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Rhondared's Recent CancerCompass Activity

  • Rhondared has replied to a post on the message board

    My husband was diagnosed February 6 with Merkel Cell Cancer stage 4. Parotid gland in the face and lymph nodes in the neck. If it has already spread to the lymph nodes you can look up the dismal prognosis on line from UAB, etc. Lymph node involvement is key to Merkel Cell Cancer. Declined surgery due to not wanting to lose chewing, swallowing, talking, eye sight in right eye, etc. Went straight to Emory Winship Ca...

    July 10, 2018 view post
    • Rhondared has replied to a post on the message board

      Merkel cell carcinoma is a VERY aggressive, malignant cancer. Melanoma and Merkel cell are the two most deadly skin cancers. The estimates range from 500 to 1,500 cases per year in the USA. That is important because the first surgeon who cut on my husband said he had never seen a case before. In fact, he said there probably wasnt a doctor in the entire city who had dealt with a case. Husband called and old friend and...

      June 23, 2018 view post
      • Rhondared has replied to a post on the message board

        Thank you so much for asking! He just completed fourth dose of keytruda. Has had no side effects other than the first 48 hours after a dose he takes a two hour nap during the day. We also dont schedule any strenuous activities or work for those 48 hours. The last two visits the doctor physically examined his neck and superclavicular area and stated that she can no longer physically feel the tumors. The MRI is usual...

        June 22, 2018 view post
        • Rhondared has replied to a post on the message board

          Be careeful on the recommendation of cold stuff to eat or drink after chemo. Dad was not allowed anything cold for several days after each chemo treatment. It was physically painfully if he messed up and drank it.

          June 11, 2018 view post
          • Rhondared has replied to a post on the message board

            Paula, First sorry for your news. My dad also had colon cancer and they removed large golf ball tumor then he was good for almost five years. Then when it came back he did two rounds of chemo. Then they said it spread and nothing else could be done. Palliative care and hospice. Doctors said they dont like two give timelines and estimates but similar cases were months to live. After they stopped everything dad lived ...

            June 09, 2018 view post
            • Rhondared has replied to a post on the message board

              One more thing- dont discount your gut feelings. Husband initially had a spot biopsied TWICE one inch in front of his ear. Both times it came back negative. Third time the dermatologist referred him to a second dermatologist who then sent him to the first ENT. My husband kept telling them something did not feel right. They told him it was fatty tissue, biopsies were negative, not to worry. He was insistent. When ENT ...

              May 27, 2018 view post
              • Rhondared has replied to a post on the message board

                Would be great if you were close to Emory. We drive an hour each way. But worth it. Doctor Kudchadkar has specialties in hematology and oncology. Went there after Husband was seen by TWO different ENTs.

                May 27, 2018 view post
                • Rhondared has replied to a post on the message board

                  The first thing the oncologist checks on my husband is the superclavicular lymph nodes every visit. They palpate them to see if they have grown or cancer has spread. Cancer started in parotid gland for my husband. Doctors insisted on PET scan, CT, and MRI and will have those done again every ninety days but the manual check gives them a quick insight on is there changes before and after keytruda. I myself would i...

                  May 27, 2018 view post
                  • Rhondared has replied to a post on the message board

                    Yes, keyruda works. Husband just had second dose with no side effects. Hoping for the best and will know more after scans. However, it has been weighing on my mind... what happens to those who dont have insurance and cant afford $150,000 per year for this LIFE SAVING drug? I never forget that saying...”But by the grace of God there go I”. Easy to say - get in a clinical trial or apply for compassionate approval but ...

                    May 24, 2018 view post
                    • Rhondared has replied to a post on the message board

                      I would go to a “bland diet”. You can look it up. Some of the things she is eating are already on it. May take a few days to see the result. It is generally much better tolerated for people with stomach issues.

                      May 21, 2018 view post
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