Topic: New Member seeking advise

Like many of you, i have been lurking around this site trying to gather as much information and knowledge on this horrible disease. In January, my 53 year old boyfriend was  diagnosed with intra hepatic CC. He was experiencing pain on the right side of his abdomen and also had night sweats. Doctor brushed it off but my boyfriend who is very aware of his body just knew something was wrong and insisted on a scan. Thank God he did.
On january 23rd Dr. DeMatteo performed surgery at Sloan in NY and removed a 6.8 cm tumor. The surgery was a success and the doctor said he was able to remove a large enough margin. He recently had his 6 week scan which showed no cancer as well as blood work and tumor markers were all good. The oncologist and surgeon are still recommending chemo due to the high recurrence of this cancer as well as the fact that 1 lymph node had mets. He starts chemo on Monday which is Gen for 3 weeks on and 1 week off for 6 months as well as xoleda 2 times a day one week on and one week off. Do any of you have any experience or knowledge with this combo of chemo as far as success or side effects? I look forward to hearing from you. God bless you all!

Re: New Member seeking advise

Hi Lorna,

Welcome to the site. Sorry that you had to find us all and sorry to hear what your boyfriend is going through, but glad that you have joined in with us all here as you're in the best place for support and help and you will get loads of both from everyone.

That is very good news that your boyfriend was able to have the surgery and great to hear that it went so well. I too am glad that he insisted on a scan and no on knows our own bodies like we do! As to the chemo, my fingers are crossed for  the most successful outcome to that and please keep us updated on how that goes. So many of our members here or there loved ones have or are going through various chemo's and we have a great chemo board here where you can read about their experiences. It can be found here -

http://www.cholangiocarcinoma.org/punbb … .php?id=16

Here's another link that will be of interest to you -

http://www.cholangiocarcinoma.org/punbb … 1715519255

If we can help in any way then please just ask and please know that we are all here for you.

My best wishes to you and your boyfriend,

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: New Member seeking advise

Hi Lorna,

I have no knowledge of chemo as my sister did not receive it but I just want to say hello and welcome to the forum.  Someone always can answer or at least offer support - the knowledge here as Gavin has shown is phenomenal. 

I'm glad he was able to have surgery and I hope the chemo goes well.

X

Clare

In the stars now . . . .

Re: New Member seeking advise

Hi Lorna,

I had ECC and had surgery.  My surgeon was also able to get clean margins and I had no lymph node involvement.  I was offered the opportunity to have chemo (Gemzar) and my doctor said that because of the clean margins and no lymph nodes, he felt it was an "option" and not a requirement.  However, he said that had I had any lymph node involvement he would have strongly suggested doing the chemo.

I ended up doing 6 months of Gemzar, 1x a week for 3 weeks, with one week off.  He did not recommend Zeloda and I did not do radiation (my choice).

This is not a recommendation for or against chemo (it's a very personal decision), however, I feel like I did everything I could and have no regrets.

Good luck whatever you do and just know what ever you do, it is right for you.

Best wishes,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New Member seeking advise

Hello Lorna and welcome to our elite little club, but sorry you had to join. Your boyfriend is proof of how important it is to listen to your body. The fact he was able to have surgery is a big YIPPEE! The decision to chemo or not is always such a big one. My husband had no chemo and he had clean margins clear as a bell but the CC returned after 3 years. We did not look back as 5 different kinds of DOCs agreed the chemo would not help for where it was located and etc. This CC seems to have a mind of it's own. I learned that a lot of decisions take place from listening to your gut, it is usually right. Continued success and please do keep us posted as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New Member seeking advise

Hi Lorna another warm welcome to the site.  Yes, awesome news that he was able to have a resection and get the tumor removed.  I too had a resection back in January and the surgeon was able to achieve clear margins and there was no lymph node involvement.  I am starting chemo in 2 weeks.  I am familiar with Gemzar and not Xeloda.  The chemo regimen I will be on is Gem/Ox.  Prior to resection I was on Gem/Cis and keep in mind everyone is different and everyone tolerates these drugs different the Gem/Cis is generally well tolerated.  I had very few side effects with that combo.  Good luck on your journey ahead and keep us posted.  smile
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: New Member seeking advise

Lorna -
Another warm welcome to the family. Sorry you had to join us. It does sound like things are gong great so far. As has been said previously having surgery is the BEST option. I am so happy for both of you that he was able to have it.
Chemo or not to chemo that is always a hard question. In my husband's case we chose to do chemo and then chemoradiation. He had a fairly large extrahepatic tumor with regional node involvement (one out of two). He did 6 months of Gem and Oxaliplatin every two weeks and now we are on a continuous infusion of 5FU with his radiation.
As far as chemo has been so far other than making him tired, he's fared pretty well. No nausea or any other issues and his blood counts have stayed good. I don't anything about the xeloda since we haven't dealt with that.
Good luck with the decision.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: New Member seeking advise

Lorna....I would like to follow the others and welcome you to our site.  Also wanted to mention that our Kris00j had been on Gemzar and Xeloda in addition to other treatments.  Thought to include a link:
http://www.cholangiocarcinoma.org/punbb … 894#p84894

Kris' posting is the 4th from top.  The new web site (soon to launch) provides us with a better search function however; for the present you might want to click on her name in the signature box (to the left of her posting) and scroll down to: View all kris00j's posts.

Good luck, dear Lorna.  If you need help - please don't hesitate from reaching out to us.

Hugs,
Marion

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: New Member seeking advise

Lorna,

I don't have much to add to the information the others have already given, but would also like to welcome you to the group.  You will get all the help and support you want or need here.  Wishing you and your BF the best.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: New Member seeking advise

Thank you all for the warm welcome and very helpful links. I am on this site daily and feel so inspired by all of you and the strength and courage you all have. My BF had his first dose of Gemcitabine on March the 17th and did really well. No side effects other than some fatigue. He did experience alot of pain between the shoulders on the 3rd day but not sure if it is related to the chemo. We went back on the 24th for his second treatment but platletts and white blood count was too low for chemo. So he will take the week off and see what happens next week. Any suggestions on raising the numbers? He is juicing 2 times a day and eating very healthy. He has always been health concious when it comes to his diet. Any suggestions on any supplements that may help?
I appreciate any input. God Bless you all! xoxo

Re: New Member seeking advise

Lorna...proteins are very important. You may want to use Whey if so preferred. And, tons of water to flush the chemo through the kidneys.  The more the better.  Many others had to sit out a treatment due to low platelets, but in general they were ready to pick up again for the following session.
Hugs
Marion

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