My mom’s scan result
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Lainy,
I guess you and I posted at the same time — great minds and what not! Thank you so much for your kind words. I don’t feel alone thanks to you all. I am so so grateful.
Caroline
Thank you Randi and Darla for your comforting words.
Percy, thank you so much for your advice. My husband and I immediately started looking for clinical trials, and here is what we found, if anyone else might be interested:
http://clinicaltrials.gov/ct2/results?term=cholangiocarcinoma&recr=Open&no_unk=Y&pg=1These are active and open trials for cholangiocarcinoma. The clinical trials for photodynamic therapy seems especially encouraging and hopeful. I contacted a few of them and will keep you posted.
I also spoke to my mom’s medical ONC, Dr. Latif, and felt much better afterward about the next step, whatever it may be.
I feel so blessed to have the support of this board. Thank you, thank you. Happy New Year to you all.
Caroline
Dear Caroline, I am so sorry that you had to receive that phone call! Talk about a wild ride. Yes, I agree with the other on taking a deep breath. In fact I would take a couple of days and just do something entirely different. 2 days won’t hurt anyone and you may be able to deal better after the little break. I always say too that when a game plan is finally set in motion the fright turns to fight and that has been proven on this site over and over. We are all right beside you, you are not alone in this fight.
Caroline,
Good advice from Percy and I agree with Randi, it’s time to just breath and take it one day at a time.
Love & Hugs,
DarlaHi,
I believe you should get a 2nd opinion on medical oncology at Mass General or John Hopkins .
I believe if mets in liver, intestine and lymph node, you need systemic chemotherapy or targeted therapy. The goal to seek 2nd opinion at Mass General is that there are a couple clinical trials that the patient can have over there if she fulfills the clinical trial requirement.
NCCN recommended clinical trials for unresectable patient of advanced CCA.Since all chemotherapies are “palliative” in nature; If I were in your situation, I will not trade for that extra 5-10% margin to be on FOLFIRIN . The toxicity is not acceptable for me to get a couple more months in return for the less quality of life. But everyone is different when they HAVE TO face these difficult chemotherapy choices. It is not easy for sure. That is why whenever possible, consider clinical trials is not a bad idea.
God bless.
I am so sorry you got that dreadful phonecall. I don’t know much about the difference between those two chemo regimes, but I am sure others will come on who know more. Be patient, because it’s New Year’s Eve people may be slow in responding.
All I can say is take a deep breath. You’ll soon have a plan in place and it will feel better.
Hugs,
-Randi-I feel sick to my stomach right now.
Dr. Fong just called to say that he got the scan results from the radiologist, and what he said yesterday wasn’t true.
Not only did the tumor get bigger but there are now spots on her intestine and liver & her lymph nodes are also bigger.
Radiation is now out of the question and she may never be eligible for surgery. Dr. Fong kept saying, “It’s not good news.”
He is now recommending FOLFIRI chemo for two months. I asked him about the success rate of that, and he said 15-20% as opposed to about 30% for gem/cis.
I feel so shaken and lost. Do you have any advice for us? We’re now thinking of getting a second opinion. But what will that do to her tumor if it’s left untreated?
Caroline
Hi. I don’t remember meeting an Abraham Wu. So I can’t help you. I did have a number of embolizations, so he might have met me! 2 of them I did not meet the dr. first. I think I met Dr. Goodman and Dr. Brown, although Brown MIGHT be from somewhere else.
Good luck on the 10th and TRY not to stress about it!! Just remember we CAN live with stable.Thank you, Lainy, Kris, and Marion!
The earliest appointment we could get with Dr. Goodman was 1/23, so Dr. Fong thought we should try to get an earlier appointment with someone else. And that someone else is Dr. Abraham Wu, whom my mom will be seeing on 1/10. Kris, do you know anything about him?
We have a follow-up appointment and scan with Dr. Fong in March, and I’ll be sure to report back on that.
Marion, one of the wisest things (though there are too many to count) I heard on this board is to think of cc as a chronic disease that one can manage to live with. I am going to try to share that wisdom with my parents (in a gentle way) before leaving New Jersey in a week or two.
Thanks again!
CarolineI agree with the above and like to compare this cancer with that of a chronic disease – one step at a time.
Glad to hear that your anxiety has decreased. Wishing for continuous success with the treatments.Hugs,
MarionStable is a good word! Yes, shrinkage is better, but stable is good. Dr. Fong is good, and careful. I believe in him. And Dr. Goodman is very easy to talk to, also. She will walk you through the next step and answer questions.
Enjoy the new year and new hope!Dear Caroline, while you didn’t hear shrinkage, this is certainly not a bad report. I am so glad you went to Dr. Fong and he gave you good advice. Dad will realize as you go along that CC requires massive patience. Stable is one of our favorite words. Let’s look at this a diff way. Dr. Fong did not say NEVER for surgery and that in itself is good news. I always feel that having this good direction helps turn the fright in to fight. Best of luck!
My mom just had her appointment with Dr. Fong, her surgical oncologist at Sloan-Kettering, after getting a ct scan. The good news is that her tumor has not grown and the right side of her liver is looking better than it did prior to chemo. He also didn’t see the cancer anywhere else. The not so good news is that Dr. Fong still doesn’t think that a surgery is a good option at this point.
So, he’s recommending that she get radiation therapy for 2.5 weeks with Dr. Karen Goodman. He didn’t think that switching to a medical oncologist whose specialty is cc is necessary.
My dad was really disappointed with the news at first but I think he’s coming around as we sit here waiting to hear about her next appt. Myself, I’m grateful that the tumor didn’t grow. Shrinkage would have been the best but I’ll also take stable!
Thank you to all of you who helped with my scanxiety. Hope you all have a very happy new year!
Caroline
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