A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.

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    Peripheral Neuropathy: It probably depends on the...

    Peripheral Neuropathy: It probably depends on the ultimate cause of the neuropathy. Mine was caused by weight loss (the nerves got exposed to raw bones due to loss of fat and muscle) and improved as...
  2. Thread: Nexium

    by ddessert
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    I do take it every day. I was told by my surgeon...

    I do take it every day. I was told by my surgeon that I would be on it for life. The reduced stomach acids are supposed to prevent anastomosis, or ulcers that eat through the surgical joints after...
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    Here is the link to the chat on pancreatic cysts:...

    Here is the link to the chat on pancreatic cysts:
    https://wakelet.com/wake/92e1db71-948a-4690-8144-5afb399b8223
  4. As it seems that you are a chemotherapy veteran,...

    As it seems that you are a chemotherapy veteran, I'm sure you will quickly navigate this too. FOLFIRINOX is perhaps our best 1st-line treatment. I was fortunate enough to travel the stage 3 path to...
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    I was a little rough on them. I think I might've...

    I was a little rough on them. I think I might've been the only patient, too. They just get talking amongst themselves in their own language. The summary link should be up there tomorrow.

    Next...
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    Perhaps a bit late, but today's Twitter #PancChat...

    Perhaps a bit late, but today's Twitter #PancChat is on Twitter in 5 minutes where the topic is pancreatic cysts.
    I will try to ask some relevant questions on your behalf and post a link to a...
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    Yes, I guess a messed up office. When the...

    Yes, I guess a messed up office.

    When the biopsy is scheduled, ask if there is a way to get enough material for genetic/molecular testing at the same time. This information can be really...
  8. Thread: Nexium

    by ddessert
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    I take a different PPI called pantoprazole...

    I take a different PPI called pantoprazole (protonix).
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    They should next schedule an appointment for an...

    They should next schedule an appointment for an endoscopic ultrasound (EUS) for a Fine-Needle Aspiration (FNA). This will be with a GI surgeon with special training for this procedure. They will try...
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    Did they give her steroids with her chemotherapy?...

    Did they give her steroids with her chemotherapy? Many patients get steroids to help with the fatigue and feel great that next day. But soon after it wears off and extreme fatigue sets in. We all...
  11. I lament that we cannot push our doctors to do...

    I lament that we cannot push our doctors to do something we’d like to do but they don’t think we should.

    One question: is the ATM mutation germline (inherited) or somatic (only in the tumor)?...
  12. 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...
  16. 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...
  20. 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...
  23. 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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