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    Old 01-14-2022, 06:39 PM   #1
    Dani1983
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    Any guidance would be appreciated!

    Hi there, my father has been recently diagnosed with pancreatic cancer. Iím hoping to hear from anyone with a similar experience or anyone that has advice as we navigate this situation.
    He had been loosing weight slowly over about a year. He had a sudden onset of jaundice back in November and had an ultrasound. Below is what it said.

    Ultrasound

    Pancreas: There is a 1.5 X 2.0 X 1.4 cm hypoechoic lesion at the
    pancreatic head with no internal vascularity. Additionally at
    the pancreatic tail, there is a 2.5 cm anechoic simple appearing
    cyst which may be in keeping with a side branch IPN.


    He went to meet a surgeon and he did an endoscopy and put a stent in his gallbladder and did some sweeping. He said there was a blockage and thatís why he was yellow. The yellowing resolved within days and his appetite came back he gained a few lbs back.

    He was sent for a CT scan the first week of December which is below

    CT scan

    The mass described by ultrasound is not confidently identified on the arterial or portal venous phase component of this examination. There is a dominant cyst at the junction of the pancreatic body and tail that measures 3.0 x 2.4 cm cross- sectional dimension image 56 series 609. A thin septation is identified image 138 series 601. There is duct distention proximal and just beyond the pancreatic cyst but no definitive evidence of distal pancreatic duct distention prior to the pancreatic head.

    IMPRESSION:
    The suspected primary pancreatic neoplasm has not been confidently identified. There is no evidence of nodal enlargement or soft tissue stranding adjacent to the portal vein or superior mesenteric vasculature. The biliary stent is patent. Incidental note made of a dominant but cyst of the pancreatic body with one thin septation present. Possibly IPMN.

    He went to meet with the surgeon again who offered him a Whipple procedure and told him he would have chemo for 6 months afterwards and could see up to 10+ years of life if this was successful. He said 10% of cases have spread.

    He went ahead with the Whipple last week. I received a phone call saying that they ended the surgery early as the tumour had spread and was now wrapped around the hepatic artery. They told me he has 6-12 month to live even with chemo and it was basically an attempt to shrink it which isnít guaranteed to buy him some time. I asked if it was possible it would shrink enough to have surgery again they said they were open to it but itís a very slim 1-2% chance that would happen.

    He was referring to the tumour as extensive which surprised me since the measurements of it werenít that big. Also Iím not aware that a biopsy was done. Isnít this something they do to confirm itís cancer and what chemo it will respond to? Can he tell with his eyes alone that itís malignant cancer? I know you are not doctors Iím just hoping someone has some guidance or advice or maybe some good news that happened to them.

    I was hoping that he wasnít a worse case scenario and that fact that heís eating and gained weight was a good sign. Iím hanging on to hope as well because it hasnít t spread to his liver or other organs.

    Thank you for reading this and for any input.

    Daniella

     
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    Old 01-15-2022, 05:11 PM   #2
    RamblinWreck
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    Re: Any guidance would be appreciated!

    My wife had Pancreatic Cancer. It was detected in late July 2019 by UPenn in Philly, and she passed away in early July 2022 (11.5 months - just shy of a year).

    When diagnosed, she had a lesion in her left lung which the doctors said was "probably" not malignant (and thus indicating that her cancer was contained). At the time, the tumor was inoperable because it enclosed the hepatic artery (and maybe some other blood vessels - I don't have the CT scan report on this computer).

    She was treated with Folfirinox (the most aggressive pancreatic chemo treatment). At the conclusion of the initial Folfirinox treatment, she went to Sloan-Kettering in Manhattan for an "newerish, unique" ablative radiation technique developed by Dr. Christopher Crane. The Doc's at UPenn referred to my wife as having been "Ruth Bader Ginsberged" because the ablative radiation treatment my wife received was supposedly similar to what Justice Ginsberg obtained (also at Sloan Kettering).

    From all accounts, it appeared that Dr. Crane's technique "killed" the tumor.

    HOWEVER, chemo had to stop during the ablative radiation treatment as the combination would have been too much for my wife's body to take. During this time, the cancer spread and that's when we found out the lesion in her lung WAS malignant.

    In retrospect, if we (or more specifically I) had known that the cancer had metastasized and spread, I don't know that we would have gone for the ablative radiation treatment.

    And this is the issue, at least as I understand it, with Pancreatic cancer. By the time Pancreatic Cancer is detected, it has already metastasized and spread to the other parts of the body. If the cancer has metastasized, then, usually, the original tumor is the LEAST of your worries.

    I would suggest that you go to the link below which describes a ten year Pancreatic Survivor, David Dessert.

    At the time David's pancreatic was discovered, it was considered inoperable. David was one the first patients to under go a specific chemo treatment tailored to his type of pancreatic cancer. Now, I may be missing some specifics here; I think they kind of "guessed" that the particular chemo he under went would be appropriate for him based upon the genetic markers in his tumor.

    Long story short, the chemo was successful. The tumor sized was reduced enough to allow for the whipple, and the tumor was removed. David continued to undergo chemo for a fairly long time, and I think he has been given the "No Evidence of Disease" moniker (NED) for about seven years now.

    I have tried to greatly condense both my wife's experiences and David's. I met David on a now defunct cancer forum that was GREAT !!! He was most helpful and provided both my wife and I with advice. I shall always be grateful for his kindness and the time he spent advising not only us but, MANY, MANY others !!

    I suggest that you read the link below.

    I will also post a link to your post here to another cancer site that most folks (including David) migrated to when our preferred cancer site (mentioned above) closed.

    https://cdmrp.army.mil/cwg/stories/2021/david_dessert_profile
    __________________
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-15-19 - Urgent Care says "BS" on "Miralax"
    7-19-19 - Abd CT Scan reveals pancreatic mass
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced ~ 40%
    10-4-19 - Onc suggests chemo chng bec CA19-9 obtained at 1st & 2nd treatments is high. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

     
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    Old 01-15-2022, 08:28 PM   #3
    Dani1983
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    Re: Any guidance would be appreciated!

    Hi Tony,
    Iím sorry to hear about your wife. Thank you so much for your response and sharing your wifeís story.

    I will 💯 be signing up at the forum and looking into Davidís story. Itís really nice to hear a good news story!

    We are in Ontario, Canada not too far from Toronto. I havenít heard of ablative radiation. Iíll read up on that as well. Iím really hoping his oncology team is openminded and up for discussions.

    Speaking to people that have also been touched by this disease is very comforting.

    Thanks again!

     
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    Old 01-18-2022, 09:12 AM   #4
    Dani1983
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    Re: Any guidance would be appreciated!

    Hi Tony,

    Thank you for the reply. I have signed up at smart patients. I wasnít able to get on the other forum. I registered but it says I donít have access because Iím not subscribed. I emailed their contact for support. I heard back once and provided more info Iím waiting to hear back again.

    I was able to get some of my dads results. Are you familiar with what any of this means? Google isnít helping much. Iíve made posts on the other forums waiting to hear back from anyone there.

    ďCLINICAL HISTORY
CBD
    stricture - ? malignant.

    
DIAGNOSIS
Atypical
Satisfactory for evaluation
Reactive ductal cells and rare cluster of atypical degenerated epithelial cells.Ē

    This is from when he had the stent put in and the gallbladder sweeping. Was there cancer cells in the debris swept out of his gallbladder? I wish they would use plain English.

    also the discharge report said:
    ďUnfortunately, at the time of surgery,
the pancreatic head mass was deemed unresectable due to complete encasement of the common 
hepatic artery.Ē
    the words ďcomplete encasementď really hit me. When the surgeon said wrapped around I guess I was hoping it wasnít completely around. I suppose this is why he said shrinking enough to allow for surgery is slim.
    at least I know they did a biopsy now though.

    Thank you!

    Daniella

     
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    Old 01-18-2022, 10:00 AM   #5
    RamblinWreck
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    Re: Any guidance would be appreciated!

    Daniella:

    If it were me, I would do the following:

    1. Contact your Dad's provider and see if they have any tumor sample left that could be used for genetic tissue profiling. You can contact pancan.org to find out about getting the tissue material analyzed. Chances are slim that a genetic variant exists in your Dad's tumor that lines up with a particular chemo (10% maybe ?), but that 10% chance is well worth the effort in my opinion.

    2. Find out if the cancer has spread and metastasized. If the cancer has spread AND there is no actionable genetic marker identified in the remaining tumor material, then I would think you would want to tailor your Dad's treatment program to comfort and maintaining a good quality of life for as long as you can.

    3. If the cancer has not spread and/or there is an actionable genetic marker, then you could go for chemo and/or an ablation technique similar to Dr. Crane's technique.

    In David Dessert's case, his chemo treatment shrunk the tumor to a point where it could be removed (and apparently the chemo prevented spread or killed what cancerous cells had spread).

    Again, David's still here with us ten years after diagnosis, and he has been given the "NED" moniker for about 7 years now.
    __________________
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-15-19 - Urgent Care says "BS" on "Miralax"
    7-19-19 - Abd CT Scan reveals pancreatic mass
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced ~ 40%
    10-4-19 - Onc suggests chemo chng bec CA19-9 obtained at 1st & 2nd treatments is high. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

     
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    Old 01-18-2022, 10:08 AM   #6
    RamblinWreck
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    Re: Any guidance would be appreciated!

    Daniella:

    Two links are below. The first one is to a paper published by Dr. Crane on the ablative radiation technique he's working on at Sloan.

    The second link is to an article on chemo combined with Dr. Crane's ablative radiation technique.

    Good Luck !!

    Tony

    Link To Dr. Crane's paper:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6555709/

    Link to PanCan Article;

    https://letswinpc.org/my-treatment/2016/08/02/treatment-stereotactic-body-radiation-therapy/
    __________________
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-15-19 - Urgent Care says "BS" on "Miralax"
    7-19-19 - Abd CT Scan reveals pancreatic mass
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced ~ 40%
    10-4-19 - Onc suggests chemo chng bec CA19-9 obtained at 1st & 2nd treatments is high. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

     
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    Old 01-18-2022, 06:44 PM   #7
    RamblinWreck
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    Re: Any guidance would be appreciated!

    Daniella:

    Here's a PanCan notice of an upcoming webinar. It's about a doctor who also underwent chemo and surgery. He was at Stage IV but is still alive 8 years later.

    Once his doctors realized he was stage IV, they put him on a chemo of gemcitabine and Abraxane combined with immunotherapy.

    Marji also went on the gemcitabine/Abraxane towards the end (but not immunotherapy). She tolerated the gemcitabine/Abraxane much better tolerated than the Folfirinox.

    In retrospect, I wonder if she would have been better off with the Gemcitabine/Abraxane from the start. I don't think it would have cured her, but it wouldn't have been as hard on her system and she might have had more treatments thus prolonging her life and without as many side effects as Folfirinox.

    Tony

    http://support.pancan.org/site/MessageViewer;jsessionid=00000000.app301 25b?em_id=29952.0&dlv_id=57905&NONCE_TOK EN=AF01BA2FC6DBF75BEF2C026C456F414D
    __________________
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-15-19 - Urgent Care says "BS" on "Miralax"
    7-19-19 - Abd CT Scan reveals pancreatic mass
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced ~ 40%
    10-4-19 - Onc suggests chemo chng bec CA19-9 obtained at 1st & 2nd treatments is high. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

     
    Reply With Quote
    Old 01-19-2022, 09:12 AM   #8
    Dani1983
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    Re: Any guidance would be appreciated!

    Quote:
    Originally Posted by RamblinWreck View Post
    Daniella:

    Here's a PanCan notice of an upcoming webinar. It's about a doctor who also underwent chemo and surgery. He was at Stage IV but is still alive 8 years later.

    Once his doctors realized he was stage IV, they put him on a chemo of gemcitabine and Abraxane combined with immunotherapy.

    Marji also went on the gemcitabine/Abraxane towards the end (but not immunotherapy). She tolerated the gemcitabine/Abraxane much better tolerated than the Folfirinox.

    In retrospect, I wonder if she would have been better off with the Gemcitabine/Abraxane from the start. I don't think it would have cured her, but it wouldn't have been as hard on her system and she might have had more treatments thus prolonging her life and without as many side effects as Folfirinox.

    Tony

    http://support.pancan.org/site/MessageViewer;jsessionid=00000000.app301 25b?em_id=29952.0&dlv_id=57905&NONCE_TOK EN=AF01BA2FC6DBF75BEF2C026C456F414D
    Hi Tony,

    Thanks for this info. I registered for the webinar. I sent you an email. I wasnít able to respond privately as I havenít posted enough to be granted the ability to private message people.
    Thanks so much for sharing your experience and insight. Iím anxiously waiting for the biopsy results now. Tomorrow has been 2 weeks. Itís hard to believe! Time is going by so fast!

     
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