anrena18
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Thank you Melinda.
Quick update. A genetic test was done on my mom’s tumor and results suggested that the original source is not from the bile duct but either skin or head/neck area… We saw an ENT doctor this week and he said he doubts it is from this area since my mom would probably have an obvious cancer in the head/neck area as well.. so now more tests on my mom. My mom has an enlarged thyroid so biopsy on thyroid and another PET scan. Her first PET was in July and nothing “lit” up in that area… its been almost 6 months post-resection for my mom.. no chemo plan yet until we figure out if this cancer had originated elsewhere… don’t know what that means prognosis -wise. Oncologist wants to continue with 6 months of Gemzar alone, if cancer is indeed from the bile duct, followed by radiation..
My mom is stil very much on the fence about starting chemo/radiation. No doctor seems to give us a definite answer as to what is the BEST option. I wonder if anybody has every done radiation post-resection without chemotherapy. My mom seems very against the chemo portion. She’s just starting to feel like her old self and doesn’t want chemo to ruin her progress.Happy holidays everyone.
Love, serena
Hi all,
I thought if give a quick update on my mom in case anyone was curious. So at the suggestion of one if the other board members, I asked our oncologist to present my moms case to the tumor board. They believe that because squamous cell cc is so rare, a molecular/genetic testing should be done on the tumor to get a better idea of where exactly the primary cancer could potentially be (if it’s not bile duct). The results came bsck to suggest that the primary site might be skin or head and neck cancer. Very odd. Now mom is being referred to ENT doc. I don’t know if this means moms prognosis is better or worse? I feel frustrated because we still don’t know what’s going on and chemo will be delayed until we rule out any other primary site of cancer. Mom already did full body pet scans too and didn’t show anything else suspicious. Very weird.
Ill update again once we find out more. Thanks all.Happy thanksgiving
Serena
Duke,
You are always very helpful and responsive on this forum. I hope that you may have some questions answers. stay positive, stay strong.
serena
Hey Patty, thanks for your response. I’m glad to hear its a slow growing type! And you’re right – everyday should be a celebration
Take care,
Serena
Hello Melinda,
I did not know that there was a tumor board involved. I was under the impression that out oncologist was acting alone! And you’re absolutely right- Dr. selby and his team are one of the very best and I am happy that my mom is being taken care of there. I just thought if my mom was able to communicate better with her oncologist it would put her more at ease about proceeding with chemo. Thank you for enlightening me- I hope I didn’t insult my moms doctors when I asked about seeking second opinions! I definitely want ALL of my moms care at One facilities, just thought it would be helpful to seek second opinion because of the rarity behind research for adjuvant chemo. I’ve been translating so far for my mom. We did use a translator once via phone but I felt it was too impersonal and I really want my mom to established a close rapport with her oncologist. Thank you again for bring to light the fact that there is most likely a tumor board discussing my moms case. It does bring peace of mind knowing my moms health is on the care of not one, but a group of intelligent and caring people.
serena
Thanks Gavin and Duke. You’re right – I’ve decided not to even pay much attention to stats anymore.
“Maintain a good attitude, hold your head high, trust in God, and live the best life you can.” I like that advice Duke. I’ll be sure to share that piece with my mom.
Take care,
Serena
Lorna, Thanks for sharing his experience with Gem. I’m sorry about your boyfriend’s recurrence, but like Marion said, I’m glad to hear a plan is set. How is he doing now? Hopefully you guys can get the genetic testing done.
Genevieve, thank you for also sharing what your husband has gone through. I’m sorry that he had another recurrence. How is he recovering from his resection? And how is his treatment with Xeloda going?
Duke, any luck with your results from Foundation One? I admire your fortitude and positive attitude. Good to hear you already have a solid action plan as to how to proceed. I hope you continue to make progress with your current gem/cis treatment, without adding more stress to your kidney and liver.
Thank you all for giving me some insight. On our next meeting with oncologist, I’ll be sure to mention Foundation One and see where we can go with that.
Serena
Thank you Melinda, Pat, Mary Beth, Pfox2100, and Julie T again for sharing your experiences and giving us insight as to which direction to go.
Mary Beth, I’m so sorry to hear your husband had to go through that. How is he doing now? Are there signs of progress with his chemo? Sending positive thoughts and prayers to your family.
Pat and Julie T, thanks for your advice! Ditto on what Pat said about being your own advocate! After spending a month in the hospital with my mom, I learned that sometimes its best to speak up even if it makes others feel uncomfortable!
Pfox2100, I hear ya on having that piece of mind. I’m happy to hear you are done with chemo though! I hope you continue to feel better each and everyday. I bet you’ll be back to your old self soon
Melinda, yay for being done early!!
I think I’ll go ahead and ask our primary doc to refer us to Dr. Chung at City of Hope. Do you know if dr. Chung speaks Chinese?Thank you guys again. We really appreciate everyone sharing what they’ve gone through.
Dr. Selby our surgeon is referring us to a radiation oncologist as well.. i’m not sure why. It looks like he also wants my mom to wait another month before we do chemo (if mom decides to do it).Serena
Melinda and Pat,
Thank you for sharing your experiences. I know it’s very personal decision and I’m hoping with a second opinion, my mom will have more direction as to what to decide.My mom was treated at USC by Dr. selby. Amazing surgeon. We were just referred to an oncologist Dr. Martel at uSC as well.
Was your husband at City of Hope? Would you mind me asking which oncologist he is seeing? Thank you.
LornaDoone wrote:Does anyone have experience with gemcitabine alone? Oncologist suggested both gemcitabine and cepcitabine post liver resection to kill off any micro cells that may be lingering. If no cancer exists wouldnt gem be enough to kill off any cells? I appreciate any input.Hi LornaDoone,
I’m glad you asked this question, as it is what my mom’s oncologist recommended gemcitbine alone for 6 months, once a week infusion as adjuvant chemo post resection. The oncologist said gem alone since we are cleaning up microscopic cells. But i’m learning on this site that many people post-resection actually receive duo chemo regimen. I’m curious to hear if anyone else has done gem alone and how did they feel.
LornaDoone, what did you end up deciding or finding out?
Thank you
SerenaThank you Gavin for the info. Unfortunately the available literature does not say much about squamous cell. I was hoping that maybe this histology type would be more favorable..
My mom is doing better. After last week’s hospitalization for infection for remaining abcess from bile leak, my mom has been fairly well recovering at home. Her appetite is getting better. She even requested fried chicken wings! We just had our first oncologist meeting. My mom wants a second opinion. I think she is still in denial about all this. I knew that docs would want my mom to do chemo after resection. My mom almost seemed surprised they recommended it. I know its a personal decision whether to do the adjuvant chemo or not, so I don’t want to pressure her or guilt her into doing it. Sigh. I’ve been doing a lot of reading on this site; doing searches; and reading personal experiences.. sometimes I get discouraged when I read about statistics and prognosis etc. but then I find amazing stories from people on this site and it gives me hope again.
Thanks for asking about my mom.
Serena
