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Lindajoanna's Recent CancerCompass Activity

  • Lindajoanna has replied to a post on the message board

    I've tried to switch from Jakafi to Pegasys twice. I took the lowest dose possible 2 weeks in a row. The usual started dose is 45 mg and I took 22 5. My whole body was aching. I stopped. Months later I did it again. Same dosage, same reaction. But I was on Jakafii also. I was titrating down to 5 mg 2 X day. Pegasys is not chemo and is the only drug we have that could put us in molecular remission. I've read of people...

    June 27 at 10:12 PM view post
    • Lindajoanna has replied to a post on the message board

      Glad to hear he's finally getting some relief. I know hpylori all too well unfortunately. The dr was definitely amiss in not doing a follow-up. An infectious specialist dr is the best dr to treat hpylori after it is found by a gastro. You're right, he might not have what he has if it were eradicated earlier. Of course, you'll never know. No use plying the shudda cudda wudda game. Hope he has a good remission.

      June 23 at 6:38 PM view post
      • Lindajoanna has replied to a post on the message board

        I've had hpylori twice. Both times I did a 10 day round of specific antibiotics to eradicate it. A few weeks after, I always was checked to see if it's gone. Once was a stool test, another was a balloon test. Hpylori is the only bacteria that thrives in acid of which our stomach is loaded with. It can become resistant to some drugs. It can cause stomach cancer if left untreated. The dr should have followed up with hi...

        June 13 at 3:18 PM view post
        • Lindajoanna has replied to a post on the message board

          Hi I was dx in 2012 with ET. At first like you I was on an 81 mg aspirin once a day. My platelets started rising til they reached 1 million. I am on another forum for ET and everyone there strongly suggests that we see an MPN specialist. I went to one and was put on Jakafi. My platelets now run in the 500-600 range. The hematocrit is important also. Et patients shouldn't be higher than 42 for women, 45 for men. It is...

          July 12, 2018 view post
          • Lindajoanna has replied to a post on the message board

            Hi Jen, I have ET and am jak2+. I was dx through a Cbc and then had a bone marrow biopsy. I went on HU when my platelets hit 1 mil. I only lasted 5 days. My whole body ached so I just stopped it myself. I am now on Jakafi, which is also chemo for Et and MF people. I think you need to see an MPN specialist. That was a game changer for me and might be for you. I think you'll need to have a bmb. As someone else mentione...

            June 28, 2018 view post
            • Lindajoanna has replied to a post on the message board

              Hi Minnii is your brother also getting phlebotomies? Also, what is his hematocrit? A man's hematocrit should be 45 or under. It takes time to adjust to the right dosage. He should also be drinking tons of water. They would like us to drink half our body weight in ozs is water daily.

              March 15, 2018 view post
              • Lindajoanna has replied to a post on the message board

                I thought because of your age, you'd be worried about the scar. I was right about Dr. Google, wasn't I? We all do that and drive ourselves nuts. You're in a good place with a better dr. Since your in the medical field, you know that cancer can't be confirmed until the pathology, so as of now, you really don't know. Prepare for the worst and hope for the best. That's what I do. Hoping the best for you that's it's a b...

                October 19, 2017 view post
                • Lindajoanna has replied to a post on the message board

                  Hi, I don't like the shrinking & than growing again. That dr. Was not competent. The surgery is scary, of cours, but not horrific as you may be thinking. You've probably googled it 100 times. You will have a thin red line across your neck, high up that will turn to white and will become invisible to the naked eye. If it bothers you, my friend who had your surgery, got a necklace that layed right over the scar. Also, ...

                  October 19, 2017 view post
                  • Lindajoanna has replied to a post on the message board

                    Well, first off I think the first dr. Dropped the ball on you. Thank goodness you went to another dr. Stage 4 follicular neoplasm is not great. The word "neoplasm" means cancer. However, it can't be dx unless you have your thyroid removed and the pathologist looks at it. That's the only way to know for sure, so you definitely need to have surgery. I, personally would have the whole thyroid removed. But I'm not a dr. ...

                    October 19, 2017 view post
                    • Lindajoanna has replied to a post on the message board

                      Dear exhausted I hope you're not real and are a troll like the others are wondering. You are complaining about your mother in law, your husbands mother who just had a mastectomy. Are you for real? I hope not. If it wasn't for her, you wouldn't have your husband. Don't you see that? She is afraid, scared and sick. Did it ever occur to you that she could die? Would that be an inconvenience too? As they say, karm...

                      July 03, 2017 view post
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                      About Lindajoanna

                      Patient
                      Cancer Treatments

                      I was dx with polycythemia 4 yrs ago on a routine blood test. I didn't have any treatment for 3 yrs. my platelets would go up & sometimes down. Can't take aspirin due to stomach ulcers and gastritis. This yr my platelets started rising rapidly. I changed Drs and now am seeing an MPN onc. I tried HU but couldn't tolerate it at all. So I just recently started Jakafi. Much easier to tolerate for me.

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