Hi all received my last pet scan results last week . This journey started in 2009. The second cancer in 2014. Then mets in 2016. I have been given radiation 73 times ,chemo, hormone tablets and oral chemo 2. I have not received a positive result since the mets was diagnosed. Started with l2 and now have mets in l2,l3,l4,2t ,3t, both scapulae, ribs, both hips, and left arm. Unfortunately it is now the cancer is in my left frontal lobe of my brain. Has anyone on this site experienced a similar progression ???? I just don't know what to think ... Top this all off my onc just went on maturity leave and before she left she ordered another Mri to verify the size of the tumors in the brain. I don't even know who the replacement onc is. Does anyone have any suggestions or could give he direction on what now .
Results from pet scan : Hi all received... - SHARE Metastatic ...
Results from pet scan
I’m so sorry to hear your news. Have you tried Xeloda? I had a friend who got good results with Xeloda for her brain tumor. Will be praying for you to find the answers you need and for you to find the best treatments that will work🙏
So sorry for your recent news! Have you considered adding the dog wormer: fenbendazole? It is based on the Joe Tippens story & shared many times in this forum. Those of us who are on it plus our traditional drugs are getting improved results. You can buy it on Amazon. Praying for a good solution & outcome for you. ❤️🙏❤️
Will be praying for you for success with your new treatment.
I went to Sloan Kettering for a second opinion. They set up a treatment plan and work with your oncologist. Best wishes and lots of prayers. Reenie
Did you go in NYC? I called there and was told they don’t work with my local oncologist. I would like to find out more about this.
Yes. I went to NYC. I live in upstate New York. I went on line and filled out a questionnaire and they called me back and set up an appointment. The oncologist at Sloan said they work with hospitals all over the world. Where do you live?
Please let me know what happens. Please try again.
Thanks Reenie. You can send me a message on my email
Rbethgold@yahoo.com and send me your phone number and I can call you. Reenie
Rochester NY
Great advice as always💕
Omg you poor thing, my heart goes out to you! Where do you live? I have a young wonderful and intelligent oncologist who takes a lot of time with me and my family! When you’re going through all of this, the only real constant should be a reliable and sensitive doctor and his/her staff! I have been blessed with this type of care. I hope and pray that you can be referred to this type of physician! I only wish I could refer you. I have had experience at Dana Faber, and presently at Upstate Medical Cancer Center, they are both excellent in breast cancer! Good luck to you going forward, you are in my prayers❤️
Hello Shelby4,
After the brain MRI, investigate if you can have a gamma knife or cyber knife session. My cancer is not in the bones but rather in the lung and formerly in the brain.
Each hospital that has this machine calls the procedure something different. I like it more than the whole brain radiation because all the tiny rays focus on the exact tumor spot and are supposed to be less destructive to other parts of your brain. It's often a one-day procedure and NYU Hospital has the gamma knife machine. good luck!
Dearest Shelby,
I pray you will get a great oncologist. Remember they all are not equal. I had a terrible one in the beginning of my journey, assigned by the hospital I was in for a broken hip. Luckily after much searching and going to the Moffitt Cancer Center in Tampa i found a new one at a local cancer center that has been wonderful.
I truly hope that you are able to go to a certified breast cancer center as it does make a difference when the doc only sees breast cancer patients.
As others have mentioned targeted radiation to the brain is now very successful. We all are praying for you. Keep us posted.
Audrey
Hi Audrey @Thrifty51: Do you mind if I ask who you saw at Moffitt for your broken hip? I have a broken pelvis bone from a bone met. I live in Tampa. Thank you!
I’m so sorry you have had progression. I hope you find out who your new oncologist is and get those results.
I'm so sorry to hear you have endured so much. I hope things get easier and you get to enjoy some chill time. 
As the others have said, I'm so sorry for your progression. I understand that the targeted radiation therapy is better than whole brain radiation as a couple of people have said. If you don't like the new oncologist, keep searching and/or get 2nd and 3rd opinions until you feel comfortable.
I hope things work out for now. Sounds like you have a lot going on. Give this onco a chance. He may be just as good or you may even feel more comfortable with him. But whatever you do, please do NOT take some dog wormer pill as someone has suggested. I don't care who it worked for in the past and if they wrote a book about it. Nobody on here is a licensed onco even though they may years of dealing with cancer. Take what a DOCTOR advises you to take. For all you know , without telling you, he may be giving your onco a call to inform her of your results if he feels the need to. I would never advise someone to take something and tell them where to buy it without suggesting you talk to your doctor first. Wait until you get your results, see what the replacement doctor says and then go for a second opinion if you do not feel comfortable. Hopefully, it will be good news and you will not even need a second opinion. You will be in my prayers and hopefully you will be getting good news.
HI ladies. I promised that I would keep you up to date on my last pet scan results. I finally have a mri scheduled for tomorrow. This is going to determine the type of treatment I will be taking for the brain mets. Still have not been assign an oncologist and have been given a radiologist appointment 3 weeks from today. A little frustrated to say the least. Once the radiation is over I will start xeloda .Is that the type of chemo they use. For brain mets???? I'm just not sure what to expect. Mbc 4 plus years mets in numerous locations bones only until now ... Has anyone else developed brain mets?
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Scan results
Pet scan results
Scan results - need help to understand
PET scan results
Abnormal CT scan of the head
