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@norah2024 , Are there any oral surgeons (dentists who do a hospital medical residency also called maxillofacial surgeons) where you live? After the extraction of an abscessed tooth I had gum/jaw pain with facial swelling which got worse in spite of oral antibiotics. A facial CT showed inflammation but no soft tissue abscess so the oral surgeon did a jaw bone biopsy and debrided most of my mandible. Pathology found osteomyelitis rather than the differentials of bone cancer or osteonecrosis. Initially I was relieved until he told me only people with cancer or HIV get this jawbone infection. That was how my breast cancer was diagnosed. I had to take IV antibiotics via a PICC line for a month to clear the infection before I could have surgery. The only other people I have heard of with this diagnosis have metastatic cancer.

The large increase in CRP seems to indicate acute infection/inflammation. Osteonecrosis which is a SE of Xgeva probably wouldn’t cause such a high level.

Since you mentioned a cough and weight loss, has your pulmonologist ordered a chest CT to check for pneumonitis/ILD? This is a possible SE of Afinitor. I had these symptoms as well as anemia and shortness of breath on exertion. Since x-rays showed increasing consolidation I was treated for pneumonia with three different antibiotics but things continued to get worse. A CT showed pulmonary fibrosis caused by radiation; I had progressed past the pneumonitis stage. Treatment is steroids and oxygen if needed.

Mouth ulcers are a common SE of Afinitor but there can be other causes. I get them because of impaired immune function and use an oral chlorhexidine rinse which helps clear them. If dexamethasone (a steroid) isn’t working it might be worth trying that antiseptic/disinfectant which destroys microbial cell membranes.

It’s often hard to figure out the root cause of a symptom. I also had drug induced liver injury (lovastatin, not Afinitor) which knocked me down badly for over a year and let other medical problems develop. There are no easy answers but maybe one of these ideas will help. You have had such a tough time recently; you deserve a break.

@tbos805 and @mary625 - I go to Fred Hutch in North Seattle, as I don't like going further into the city to South Lake Union Fred Hutch or Swedish, although I think Swedish is great.

I was on Verzenio, fulvestrant, and Zometa for a little more than two and a half years, and I always got bone scans and a CT of abdomen and pelvis every 3 months. I've never had a PET scan, and I don't know if they do them at my location. I've heard that most drs prefer the bone/CT combo over PET. My sister in law had a different kind of cancer and she got PET scans at Swedish Cherry Hill. I think sometimes the choice is disease specific and also dr preference specific. My oncologist also watches tumor markers and the general situation, and then combines all these things (scans, labs, personal comments/feelings, tumor markers,etc.) to come up with a treatment plan, so it does vary a lot between people.

Mary, that's about all I know about this, and I hope it helps in some way.

@mary625

I have only bone mets so far and have been on Kisquali/Fulvestrant/Xgeva for a little over 3.5 years. I have never had a PET scan. For the first 18 months my CTscans and nuclear bone scans were every 3 months. They slowly stretched to being every 6 months.

Here's some interesting news for those of us with bone metastases, which can be mysterious on the scans. Are they healing or not? This new imaging system is supposed to become available in a couple of years:

https://ecog-acrin.org/press-release-an-ecog-acrin-imaging-study-solves-a-long-standing-gap-in-metastatic-breast-cancer-research-and-care-accurately-measuring-treatment-response-in-patients-with-bone-metastases/