MRF-Logo2019-Horizontal-RGB
Pulled Off Trial
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Pulled Off Trial

› Forums › General Melanoma Community › Pulled Off Trial

  • Post
    • November 26, 2019 at 1:06 pm
    jennifer83
    Participant
      I got a call on my drive home from work yesterday that my doctor didn’t want to wait until Dec 12 (when I could start the Opdivo + Bempeg/Nektr 214 trial). Instead, I’ll be getting Opdiov + Yervoy sometime this week. I’m a little disappointed… I was looking forward to being a part of that trial. I’m also a little surprised that my clinical nurse was ok with me waiting until Dec 12, but my doctor… not so much. Not sure how to feel about that. They made Dec 12 seem so close and that waiting wasn’t a big deal, so the phone call yesterday took me by surprise.

      I’m supposed to get my first infusion Saturday. My husband was going to fly out of town that day (these were plans made considering treatment would start Dec 12). I have three sons… ages 2, 3, and 9. Any thoughts on if I can still care for them and myself for a full week following my first infusion?

    Viewing 6 reply threads
    • Replies
        • November 26, 2019 at 1:35 pm
        Bubbles
        Participant
          So sorry for the crazy! That’s melanoma (especially with trials!!!) world for you! I am for hopeful for the combo this study is looking at. And…though I (post brain and lung mets) and many others do very well with nivo as a single agent, the data is very clear that more folks respond to the ipi/nivo combo! So…I think your doctor may be playing it very smart for you ~ going for the sure thing.

          As to reality:
          1. I am glad you are starting infusions ASAP.
          2. I took nivo not the combo and ipi is the bad boy of the combo.
          3. Side effects vary a great deal person to person.
          4. However, esp given that it is your first infusion, I bet you will be fine and able to do what you need to do for the first week esp…if not for the duration.
          5. Please contact Jackie!!! ” jbronicki” from one of your earlier posts. She is the REAL DEAL. She wouldn’t offer if she didn’t mean. I wish she was MY neighbor! She would be a great back up helper should you get in a bind.

          Melanoma is definitely a team sport! It takes a village. But, we have one.

          So glad you have your keys, house and family (in reverse order!!!) Hang tough. You got this. Celeste

          • November 26, 2019 at 1:51 pm
          Hukill
          Participant
            I had 5 combos and 52 opdivo. I always got my treatments on Friday so as by Monday I would be ok for work especially after the combos. It may kick your butt or not effect you much at all. I would ensure to have plenty of food and things for the kids so you don’t have to go to the store in case it hits hard. I think I missed the Monday after my first but worked the rest of the week. While on the combo I think I missed 1 day of work each week. A 2 & 3 year old I’m sure are a handful. Hopefully you have someone who can stop by if you need them.
            • November 26, 2019 at 2:12 pm
            gopher38
            Participant
              I’m doing the combo right now, so virtual high-five and welcome to the team. Two infusions in and itching and skin rash, and slight dry mouth have been only side effects. Maybe a little fatigue.
              • November 26, 2019 at 2:29 pm
              Edwin
              Participant
                I had very bad diarrhea beginning a few days after my first Yervoy + Opdivo infusion. I could not have cared for children that first week. I missed several weeks of work. However, side effects of the combo do not hit most people as soon as they hit me. Yervoy + Opdivo immunotherapy put my stage 4 melanoma into remission, after Keytruda immunotherapy had failed. Your doctor didn’t want to risk you receiving only Opdivo in the trial.
                • November 26, 2019 at 3:16 pm
                JudiAU
                Participant
                  I am having my fourth combo and I have kids (6, 10, 12) there is a lot less daytime care at the age but there is more driving scheduling plus a big carpool. I’ve had a lesser response than others (except one hospitalization for very high fever/headache followed by brain surgery) very closely followed by radiation and my fourth dose. I’d really say maybe. I wouldn’t want to do it. My mom (insists) in driving me to immunotherapy appointments. I don’t do anything but sleep after. I’m really tired after. Is there anyone to help? What would you do in an emergency?
                    • November 26, 2019 at 5:10 pm
                    JudiAU
                    Participant
                      It occurs to me that your littles might be in daycare and your older is in school. If that is the case, I probably could have managed it n
                    • November 26, 2019 at 7:43 pm
                    sks2019
                    Participant
                      As you might have noticed everyone has a different experience. My mom had lil to no side effects after her fist combo infusion. Second one brought fever and UTI , third one is was the most harsh and she is still recovering from that after 5 weeks. I wish you only the best and Pray for you.
                      • December 1, 2019 at 3:39 am
                      AshleyS
                      Participant
                        Hi Jennifer,

                        When you first posted, I responded with a long response but it didn’t go through. Long story short, I was in my early 30s when I was first diagnosed and also had young children (2 years and 2 months). I completed a full 2 years of Ipi/Nivo and have been NED for 3 years. I had bad stomach pains/diarrhea on the meds.

                        Please find my contact info on my profile if you ever need an ear. I’m from North Dakota, but still travel to MDA for checkups. I’ll be there next weekend.

                        Keep on keepin’ on!

                        Ashley

                    Viewing 6 reply threads
                    • You must be logged in to reply to this topic.
                    About the MRF Patient Forum

                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                    Popular Topics