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  1. Hopefully your oncologist will know what to do...

    Hopefully your oncologist will know what to do with that ATM mutation, if it’s ever needed. There have been some more PARPi successes in ovarian cancers for similar mutations, so approvals may come...
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    When you look at those PanCan patients with...

    When you look at those PanCan patients with elevated CEA and lipase, you are usually looking at patients who are well along in the cancer, not early detection. Hardly anyone really uses CEA for...
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    I’ve moved your post to its own thread. Blood...

    I’ve moved your post to its own thread.

    Blood work does not diagnose pancreatic cancer. The CT scan you had in the spring is a great diagnostic tool as is an Endoscopic US (not an abdominal US) or...
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    It was an Ironman athlete like this one that...

    It was an Ironman athlete like this one that motivated me to get off my butt 5 weeks after the Whipple and start riding the bike again. I recall reading that she was training for these events on her...
  5. Thread: Whipple

    by ddessert
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    No Evidence of Disease Saying you’re “Cancer...

    No Evidence of Disease

    Saying you’re “Cancer Free” is impossible because we probably all still have cancer cells lurking about inside. Perhaps they are too small to see in scans? Perhaps they’ve...
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    That’s correct. Similar to the person in your...

    That’s correct. Similar to the person in your original link, I was one of the earliest beneficiaries of platinum/BRCA2/PanCan treatment. So I think you’re headed down a productive track.
    ...
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    You may also want to contact PanCan.org about...

    You may also want to contact PanCan.org about their Know Your Tumor program. This program helps you get a sample of the tumor, have it genetically and molecularly tested, and then provides you with...
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    I’ve moved your post to a new thread as the older...

    I’ve moved your post to a new thread as the older one was from 7 years and likely few of them are around.

    As the article you linked states, that patient had a BRCA2 mutation (like myself) and...
  9. Thread: Whipple

    by ddessert
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    Thanks, Ken! It’s been over 6 years since my...

    Thanks, Ken! It’s been over 6 years since my Whipple and I occasionally get those same gas pains that are resolved by Gas-X. They’re so bad and sudden that I’m carrying Gas-X with me just in case. I...
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    ATM gene mutations are suspected to be sensitive...

    ATM gene mutations are suspected to be sensitive to platinums (like the Oxaliplatin you are getting in FOLFIRINOX) as well as PARP inhibitors and perhaps some others (like MMC, radiation?).

    I...
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    I think the median time for a recurrence after...

    I think the median time for a recurrence after the Whipple is 18 months, with most happening between 12-24 months after the Whipple.

    If the PET scan comes back negative, then they may say to wait...
  12. It can cause ulcers and some radiation...

    It can cause ulcers and some radiation oncologists prescribe PPI’s prophylactically to reduce the stomach acids and ulcer possibilities.
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    Also, consider that there can be more than one...

    Also, consider that there can be more than one very common problem(s) happening at the same time (IBS, anxiety, gallstone, blocked bile duct, blocked pancreatic duct, pancreatitis, poor diet, etc)...
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    Neulasta really only increases the neutrophil...

    Neulasta really only increases the neutrophil counts, not the other kinds of white or red blood cells. I’m not sure if that is the problem - nor it seems is anyone else.
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    6 days is a pretty long delay onset for the hives...

    6 days is a pretty long delay onset for the hives to be due to one of the chemo drugs. Although it might be that many days before your WBC rebounds enough to even cause that type of reaction. Look at...
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    Your MD Anderson oncologist has probably already...

    Your MD Anderson oncologist has probably already reviewed this, but here is one of the places to look for treatments based on mutations.
    ...
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    That dropping CA19-9 is a good sign, but the CT...

    That dropping CA19-9 is a good sign, but the CT scan will be the real confirmation. Totally understand the lack of energy or desire for anything after chemo. The first round is often the worst as you...
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    If you ask cancer patients if they’ve had some...

    If you ask cancer patients if they’ve had some symptom or other, you will always get a “yes” answer. It does not matter what symptom or what cancer. Cancer patients have had every symptom imaginable,...
  19. That’s good that you were able to handle it well....

    That’s good that you were able to handle it well. I think they quote the maximum time so you’re never complaining about that. Mine have always been about 2/3 of the quoted time or less.

    I’m not...
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    Like your doctor said, it is not time to worry...

    Like your doctor said, it is not time to worry yet. Those are common symptoms and there are many causes that are at least 1000X more likely than pancreatic cancer.
  21. That’s just one of the types of SBRT which uses...

    That’s just one of the types of SBRT which uses high doses of radiation over fewer days. Some of the others use implanted gold beads, breathing monitors or other methods to track out the movement...
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    Well, I’m pretty sure that acinar and pNET cancer...

    Well, I’m pretty sure that acinar and pNET cancer tumors don’t generate CA19-9, just adenocarcinoma so that measure is fairly useless for you. An alternative is to try CA-125 which is often a backup...
  23. Thread: 1 Year Later

    by ddessert
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    Thanks for the update and glad to hear that dad...

    Thanks for the update and glad to hear that dad is at least hanging in there.
    I'm going through my dad's stuff right now after his death and realized right away that there will never be another...
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    Finding Clinical Trials

    We all stress out that there are not enough treatment options, but only 4.8% of pancreatic cancer patients do clinical trials. How can we possibly know what is a good clinical trial?

    First,...
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    I joined this trial and had the physical exam and...

    I joined this trial and had the physical exam and MRI yesterday. The trial nurse informed me that 5 of the first 9 screened had PIRADS scores of 3 or higher, indicating the need for a biopsy, which...
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