Thank you so much.
I am a very upbeat person and people expect me to stay that way, or at least in my mind I think they do. Crazy thing is if I didn't have my son, who is my best friend, and he wasn't so young I don't even think I would care that much about all of this. I would be charging up those credit cards buying things for my friends and taking cruises and trips places. I am so afraid of dying and him not remembering me.
Got my test results a few minutes ago, CA125 is up to 39, so I off to get a scan today. Based on results we go back to chemo, adding Avastin, to the regiment. The Dr. did say they are coming up with new stuff every day and a drug Vitrakvi was just cleared for use and might be something for me to try next.
I was diagnosed at 3c, and it sounds like we have both gone the standard treatment route. This will be round three for me if and when I start up again.
My doctor has just sent some of my tumor off for bio-marker testing which is supposed to help with targeting exactly where the cancer is and treating it. I do know I am NOT a candidate for immuniotherapy as my "mismatch repair" is intact. My oncologist says that is a good thing though because I am eligible for more treatments. So much information to digest today.
Hi Jansen 52.
I have just started taking Niraparib, following four years of chemotherapy, I always responded to each cycle, and my C125 dropped, but every seven months or less C125 started to climb. I’m now resting from chemo, hence trying out this new drug. My only symptoms have been a slight feeling of pressure on my bladder, I take my blood pressure twice each day. I would appreciate any advice on how you have found the drug Niraparib.
Managed the 100. Niraparib quite well. Blood pressure not too bad, good appetite and sleep pattern. Still feel very nauseous but this has been the case since first line chemo. Had some bladder pressure at first (especially at night, difficult to get to bathroom in time), but fortunately that has sorted itself out.
CA 125 rising again over last couple of months. Up to 45 last month. Getting more stomach pain and constipation so CT bought forward from June to today.
Onc wants to leave chemo as long as possible so we will have to wait and see what scan results reveal.
hope you manage well on it and CA125 levels out.
Hi thank you for your response. Similar to your experiences on this drug. I was advised on starting Niraparib, to take at night, I usually take at the same time of 8.45 pm . This they stated would help with any nausea I may feel, Anti sickness tablets also given. Thankfully I have not suffered with any sickness, as yet. The thinking behind this was less likely to feel or be sick whilst resting over night. I wish you a good outcome from your scan.
Lynparza did nothing, I have moved on to Tamoxifan, been on it last 30 days. Numbers went up again, not as fast, but still up.
So, 39, 59, 85, 169, 196, 333, 411, from Oct. 4 2018, to May 1st 2019. Still nothing on scans, getting another one on May29th.
Chemo is coming soon I'm sure but what can you do? "Get busy living or get busy dying".
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