konniestwin
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Marions – yes, the gastro surgeon had been monitoring her closely, and we were aware that the plastic stents would have to be replaced. The surgical onc suggested we get that done in March, and the gastro surgeon agreed that it would eventually have to be done, but if she was doing okay, then he was concerned with that procedure while she was doing chemo too. A lot of weighing the risks. She had seen the gastro surgeon just a few days before she left for Arizona and all was well. Since she lives with me, I have become accustomed to her behavior patterns, and after a few days home from Arizona, I knew the excessive fatigue, lack of appetite, etc., was more than exhaustion from spending a week with 3 young ones. Konnie also suffers from severe depression (before CC diagnosis) and sleep is her drug of choice when she starts sliding down that slippery slope. And she is absolutely the worst medical historian and/or she doesn’t mention things she is feeling or noticing because she knows it will probably mean a trip to ER or to her doctor – that’s been detrimental to her several times since her diagnosis. It’s frustrating as a caregiver, but in the end it’s her choice and decision. Her primary care doctor who saw her every day while she was in the hospital told us that the chemo is not working (from the test results). He has always been bold and outspoken about it which is good for us because we often feel that we are aren’t getting the truth. At least that gives us information to talk to the oncologist about. Lainey – she is still extremely fatigued. We were gone over the weekend so she went to stay at her own house with her cat and husband – I could tell when I spoke to her this morning that she wanted to stay for a few more days so she could sleep. She declined going out for dinner tonight (which is very rare). When she is at our house, while I encourage her to rest as much as possible, I try to get her up and moving around and get her involved in some activities. I’m wondering about those first items on your list … Thanks again for all your support and encouragement. We are in the midst of a major fire here in Santa Clarita, CA – fortunately, we are safe for now but so many of our friends have lost their homes or have been forced to evacuate. Please keep Santa Clarita in your prayers!
I guess the rest of my post from yesterday didn’t make it for some reason. Konnie ended up in the hospital on 7/15 – required removal of 2 plastic stents placed in December after a week of sheer fatigue, no appetite and amber urine last 2 days. Doing a little better but extreme fatigue persists. May be interaction with some of her other Meds. Dr’s ran a lot of cardiac testing – showing decline and other issues with the heart. Will see oncologist on 8/4 – he says no chemo until then – fortunately this a new oncologist with COH who has seen Konnie before but not in the context of review of chemo and options. Otherwise she refuses to go for second opinion outside of COH. So many questions – chemo affecting her heart, other Meds, etc.
It’s been awhile since I posted an update on my sister. She was able to go to Arizona and see her three grandchildren in Arizona for a week in early July. She came back exhausted as expected and slept a lot.
Thank you Marion. My name is Cathie by the way. I read the printed info on the neulasta that City of Hope gave us at the time of the injection but will go on the website for further research. i am going to ask Konnie about a second opinion – when we discussed it before she didn’t want to go for it because she liked her doctors but after these few months it’s becoming more apparent that we should seek a second opinion. She has so many doctors and none of them are associated i … We are at a satellite office for City of Hope and I was even going to suggest a second opinion by one of the other COH oncologists she really likes in Mission Hills where she gets her chemo. But I’m sure her insurance would cover USC too. Thanks for the nudge in that direction.
I’m wondering if there have been any updates to ctwong81’s posts about her mother’s treatment with Keytruda? The last one was about two years ago. Thanks!
I should add that at Konnie’s last visit with the oncology surgeon, the tumors had not grown, but there were more spots on the liver and he again stated that surgery was very unlikely. Continue with chemo as more of a maintenance but would re-visit in 3 months. Since the vancomyocin/probiotics, she has had no fever after chemo treatments.
