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Mixed response success stories?

Posts: 293
Joined: Dec 2017

I admit to being a little blue today. I made the mistake of Googling "mixed response chemo"

I shouldn't have done that. I should have known better. The results reminded me of what I first encountered when I Googled "UPSC Stage 4B".

So, of you ladies here, have you any success stories post mixed-response chemos? Past-first-line would apply more to me, but hey ... first-line would be nice as well! Did the alternative treatment work (at least a year ... the more, the merrier)?

(You know I'm pretty blue when my posts are so short!)

NoTimeForCancer's picture
Posts: 2881
Joined: Mar 2013

Oh evolo, I don't have a story for you on mixed-response, it is understandable to feel blue, but I wanted to send you virtual HUGS.

Posts: 307
Joined: Oct 2017

Whenever I feel blue, I read the stories of survivors on inspire.com Ovarian Cancer Board. There are so many success stories! Some achieving 25+ years of no recurrence even after having multiple recurrences in the first few years. Some diagnosed at Stage IV. Some not responding to initial chemo and then responding fully to another chemo agent.  Reading those stories gives me hope. You should check the Valentine's Day and Labor Day roll calls. I read those with tears in my eyes. 

In your case I don't see why you should feel blue at all. If I were in your situation, I would put all my energy to getting Vitrakvi. 

Posts: 293
Joined: Dec 2017

I'm getting the impression they're doing just that. 

This could either be a problem, a temporary setback, or a blessing in disguise. If this treatment has been proven to not work effectively, I may have a case for the Vitrakvi. Looking at the requriements, previously, that step was iffy for me, at best. Now things might have changed.

At any rate, I remind myself that I haven't had radiation yet. If the problem is now mainly in my lower right pelvis, targeted radiation might be an option. However, I would think the doctors would go for the Vitrakvi first. Radiaton is a limited solution ... you can only have radiation for so long. HIPEC can be used for peritoneal problems, though that is more of a process that would be used if others are exhausted. (Yes, my facility performs HIPEC.) Cyber-knife ... a possible option in the future, perhaps. Other chemo combos, such as Gemzar and another agent ... still a possiblity. 

And I know I'm jumping the gun. Other things can cause interior swelling and CA-125 jumps. I had a small jump one scan when my appendix inexplicably enlarged by about one or two CMs. It was fine the next scan. There are criteria to make a formal decision on what this treatment is doing. I have read of radiologists and oncologists interpreting results very differently. My gyno-onco and my med-onco really both have to study the films themsleves.

Patience, I guess! We need to devise a new plan. And no more Googling mixed-response!

Update: The update is in my profile, so I'll just work off that.  CA-125s went up around 37 points this time. It went up 30% less than it did the last time. My blood counts look great for a cancer patient, but my platelets are going down, though still in normal range.

My BP is taking a beating, but between the Avastin and weird test results, I can see why! This is not like test results I see here and elsewhere. Could my form of UPSC Stage 4B STOP BEING SO WEIRD? And if it insists on being so weird, can it continue to be GOOD weird, like it did before?

And that's it. I should do a short guide on CT scan reading. My doctor actually agreed with most of my interpretations.

Apparently, technically, my CT scan is more of an "indeterminate" than a "mixed result". Having a larger nodule stay the same size while nodules RIGHT NEXT to it increase very slightly? (Apparently, too slightly to measure.) Really odd, and even the doctos are puzzled. "Haziness" (which could mean anything from I moved during the scan, to excess gas after a Bowels from Hell IBS-like attack, to "oh, crap, I'm in trouble"?) The upper lung nodule increase is a juxtalpleural one, meaning (in terms that a panicked patient could understand), that it is right outside the wall of my lung, or juuuust inside it.) My port is right near it, and this scan was the first one done post-port.

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