Is it Normal to Wait Months to See if Cancer Treatment is Working?

That’s such an aggressive cancer! I’m so sorry to hear it. I don’t know what’s normal but my antigen tests started going down in 2 or 3 months and plateaued after 6 months. I get blood and antigen tests every months and then CT and Bone scans every 3 months. Brain MRIs every 6 months (concerns that cancer from skull has gone to brain). I’m confused by what to expect and have spent way too much time googling to figure out what to do. FYI A couple months ago I started capping and pasting results into Chat GPT and it helps explain what it all means. Then I ask to summarize so that a 5 th grader understands and I copy that and send it to my family. Your doctor is of course the best person to ask if 6 months is a normal amount of time for results but chat gpt might help too.

Thank you for your reply . I’m seeing my dr this week to get the xgeva shot. Iwill discuss it with her! Best of luck to you🩷

How do I get chat Gpt ? It sound like it might be good for me too!

One more plug for ChatGPT. I had a 30 day heart monitor and while I waited to talk with my cardiologist, I ran the results through ChatGPT. it really helped when the PA called to go over the results. Afterwards She asked if I had a med background. Lol. She told me their office uses AI occasionally when they need help explaining things to patients.

App Store. It’s free. Yesterday it helped me figure out what kind of tv to buy, right down to where to buy it. It’s a little creepy but I have a lot of questions about EVERYTHING.

Thank you too for your story. It made me feel better about / understanding all my worthless X-ray and months of misdiagnosis. Nothing like real live people.

We are in a very scary situation. There seems too be more questions than answers! It’s so hard to not get consumed with symptoms ,causes, & prognosis. I try to limit my google time on MBC , as it often overwhelms me or makes me anxious. I try to stay calm and focused.

Every test prior to my diagnosis showed nothing! I went to my family dr for pain in my ribs and she said I must have bruised ribs… needless to say ,I was totally surprised by the MBC diagnosis.

Me too. I Meditate, walk, spend time with grandchildren. I’m feeling a lot less anxious with treatment working, pain disappearing and side effects minimal. I hope the same for you.

I keep busy…. I excercise, go for walks , play the piano, clean etc . those activities seem to keep my stress level controlled !

Such a familiar story to mine! After 3 months, against my better judgement, I went to California for a month to visit my son. I flew back but needed a wheelchair!

Busy helps. And piano! Good for you. I started watercolors, botanical drawing. LOTS of knitting. Keep on keeping on!

Melissa and Susan B, I have MBC in my bones, diagnosed in 2016. Extensive, it's not below my elbows or knees. Ibrance was FDA approved in 2015. The rest of the CDK4/6 have been approved since then. I originally thought my exhaustion was from depression, so my psychiatrist upped my Cynbalta to 90 mg. I told him 'good news' I'm not depressed. Bad news I've got MBC in my bones. He's kept me on Cynbalta since then. It helps with bone pain. I hardly ever have bone pain except in T5 & T6 of my spine. My hips hurt if I walk too much, but stopping makes it better. So I get a wheelchair in the airport. I started with Ibrance and letrozole; then, Ibrance with fluvestrant for 6 + years. Now, I'm on Kisqali and exemestane. I also get Xgeva denosumab every 3 months plus Vit D, Tums/ calcium daily for bones. My bone density is tested every year and is stable. I get PET scans every 3-4 months, blood work every 4 weeks. Knowledge is power. I have a cheat sheet to help me with my blood work. I know PLT means platelets 12 is low normal. It is always below normal. I can't get a pint of blood until it hits 7. At 8 & 9, I get short of breath. You can do this! Hugs🫂

Virginia, thank you so much for your reply. Your story is amazing. Eight years is a long time . You are so strong , and have a great attitude. I hope I see the 8 year mark. Your doctor seems to be on top of things with frequent testing. My dr told me that she would do another Pet scan at the 3-4 month mark, more antigen tests etc. but had decided to hold off????!? I’m not sure why! I am not scheduled to see her until October 28.. so I am going to MSK for a second opinion. While I have accepted my diagnosis, I’m going to fight as hard as I can until I take my last breath! Best of luck to you, stay strong Melissa🌸

Melissa, you got this! I truly believe attitude is the key!

I have MBC to my bones to. I’m post menopausal. Original diagnosis was Hormone positive, HER- in Aug of 2021. I went through a mastectomy with implant & put on Anastrozole. No radiation or chemo was deemed necessary. My Oncotype score was low. I was Stage IIB. By March of 2023 I was MBC. Sometimes I think it was there all along but went unnoticed bc it was so small. The only way this was caught was at one of my checkups my ALK/Phos level was a little higher than normal. That was in Oct of 2022. She told me to come back in 4 weeks for a recheck. I got sick & put off testing until Jan of 2023. My ALK/Phos was normal now but on the high end. My doctor, an amazing women, ran additional blood tests to check I think for enzymes in the blood in the bones & liver bc when your ALK increases it will go to one of those places. It came back pointing to the bones. Then I was run through a series of test bone scan, CT’s, MRI, biopsy & numerous blood tests. It came back breast cancer spread to bone. I was put on Kisqali (ribociclib) every 3 wks, 1 wk off & monthly Fulvestrant shots & am still on those medications. I’ll be getting the Zometa infusion this month for the 1st time to keep by bones strong. The tumors currently are all shrinking, I have 3 of them. Long story short my doctor wasted no time on getting me in for testing & on medication. Yes I’m a strong believer in attitude playing a big role in this horrible disease

I was on anastrazole for 5 1/2 years and cancer still came back. Now I’m on chemo pills. Let’s hope

Treatment timelines can vary significantly depending on the specific type of therapy and individual circumstances, so it's completely understandable to have questions about monitoring schedules. Many patients find that discussing their specific monitoring plan with their oncology team helps clarify what to expect and when follow-up scans or tests might be scheduled. Others in this community may have valuable insights to share about their own experiences with treatment monitoring and how they've navigated similar questions with their care teams.