Topic: great news!

My father was diagnosed with cholangiocarcinoma on January 21, 2010. They originally found two lymph nodes affected, lesions on his diaphragm, and one tumor that measured 7.5 cm. They removed one of the lymph nodes during exploratory surgery and told me that his tumor was unresectable.

He has been receiving Gemzar and Oxaliplatinum chemotherapy every week since. We have been using this therapy because the tumor is unresectable.

In August, he received a treatment of the SIR-Spheres micro-spheres. The one month scans show that the lesions on the diaphragm are gone, the one lypmh node that was remaining after surgery is now .5 mm and not worth mentioning anymore, and that the one tumor is actually two small tumors that are shrinking! One tumor has already shrunk about 1 cm!

We are so grateful for this news and blessed to have such a great team at CC! :-)

Has anyone else had luck with the Sir-Spheres?

-1hopefuldaughter

Re: great news!

I'm new to this board and we haven't started chemo yet - but that all sounds like great news...we have meetings setup with oncologists tomorrow and next week - so I've written down what you have done and I'll be discussing with my doctors. 

Congrats on the good news - it's always nice to hear.

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: great news!

Onehopefuldaughter, Welcome to our family and so great to hear your Father is already a survivor! That is just great news, nothing we like better. Keep up the positive attitude and you with your dad will do very well. Please keep us posted.

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: great news!

We love to hear stories like that!  Do the doctors think it's the chemotherapy or the sirspheres that have been effective?  You must all be feeling very glad at the moment.

Re: great news!

@ Katja: The doctors believe that is a combination of the two right now. We will see more results in November when he gets his three month scans to see how much more the SIR-Spheres have shrunk the tumors. I am keeping my fingers crossed and staying positive. In my opinion based upon the latest scans, the SIR-Spheres have significantly helped.

@ Everyone: Thank you for all of your kind words everyone. I really appreciate them and love hearing your feedback.

Re: great news!

Hi 1hopefuldaughter,

Welcome to the site. Sorry you had to find us but glad that you have joined us all. And thank you so much for sharing your dad story with us and I am very happy to hear that he is having success with his treatments. I will keep my fingers crossed for continued success and look forward to hearing more about it. I hope that you will keep coming back here and let us know how your dad is doing.

Best wishes to you and your dad,

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: great news!

So lovely to read this news first thing on a morning.

Best wishes

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: great news!

It's great to hear good news.  I was diagnosed on April 16, 2010 and had successful resection surgery of the liver (about 80%) of the liver.  It is all back now and have been on Gemsar for the past 3 months.  Just had my first CT scan and it seems something has shown up on the scan.  It looks like a lima bean size spot, and we are having it biopsied on monday.  They are going to change my chemo treatment starting on wednesday of next week to Oxaliplatin and Xelodin?? 

Can anyone tell me if this is a hopeful way of clearing these spots??  I am way too young for this to be happening.  I turn 46 on October 5 and I am praying that God will intervene and get me and my family through this whole ordeal.  I am a very healthy young man and my blood work is phenomenal.  I hope someone out there can reassure me. 

Thanks everyone, I am new to this site, but I just had to give it a try.

Matt

Re: great news!

@ Matt (mvbittner): My father who is 53, is on the Gemzar and Oxaiplatinum and the combination is duing wonderful things for him. He is very young like you. Oxaliplatinum does come with a lot of side effects and causes a lot of numbness the more you are given it. How often are going to receive the Oxaliplatinum? Make sure you are very honest when experiencing numbness because they might hold off on using that on different weeks. That type of chemo also makes you very sensitive to hot and cold things. We keep a pair of gloves on top of our refridgerator(sp?) for my dad when he gets things out because of the tingly feeling it gives him. It is like hitting your funny bone, but only it can be a constant tingly feeling and is not so funny either! :-)

I am not sure about the Xelodin chemotherapy because my father has not used that one. My best advice is to research them both to find out their side effects and to learn what to expect from treatment. I always research and read about my dad's chemotherapy to be able to help him and understand the side effects he experiences.

I wish you and your family the best. Let me know how your new treatment plan works out for you. If you have any more questions feel free to find me on here. :-)

Re: great news!

Thank you.

Where is your father being treated??

Matt

Re: great news!

My dad has just finished 8 cycles of xeloda without any significant side effects.  The hand foot syndrome was easily managed with 'udder balm' (not the emollient the hospital gave us- we bought it off amazon).  He experienced diarrhea which was put down to the xeloda but continued for weeks after so must be a result of his whipple and malabsorption.  He was able to do most things as normal on xeloda and had a clear scan at the end of it.  Not sure about oxilaplatin but I would imagine a combination is better than a single agent.  Good luck with the new treatment.

Re: great news!

Matt, I'd also ask about radiation or one of the spheres type treatments when you next go.  They do seem to have some great success stories.

Re: great news!

@Matt: My father is being treated at Cleveland Clinic. We absolutely love his doctor and the treatment he recieves there. Any doctor who leaves their family at a drop of the hat for you and calls you to see how you are doing is one in a million and that is exactly what our doctor is. I agree with the last comment about the spheres. My dad's doctor introduced us to am amazing doctor at the Cleveland Clinic that administered and treated my dad with the SIR-Spheres micospheres on top of the Gemzar and Oxaliplatinum and it is working out very well. The doctor who administered the spheres and his staff are amazing too. Both doctors and their staff talk to us weekly and always are happy to answer any questions.

Re: great news!

thats a great news!congrats!!i have just joined this forum and its really nice to hear such a good news..

Re: great news!

Good news/what's working?  Here is an update on my brother Ned.  On Sunday 09/26/10 a benefit was held for by brother in Buffalo, NY (actually in a suburb where we were raised, Ned still lives there), called "A Night for Ned".  This benefit hosted 6 live bands as well as auctioned prizes and was very well organized.  Three of the participating bands were groups Ned currently plays in and 2 of them are Beatle groups.  "I get by with a little help from my friends" is certainly a fitting song that ofcourse was played.  I know that 800 tickets were sold @$25 each and the tribute by all of his friends, fellow musicians, and family was the best medicine money can buy.  It will be a lasting memory for all but most importantly has left my brother feeling on top of the world!  Although I could not attend I live 1500 miles away in Florida, I will be visiting Ned starting this Wednesday and will get a copy of the filmed event.  I will also get a chance to meet his onc dr. for his important visit to see what the scans show after 3 or 4 rounds of chemo.

Right now, Ned is happy, comfortably pain free and so I am happy too. 

Victoria

Re: great news!

Victoria--- Who is Ned's Oncologist? We are in Buffalo too and my mom was just diagnosed on 8/18/11.
thanks,
Trish

Re: great news!

Trish.....just wanted to share with you that the posting you are responding to is dated:  28 Sep 2010.  Don't worry it takes some time to learn the in and out's of this site.
Another way to reach Victoria is by sending a personal e-mail.  Simply click on E-mail, left side, under her name, below IP number. 
Good luck and all my best wishes
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: great news!

my dad's oncologist suggested gemzar and cisplatin for chemo. Is there any success story out there with this combination?

Re: great news!

Nancy T,

Take a look at the Chemo forum, there are plenty of posts about all kinds of chemo combos:

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

Patty

Re: great news!

Love reading about therapies that work!  Great news!

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.