PET Scan Results: Thank you dear... - SHARE Metastatic ...

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PET Scan Results

MyMiracle13 profile image
10 Replies

Thank you dear friends for wishing me well before my PET scan last Wednesday. My oncologist said that my results show “mostly stable” with some small lung nodules showing no increase in size but slightly increased avidity. Some showed reduction in avidity but all in all, no increase in size. There was a new carinal node that lit up but was not enlarged. He told me that we will continue with present meds which means that I will still be on Ibrance/Faslodex. What was new though but is not cancerous is that I have developed fibrosis in my left lung which may be due to inflammation or infection. This may be the reason for the increase in CA15-3 as he said lung diseases can make the CA15-3 go up.

What I didn’t tell him was that I will be taking Fenbendazole and that I am now on my 3rd day😄. I take it with Vit E, Vit D3 and Tart Cherry tablets. I am scheduled for tumor marker tests again in 3 weeks as my marker rose 10 points at a time for the past 2 months so I am very hopeful that the Fenbendazole will have worked by the time my blood tests are due.

So far I have not had any side effects from taking Fenbendazole. It’s tasteless. I took it on it’s own the first day but it was like swallowing sand so next 2 days I took it with a spoonful of yoghurt. Watch this space for more updates on Fenbendazole.

I had so much scanxiety before my scan and waiting for the results was even worse. Praise and thank God that’s all over and I can breathe happily again.

Maria

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MyMiracle13 profile image
MyMiracle13
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10 Replies
Mindysooty profile image
Mindysooty

Hi Maria. Pleased that results were good for you. Hopefully the fibrosis will go? Let us know how you get on with the Fenbendazole. Best wishes. Josie x

MyMiracle13 profile image
MyMiracle13 in reply to Mindysooty

Thanks Josie. I don’t know if the fibrosis will go. I think in time they get bigger. I have to ask a pulmonologist if steroids will help make it go away but at this point, I really don’t want to take more meds than I need. I have a radiology induced fibrosis in my right lung and it’s never gone away. It hasn’t gotten bigger though so I’m thankful for that. God bless!

mariootsi profile image
mariootsi

So happy for your good results.

MyMiracle13 profile image
MyMiracle13 in reply to mariootsi

Thanks for the good wishes❤️

lynnhbtb profile image
lynnhbtb

I've been told "stable" is good. So, sounds like a good report. :-)

MyMiracle13 profile image
MyMiracle13 in reply to lynnhbtb

Yes I think so😄. Thank you!

MyMiracle13 profile image
MyMiracle13

Hello Sandra and thank you for taking time to reply to me. I will keep a close eye on the fibrosis and hope and pray that it does not get worse. On the issue of the Fenbendazole, before I met with my oncologist last week, I emailed him articles on Fenbendazole and the COC protocol thinking that we would have a nice discussion about it. When I met with him and asked him if he read them, he said yes he saw them but didn’t read them because those treatments have not yet been discussed in conferences and are not mainstream treatments. He just brushed me off. I desperately wanted to discuss this with him as although my scan shows stable, there is activity in my tumors (more avidity) and my markers have been rising and I wanted to try Fenben to see if it would do something good. I wasn’t prepared to be brushed off just like that so I felt really bad. In any case, I will see what the results are after a couple of months and let him know if it’s working or not. Once again, many thanks for your thoughts.

Maria

LouisaMay profile image
LouisaMay

Hi Maria,

Firstly, great news on your 'stable' results, that's great! Happy for you xxx

I am with you on not telling my onc that I am on fenbendozole. I do not have anything that I could describe as a relationship with him (in fact I get a different one almost every time I go) and every time I broach the subject of something not completely orthodox I get the brush off. They mutter about clinical trials and change the subject as soon as possible. They are limited in what they can prescribe and recommend. For me therefore, the onc has a role to play in my journey, but only a limited one. The rest of the path is my own. I am quite new to fenbendazole - I have been taking it for a fortnight. If it turns out to give me miraculous results, as it does in some cases, I will probably tell the oncs retrospectively as it could have a bearing on onward medication (by that I mean that if the cancer has gone I may be able to come off Ibrance for example). For now, I am definitely shtum! Our decisions are hard enough without being made to feel small/stupid/unimportant/inadequate... (imho) xxx

MyMiracle13 profile image
MyMiracle13 in reply to LouisaMay

Thanks LouisaMay. My feelings exactly! I wish my oncologist would take the time to ask me how I am feeling, my thoughts and fears but no, he just looks at my lab tests and scans and says to continue with current meds as they still seem to be working. I think it’s not because he isn’t nice but it’s because he is stressed. He has quite a number of patients to see, rounds to do then has to go to another hospital where he has more patients to see. Let’s hope and pray that Fenbendazole works for all of us taking it.

Maria

RLN-overcomer profile image
RLN-overcomer

Sister, and yesssssss warrior I pray for continued stability, on your journey to NED. Lord/God AKA Jehovah Rapha is our healer. Amen XoXoXoX

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