My Introduction
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Tagged: Ascending Cholangitis, Cured, Hope, immunotherapy, Keytruda, NED, SIBO
- This topic has 407 replies, 40 voices, and was last updated 2 years, 4 months ago by Jjet65.
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February 19, 2015 at 6:12 am #80284marionsModerator
Matt…..Imaging relationship to disease interpretation is a subject often discussed. The overall consensus appears to be that imaging results are only as good as the physician reading the scans. Basically, if the physician knows what to look for he/she will be able to identify the results.
Thought to include some information pertaining to imaging:
C-T (CAT) Scans – computed or computerized tomography.
Can show precise location of tumor, defined shape, solid or hollow; provides clues to a cancerous tumor but not as concrete as biopsy.
Not reliable in identifying tumors less than 2 cm in size.MRI (Magnetic Resonance Imaging) Scans – In many tissues, the image and detail are clearer than those with an MRI than a CT scan.
For some tissues, MRI image is less clear than CT. Difficult to distinguish between Inflammation and scar tissue.PET (Positron Emission Tomography) Scans – picks up cancer activity at a very small level.
Image not as clear as CT and MRI, inflammation can obscure other activities on scan and localizing exact location of tumor. Best suited for higher grade tumors, metastasis.
Some insurance carriers won’t cover cost of PET Scan.CAT/PET Combo Scans – wave of the future, allows for anatomical detail of the CT and detection of small nodules of cancer cells by PET. Not yet widely available in many hospitals.
Insurance coverage: don’t know.Good luck, fingers are crossed for everything to work in your favor.
Hugs,
MarionFebruary 19, 2015 at 2:53 am #80283lainySpectatorHi Matt. A couple of times Teddy’s insurance denied a PET but when the ONC stepped in they approved it.
February 19, 2015 at 1:53 am #80282mattreidySpectatorFirst, I want to thank you all for the continued support.
Insurance would not pay for a PET scan. They consider it experiential for CCA. So in place of that I had a chest CT w contrast and it came back clear (yay!). Tomorrow I will have a bone scan and I don’t expect anything to show up there.
Next Wed I’m scheduled to have my port installed and then start Gem/Cis the next day. Two weeks on, one week off per cycle. Standard stuff, I think.
I’m hopeful that I can do 3 rounds and then just have surgery to remove this new tumor.
Time will tell!
-Matt. xo
February 11, 2015 at 5:30 am #80281iowagirlMemberHang in there, Dude……thinking of you.
February 11, 2015 at 5:05 am #80280mbachiniModeratorMatt,
Praying that the PET has absolutely nothing to light up! You are doing a great job seeking all the options out there. I am sorry that surgery isn’t an option and that you are forced to do chemo before trials. Jumping through the hoops can be so frustrating. I did Gem/Cis for 6 months, Gem alone for awhile and then Taxotere for several months. My hope for you is that after 3 months of chemo, you will have a quick surgery (NO WHIPPLE) and be free of this burden forever!!! Please know that you are in my daily prayers…hugs.
MelindaFebruary 10, 2015 at 5:28 pm #80279marionsModeratorMatt….you answered a questions many of us ask: why not remove the tumor? However; as Dr. Pawlick explained, the disease is metastatic and removing this one tumor may not prevent other tumors from developing. And then what? You are feeling good and have a good plan on hand. That’s great.
Hugs,
MarionFebruary 10, 2015 at 1:36 pm #80278mattreidySpectatorI 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.
February 7, 2015 at 4:57 am #80277kvollandSpectatorYes, you can technically live without your liver but again yes, enzymes and insulin for the rest of your life. They actually try really hard to do do a pancreas transplant if they can….eventually if they can. Also sometimes if they do a Whipple for pancreatic cancer especially they will have to do insulin and enzymes too.
KrisV
February 7, 2015 at 1:46 am #80276iowagirlMemberDidn’t know that either. Totally remarkable!
February 7, 2015 at 12:22 am #80275pfox2100MemberI never knew that! Good to know!
February 7, 2015 at 12:18 am #80274lainySpectatorPorter, no question is stupid! I found this article and it is amazing!!! At John Hopkins they have a Pancreatic Clinic. You will find this article unbelievable!!!!
February 6, 2015 at 11:40 pm #80273mattreidySpectatorMy 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.February 6, 2015 at 11:33 pm #80272pfox2100MemberCan 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.
February 6, 2015 at 10:39 pm #80271lainySpectatorPorter, they only removed the head of the Pancreas and that was to see if the Pancreas had CC in it.
BTW, the stupidest (not sure that is a word) things can happen. When the Surgeon went in on the 1st Whipple and he got to the Pancreas, he had to stop. It was a 4 hour surgery to that point. He came out and said I have not so good news and I had good news. My first thought was that I didn’t hear the word bad. Turns out the dye from the Endo leaked and totally made mush out of the Pancreas and the surgeon needed a healthy Pancreas to cut. So that is why it was aborted and done over 3 weeks later.February 6, 2015 at 10:21 pm #80270pfox2100MemberAll of a pancreas can be removed? I have never heard that before. That is good to know! Lainy, I liked your response. Well said!
Porter -
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