces" on the chemo forum on this web site,his result that I saw on ASCO 2011 poster was pretty good.His chemo regimen is not the conventional or traditional type, so you may have to talk to his office himself or his patients for outcome assessment .
Current recommendation suggested by the articles,in your mom's case, will be to join a clinical trial through large university hospital if possible.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Help with different chemo cocktails???

I had to share this with you.  It was a good thing I had just spent the last couple of hours with my mom and she seemed to be feeling pretty good, otherwise I would have a breakdown.

As some of you know from my posts, my daughters fathers side of the family has a few doctors and nurses.  You've told me I should consult with them in regards to some of my moms issues she had.  So today, when I was picking up my daughter, I was talking to her grandfather, a well respected urologist, and asked if he could suggest an oncologist to take a look at my moms records in order to have a third opinion of what was happening.  He looked over her ct results.  I had them in my purse from visiting my parents.  He asked why my mom would want another opinion.  I told him that she was worried because her second opinion doctor stated that if this chemo did not work there would be only one more to try and then they would be unable to do anything.  His response "yes, if this next chemo didn't work the next thing would be death." I guess not what you want to hear.  Maybe doctors take a class in being so cold.  Or maybe I just can't accept the truth.  Then he went on to tell me about the grief stages of cancer.

So now you understand why I come to you guys for support.  It saves me and you all build someone up instead of knocking them down.  We all know the time will come (for all of us) but all we have is hope...and I choose to hold on to all that hope for as long as I can.  I guess we just keep trying to find the doctors that will tell us what we want to hear. 

Again, thank you all.

Re: Help with different chemo cocktails???

mn....ughhh. Isn

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: Help with different chemo cocktails???

Hi, mn. I am sitting in myy oncologist's waiting room waiting for my pump to be filled for the first time. Finally! I have to say don't ever give up hope. Keep fighting, and helping your Mom to want to fight.
I have to tell you about my cocktail. I am on gemzar/oxaliplatin. My tumor is in my liver, but located at the top of the liver and surrounding 2 of the 3 hepatic arteries. It also surrounds my vena cava so it has not been resectable as of yet. The Gemzar/Oxaliplatin has side effects, as do most chemo cocktails. But I have to share my results. It might help you to decide to ask your onc about these chemos.
My tumor was 5.4x4.3cm. Not very large in the scheme of things. But it had spread to my lymph nodes. I had surgery to implant a liver infusion pump on April 19, 2011. The surgery was not successful. The pump has not been able to be used yet. I have had 3 embolizations, the last one finally was successful enough to try using the pump. But the important part of my story is this:
June 10, 2011 I started systemic chemo with the Gem/Ox cocktail. I have it approx. every 2 weeks. It takes that long for some of the side effects to wear off. Since June 10, my tumor has shrunk from 5.4x4.3 cm to 4.0x2.4cm. So there is hope!
Please talk to your onc about this treatment. It might not be for your mom, but it can't hurt to ask.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Help with different chemo cocktails???

Thank you kriss00j...I wish you the best of luck with that cocktail.  And I am thrilled  it is working with you.  That was the chemo that my mom just ended.  I don't understand how her tumors can only get bigger with more chemo...and radiation.  It would be a success to us if it just remained the same size.  I think my mom has decided that she will try the next chemo which is Irenotekin (phonetically spelled, sorry) with 5FU.  He said it will take a lot out of her, but she knows she just has try try it a couple of times to see if it has done anything.

She does want to keep fighting, but then she gets really sad.  Poor thing is still stuck in emergency, day 2. No rooms available yet. She has had transfusions, plasma, waiting on colonoscopy and ascites drainage.

You Kris are in my prayers and keep up the good fight.  I'm thrilled it is working for you.

Re: Help with different chemo cocktails???

mn:
I am sorry that "my" cocktail didn't work for your mom. I understand that it is not widely used per my oncologists. I was hoping to give you some good news and give you something to hold onto.
I pray the 5FU and irenotekin work for her. I know how hard it is when it gets so frustrating. I will keep you and your mom in my prayers. I hope you get some good news soon. I pray for a good CT scan in the near future.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.