dmr1965

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  • in reply to: Coulda shoulda woulda #92837
    dmr1965
    Member

    Thanks. Does make me feel better to read your kind words. Marians, I did have the genetic testing done. I was negative for all they were looking for. But I think Keytruda is what they’re aiming to get me on. They’re going for “Compassionate Use” If there’s no study ready when I need it.

    in reply to: What about marijuana? #83669
    dmr1965
    Member

    I was inspired by this guy enough to try cannibus oil. I’m using a higher CBD, lower THC oil, so there’s no high feeling. The downside is it doesn’t have as much of an effect on pain or appetite, but it might help some. I’ve only been on it a few weeks, and I had to take a break to travel for a week.
    Supposedly it has the same ability to battle cancer. I’m in Colorado, so obtaining it was easy.

    I’m also on FULFOX chemo right now, so it’s hard to say if it helps or not, but I am willing to try to augment that chemo. I’ll update after it’s time for new imagery to see if my tumor is shrinking.

    Figuring out dosage can be hard with all the info out there. I settled on 1 gram per day, based on what I’ve read.

    http://news10.com/2016/02/17/cancer-patient-uses-marijuana-ilegally-helps-rid-himself-of-disease/

    in reply to: Work, social security and CC #91798
    dmr1965
    Member

    So, I’m leaving my employer of 18 years. I am eligible for rehire. In the meantime, I want to try to keep active by earning some certifications that I never got to before. :)

    Melinda, I don’t feel deprived either, thanks to very supportive family!

    dmr1965
    Member

    Not sure if this one was covered, but how about bracing for impact every time you feel a sneeze or cough coming on, because you’re sore from biliary tubes, surgical incisions, etc?

    in reply to: Biliary drain tubes removed #91806
    dmr1965
    Member

    You bet. Hey, my family comes from Iowa Falls on both sides. :)

    dmr1965
    Member

    Yep. If there’s one thing I’ve learned it’s to focus on the positives!

    in reply to: Biliary drain tubes removed #91804
    dmr1965
    Member

    Thanks! I feel a lot better already. I slept good last night for the first time in ages! It’s nice not to have to worry about snagging those tubes or pulling them in my sleep.

    I’m ready for the next step in this battle and to keep on fighting!

    dmr1965
    Member

    I had my experience at that very heavily advertised hospital. I remember the hope I had sitting in my hospital room in my first hospital (where I had a very negative surgeon and oncologist) and watching the infomercials late at night.

    Then I discovered just what you know – they’re no better at rare, hard to treat cancers and couldn’t get rid of me fast enough. Nice facilities and food, though.

    in reply to: Today’s oncologist visit #91729
    dmr1965
    Member

    Thanks everyone. I felt so much better after my appointment. I felt hope again.

    in reply to: 3rd strike on surgery. No transplant. #91644
    dmr1965
    Member

    Thanks, everyone. I do have a port, middlesister1. I’ve grown to love that thing for labs and my first round of chemo.

    I still don’t have a really clear understanding of why they had to abort my 2nd surgery, which was a resection attempt. I wonder if there’s a possibility that could be retried in the future.

    What really sucked was that my surgeon had been so confident that there had been no spread of the cancer in the year I’ve had this diagnosis. I don’t blame him – you can only see some of these things when you’re in there poking around.

    I’m a fighter, and I think my oncologist is very open minded and determined too. I have had experience with surgeons and oncologists who basically told me it was over and to get chemo and hope for the best, and I’ve had the great team I have now who have been in there right with me fighting all this time.

    Was just reading about the T-Cell therapy – hard to miss since it’s all over FB these days, and just read Melinda Bachini’s Caring Bridge site. Not sure of the chances of getting on that, but I’m hopeful about the chemo study going on here at UCH, where I’m already receiving treatment. My onc appointment is Monday. We have a lot to discuss…

    BTW, anyone have a metal internal stent, and do they have pain from it? The first thing we discussed is getting rid of these darn tubes I’ve had hanging out of me for a year. I did have a plastic stent for about a week and it seemed painful at the time. But… that was before a year of constant abdominal pain, so maybe I am just very sensitive there.

    in reply to: 3rd strike on surgery. No transplant. #91638
    dmr1965
    Member

    I really had a hard time with this surgery. I had no end of trouble with IVs – burning pain, veins retreating, blowing up, IVs being moved. Had my usual trouble with my heart rate being high (due to a now known issue) and blood pressure low. Had to have two infusions of blood and lots of ascites – had to have a drain bag put on to replace the bulb they had in my abdomen, and it was filling up several times per day. The blood infusion seemed to help slow it and I got out of the hospital and back on diuretics.

    I can’t say I’m sorry to be done with surgeries! ;) Just wish one could have been successful.

    dmr1965
    Member

    Looking back at my case, I had gastrointestinal problems way back when I was in the Air Force. Some of them seem to have definitely been bile duct related. That was some 25 years before my diagnosis. As for that, I had severe abdominal pain more than a month before I became itchy and jaundiced.

    Not sure it had any effect on my health, but in the Air Force I was exposed to some pretty harsh chemical solvents and asbestos from brake systems and construction work.

    in reply to: Transplant donor approved #90674
    dmr1965
    Member

    Turns out when examining my CT scan, they discovered a lot of fluid buildup in my abdomen. No wonder I was feeling so bloated and in pain. They drained off 1.5 L of water!

    Everything else looked ok and I think we’ll be on for early January. I’ll update when that’s confirmed.

    in reply to: My fun with biliary drains #90275
    dmr1965
    Member

    Thanks, Ladies

    I have them capped, except for 48 hrs after they are changed out, to ensure they are working ok. Sorry if I was unclear in my post – the leakage I’ve had has always been due to mechanical failure somewhere on the fittings attached to the drain, or a cross-threaded cap or something. My biliruben was good – I just had labs on Wednesday. I’ve not had jaundice since before I started getting treatment, thank goodness!

    But, I should have mentioned (can’t remember if I did in my introduction) that I have Type II diabetes, and have had it for many years. My blood sugar has not been in very good control since I’ve gotten sick. And – in the past, I have had issues with gastroperesis, although there was some difference of opinion between doctors on that – in fact, those discussions were with my MDs, not the gastroenterologists. But that’s what took me to see the gastrointerologists in Albany, was the stomach pain and feeling things just weren’t moving through my system well.

    in reply to: My fun with biliary drains #90271
    dmr1965
    Member

    I could discuss seeing a gastrointerologist out here. I saw two in Albany, and didn’t have a good rapport with either one. I did have an endoscopy and proctoscopy a couple years before the CC diagnosis, but neither found anything.

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