Mammograms and Ultrasounds During Treatment

I had a double mastectomy originally so with MBC, I get CT scans of the chest, abdomen and pelvis at first every 3 months and now every 6 months. I'm almost 3 years out. I only had a bone scan in the beginning to look for metastasic (different than a DEXA scan for osteoporosis). I was told I would only have more bones scans if symptomatic. I have complained of knee and shin pain in recent months and was told it's the AI causing it. How does he know? We may have to revisit that issue. They do an initial brain MRI, but only do followup brain MRIs if there are symptoms to suggest an issue. I had an initial PET scan, but no followups. I am currently taking Kisqali and Letrozole. Blessings, Zebra

Zebra, thanks for sharing. Are you getting clear scans now? Just wondering why you are on kisqali 3 years out. Where is/was your metastasis?

During the first year, I had CT-CAP (chest, abdomen, pelvis) and bone scan (bone scintigraphy) every 3 months. After that, every 6 months. I'm in year two. Mets to bones. They never told me that my scans were clear, despite my continuous questioning. I read some MBC people saying they are NED/NEAD (not an evidence of active/disease), I guess my team doesn't believe in that. I pushed the oncologist once and the radiologist gave me a "courtesy call" and told me there's considerable shrinkage on the breast tumors (why on earth would you not write this on the report??). No comment on the bones. On Verzenio (CDK4/6) and anastrozole (AI), and zometa (for bones) every 3 months. To the best of my understanding, you stay on the same drug as long as there's no progression of the disease.

Can bone pain be an adverse effect of Kisqali as well as AI? Are there other side effects … I’m researching as it has been suggested by onco that I “ look into it”. Weighing pros and cons ( do not have evidence of mBC) .

Hi @anjalima - I'm not sure about bone pain and Kisqali. I started taking Kisqali and Letrozole two weeks apart so that makes it hard sometimes to know which med is causing which symptoms except to compare to the list of possible side effects. I first took Kisqali 600 mg and it gave me the very dangerous heart rhythm that only 4% of people taking it get. So we had to stop, wait a couple weeks for my heart to return to normal and now I take 400 mg. I don't have the dangerous heart rhythm, but it is causing paroxysmal afib that I probably get about once a week for about 12-24 hours. It also causes a lot of fatigue. The fatigue with 600 was really severe. With 400 I run out of energy quickly, but can do what I need to do. Letrozole also causes fatigue. And two months after I started on those two meds, I started taking monthly Octreotide injections for unrelated Lung NETS (neuroendocrine cancer)/DIPNECH and that also causes fatigue, diabetes and a host of problems for me. Kisqali and Octreotide both cause my blood pressure and heart rate to be too low. Then lots of other just annoying stuff but tolerable like hair thinning -- all three meds. Not balding, but I wear hats all the time now. I had very thick hair. I had a toxic sun reaction for a few months and couldn't be in the sun for even two minutes without getting burning and a very itchy rash for a month. The dermatologist felt that was the Letrozole, but that issue stopped. Every med affects each person differently so you may not have any real issues with it. Best of luck with your decision and treatment. Zebra

Hi @pb32680pbnew

I had stage 1 BC 10 years ago, BRCA2+ so mastectomies and nothing else. 7 years later, I had a new tumor in my chest wall and pectoral muscle considered MBC, treatable but incurable at this point. This cancer is 3x as aggressive (Ki-67 50%) as the original cancer. They removed the tumor and part of the muscle, but there was a positive margin. My onco also told me because the cancer is sooo aggressive this time, some cells likely got away into other areas of the body before they removed the chest tumor. I had 37 radiation treatments to my chest then started on Kisqali and Letrozole 29 months ago. I'm 3 years out from finding the new tumor. The Kisqali is not only for the chest area to hold any remaining cancer cells there at bay, but to hold any escaped cells at bay. At least that's the way I understand it all. I'm afraid to stop it because once my cancer takes off again, it's so aggressive, I'll be in trouble.

So, at this point the CT scans are clear for visual BC tumors, but the Kisqali and Letrozole are to delay the colonization of new tumors from the cells roaming around out there. I couldn't take chemo because of my pre-x neuropathy and he told me he wasn't sure it would be effective on this new cancer anyway.

I also have 50+ tumors in my lungs due to lung NETS/DIPNECH - neuroendocrine cancer so the scans are monitoring the growth on those. Too many to remove. I had microwave ablation to destroy the largest tumor 2.6 cm to prevent mets from that. My concern is if the BC goes to my lungs, will they even notice or know it's MBC instead of lung NETS? I'm on meds for the lung NETS too. Lots going on.

I also originally asked my onco, just out of curiosity, what would happen if I did nothing with this new MBC tumor. He said the cancer is so aggressive this time, it would be everywhere in months. So, I stay on the Kisqali. As the saying goes, "If it ain't broke, don't fix it." 🙂

I’m sorry you are going through so much, Zebra. I will add your name when I do my qigong cancer meditations. Energy healing is pretty amazing. You might want to check out springforest qigong.com
🙏🏻