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Any long term survivors?

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Leahstuffle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2019 at 1:03pm
Thanks, Donna! I don't know the efficacy of each of the options, but I am relieved to have something that isn't *just* chemo to work with. I'm excited about a multi pronged approach.
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britricker10 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote britricker10 Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2019 at 9:53pm
That's very good news, Leah! This will be an encouragement to many. I know you are in the thoughts and prayers of many people. Best of luck on this journey! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2019 at 4:15pm
Hey friends, I just got results that I am PD-L1 positive and will start abraxane and tecentriq next week. I also have low platelets (75,000) and my hematocrit came back borderline low, too. The concern is bone marrow metastases. I was really bummed to hear that and it makes me very nervous. Hoping for an excellent outcome from the immunotherapy!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote britricker10 Quote  Post ReplyReply Direct Link To This Post Posted: May 23 2019 at 8:02pm
Good luck! Hopefully all goes well! 
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MikeW View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MikeW Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2019 at 11:43pm
My wife (TNBC with bone mets only) has very a high PDL-1 and is being considered for Atezolizumab (Tecentriq). However, she's had brain surgery followed by Whole Brain Radiation and is very weak. Another thing she's extremely allergic to Taxol which is usually given with the Tecentriq. Is there anything else she could take in substitute?
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JMJ View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JMJ Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2019 at 10:08pm
MikeW, I too had brain surgery and whole brain radiation a year later, I also had cyberknife to the tumor bed in my brain. I was NED after cyberknife. I had a recurrence in my brain in a different area, then had the whole brain radiation. 

I've been on Xeloda for almost a year, I've not had any spread into my body. How did the whole brain radiation do for your wife, or has she had any brain scans since treatment? The whole brain radiation either shrunk or stabilized all the cancer on the lining of my brain. I have one lesion that filled with fluid so we are watching that to make sure it doesn't press on my brain too much or they will drain or remove it.

Personally, the steroids they gave me for the radiation were the hardest part. I didn't realize how many side effects they were causing until I started weaning off of them! Fatigue was a side effect of the steroid, and surprisingly, weakness of the quadriceps is another specific side effect. And I thought I was just out of shape and weak because I had gained so much weight from the steroids. The steroids also made me very irritable. Once that started to lift during the weaning off of steroid process, I was so glad to know it was Med related. Long story short, if she's on a steroid, research the side effects to help you both get through it. The brain surgery was more exhausting than the radiation for me, but again I was on steroids after the brain surgery too, and had to switch to a different one because I had every side effect that you are supposed to call your dr about, but I didn't know for months because I didn't read the paperwork the pharmacy gave me. I was just out of it mentally and my brain just couldn't make connections! 

Oh and the #1 advice I got when I needed it was to get a neuro oncologist if you haven't already. If you haven't that might be the missing link. Now I see that your wife had bone mets alone, nothing in the brain? So was the radiation for bone mets to the skull? If so, are there oncologists that specialize in bone, like a bone cancer specialist she could see? 

I had no idea that my medical oncologist only treats from the neck down, and that it's the the neuro onc that treats the brain and spine. What I like best about the neuro onc is that he "gets" me, he's a neurologist and an oncologist, so all the neurological deficits are addressed along with treatments, he specializes in treating the brain, and is up to date on all the options (I go to an NCCN facility, and recommend that).

I hope that helps a little, and I know it's a long reply, thank you for your patience with me.


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