Topic: New Member - Husband was diagnosed July 2011

My husband (age 39) was diagnosed with CC in his liver July of last year, in August they went in to do a resection surgery and pulled out after finding that the cancer had spread to his abdominal wall. 

In Sept '11 he started chemo treatments, he started on a combo of Gemcitabin & Oxaliplatin, after being on that for 4 months with no change (no worse, but no better either).  He then did a chemo embolization which was successful in destroying a lot of the tumor.  Next was a combo of 5FU and Cisplatin, this combo was successful at further shrinking the tumor and lowering the tumor marker, however the side effects were too much to bear (peripheral neropathy making it hard to walk and type - which is essential to his job).  So he was taken off the Cisplatin and left on the 5FU unfortunately after being on just the 5FU there was small growth in the cancer (milimeters) 

On to Ironotecan which he started on two months ago.  This is a particularly harsh chemo, and one he wanted to discontinue after his next PET scan (scheduled for Tuesday 10/23) however, after going in for a CT scan to check the abscess in his liver that was caused by the embolization they saw that the tumor is actively growing now (centimeters now) and new spots are showing up.  The Dr also said we are getting to the end of our options. 

We also just got back biopsy results that showed he is not eligible for any drug trails.

The Dr said we could try some new bio drugs but they are $10k a pill and insurance is unlikely to pay for them (though we haven't had any problems with insurance paying for anything yet). 

Does anyone had any experience with these new bio drugs, or have any suggestions/ideas to talk to our Dr about?

Re: New Member - Husband was diagnosed July 2011

Dear sjreader, welcome to our elite and remarkable club that no  one really wants to join. Your husband has really run the track and his ONC sounds pretty aggressive which is great. We always recommend 2nd and even 3rd opinions which help for peace of mind as well. I can't be of help with chemo as my husband never had it, he had radiation and CYber Knife but I know others will come along and have some suggestions for you. 10K a pill, I cannot even fathom!  Good luck with the next Scan and please keep us posted 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 - Husband was diagnosed July 2011

Hi,
If I were you, I will get a 2nd opinion by another oncologist. I know drugs are expensive nowadays, but 10k a pill will be too high even including mark up by drug store,  hospital,or by doctors' office if they will  dispense to patient. .BTW do you know the name of that drug that will cost 10k? The way that you mentioned about your doctor really will  make me  twice likely to have a second opinion if I were you.
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: New Member - Husband was diagnosed July 2011

Talked with our other ONC dr (we have two, one closer to home and one that's an hour away).  He was much more optimistic the the other Dr and we left that visit feeling as if there is still hope.  We decided to go back on the Oxaliplatin & 5FU again and deal with nueropathy for now and then possibly switch to a drug trial where they are testing AMG 386 (a bio drug) with Paclitaxel (a chemo drug).  Has anyone else done this study???

This goes to show once again that 2nd opinions are vital!  After talking with the first dr. we left feeling like we were out of options, but now we know we there are still options to try (or re-try) and we have hope again and we'll continue to fight.

Re: New Member - Husband was diagnosed July 2011

Don't know about the trial but a big YIPPE YEA for that 2nd opinion. Can't ask for a better outcome than renewed HOPE. I am very happy about this and wish you a ton of good luck. I know you will keep us updated on hubby's progress! Whew! You made my day.

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 - Husband was diagnosed July 2011

Hi,
Yes, 2nd opinions counts; and yes,there are still many chemotherapy and targeted agents that we can try until otherwise. You did a good job on not giving up.
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: New Member - Husband was diagnosed July 2011

Good job.  I applaud your persistence - unless you are ready to do so - never, never, give up.  In re: to your question:  we don't have any reports on the above mentioned clinical trial however; I thought to enclose a link for your information:
http://www.clinicaltrials.gov/ct2/resul … rch=Search
Best of luck,
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