mattreidy
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I’m in touch with NIH and have agreement from my Mayo team to refer me to the NCT01174121 trial.
What drives me crazy is that I’ve never had chemo and all of the trials, including this one, seem to have a requirement that “All patients must be refractory to approved standard systemic therapy.” which for CCA basically means try Gem/Cis first. We know that doesn’t work for all and for those that is does work, it’s temporary, so why force us to go that route first?
I’m afraid I have some bad news to share. My check up last week (Jan 2015) at Mayo did not go well.
My CA 19-9 is back up to 360. It was over 400 prior to resection and had been hovering around 10 post-resection until now. All other blood tests were completely normal.
They found a suspect 1.5cm fluid-filled spot near my pancreas, performed an EUS and FNA and the cytology was positive for cancer. The assumption is that this is the CCA back again vs a new primary cancer but I will know for certain later this week. The tumor is in the abdominal cavity vs in the pancreas and as of now doesn’t appear to be impacting my health in any way. The tumor was not present in my previous MRI from June 2014.
My worst fear, realized, I’m sad to say. I expected this day to come, but was hoping it wouldn’t be quite so soon.
Mayo is unwilling to even consider resecting the new tumor, believing that the cancer has metastasized and there is no benefit to doing so. I’m finding that hard to swallow.
Mayo’s only recommendation was the standard Gem/Cis chemo treatment which I know is not curative and I’m afraid may not even have any tangible benefits in this situation. They did mention a few clinical trials but it seems that most require “failure” along the standard Gem/Cis treatment first.
I’ve asked Mayo to contact FoundationOne to look into genetic testing and am seeking a local oncologist to potentially start chemo. I’m also hoping to get a full scan – Mayo only scanned my abdomen so I don’t know if things have popped up elsewhere such as in my lungs.
Question: Is it unheard of to resect something like this, assuming it’s possible, even though it may be the result of metastasis? On the surface, it seems like an “easy” laparoscopic procedure…
Welcome Helen. I’m sorry that you’re going through this but glad that you found this site and forum. It’s a great source of information and support. I too had a resection for perihilar CC. That was in January 2014. My margins were clear and there was no metastasis so I personally chose not to pursue adjuvant chemo.
Feel free to reach out with any questions on recovery etc. Wishing you a speedy recovery.
-Matt
I went to the Mayo Clinic in Rochester, MN for testing and in hope of having a liver transplant for my perihilar CC in Dec 2013. I saw Dr. Greg Gores and his fellow Dr. Sumera Rizvi. I was luck enough to be able to have a resection instead of a transplant. My surgeon at Mayo was Dr. David Nagourney. I choose not to pursue adjuvant chemotherapy because I wasn’t convinced the benefits outweighed the risks so I have no oncologist. I continue to travel from VA to MN regularly for “surveillance”.
Iowagirl wrote:{snip} I must ask about the CA 19-9. That has never been drawn again since before diagnosis that one time. It was negative then…so maybe that’s why they don’t rerun it. But, I figure if the CC comes back…it’s possible that a new location might run up the CA 19-9??????? Dunno! As I said…I need to ask. In fact, all of my blood counts were in the normal range before diagnosis….so the blood labs really only have shown issues that the chemo caused. Are you getting the CA 19-9….and was it elevated when you were diagnosed? I{snip}Julie, my CA 19-9 was 453 upon diagnosis, about 2 weeks prior to surgery. They check it routinely now. It was 11 one time and 10 the next. Under 55 is “normal”.
Hi Everybody.
This Saturday, 1/17/15, will be the one year anniversary of my surgical resection with clear margins.
I’ve made an appointment with my team at the Mayo Clinic in Rochester, MN for bloodwork and an MRI to look for recurrence and/or metastasis.
This will be my fourth follow-up visit/scan and the scanxiety is going up every day now… I could use some encouragement
Mentally/emotionally I feel great for about a month or two after a clean scan and then gradually start worrying about the next scan until it gets pretty consuming. I know it’s pretty normal but I can’t help thinking about if/when the CC comes back.
I tell people that this past year, including CC diagnosis, surgery, and recovery, has been both the worst and the best year of my life. I’ve gained a new perspective on life and made some related changes as a result.
I continue to visit this forum primarily to keep tabs on some of you, my friends, and your journeys. I also try to focus on the long term survivor stories and hope to be contributing to them myself over the years. It is SO SO very helpful to hear from the people who have survived CC for years.
If anyone’s going to be in Rochester, MN the week of 1/26/15 and would care to meet, I’d love it – let me know!
-Matt
I’m sorry that you had to find us but glad you have, given the circumstances. This forum is a great place for information and support.
I was diagnosed with Perihilar CCA the week before Christmas last year (Dec 2013) at age 47.
Especially given your location in MN, I highly recommend the Mayo Clinic – I travelled there from VA for a second opinion and, ultimately, curative surgery. The team is top notch and very experienced with CCA.
Best of luck to you and keep us posted.
-Matt
Julie,
We’re about next to each other in similar boats…
My diagnosis was late Dec 2013 with surgery in Jan 2014. I’ve ended up having CT scans about every 3 to 4 months since for one reason or another. I’m due for another in Jan 2015 and would prefer an MRI if that’s sufficient. I’ve been “radiated” so much in the past year that I’ve refused my routine dental x-rays at my last to exams. ha…
I find my scannxiety comes back after about 3 months, but a little lexapro helps a lot.
Congrats on your latest results. May there be MANY more like them!
xoxo
-Matt
Hello all,
It’s been about 10 months since my diagnosis and 9 months since my surgery. I had some blood work done last week and am relieved and happy to say that everything remains normal, including CA 19-9. My next check up with scans and blood work will be in January 2015.
I offer my good news as a source of hope for others with similar experiences.
xo
-Matt
Welcome and congratulations on the successful resection!
I also had a successful resection this past January. Do you mind sharing more about your particulars? I assume you had perihilar CC? Did you have clear margins? Any spread to lymph nodes or elsewhere?
Good luck with the adjuvant chemo – I choose not to go that route myself.
It’s a bummer that searching cancercare.org doesn’t return *any* results for bile duct cancer or cholangiocarcinoma…
Maybe someone at cholangiocarcinoma.org could ask them to add it?
I highly recommended the Mayo Clinic in Rochester Minnesota USA. Drs Greg Gores and David Nagourney saved my life with surgical resection of my perihilar CC in January 2014. Mayo is well accustomed to serving international patients as well. See http://www.mayoclinic.org/patient-visitor-guide/international
Hi Dianne,
I’m just now reading your post – I’m so sorry to have missed it!
Yes, amazing doctors and amazing facility. I’m not going anywhere else for medical care from now on even tho it’s a long haul from VA to MN!
The only oncologists I saw were while in my hospital room recovering from surgery. I can’t remember their names but know it wasn’t Dr. Alberts.
I love hearing of others with similar experiences that are still around to share! Best of luck to you!!
-Matt
Dianne.N wrote:Hi Matt….I wanted to reply to your post because we sound like we’ve had very similar paths, with the same doctors!, and I’m 4 1/2 years post resection! My symptoms started right after Thanksgiving dinner in 2009 with severe indigestion. Then I got the itching and finally an MD friend of mine got me to my local doctor who did an ultrasound and MRI and recommended a major cancer center. I went to Mayo in Rochester in Dec. 2009 and saw Dr. Gores and then Dr. Nagorney…both amazing doctors who saved my life. My surgery was Jan. 5 and I chose not to do any adjuvant therapy. I had a few bumps in the road after the surgery but am pretty much fine now…except that the docs kept scratching their heads regarding some enlarging mesenteric and retroperitoneal lymph nodes. I finally had a biopsy of a mesenteric lymph node that revealed I have follicular lymphoma which is much more treatable than CC. I see an oncologist this afternoon to figure out treatment for the F.L. Anyway, I’m wondering who your oncologist is at Mayo. I had Dr. Alberts initially but for some reason that I don’t understand he has not been assigned to me the last two times I was at Mayo. (Oh, I take Metamucil every day for diarrhea issues – it helps.) I know this must be very difficult for you with younger kids at home, but it sounds like you have a great attitude. We learn to enjoy and appreciate each and every day!
