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I saw Dr Pawlik at Johns Hopkins today and asked for his opinion about just going in and cutting out my new small 1.2 x 1.2 x 0.2 tumor.
He was in agreement with my surgeon at the Mayo clinic that I should first try chemotherapy to see if the existing tumor will respond but more importantly to see if more tumors appear or not over the next 3 months or so. If I respond well to chemotherapy AND there isn’t more metastatic spread then both he and my Mayo surgeon are agreeable to respecting this new tumor.
I’m not surprised by his recommendation. As he said, surgery wouldn’t be the first card out of his deck for me given the circumstances. He did indicate that it is unfortunate and not a good sign that the cholangiocarcinoma recurred as quickly after my last surgery as it did.
The new tumor isn’t impacting my health so it’s not urgent to get it out.
I have a PET scan in Richmond on Thursday to check for additional tumors and will meet with local oncologists next week to start the ball rolling on chemotherapy. I will have the chemotherapy locally.
If this route proves ineffective then I can enroll in clinical trials for more innovative but risky treatments.
My understanding is that it is possible however, you’d need to take enzymes and insulin for the rest of your life.pfox2100 wrote:Can they remove an entire pancreas? Can one live without one? Sorry, I feel like these are dumb questions but these questions came to my mind say if one had pancreatic cancer or mets in their pancreas, can the whole thing come out? I was under the impression all of a pancreas could not be removed.
I’d read that to mean you’re on three weeks and off the next three – rinse & repeat. Did you look into it more or go down this path Duke?DukeNukem wrote:The FoundationOne report came back with possible several clinical trials. Only one is convenient to me geographically. That one (NCT02042443) has an arm that involves trametinib but has other arms that do not. Obviously I am only interested in the one arm.
“Patients receive trametinib PO QD on days 1-21. Courses repeat every 21 days in the absence of disease progression or unacceptable toxicity.” Does this mean I get 21 days off between, or, the dosages vary and I take a pill a day every day until whenever?
Do I have to be administered the trametinib at the test clinic? It is three hours away. It would be much more convenient to have it administered locally. Staying in a hotel for three weeks just to take one pill a day seems a bit ridiculous. I could see visits on days 1, 7, 14, and 21, maybe.
Since only one of the arms would seem to work for me, could I have my onc prescribe trametinib under a “hardship exception”?
:: bump ::
Not a single response? I’m interested too as I expect to be going this route…
That’s great to know Lainy – thank you!
The Whipple procedure involves removal of part of the stomach, gall bladder (mine is already gone), part or all of the pancreas, as well as the common bile duct.
There’s a good set of videos and other information at http://www.whipplewarriors.org/the-whipple
Lots of risk of leaks and infection as well as digestive and insulin related issues post-surgery with that procedure. They rank the complexity right up there with a heart transplant.
Yep – your thoughts echo mine… why knock me down with chemo first? A brief call with my soon to be local Oncologist made me start to agree with them.
If I were to need a Whipple, that’s major, life-altering stuff. So why subject myself to that if the cancer is just going to keep spreading? Recovery from that surgery would take months and I’d be unable to have chemo during that time, so then I’d be even worse off.
Best case scenario now which I am hoping for is:
1) The PET shows no other spread
2) I can find a surgical oncologist willing to cut out the new little tumor WITHOUT a Whipple
3) I do adjuvant chemo and keep it from coming back
The more-likely scenario is:
1) There may be spread elsewhere
2) I do chemo for a while
3) I do my best to get into a trial, perhaps joining Melinda’s success with NIH NCT01174121.
It’s no fun being back on the roller coaster…!
Hi Porter – basically, yes. Mayo is assuming the worst.
I’m starting to see the logic. It makes sense to try Gem/Cis and see if that prevents growth and spread for 2-3 months, then if it has, look into resection. Based on where this new tumor is they think it might require a Whipple to remove it and that’s not a minor procedure…
Thanks for the note!
Thanks for note – I’ll be driving up Monday morning. The appointment isn’t until Noon on Monday so I’ll be fine, even with traffic. I won’t be staying over this time but will keep your hotel tip handy!
I appreciate the thoughts and tips very much!
-Mattmiddlesister1 wrote:Matt. Not sure if you’re driving up Sunday or Monday. Traffic can be bad around dc and baltimore. I know the holiday inn near univ of md offers low rates(98) for patients. If you’re staying in Baltimore I would check with hopkins on hotel partnerships.
Thinking of you
Here’s a little update on my journey.
I’ve got an appointment with Dr. Pawlick at Hopkins next Monday to get his opinion on resecting the new tumor.
I’m being scheduled for a PET scan here at VCU/MCV next week to determine if there are other tumors or just the one.
Mayo will consider resection, but only after I go on chemo for 2-3 months first.
The only evidence of spread is this new small tumor, however, I have only had an abdominal scan recently, no full chest or elsewhere.DukeNukem wrote:Is there any evidence from a CT scan that supports the spread of cancer?
There are people who have had multiple resections and are doing fine. I’ve never been satisfied with, “well, it might make things worse” argument. But I can’t find an oncologist either locally or at Mayo who agrees with me. Maybe it’s a good thing I went into nuclear engineering (reactors are easy to understand and control) instead of medicine. Besides, I hate the sight of blood – just like Dr. Martin.
Mayo’s logic for not operating to take out the new (small?) 1.2cm x 1.2cm x 0.2cm tumor is that the cancer must have spread so I should start a systemic treatment ASAP. Taking time to do surgery and recover would delay the chemo and I’d end up right back where I started.
I don’t like that line of thought.
Maybe it hasn’t spread, maybe it won’t if they remove this one bit, who can know…
I’ve got appointments with a GI doc, oncologist, and surgical oncologist locally in Richmond, VA at the VCU/MCV Massey Cancer center in the next two weeks.
I’m also going to reach out to Dr. Pawlick at Hopkins for another opinion on the surgical side.
Make sense? What else can/should I be doing while I feel perfectly normal?
Thanks for all the info and support so far – keep it coming please…!
Does anyone have any tips for finding a doctor/surgeon who might be willing to resect my new tumor?
I know everyone responds somewhat differently to the Gem/Cis treatment, but I’d love to hear about what to expect and any tips/tricks to make the process easier.
Everything from getting a port to managing nausea, fatigue, and nutrition are all concerning me.
I need to try to work “full time” while on chemo – is that realistic? I’m an Information Technology Manager, so no real physical exertion is required but I do need to have my wits about me. I’m expecting to take a full day off work for the actual infusions but otherwise hoping to generally be able to make it into the office.
Thank you all for your feedback and support!
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?