Do you have experience with "oral chemo pills"?

GregP_WN
GregP_WN Member Posts: 742
edited September 2020 in General Cancer
Our blog post today has information about chemo by mouth or oral chemo. A lot of people don't think you can have chemo unless it's laid out on the bed, stretcher or exam room table/bed.

Comments

  • GregP_WN
    GregP_WN Member Posts: 742
    edited September 2020
    Oops, I forgot to post the link to the article, here it is>> https://bit.ly/3hXQwlu
  • po18guy
    po18guy Member Posts: 329
    edited September 2020
    First was an Aurora A Kinase inhibitor (aka Alisertib or MLN8237) in a clinical trial. Very odd, almost surreal circumstances. I was given a white paper bag containing $140,000 of experimental drug and walked out of the facility with the promise not to sell or give the drug away, and to actually take it as directed. I was kicked out of that trial for disease progression. What we didn't know was that I had two different lymphomas. One would respond but the other did not.

    I am currently on a JAK2 inhibitor (Ruxolitinib aka Jakafi) in oral pill form. It is approved for two marrow cancers: polycythemia vera and myelofibrosis. However, I am using it to tone down my T lymphocytes so that they stop attacking my skin and fascia. IIRC, it is my 5th regimen against chronic graft-versus-host-disease post transplant. A potential side benefit is that it might prevent a recurrence of the marrow cancer I had, 20q deletion Myelodysplastic syndrome.

    If I forget to take it (a problem for me with oral treatment) is that my upper body will begin itching - a reminder which I cannot ignore for long.
  • MLT
    MLT Member Posts: 89
    edited September 2020
    I am on my 8th cycle of Xeloda. The biggest side effect is hand/foot syndrome. It can be miserable! Dose has been reduced twice. Have scans on Fri to see what it is doing.
    I really miss my infusion nurses, but pills are more convenient.
  • TerriL
    TerriL Member Posts: 60
    edited September 2020
    I took Xeloda for six months after the rest of my treatment. It has side effects just like the IV chemo. Since I am accustomed to taking other meds twice a day, it was not a problem to remember the Xeloda.
  • Jayne
    Jayne Member Posts: 134
    edited September 2020
    I did Xeloda as well, the hand/foot syndrome was brutal but I'm still here so apparently something worked!
  • LiveWithCancer
    LiveWithCancer Member Posts: 470
    edited September 2020
    I didn't have oral chemo but I know a bunch of people who did.
  • Bug
    Bug Member Posts: 394
    edited September 2020
    My cousin had oral chemo.
  • Beaujingles
    Beaujingles Member Posts: 6
    edited September 2020
    I have been taking Imbruvica 140 MG caps since May for small cell B-cell lymphoma. So far no bad side effects.
  • andreacha
    andreacha Member Posts: 196
    edited September 2020
    2006 right kidney removed. 2007 mass on left kidney removed. I lasted until 2012 before another mass appeared on my only kidney. Saw original nephrologist/surgeon and brought MRI disc to him. He said "no way, I'm not touching it, it's too dangerous". I went back to my Oncologist to discuss options. He told me about oral chemo. He only mentioned two at the time. Nexavar and Sutent. We decided on Sutent. When I originally started it was 50 mg. capsules. If I remember correctly (don't put money on it) I was 4 weeks on and 2 weeks off. My insurance paid for the med and a co-pay foundation took care of the rest. My major complaint was fatigue, no nausea or anything else at the time. By the middle of 2013 I could no longer rely upon my vehicle to drive the more than an hour each way to my beloved Oncologist so he recommended one for me in the next town. They were both part of the same Hospital group with a big cancer center. I had no relapses. After 6 months with the new Oncologist my blood work was really taking a hit. He reduced my Sutent to 25 mg. 1 week on and one week off when I could. I had weekly bloodwork done. Some weeks it would be too dangerous. At times for instance my WBC was 2 my ANC was1 and my hemoglobin dropped low enough (44) to be hospitalized. Under the care of this doctor I had a total of 5 transfusions from which I developed antibodies. If I should need a transfusion at any time in the future due to injury or whatever, it would have to be done with what is called KELL negative blood which usually isn't stocked in small rural hospitals like mine. I was with this doctor until January of 2020, while still on low doses whenever I could tolerate it. All scans (CT chest and MRIs of abdomen and pelvis) - were done with no contrast and were clear. Over time, even with smaller dose it has affected my memory somewhat. I'll post later about my getting a second opinion and changing Oncologists.

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