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Happy scan results!
Peter underwent the CT scan this morning and—thanks to the oncologist and the radiology team—we got the results about three hours later. Some of the technical terminology reads as follows: “No evidence for discrete residual or recurrent lesion… no evidence for metastatic disease to the chest.” The upshot, though, is in the oncologist’s subject heading of his e-mail to us (exactly as he wrote it): “CT result – GOOD NEWS.”
We are so happy… relieved to be able to inhale and exhale normally again… and extremely grateful. Thank you Melinda and Victoria for your kind words and encouragement ahead of the scan.
Also– sending out good thoughts for those of you being treated at MD Anderson with hopes that any treatment delays will be minimal or nonexistent. Blessings, Tilly
A brief update: We talked with the oncologist about using Celebrex to help with the HFS. He wasn’t familiar with the studies and he expressed some concern about it causing stomach upset. But he was willing to give us a prescription if the symptoms worsened and we wanted to give it a try. At this point we are going to continue with the lotion and the cool water baths and hope that keeps it all manageable.
As a refresher: my husband has extra-hepatic and/or gallbladder CC, Whipple procedure in April, currently on the SWOG S0809 protocol (12 weeks of Gemzar & Xeloda, then 5-6 weeks Xeloda and radiation). He is just now finishing his final cycle of chemo.
Peter has handled the chemo portion of things really well. He’s had some big time fatigue this final cycle and moderate hand foot syndrome that has limited his activities. On the whole we are feeling very grateful for how this phase has gone.
But now we enter the Scananxiety phase. On Thursday morning he will have his first CT since his pre-chemo scan in June. Both of us are feeling very hopeful and very nervous. In a “normal” world no one would want to deal with five weeks of chemo/radiation but we don’t live in a “normal” world anymore. So we want the scan to be A-OK and, yes please, bring on the chemo radiation. I don’t have to tell anyone here that this stuff is crazy hard!
SpokaneMom’s post on her husband’s successful completion of chemo/radiation was great timing for me — so happy for you and your family! Thanks again to the community for giving me an outlet for my fears. It helps. Blessings, Tilly
Hi Mary- Thanks so much for your reply and helpful suggestions on the shoes. MH is going to hop online and take a look at the options.
A little history on Celebrex/Celecoxib:
Celebrex is a non-steroidal anti-inflammatory called a COX-2 inhibitor. I believe it was put on the market in the late 1990’s and the hope was that it would help people who couldn’t take ibuprofen, naproxen, aspirin, etc. ; that COX-2’s would relieve pain but wouldn’t cause all the GI problems. Celebrex (Pfizer) and Vioxx (Merck) were COX-2 inhibitors that were released at the same time but Vioxx ended up being pulled from the market for safety issues around increased risk for cardiovascular problems (Wikipedia has more info for the curious). There has been a bit of a cloud over Celebrex because of the problems with Vioxx but a large study published about a year ago in NEJM showed that Celebrex in modest doses wasn’t found to be any riskier for hearts than other pain meds.From my PubMed search it doesn’t look like there have been any large scale studies of Celebrex for HFS. Some small studies in China and the two oldest citations on my search were done at MD Anderson. To your point: it does look like it was prescribed both to ward off HFS and to alleviate flare ups once chemo was already underway. I kind of won’t be surprised if the oncologists shrug their collective shoulders if we ask about it. I think MH feels that as long as he can keep it tolerable with the creams, etc. he would just as soon not throw one more chemical into his body. Can’t say I blame him!
Thanks again for your reply, I think if I don’t get any other replies that is a sign that it’s just not being used out there. Also many thanks for all your posts regarding your treatment. Since you went through the same protocol as MH, I have read and re-read a number of your posts and they are very well written and informative. I know every body is different but I’m really grateful for the information and willingness to share. Blessings, Tilly
More citations to articles I discovered in PubMed, apologies if they are duplicated elsewhere. Blessings, Tilly
1: Bréchon M, et al.
Addition of an antiangiogenic therapy, bevacizumab, to gemcitabine plus oxaliplatin improves survival in advanced biliary tract cancers.
Invest New Drugs. 2017 Aug 1. doi: 10.1007/s10637-017-0492-6. [Epub ahead of
print] PubMed PMID: 28762171.
https://www.ncbi.nlm.nih.gov/pubmed/287621712: Wang M, et al.
Serum N-glycans outperform CA19-9 in diagnosis of extrahepatic cholangiocarcinoma.
Electrophoresis. 2017 Jul 28. doi: 10.1002/elps.201700084. [Epub ahead of print]
PubMed PMID: 28752594.
https://www.ncbi.nlm.nih.gov/pubmed/287525943: Duffy AG, Makarova-Rusher OV, Greten TF.
The case for immune-based approaches in biliary tract carcinoma. Hepatology. 2016 Nov;64(5):1785-1791. doi: 10.1002/hep.28635. Epub 2016 Jun 18. Review. PubMed PMID: 27177447; PubMed Central PMCID: PMC5074847. This article will become available for free on 11/1/2017
https://www.ncbi.nlm.nih.gov/pubmed/27177447These are some citations to articles I discovered while searching PubMed, apologies if they are duplicated elsewhere. Blessings, Tilly
1: Shah UA, Nandikolla AG, Rajdev L. Immunotherapeutic Approaches to Biliary
Cancer. Curr Treat Options Oncol. 2017 Jul;18(7):44. doi:
10.1007/s11864-017-0486-9. Review. PubMed PMID: 28660602.
https://www.ncbi.nlm.nih.gov/pubmed/286606022: Jusakul A, et al. Whole-Genome and Epigenomic Landscapes of
Etiologically Distinct Subtypes of Cholangiocarcinoma. Cancer Discov. 2017 Jun
30. pii: CD-17-0368. doi: 10.1158/2159-8290.CD-17-0368. [Epub ahead of print]
PubMed PMID: 28667006.
https://www.ncbi.nlm.nih.gov/pubmed/286670063: Du L, Che Z, Wang-Gillam A. Promising therapeutics of gastrointestinal cancers
in clinical trials. J Gastrointest Oncol. 2017 Jun;8(3):524-533. doi:
10.21037/jgo.2017.01.08. Review. PubMed PMID: 28736639; PubMed Central PMCID:
PMC5506268.
https://www.ncbi.nlm.nih.gov/pubmed/287366394: Zhao DY, Lim KH. Current biologics for treatment of biliary tract cancers. J
Gastrointest Oncol. 2017 Jun;8(3):430-440. doi: 10.21037/jgo.2017.05.04. Review.
PubMed PMID: 28736630; PubMed Central PMCID: PMC5506280.
https://www.ncbi.nlm.nih.gov/pubmed/287366305: Fakhri B, Lim KH. Molecular landscape and sub-classification of
gastrointestinal cancers: a review of literature. J Gastrointest Oncol. 2017
Jun;8(3):379-386. doi: 10.21037/jgo.2016.11.01. Review. PubMed PMID: 28736626;
PubMed Central PMCID: PMC5506283.
https://www.ncbi.nlm.nih.gov/pubmed/28736626Marion- I have been on this site a very short time but I shed tears as I read your post. I have spent many hours searching the discussion board for all kinds of questions. I found your kind, compassionate, and helpful voice in countless threads. I wish strength and healing for you and join the others in prayers and positive thoughts for you and your family. Thank you so much for all you have done and will continue to do for this community, Tilly
Very happy to hear your good news! My husband will be finishing chemo in August and starting radiation (plus Xeloda) in September. I’m nervous about all of this but your story gives me hope. Wishing for more good news for you and your family!
Hi Laura- My husband was diagnosed with distal CCA in March and had a Whipple in mid-April, I know all too well what a scary and disorienting time this must be for your family. I am echoing what the others have written and suggested.
I personally feel it’s important that the hospital and the surgeon have performed many Whipple surgeries. For my husband’s Whipple, the medical center had done 50+ surgeries in 2016 and the surgeon had been the lead for 18. It’s important that your BIL and SIL feel comfortable and confident in the surgeon. Our’s initially met with us for well over an hour, went over what he was seeing on the scans, drew pictures on a white board, and answered every question we could think of. He told us to take a few days to think everything over and emphasized that nothing had to be done immediately. We did not get a second opinion on the surgery (our choice) but second opinions are a good thing and many folks on this discussion board have clearly benefited from getting more input.
I’m glad you found us and I wish you and your family well as things move forward. Blessings, Tilly
Thanks again for all the welcome messages. It does seem like there are two main surgery tracks for those who are able to have surgery — liver resection for intrahepatic CCA and the Whipple for extra hepatic/distal CCA.
It is amazing how the little pleasures of life can seem huge post-diagnosis. Yesterday we went out to lunch at one of our favorite restaurants. I was so grateful that he had a good appetite going into his second week of chemo and we had a lovely time. So far handling chemo OK other than some hives that popped up on his knees. Blessings and best to all! Tilly
Hello Ladies- Thank you all for your warm welcome. Catherine, in answer to your question: I am not a clinician but I am a medical librarian. I’ve worked in both academic and hospital medical libraries since the late 1980’s.
When my husband was first diagnosed I couldn’t bear to do any research once I looked at the five year survival rates for this cancer. Even though I could think of a number of logical reasons not to let the percentages rule Peter’s fate, I was terrified. One of my best friends said to me, “Don’t play the numbers game. How do you know he won’t be in that percentage that survives beyond five years?” It can be very hard to kick fear out of the driver’s seat. Some days are better than others but at some point I decided to put my librarian hat back on my head and start searching. I have colleagues who are amazing super searchers and I wouldn’t put myself in that category but I keep plunking away at it. I’m hoping I can contribute in some way to the knowledge base of this board. All the best, Tilly
