• Pablo's Avatar

    Pablo shared an experience

    Radiation

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    • Pablo's Avatar
      Pablo

      I had my 7th PET scan since starting immunotherapy. A mesenteric lymph node that they’ve been watching for about a year got bigger, otherwise the scan was clear. They can’t be sure it’s malignant without a biopsy, but it’s location makes a biopsy very tricky. So, to be on the safe side, they zapped it with Cyberknife (technically, it’s called stereotactic body radiation therapy). It was five treatments, highly targeted. It should not only cook the lymph node it should also reawaken the immune response. It was an easy experience, just a little nausea and fatigue. The next scan in March 2019 should show if the treatment worked.

      9 months ago
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    Pablo asked a questionAnal Cancer

    Opdivo through arm vein infusion rather than port?

    8 answers
    • SandiA's Avatar
      SandiA

      I have never done infusion through anything but my port. However, during radiation I had to sit in infusion almost daily getting fluids. I had never had problems with my veins but after a week or two it became very hard to get a vein to work. I was there one Sunday and they had to bring someone in from another department. No one could get a vein that day. So I would probably keep my port unless it becomes a serious problem and I don’t have a choice.

      about 1 year ago
    • carm's Avatar
      carm

      Hello, I'm an oncology nurse and the rationale is that if you use that vein, especially in the crook of the arm you take the risk of infiltration and eventually the vein will develop a lot of scar tissue from the punctures.

      about 1 year ago
    • andreacha's Avatar
      andreacha

      I have to have bloodwork done every week - without fail. My veins are so bad now. As carm said in the crook of your arms is a particularly bad place after too much use. You can feel the scarring in each. And then when they think they find a good one, it either rolls or blows! There is no way I could have infusions on a regular basis through my veins.

      about 1 year ago
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    Pablo shared an experience

    Oh No

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    • Pablo's Avatar
      Pablo

      I posted the wrong title to this experience. Instead of “Oh No” it should have been “Oh Yes!” After 48 infusions of Opdivo, my latest PET scan was good - sixth one in a row. I will shortly begin receiving my infusions once a month rather than twice a month. That will make things even better. Immunotherapy is phenomenal!

      about 1 year ago
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    Pablo asked a questionAnal Cancer

    New Opdivo Protocol

    12 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      Pablo, I have a friend who was in the PhaseI trial for nivolumab. He was in the trial for 2 years. Unlike in my case, his tumors responded and went away after beginning Opdivo. When he came off of the trial, he came off of all treatments. He remains cancer-free today.

      I seem to currently have one active tumor. I had to come off of Opdivo for a couple of months when another tumor in my supraclavicle lymph node (collarbone) started growing after 4 years of stability. I decided on radiation for that tumor. After the radiation, I went back on Opdivo. The one remaining tumor shrank by about half (not quite that much) immediately after I returned to the Opdivo, but has remained stable for the last two scans.

      I might opt to go to one of the triplets next time around. I have friends who are having remarkable success with the carbo/Alimta/Keytruda protocol. Only thing is, I had carbo and Alimta as my first line of treatment (along with Avastin) and I was so, so sick from them. People I know are not experiencing that sickness, though, because apparently, they are getting smaller doses.

      over 1 year ago
    • WoodsRLovely's Avatar
      WoodsRLovely

      I was not having any luck with chemo - would not get rid of my Hodgkin's lymphoma. Finally, my doctor put me on Opdivo - after five infusions I am now in remission. I did not have any side effects. I am over the moon - a non-toxic treatment that works! Hooray! Still, I have to prepare for a stem cell transplant but will look fondly back on the six weeks of Opdivo where I felt like a person again!

      over 1 year ago
    • Pablo's Avatar
      Pablo

      WoodsRLovely: Fantastic news! It also took me about 5 infusions to get to complete remission, but, just because they can’t detect it doesn’t mean it’s not there so we continue. I certainly relate to your statement about feeling like a person again. It’s so amazing to be healthy but I suppose you have to go through a tough journey before you really appreciate that. Best of luck with your transplant.

      over 1 year ago