• What are your thoughts/experiences with Immunotherapy?

    Asked by mandybruin on Wednesday, September 18, 2019

    What are your thoughts/experiences with Immunotherapy?

    I’ve been on Ibrance October 2018. I have possibly had some progression so my oncologist is considering trying me on Immunotherapy, which has recently been approved, depending on the results of my CT, which I will be doing on Tuesday. Has anyone done Immunotherapy or know anyone who has?

    9 Answers from the Community

    9 answers
    • GregP_WN's Avatar

      There are several people on the site that are on immunotherapy. @LiveWithCancer is one that comes to mind.

      9 months ago
    • 2943's Avatar

      I have been on immunotherapy. I had two doses of Keytruda in a clinical trial and am down to my last two treatments of Imfinzi. Will have taken infusions every two weeks for a year. Side effects have been mild compared to chemo. Fatigue is there. Other ones not consistent...I take Claritin daily for itching. Nothing that I cannot tolerate. Would do it again if necessary. Anything specific and do you know which one? The Keytruda stomped a tumor so much a mega surgery was cancelled and it disappeared. Hugs!

      9 months ago
    • judithj's Avatar

      I had stage 4 lymphoma and went through immunotherapy Nov. 2018. The treatment is called CAR-T, I had it at Stanford hospital and the product used is Yescarta.
      I was declared in remission January of 2019 and remain so to this day.
      If this is the type of immunotherapy you are considering I would be happy to tell you more about it.
      We are so lucky these options are out there!

      9 months ago
    • LiveWithCancer's Avatar

      I was on nivolumab (Opdivo) for 5 or 6 years ... I can't remember which, now. Anyway, I got on it as clinical trial and was on it until May 2019. I've been on "watch and see" since then because I started developing a new rash and had a couple of other complaints that might (or might not) have been Opdivo-related.

      Compared to chemo, Opdivo was a walk in the park for me. Better yet, it kept me alive. I was supposed to die in 4 months ... and I will soon have my 7th year anniversary.

      9 months ago
    • debbien507's Avatar

      If you don't have progression, stay on Ibrance. I've been on Ibrance and faslodex (fulvestrant) for 4+ years with no progression (knocking on wood).

      9 months ago
    • Terri's Avatar

      I have been on Yervoy three times. I have had Stage IV melanoma since 2009. This is a permanent condition. I am still alive. Immunotherapy is a miracle. I still have recurrences. I have them cut out, so far this is possible. I don't think immunotherapy is a cure all, necessarily, but in my case I believe it has slowed it down. Yervoy was so much easier than chemo, or TIL.

      8 months ago
    • petieagnor's Avatar

      @debbien507. That is great to hear. I started that regime in April. Dr. issued a new script for 100mg. I get a CT scan every 3 mos & am due next week. This is my 7th kind of chemo. I'm triple positive which can be tricky. I feel more positive about my treatment now.
      @mandybruin. Dr. put me on an immunotherapy drug for 3 mons. My little nodule in my lung grew. Each of us is different so the results can also be different. The Ibrance has shrunken the spot to nearly where it was 3 yrs ago when it was discovered. I feel blessed.

      8 months ago
    • mandybruin's Avatar

      I’ve had definite progression with a larger cyst in my neck and 6 new lesions on my liver. I’ve since started Immunotherapy but had to stop for a bit due to getting hospitalized for what turned out to be extensive blood clots. I started having acute symptoms the day I started this new treatment so that’s not the cause. I found out I’m only 10% ER+, which is considered triple negative and that’s probably why I wasn’t really benefiting from Ibrance (or Tamoxifen prior to recurrence or Faslodex).

      8 months ago
    • Mmnn's Avatar

      @petieagnor Just a note for others, my doctor at Cleveland Clinic said a lot of people don’t know that on Keytruda many tumors swell up and appear to grow in 3 months, then disappear at 6 months. He showed us pictures. This may not be your experience, but something for others to keep in mind.

      3 months ago

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