Topic: Update on Jeff - any one familiar with Taxol chemo?

Hello CC Family,
Completed 7th infusion of Cis/gem on 2/25. PET scan on 3/5 showed significant progression. Primary liver tumor up to 13.7 x 16.9 cm. was 11.4x 12.3 on 1/15.

Second onc opinion @ USC with Dr. Heinz Lenz went well. Got some good suggestions, but basically in agreement with Tx todate. Loved office staff, NP Taline & Dr. Lenz.

Port placement today. Chemo with Taxol on next Monday. Liver biopsy on tuesday.

Any one familiar with Taxol chemo? Liver biopsy to check for HER 2. Hope is to supplement Taxol with chemo for HER 2, depending on biopsy results. Seems unconventional. But we don't want to wait for results for 3 weeks without any treatment, so onc is giving taxol a try.

On personal side, Jeff continues to work 75% of full time. (this is therapeutic for jeff.) Swelling feet & ankles. Nausea @ night 3-4 times per week. Distended abdomen, hard stomach. At last chemo, IV moved and Jeff got some cis infusion into muscle tissue of right arm. Sore and red but he does not complain. Ever. He is very fatigued.

Also on personal note, his uncle arranged for Laker game. Through series of unique unexplainable series of events, he met one of his heros, Kobe, who signed his hat! He is still smiling. Both his uncle and I think Jeff is the hero.
Also found out he will go to state bowling tournament with special Olympics / ARC in Sacramento on 5/4. He is exstatic.jeff has taught me that it is all about what you choose to focus on.

Anyway, input & info on Taxol would be appreciated. Please keep Jeff in your thoughts and prayers.

Bob & Nancy
Jeff's mom & dad

Re: Update on Jeff - any one familiar with Taxol chemo?

Your Jeff is one amazing guy!  He's busier then most people who do not have cancer and from what you say, smiles through it all.  You must be so proud of him and it's obvious you've done and continue to do a wonderful job as parents.

Very cool about Kobe. I'll bet that was quite a treat.

I have no experience with Taxol so I can't answer that part of your note, but just wanted to say hello.  I think of you and Jeff often. Thank you for the update.


-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: Update on Jeff - any one familiar with Taxol chemo?

Jeff is our Timex watch...takes a lickin and keeps on tickin! What an amazing family you are. I bet Kobe was so honored to meet him! Can't help on the chemo but am praying for a miracle for Jeff!

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.

4 (edited by PCL1029 Sat, 16 Mar 2013 08:01:24)

Re: Update on Jeff - any one familiar with Taxol chemo?

Hi, Jeff's Mom and Dad,
As you know I am only a patient and not a doctor; but I have a suggestion for your son if I may.

Ask the doctor before or at the time of biopsy to see whether s/he can get more tumor tissue sample to have  a chemo-sensitivity test done for your son.That is to see which drug is more sensitive to your son's cancer.
In this way, within a couple weeks, the doctor will at least have a better idea about which drug or drug combination will most likely work for your son. HER2/neu is only one biomarker apart from KRAS,BRAF,EGFR,PTEN, TOP2A, TOPO1,TS,ERCC1 and a lot more.

Sorafenib (Nexavar) has been mentioned to have some success for  CCA patients when I asked my liver specialist if nothing works on the chemotherapy agents side during my consultation .Nexavar is a multi-kinase inhibtor to inhibit cell proliferation and the VEGFR2/PDGFR-beta signaling cascade to inhibit angiogenesis. So, if you think  this is an appropriate suggestion, you can ask your oncologist to see what he thinks whether Nexavar is suitable for your son or not along with using TAXOL at this time.

http://chemocare.com/chemotherapy/drug-info/Taxol.aspx

http://www.drugs.com/sfx/nexavar-side-effects.html

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: Update on Jeff - any one familiar with Taxol chemo?

Hi Bob and Nancy,

I'm sorry to hear that Jeff's tumor has grown. I do not know anything about Taxol other than I think it is also used for breast cancer. Hopefully, it will help Jeff. I read a blog called Wunderglo written by a young woman that has stage 4 colon cancer. I believe her oncologist is also Dr. Lenz and they have become partners in the fight to find a cure for colon cancer. You should check out her blog. It is very interesting and she is one tough cookie. She was on Kathie Lee and Hoda yesterday!! That is awesome that Jeff got to meet Kobe. I'm sure he was so thrilled. I hope Jeff has fun in the bowling tournament. He is quite a guy. I wish all of you the best with everything.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Update on Jeff - any one familiar with Taxol chemo?

Bob and Nancy....So sorry to hear of the latest developments.  Your Jeff is one amazing young man and he has fantastic parents.   
Thought to also include a posting referring to Taxol. 
http://www.cholangiocarcinoma.org/punbb … hp?id=1542
Are you accompanying Jeff to Sacramento?  It is about one hour drive from where I live and I am thinking of watching the game.
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: Update on Jeff - any one familiar with Taxol chemo?

Hi Bob and Nancy,

I am real sorry to hear this latest news about Jeff, much grrrr to that. I have no experiences with Taxol so can't share anything with you really. I did a search here on the site for Taxol and this is what came up -

http://www.cholangiocarcinoma.org/punbb … 2041894995

Hope some of that will be of use and interest to you all.

What a trooper Jeff is and that is great that he was able to get to the Lakers game and meet Kobe, he must have been thrilled with that!

My fingers are crossed for the best possible results from the Taxol treatment and please let us know how that goes. Tons of positive thoughts are heading your way from me.

Hugs to you all,

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: Update on Jeff - any one familiar with Taxol chemo?

I can't add much to all the kudos - - you are amazing parents and Jeff must be such a special person! All I can do is send you all three big hugs and many smiles over meeting Kobe and enjoying life to the fullest. I have been thinking of you all - - thanks for keeping us updated.   Holly

Re: Update on Jeff - any one familiar with Taxol chemo?

Hi Bob and Nancy,

I'm sorry about my delayed response, but you and Jeff are always in my thoughts and prayers. Of course, I continue to be amazed by Jeff's positive spirit through all of this. He is certainly dealing with a myriad of uncomfortable symptoms right now, so his strength and patience are remarkable. I hope that the port placement and biopsy went well, and that he responds well to the new treatment.

Mark