peter

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  • in reply to: Long overdue update #23229
    peter
    Member

    Thanks for all your kind words. I’m enjoying being back into photography and you’ve encouraged me to keep going. I’ll put some more pictures up soon. And of course it’s a great diversion from trying to decide what to do.
    Actually I’m giving myself a medical break. After 5 procedures in a month it’s time for no procedures, no docs, no appointments for a few weeks. Just getting out in the beautiful fall weather, taking pictures, time with friends, loving life.
    -Peter

    in reply to: Miracle Man Update #20521
    peter
    Member

    Go miracle man!
    On the communication issues…….sounds pretty common to me. My approach is that you have to be the hub of the wheel for your own health care, or have a support person who can do it for you. I’ve had the same problem and have insisted that the Doc’s talk to each other and followed up with qustions making sure it happened. To be fair I only do this when I judge it to be critical to may well being as of course they are all overloaded with cases and too much to do.

    Jeff, have you made a dent in the lobster population?

    -Peter

    in reply to: Barb (thecdr) #20309
    peter
    Member

    Thanks for keeping up Kris. Yes, my thoughts, prayers for Barb and her family.
    -Peter

    in reply to: CPT-11 Combination Therapy #20349
    peter
    Member

    Wow Jeff. That’s some good news mixed in with your next adventure. I’ve heard rumor that Lobstah’ is a great cure for whatever ails you so be sure to partake!

    The Eagles had no idea of what they were setting in motion by the way.

    -Peter

    in reply to: Primary sclerosing cholangitis (PSC) #20249
    peter
    Member

    Thanks Marion. Something I need to research more.

    in reply to: 4 years doing great #20234
    peter
    Member

    Thanks Margie! We love good news stories.

    in reply to: Taxotere no longer appears effective ? #20187
    peter
    Member

    Jeff,
    You remain an inspiration!
    When are you headed to Maine? Are you driving?

    I’ve been a bit crazy and haven’t checked in here lately as much as I like to. Among other things I’ve been remodeling a basement. Maybe we should add carpentry to the list of alternatives eh?

    -Peter

    in reply to: What happens after surgery? #20233
    peter
    Member

    moncap,
    Cholangitis, actually called ascending cholangitis, is an infection that occurs where the tiny bile duct that now replaces the common bile duct is sewn direction into the intestine.
    When caught early, your Dad should take note of how his body signals infection (headache, low grade fever, tingly skin perhaps), antibiotics usually help. Often patients will be on a low dose of prophylactic antibiotic or, on their doctors orders, keep antibiotic available for when an infection comes on.
    In my case I have found that mucus producing foods like dairy and coffee tend to increase my chance of infection.

    Hope this helps.

    -Peter

    in reply to: Fluid Build-up (Abdomen and Extremities) #19806
    peter
    Member

    While Ascities can be caused by CC it can be a side effect of other problems as well. As CC patients many of us have compromised livers, sometimes as a side effect of the build up of toxins (bile) that may have not been able to drain as needed. This liver damage can also be a cause of ascities.
    Jeff’s advice about a low salt diet can be helpful. I’ve also had good luck with diuretics. In my case Spriilactone used in concert with Furosemide. And when it’s really bad having it drained does bring relief although it can sometimes return quickly.
    If you use visualization as a tool try standing or laying quietly and visualize a waterfall inside your body. See the fluids filling the waterfall and draining from you into the earth.

    -Peter
    -Peter

    in reply to: chemo radiation with xeloda #19609
    peter
    Member

    I took Xeloda for 8 months. I did have to cut the dose back as well as I pretty much got all the possilble side effects. This started 3 1/2 years after surgery but, in combination with other treatments and changes, it contributed to holding my recurrence at bay. I’d do it again.
    -Peter

    in reply to: I am so happy…. #19549
    peter
    Member

    Awesome Kris! This is such wonderful news. You rock girl. (and I still think it was the purple hair that turned the tide)
    -Peter

    in reply to: Floating Tumors? #19454
    peter
    Member

    My metastasis was to the lining of my adbomen. My onc at the time, who has experience with over 200 cases of CC, said it presented like ovarian cancer and that they had seen this before. He started using a new marker for me, CA125, which was highly elevated. Fortunately for me the combination of treatments that I used worked, or perhaps it was just my getting a long straw.

    If Bob has ascities this can sometimes test positive for cancer. I wonder if that is what they are referring to as ‘floating tumors’.

    I struggled with nausea but did not have to use prescription drugs. The insurance reaction sounds typical but so unfair to me. I hope they agree on a substitute that works. I’ve posted this before and I recognize it isn’t acceptable for many but I relieved my nausea with marijuana. It was amazingly successful. VT does have a medical marijuana statute but is also very lenient in cases like ours. I didn’t bother with all the paperwork for the medical statute.
    Some of my distress also came from a very acid stomach. I used over the counter Ranitadine (sp?) for while but much better was pure plum extract my Chinese medicine practitioner gave me called Ume. It has no other ingredient other then a paste like substance boiled down from the plumb. Bitter beyond any pucker factor I’d ever tasted but worked very well for me.

    My two cents. I hope your husband finds comfort and that the treatment shrinks the tumors.

    Courage,
    Peter

    in reply to: Triphendiol #19181
    peter
    Member

    Love it!
    Can you post us a picture of you in the hat?
    Actually, having said that I’m not sure if attachments work here.
    Rick????

    in reply to: How in the world do I get him to eat? #19413
    peter
    Member

    I used marijuana to relieve nausea when I was on chemo and it did help with appitite as well. Balance is important as any toxin in our bodies is filtered by our livers which are already stressed both by the disease and by treatments.

    -Peter

    in reply to: How in the world do I get him to eat? #19410
    peter
    Member

    I also had no appetite, no interest in eating although intellectually I knew I needed to.

    My wife made me smoothies in a blender which worked pretty well for me. My favorite fresh fruits, sometimes yogurt, sometimes vanilla ice cream (!), rice or soy protein powder (watch for constipation with these), spiralactone, and milk or juice base. I could just take a little at a time but I could spread it out all day.

    Even when I started to eat again I ate 5 or 6 small meals a day. Find the foods that appeal to him. I agree, this isn’t the time to worry about the food pyramid.

    -Peter

Viewing 15 posts - 1 through 15 (of 190 total)