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donsmrs's Recent CancerCompass Activity

  • donsmrs has replied to a post on the message board

    If you are in the US, the best place we ever found for that was Mayo Clinic, Jacksonville. Their GI surgeon, Dr. Horacio Asbun, is one of the top 4 in the country, and he saved my husband's life, and the life of a good friend of ours. Any of your doctors could call Mayo-Jax and get a referral appointment but if you get an appointment there (or any Mayo), before you go, be absolutely sure it is for the surgi...

    Thursday at 4:01 PM view post
    • donsmrs has replied to a post on the message board

      Mine grew back, then a year later, it started falling out again. Lots of it. I suspect I have female pattern baldness, and it comes from taking Arimidex. I finally got a consultation with a PhD nutritionist who put me on additional vitamins. He said 3 more months on these, and the hair should be better. I can't tell yet except it did quit falling out on clumps, after 2 months on it. If it does grow back, I will share...

      January 18 at 11:07 PM view post
      • donsmrs has replied to a post on the message board

        Have you had a nerve block done at a pain management center? Over time, as I understand it, the effects of successive block injections become permanent. Best part it, it has no effect on the CNS, unlike pain medications and medical-grade substances.

        November 06 at 12:03 PM view post
        • donsmrs has replied to a post on the message board

          My oncology RN told me, at the onset of my chemo that their patients, for wahtever the reason, seemed to have had much less neuropathy by taking Claritin, the plain 24-hour type, every day. Well I was already on prescription Clarinex every night. Had no neuropathy. To test it, I quit taking the Clarinex for about 3 days. Foot tingling becan after the first 24 hours. I notice that Arimidex seems to produce t...

          August 05 at 12:17 PM view post
          • donsmrs has replied to a post on the message board

            Not sure if this will work for you or not, but seems to work for me. I use "One," a hair cleanser for straight hair (there is also one for curly hair) which I bought for around $13.00 a bottle at Sally's. ("One" is Sally's Beauty Supply's answer to the WEN products). I only wash my hair twice a week, and "lather," up twice when I do it. Then I follow with  a nickel-sized daub of Original Argan Oil...

            August 04 at 2:59 PM view post
            • donsmrs has replied to a post on the message board

              Ask about rinsing the veggies in  a mild bleach solution. We had to do that when we lived overseas and the water was not safe to drink (and the farmers used night soil). Nobody got sick from that. Another consideration is that the rules are not one-size-fits-all. I read that I was to avoid seafood when I was getting chemo for breast cancer. So, I asked the oncologist (not the nursing staff) and he said as long a...

              July 23 at 7:47 PM view post
              • donsmrs has replied to a post on the message board

                Suspect that Interferon must have had some positive benefit for you to be managed on Sutent for so long at such a low dose.

                June 24 at 10:19 AM view post
                • donsmrs has replied to a post on the message board

                  Our onc says that drugs like ProCrit (erythropoietin) given to stilulate bone marrow to make more blood, actually feeds RCC tumors in particular and makes them grow, bigger and faster. It's in the disclaimers that it can do this. So, if you are offered an erythropoietin type of drug for your anemia, plan to quention the onc about it, in detail. My husband only gets transfusions. Which have their own set of ...

                  June 24 at 10:17 AM view post
                  • donsmrs has replied to a post on the message board

                    Did you have any problems with anemia as a result of the Sutent? That's what finally ended almost 2 years on Sutent, for my husband, so am curious. Only the 50mg. dose worked for him and caused much anemia.

                    June 24 at 1:50 AM view post
                    • donsmrs has replied to a post on the message board

                      Excellent advice. Also, there is a clinical trial for the Anti PD-L1 going on at NIH. Piperpilot on the CancerCompass web site is in the trial and giving us near-daily reports. I would encourage the mother of the 31 year old to try to address piperpilot on the current web site or join Smartpatients as was suggested by another responder and look for him there (Neil is the name to seek). He's a really savvy f...

                      April 14 at 2:54 PM view post
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