It’s back after everyone thought I was ‘cured’ =(

Best of luck, our prayers are with you. Hope your current treatments are beneficial…

Hi,Debrah

debrah wrote:

PCL1029….heck of a name I hope you are feeling well between treatment plans. I have no problem sharing what info I can REMEMBER..hahaha Currently I am receiving injection OXALPLATIN0.5mg and injection of GEMCITABINE HCL 200 and ? injection FOSAPREPITANT? in my chemo cocktail every other week. Originally I was on xeloda for 12 months and radiation for 6 weeks. Hope this helps…my cc was in my bile duct and discovered basically by accident. I was a very lucky woman to have the surgeon Dr. Roger Jenkins as he is the most brilliant and kindest doctor I have ever met. OK I am babbling, sorry. Thanks for sharing and I pray for courage and healing for all of us patient or caretakers!

I completely missing this message from you at least for >2months. I apologized for this; the reason I notice this message today is because of your lastest message on this board a day or 2 ago and as always, before I reply to anyone whose question is medical or pharmaceutical in nature; rather than others;I will do an automatic review of the entire messages entry by the person . so next time if you see I didnot unswer your specific question ;please email it to me.
In fact,I prefer you to email me like others; doing in this way will protect your privacy in case our discussion going into deeper and more detailsin nature;and for sure I will not missing any of your question if you use the email option.
the following is your most recent message and I will start here instead.

“I am wondering what chemo cocktail will come next. I just had my MRI about 2 weeks ago to see what my lesions from my recurrence of cc were doing….seems after 6 months of oxaliplatin and gemcitabine they continue to grow roll My oncologist is on vacation and all I know is that the team will meet and decide what chemo we should do next. Any ideas what my options are? What has worked for others and side effects etc? I was also wondering if the side effects from my recent chemo (numbness and tingling) in my fingers and feet will ever go away? Although it was said to me that I have 12 to 18 months to live ,6 months ago I don’t believe it for a minute smile I have way to much left to live for… wink Best wishes to all our family and friends here on the cc board. <> deb”

1.your neuropathy may be improve upon discontinuation of oxilaplatin . Within 3-4 month after stopping oxaliplatin in treatment.82% of patients experienced a regression of symptoms.-from clincial pharmacology data.

2. after reviewing your history;I think your have extrahepatic CCA unless it is originated in the bile ducts in the liver.(I regard what you mean from” the bile duct “when you mentioned about your CCA was referring to either the common bile duct or the right or left branch bile ducts that enters the liver.)
if this is the case and depending WHAT you mean and WHO said to you “you only have 12 to18 month to live AFTER 4 years of successful treatment.”
There are still a lot of options besides chemo. Talk to your oncology radiologist like your had mentioned before, Dr. Garren or their team for options if yours is extrahepatic CCA;if yours is intrahepatic CCA ask them also.
I believe the radiation oncology will be the one technology that will prolong and increase the quality of life of the CCA patients and FASTER in time in treatment terms to let us continue our earthly journey as compare to targeted therapy and the chemo. and the side effects are comparable to chemo and targeted agents.
3. there are always options on the chemo frontier and clinical trials are plenty outside the traditional regimens; the problem is whether you would like to be one of the brave soul who wants to try them on one by one and have the untold side effects until it happens.
In my opinion about targeted therapy,it will work well in the first part of the treatment,but drug resistance will catch pretty fast too; so it is more or less like playing musical chairs until the options runs out; not to mention that fatique is the major side effect in addition to others.

Last but not least, the above is only my current view point on CCA and can change at any time if i find new info. on this subjects as well as talking to other experts in this field. I will keep all of you inform.
As you may know already, I am not a doctor,I am only a patient of CCA for 32months and went thru more than 2 resections in just 3 months even though I had the best available environment to help myself( I can say this without any doubt) ; What I am saying is that(I save my own life or a lot of trouble down the road if I was not keeping up of what happened to me even after the best care that I can have.) ,

In short,trust yourself more than anyone else;keeping up your knowledge on CCA;trust yourself instinct rather than putting your trust on something or someone you were familiar with long time ago. It is your life and not the other way around.Ask questions about the procedure,the protocol and the outlook the doctors give to you. explore other alternatives; FOUR years is a lot of time for other effective treatments to come out in addition to chemo and targeted therapy.
I always encourage CCA patients not to stand still and keep searching for new treatment plans and hope for the best. and your are the lucky few that can survive this long on CCA.
please email me if you want to discuss more about your case(for protection of your privacy as well as sensitive and personal detail discussion that it may come up..)
God bless.

Deb, its been a while since I’ve posted anything too. I was diagnosed with CC 8/2007, had surgery 12/2007, was given a year to live. I went through chemo and radiation for six months. After that, I visited my oncologist every three months and watched my tumor marker rise to 4000 by the end of 2010. So I had two good years to rebuild. I started chemo, gemcitabine and oxaliplatin 12/2010. By 7/2011, my tumor marker dropped to 130 and I asked for a break. My tumor marker is about 300 now and I went for a cat scan today. I don’t have any false hopes. Just time for my next round of chemo. I am 68 years old, and I like to blame confusion, inability to stay focused, loss of memory, fatigue and so much more on old age. Chemo treatments may have helped it along. The cancer has never caused me any pain, and I thank God everyday for that. Its been four years for me and I don’t plan on packing my bags anytime soon. My attitude is that my brain hasn’t told my body that it has cancer. So I live my life as though I don’t have cancer. Good luck and hang in there.

Deb: Don’t loose hope ever. We are all here for you. You and your family are in my prayers. Doctors don’t have all the answers, they don’t know, this disease is so unpredictable, every individual is different. Stay strong above all, this will help you and your children. Sending hugs and prayers your way…

Deb, I have used the chemo brain excuse for over two years! I use it all the time … it’s really very useful!! Don’t consider it a flaw at all. Also, I would be inclined to reject the 12 month prediction and plan to fight like a cornered rat. This is certainly a pernicious disease, but there are hopefully other medical weapons not yet used. I have a good friend that I continually struggle to find new, useful directions for treatment. The people here are great and will continue to support you in any direction you choose. Good luck in finding a new treatment plan.

Where are you being treated?