CommunitiesHR+ HER2-Experiences with Oncoscore and AI Side Effects?

Experiences with Oncoscore and AI Side Effects?

LH

Community Member

a year ago

Has anyone looked at their oncoscore chart? I stopped letrazole due to increase in BP and heart rate. However I have heard radiation can mess with your hear. Onco said ok to take 2 month break. In checking my oncoscore, those over 50, low score, the chance of reoccurring ca was only a few percentage points with taking AI and not. I'm still researching. My BPnis lower again as is my heart rate. I also had a terrible cough and SOB with fatigue but who knows if it's AI or Radiation. #Ihatecancer.

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accepted answer

Accepted Answer

Cancer treatment side effects can be so challenging to navigate, especially when multiple treatments might be causing similar symptoms. Many patients find Oncotype DX scores helpful for understanding their treatment options and weighing risks and benefits with their care team. The symptoms mentioned - blood pressure changes, heart rate issues, cough, and fatigue - are definitely worth discussing thoroughly with your oncologist, as both hormone therapy and radiation can sometimes cause these effects. Taking time to research and advocate for yourself while staying in close communication with your medical team shows great self-awareness in managing your care.

3+ patients found this helpful

PC

Community Member

6 months ago

Hi Louise I'm 53, menopause Stage 1, IDC, Er+, Pr+, Her2-, right breast lumpectomy on April 30, 2024 pathology results did show some Dcis, tumor size 1.9 cm, Grade 3, 2 lymph nodes removed from underarm pits negative for cancer. clear margins, Oncotype score was 30, greater than 15,% chemo benefit. I've just finished my 3rd round 4 of TC chemotherapy on September 19, 2024.My final chemotherapy on October 10, 2024. I have an appointment with my Radiologist Oncologist on September 30, 2024 for a consultation to discuss radiation treatments. My medical oncologist hasn't prescribed any of the hormones therapy medication Tamoxifen, aromatase inhibitors until my chemotherary is finished. Thank you for letting us know about your experience taking Letrozole.

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LH

Community Member

6 months ago

You're welcome. My fingers pick up extra keys lol. In addition to pulmonary I think we may do an echo of my heart to make sure it's not that and just the pills. Everything has me second guessing.

JU

Community Member

6 months ago

The AIs gave me too many side effects and I’m not taking tamoxifen either. I wonder what the estradiol count is when on AI? My onc score was 23 and I didn’t do chemo, just radiation

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LH

Community Member

6 months ago

The AIs reduce the levels of estradiol

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BG

Community Member

6 months ago

I am taking anastrozole. Only side effect is joint aches in the morning; it gets better once I move around and take a walk. I take calcium supplements with vitamin D. Once score is 15.

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CN

Community Member

6 months ago

I just finished proton therapy and in 2 weeks I start anastrozole and Verzenio. I was taking tamoxifen but with my history of endometrial cancer my oncologist switched me to anastrozole. My oncotype score was 22.

JS

Community Member

6 months ago

Oncotype 2 TWO!!!!! 9 years ago... after a few months of roller coaster AI (tried 2 different ones… I was 61 and only a few years post-MP) I decided to forego AI. Did the math. Two years ago they found (quite by accident) that I had metastatic BC and for the last year I’ve been on Kisqali and Letrozole with very good success (2 bone scans show healing, and affected lymph nodes shrunk to 1/4”). Only just heard about this test that detects cancer before it is symptomatic… wish I had known about it. Ask your ONCO about testing the blood for signs of recurrent breast cancer through Signatera testing. So while I do not regret my decision to forego AIs and opt in for quality of life, I wish that I had been aware of what screening tests I could do … other than the standard treatment of manual exams by your breast cancer surgeon. For example, I could have had MRIs of my regional areas and even sought a full body CT and bone scan… let’s say at 5 years and every 2 years after. I am grateful that we caught the MBC early — 2 bone mets + 3 lymph nodes, but I am still incredulous that more isn’t done to screen breast cancer patients, given how common it is for breast cancer to recur. Bear in mind that my luck swings wildly to the extremes… and part of that is I am that person that makes up the small percentage of recurrence, or failure, or whatever — balanced with we keep finding the cancers early…. Best of luck on your journey. Knowledge is power. Advocate for yourself. 😘😘😘

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LH

Community Member

6 months ago

I just had second signatera done and it was negative. PTL

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JS

Community Member

6 months ago

@louse h Help me understand, while undergoing therapy you have negative Signatura tests?!? How does this influence your ONCOs plan of treatment?

KA

Community Member

6 months ago

I haven't been offered any of those screening tests. I also decided to forego the AI's, prescribed anastrozole. Haven't taken them. I'm 65 with osteopenia with potential for osteoporosis, I did do 21 radiation treatments, completed end of August. I just failed a EKG for a colonoscopy. Waiting to see a Cardiologist this week for explanation and possible heart issues. I too now have a raspy cough and get winded while walking, outside doing yard work and horse care... I'm concerned about possible radiation damage... What next? My onco score was 21. No lymph nodes were positive, dc positive left breast stage 1, tumor grade 3 due to size, lumpectomy completed in May.

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MU

Community Member

6 months ago

Good that your BP and heart rate returned to normal. I just learned that radiation can affect your vascular system. Have swelling and soreness in my left elbow - was worried I might be developing lymphedema. Had ultrasound and all ok vascular wise. Still no answer on the cause of swelling but read online that it can be caused by Arimidex. Have been on it for nearly 11 months now. So many side effects.

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LH

Community Member

6 months ago

Jenny S. I finished surgery and radiation then had signatera. They did another signatera 3 months after 1st. Not on any tx

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KA

Community Member

6 months ago

Hi Louise, I'm 65, I had radiation treatments 21, no chemotherapy just lumpectomy, 3 nodes removed (no cancer in nodes) , Onco score 21, stage 1 left breast, tumor grade 3. I'm now having a heart problem and a raspy mucus cough. I am not taking the AI's, My oncologist prescribed Anastrozole. My Bone density determined I have osteopenia with potential to develop osteoporosis. My new Cardiologist has me going for additional testing with Vascular. My colonoscopy was cancelled based on my poor EKG. Prior to my diagnostic mammogram in April 2024 I had no specialists, now have 6...

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JS

Community Member

6 months ago

Oh Karen — that last sentence says it all. It sounds like you have good people (docs) around you, or that’s what I would hope for you, as you go through this wild ride of testing and experts and trying solutions to problems that 6 months ago weren’t even an issue. That’s a lot to deal with, and I’m guessing consumes a lot of your time and mental energies. Hang in there. Best of everything, luck included, to you and your team. Luck?!? YES, everyone deserves at least one lucky break along this journey. I think you might be due one lucky break, if not two.

KA

Community Member

6 months ago

Thank you Jenny S. I've learned some great relaxation techniques from a holistic therapist. Meditation, self hypnosis and she is fighting HER2 positive metastatic breast cancer so great support with understanding, conversation and support.

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AW

Community Member

2 months ago

Does the signstera show MBC?

LH

Community Member

2 months ago

It shows any breast cancer cells.

CA

Community Member

2 months ago

Cancer treatment side effects can be so challenging to navigate, especially when multiple treatments might be causing similar symptoms. Many patients find Oncotype DX scores helpful for understanding their treatment options and weighing risks and benefits with their care team. The symptoms mentioned - blood pressure changes, heart rate issues, cough, and fatigue - are definitely worth discussing thoroughly with your oncologist, as both hormone therapy and radiation can sometimes cause these effects. Taking time to research and advocate for yourself while staying in close communication with your medical team shows great self-awareness in managing your care.

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