Hi y'all! Hoping everyone is doing well. Jimmy had his monthly lab work on Monday that is required to make sure he's able to continue with the immunotherapy. We saw the oncologist today and had some hopeful news. Both his AFP tumor marker and his LACTATE DEHYDROGENASE have dropped since last month. Still high but headed in the right direction at least. Several of his other tests had also had positive changes. He's also gained a few pounds. I was afraid it was just fluid but oncologist didn't think so. Only bad result was his platelets had dropped and he seems to be anemic again. So we'll be working on trying to get them up before his next visit. He had his 5th Opdivo infusion and will have the 6th one in 2 weeks. Then we have an MRI scheduled for March 1 and praying that it will show shrinkage of the tumors or at least that they're stable. I'm working on a couple of interesting projects with AstraZenica this month. If you've never done it, go on their website and read about becoming a member of the Patient Partnership Program. Great way to have your voice heard and be an advocate for changes in HCC treatment and patient care. There's always some interesting projects going on and they are great people to work with. Plus you are compensated for your time. Take a few minutes to read about it and apply if you think it's something you want to do. Both patients and caregivers are welcome to apply.
God Bless everyone. Sending love and prayers to all my friends on Blue Faery. Hoping February is a great month for us all. A friend found this picture of Jimmy from high school the other day. Just had to share. 💕
Sharon ❤️❤️❤️
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Good news is always so good to hear. Opdivo seems to be a helpful treatment for many people. Can you tell us about the infusions? How long does it take? Do they make him sick? How is he feeling between treatments? Sorry to be so nosy. 😘
Hi... you're not being noisy. That's the way you learn from each other. He gets the infusion every 2 weeks. It takes about 30 minutes. He takes his tablet and headphones and listens to music to pass the time. I just asked him and he said there's no pain during the infusion, just feels like getting an IV. The first time he felt really tired the first couple of days. He's on 5th one now and we don't really even notice a difference. We haven't really noticed any side effects either which is a Blessing after the Lenvima. We just go in every 2 weeks and usually about an hour all together from walking in to walking out. He has to have lab work once a month - Metabolic Panel, Complete Blood Count, AFP tumor marker and LACTATE DEHYDROGENASE. He sees the Oncologist once a month on week he has the lab work. Hopefully it's helping or at least keeping them stable. We'll know more after the MRI on March 1. Sharon ❣️
So good to read this update, and I love the photo! It's really fantastic that you are giving back through the projects with AstraZenica - it must be a great feeling to know you're making a difference. Hugs and love to you both!
Good morning Wendy! Hope you're staying warm. We're much warmer this week after that horrible cold spell last week and no electricity for days. Isn't the photo cute? I didn't know him back then. He was in his late 30's when we met. I really enjoy working with AstraZenica on the projects and absolutely LOVE the people I've worked with. Got to participate in a round table the other day with 3 other patients/caregivers and that was so interesting hearing others experiences. Love to you my sweet friend! ❤️❤️😘Sharon 💖
Sharon, Such good news… enjoy the “in between” scans time!!! You are such an encouragement to others and know it feels good to participate in projects and feel you are making a difference! I had the opportunity to speak at FDA hearing about Opdivo and HCC… it’s so important to give faces our loved ones to others and let our stories be heard so that decision makers see the people and not just a disease entity! Praying for more rejoicing March 1!! Bonnie
Such wonderful news about Jimmy! And I adore the photo. So handsome. Thank you for participating in more projects and encouraging people to speak up. It takes a village! Much love to you and Jimmy. 💙Andrea
Thank you so much Andrea. You and the friends I've made on Blue Faery have made such an impact on me. The encouragement, love and support helps me have the strength to get through this nightmare. Thank you for providing me the opportunities to speak out and be an advocate not only for Jimmy but everyone that this disease effects. Even more importantly, thank you for taking the time to reach out to me and encourage me to get involved. You touch so many lives. ❤️❤️❤️Sharon.
Hi Linda,We're hanging in there. Are we friends on FB? If not send me a friend request. I'm friends with Wendy. Jimmy has good days and bad days. The last few days he's felt like helping in the garden so that's good. Finally have a care attendant after 3 months without so that makes it easier on me. Know that someone is going to be here with him if I need to run errands. Worry about him falling outside if he's here alone. Been busy trying to get garden started and just making sure he's as comfortable as possible and making the most of the time together. Since he's stopped the immunotherapy, he's feeling better and his liver symptoms have improved. He's been having some pain episodes the last day or two so will discuss that on Thursday with his nurse when she visits. Storm is lessening so guess I'll try to grab some shut eye.
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