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Topic: Severe Reaction to Aromatase Inhibitors

Forum: Hormonal Therapy - Before, During, and After —

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Sep 24, 2021 08:34AM

Cargill2103 wrote:

I was diagnosed 4/30/21 with Invasive Lobular Carcinoma, I am not BRCA 1 or 2 or any family there of. However, I was advised high risk because I come from undefined family of breast cancer survivors. Great Aunt had first breast at 40 then second breast 50 and died with lung cancer at 80. My mothers side of family. She got cancer at 67 died from heart attack 68. Her sister older got at 67 one breast and 74 second breast. Died bone cancer 90/ and alzheimers. Sister got at 47 and has been clean for 20 years had both breast insitu diagnosed in nipples. My breast cancer was seen april 2019 as undefined cyst by radiologist who did 3-D mammogram april and december along with ultrasounds. Then got MRI done june of 2019 and still they said nope not cancer. I had pain in fall of that year in right breast and ob gyn said all she felt was calcified milk duct. I saw Breast cancer surgeon who said it was so small he wasn't worried in July of 2019.

Pandemic 2020 I got into see American Radiology for third mammogram in year and yeah its finally diagnosed with core biopsy that no one would do for me in 2019. but not in the lobular area but in-situ they say. MRI reveals nope its spread....I had 8/11/20 bilateral mastectomy cancer only in right breast but opted for both to be removed, thankful not in other breast. Axillary Nodes 17 removed after first 5 had cancer but next 12 did not. Vascular involvement. Did AC to T chemo for 16 infusions over 4.5 months. Then two months off while PT to move shoulder muscles, and orthopedic surgeon says not frozen its necessary to have shoulder replacement, one day...somehow radiologist manages to still get my radiation done under arm and right breast for 5 weeks 5 x a week. Now anastrozole is rx advised to take, extreme reaction as time goes on after 5 months blisters, hives, rashes, headaches, blood blisters, orthopedic pain to the extreme, stiffness, bone pain, and clicking in joints, felt like 90 years old. Oncologist has taken me off and will see her end of October. I am considering going off permanently rather than trying another type.

Online calculator helps predict risk of hormone receptor positive breast cancer returning elsewhere in body says if I survive 5 years I get two more possibly before reoccurence.

I am ER+, Progesterine +, HER2 negative. CTS 5 put in tumor size 4 since they round up from 3.5 tumor grade 2, 69 age at onset of discovery, nodes 5 involved. CTS5 score 3.57 5-10 year risk 7.6% CTS5 risk group intermediate.

Predict Breast Cancer NHS says five years no difference in survival without hormone therapy. Only at 10 year mark does it go up 2% if I have done 3rd gen chemotherapy its 76% survival and 78% if add hormone therapy...

Not sure after my extreme reaction its worth it. If I only am predicted to have maybe 7 more years to live, why torture myself?

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Sep 24, 2021 09:17AM Beesie wrote:

Is your tumor size 3.5mm or 3.5cm?

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Sep 24, 2021 11:00AM Cargill2103 wrote:


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Sep 24, 2021 11:45AM GG27 wrote:

I had pretty severe side effects on some AI's, not as bad as you, but pretty bad. My MO indicated that she had other patients who had similar experiences & she prescribed a different brand. It was a world of difference, she says it's likely the different fillers causing the SE's, quite often not the actual drug. You may want to try that? good luck.

Dx 10/2008, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 3/9 nodes, mets, ER+/PR+, HER2- Surgery 1/8/2009 Lymph node removal; Mastectomy: Left, Right Chemotherapy 2/1/2009 Other Radiation Therapy 7/5/2009 Whole-breast: Breast, Lymph nodes Dx 5/14/2014, IDC, Both breasts, Stage IV, metastasized to bone/liver/other, 9/20 nodes, mets, ER+/PR+, HER2- Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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Sep 24, 2021 04:51PM - edited Sep 24, 2021 04:54PM by Beesie

If your tumor is 3.5cm, you need to redo PREDICT and the CTS5 calculator. Both measure tumor size in millimeters. For a 3.5cm tumor, you have to input 35 as the tumor size. The results of both models will be significantly different than what you posted above. Your risk unfortunately is higher and the benefit from AI is much greater. With PREDICT, I recommend viewing the results as Icons. That's the easiest and clearest way to see how many lives are saved by each treatment.

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Sep 24, 2021 08:38PM muska wrote:

Cargill, exemestane has a bit different mechanism of action and some find it easier to tolerate. Talk to your MO about it and other options before giving up

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
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Sep 25, 2021 07:38AM Cargill2103 wrote:

Thank you she called me after I wrote to her email address and said to go off of hormone therapy for now and she will see me at my 4th month appointment 10/25/21 and we will discuss possible alternative treatments.

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Sep 25, 2021 07:41AM Cargill2103 wrote:

Thank you for the information about mm vs cm that does give me a less positive outcome prediction...sadly. But I am a realist ...knew that I can either beat the odds or succumb to them...I think I will stay positive and keep fighting.

My doctor wants to discuss alternative treatments meaning I'm sure trying a new aromatase inhibitor. with this new information about mm I guess I don't have any choice but to try again.

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Sep 27, 2021 09:48AM KateHanni wrote:

I tried Anastrozole and from day one had every side effect by day 7 was pulled off and put on exemestane generic. For 3.5 weeks I was great then I hit the "great depression" that can come with these, was pulled off for 2 weeks then put on brand Aromasin at my request and directly related to the wonderful comments both here and in the UK on their blogs about not all generics or brands behave the same way in different bodies. Right now I'm back on for a week of the brand Aromasin and the only side effect so far that worries me is some slight joint pain and extreme fatigue. Other than that I'm able to tolerate and will continue and see if I can find ways to be less fatigued.

I'm not much of a water drinker but my Onco said drink at lest 1/2 gallon of water per day and get daily cardio which I'm doing and it is helping with both of the side effects I'm having!

Dx 1/25/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (DUAL) Radiation Therapy 4/18/2021 Multi-catheter: Breast Radiation Therapy 4/18/2021 Hormonal Therapy 5/30/2021 Arimidex (anastrozole), Aromasin (exemestane) Surgery

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