She explained that NED is good but doesn't mean very much - the cancer will always be there. At some time it won't be active enough to be seen, at others it will show up slightly. This is the limit of pet exams.
In my last two peps, two lesoins had slight uptake. More or less the same between the two peps. She says it's stable - so we carry on the same treatment because for her there's no progression and we'll check again in 4 months.
She told me that if on next pet the tumors had higher suvmax, then she'd have radiation on then, but still continue same treament, because it's working on all the other mets - over 10 and very active befor treatment (Suvmax between 18 and 26)
She explained that all the tumors that appear have always been there, those which were'nt described in first pet were obviously too small.
From what I understand, progession is when an existing tumor or several existing tumors grow more than 30% and/or new tumors appears. The new tumors being tumors which had always been there but too small to be detected.
Well that sounds like good news to me In November of 2021, my CT scan showed dots all over my liver but my onco said they could not verify that it was the cancer. We both knew it was though we pretended not go. Come February 2022, definite cancer tumors. She did not change my treatment plan even though this was a spread to a new organ.
June 2022 tumors had doubled in size and cancer "increased significantly" (bolded and in all caps). Took me off verzenio and falsodex injections. Put me on tamoxifen and afinitor. The bloodwork seemed to show it was not working. I told her I do not want to waste time if theses drugs are not working. Had another CT scan on August 23. So I was only on those meds for two months and they were not working.
Tumors were growing quickly and new tumors forming. She then put me on Xeloda (8 pills per day at 500 mgs.) .
First time using them, only took the four and was sick as a dog and back in bed and muscle pain. I am not going to fall back to the days of Ibrance (where I only lasted three month my week off, I was in bed and could not move) and I live alone. No warning from her. I was new to the game. When I told her physician assistant, he gave me a condescending look and told me he never heard of those side effects from Ibrance. After three months, I told her it is like I only live 3 weeks each month. I had no idea that I could have asked for a lower dosage. I was new to all this and had never been sick before.
So yours sounds pretty good. For me, I know its spreading fast and I am not willing to give up any good time on Xeloda. So yours may be very very slowing growing. I do not understand NED (No evidence of disease). It is always there, unless like when on 50 mg. of Verzenio and falsodex injections, I was stable for almost 3 and 1/2 years. It was in my lungs and spine then.
I am assuming stable means the same thing. But that came to an end. I was hoping not to feel side effects. But I guess we are all in different categories, other health issues, age. I do not know how people make it with Xeloda. I expect her to tell me she never heard of anyone having issues with it. I think she goes by some freaking book. I also think I am her only stage iv patient and she is tiring of me. Once I discovered this board, I learned how I have to ask questions, tell her I want lower dosages. I told her finding this board was the best thing for me. I never knew one could even get a lower dosage.
So for me, now I am done. I am not taking a drug that made me feel so horrible. I will not be able to take care of myself . I do not want an aide as I live in a small apt. to begin with. So I am choosing no more treatment, just the pain medication and gabapentin for my spine. Sorry for the long reply, but I tried the meds on Wed., yesterday I decided no more, today cried a bit bc I know what that means but I just want to feel good and normal even for a short time. I do not no dependents or kids or any of that so it is easier for me to make that decision. But your doctor seems to think it is good, so stay with that. Best to you!
I understand those that have children that they want to see get married and have children, or they have grandchildren and they want to be here to see them grow up. I do not have that so it is easier for me than others to make that decision. I am sure, quite possibly, if I had adult children or grandchildren, I might feel the same way. But I don't.
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When your oncologist says. "Right side of skull has the most intense uptake"...
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PET scan anomalies
