Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@jaynep

Thank you so much for posting. I took dose #3 last night of generic anastrozole last night and I’m terrified waiting for the side effects to begin. I had a lumpectomy and a re-excision in April and now face a mastectomy and recon-
struction on June 22-which is laughable-I had a spinal fusion one year ago to the date. It was good to hear a somewhat positive take on the meds. I just hope my hair doesn’t start getting thin. I know that’s vain, but it is what it is.

Jump to this post

My dermatologist suggests people on chemo add biotin and zinc to their regime to help prevent hair loss, or help it regrow healthy and faster, if shed. [I'm not on chemo but take Biotin Forte anyway as it's good for hair and skin. ] There is a plethora of new shampoos designed to help clean out hair-product build-up from hair follicles that give new hair growth a better start. There is the amazing Dry Brush which I wouldn't shampoo without as nothing is gentler. And some interesting new small ionic scalp massagers that are stimulating. Weleda makes some herbal shampoos that have a cult following for being good for hair and scalp. There are a lot of new peptide-based scalp lotions that look promising, building on the success of eyebrow and lash products. I totally get 'hair concern' so hope this helps.

REPLY

We've mentioned the OncotypeDX gene testing for breast cancer patients on this thread before (and how some doctors still are unaware of exactly what the test is designed to help with) and I saw this article that I found interesting. It shows that the test is increasingly shown to be helpful. I found it interesting that more doctors agreed on that test as reliably-valuable than patients' immunohistchemistry.

The reason I found that interesting is that OncotypeDX are sometimes very different from what doctors might assume including a high risk of recurrence for a patient with a grade 0 lumpectomy and negative lymph node biopsies. And a low risk of recurrence for a patient with tissue from a Stage 4 tumor and some positive lymph node biopsies.

I mentioned once before that Oncotype has, on several occasions, had to notify the submitting physician that a tumor classified as non-invasive looked invasive to Oncotype. [I was told that there are some telltale markers of cells very likely to be or become invasive that can be missed by biopsy.]

I hope that everyone with a newly-identified breast cancer that fits the genetic testing parameters can get the test(s) done. Note that physicians disagreed on the value of the test in selecting chemo....which is totally outside the scope of the OncotypeDX anyway. So clearly there needs to be more physician-education about which tests are available, to do what, for patients to be informed of options.

Here's excerpt and link to article:

"Misconceptions Remain on Gene Signature Use in Breast Cancer

'Overall, more than 70% of respondents agreed that identifying tumor intrinsic subtype via gene expression profiling was important in making prognostic and treatment decisions; however, a consensus was not reached on the use of immunohistochemistry.

In addition, most respondents (76%) agreed that identifying breast cancer molecular intrinsic subtypes had clinical utility for prognosis in early-stage HR-positive disease and for identifying patients for whom chemotherapy can be safely avoided (75%). However, in both cases, about one quarter of respondents either disagreed or felt neutral. No consensus was reached on the clinical utility of these subtypes for selecting the most appropriate chemotherapy treatment — two thirds disagreed, while 13% agreed and 17% felt neutral.'"
https://www.medscape.com/viewarticle/973465

REPLY

I thought this was unclear:
"No consensus was reached on the clinical utility of these subtypes for selecting the most appropriate chemotherapy treatment — two thirds disagreed, while 13% agreed and 17% felt neutral."

The Oncotype Dx does tell you whether chemo is of benefit, just to clarify. In my experience some docs rely totally on the Oncotype and some (one out of 4 in my case) also took post-surgical pathology into account.

"Oncotype DX is a test that predicts how likely breast cancer is to come back after surgery and the likely benefit of having chemotherapy. The test gives a score between 0 and 100, and people who score above a certain number are more likely to be offered chemotherapy."

REPLY

Don’t be afraid to get a second opinion. I had a second opinion because I was getting the “run around” from my surgeons office. It was the BEST decision that I made. I saved my life and my sanity. I had people questioning my doctor’s and his nurses processes. I wanted someone else to take over and make those decisions for me, but ultimately, I had to make those decisions myself. They gave me the choice of 2 hospitals and I took the one who could get me in the soonest. That was UW Health in Madison. The minute I made that decision, I was contacted by the Nurse Navigator and immediately I felt like I was being treated as a patient and not an advocator for myself, which by the way, felt so much better. Going into UW Health also made me feel like a patient and that my life and my time was valuable. They showed me the imaging of my breasts and walked me through the process. The doctor I was seeing didn’t show me any imaging. I cried during my appointment and they comforted me. BEST decision I ever made. Trust your instincts! If it doesn’t sound right to you, tell them you want a second opinion!

REPLY
@jaynep

Thank you so much for posting. I took dose #3 last night of generic anastrozole last night and I’m terrified waiting for the side effects to begin. I had a lumpectomy and a re-excision in April and now face a mastectomy and recon-
struction on June 22-which is laughable-I had a spinal fusion one year ago to the date. It was good to hear a somewhat positive take on the meds. I just hope my hair doesn’t start getting thin. I know that’s vain, but it is what it is.

Jump to this post

I took Anastrazole for 5 years with no major issues but the biggest thing you need to remember is that everyone is different and how medication effects you, may be be different from someone else. My side effects happened over time and didn’t last long from the time they started. I had hair thinning but it wasn’t noticeable. My hair stylist would tell me and recommend using certain hair products but again I didn’t notice that much and if you’re stressed, that can also cause side effects like fatigue but I would always remind myself of why I am on this drug and how it will benefit me in the long run. Take care!

REPLY
@ctriervieler

I took Anastrazole for 5 years with no major issues but the biggest thing you need to remember is that everyone is different and how medication effects you, may be be different from someone else. My side effects happened over time and didn’t last long from the time they started. I had hair thinning but it wasn’t noticeable. My hair stylist would tell me and recommend using certain hair products but again I didn’t notice that much and if you’re stressed, that can also cause side effects like fatigue but I would always remind myself of why I am on this drug and how it will benefit me in the long run. Take care!

Jump to this post

Thank you so much. I’ve managed to calm myself down and realize that. I’m having a few hot flashes but nothing bad. It’s a lot to take in. I think after my surgery on June 22 I’ll be able to focus better and I get that behind me. Take care.

REPLY

I have invasive lobullar CA , ER/PR + HERS neg , had SX completed radiation. I am seriously considering not taking anastrozole due to my own health history (encephalitis) in my youth didn't leave me severly impaired but definitely work harder to be average? What is the actual percentage rate of preventing reoccurence ILC (I had total hysterectomy) how do I get this info?

REPLY

I should probably start a new thread, but this is about starting and maintaining AI therapy. I want to ask the group, have any of you had serious issues with dehydration? I mean, it has been serious (like hospital serious) and I have to keep after this daily or...well, the dizziness in the a.m. is the worst. Otherwise I am healthy except feeling 10 years beyond my age of 72. I know some of you opted for brand name versions of the drugs (I'm on Anastrozole currently). Did it make any difference? I've been on this drug since October of 2021.

REPLY
@mdr3

I should probably start a new thread, but this is about starting and maintaining AI therapy. I want to ask the group, have any of you had serious issues with dehydration? I mean, it has been serious (like hospital serious) and I have to keep after this daily or...well, the dizziness in the a.m. is the worst. Otherwise I am healthy except feeling 10 years beyond my age of 72. I know some of you opted for brand name versions of the drugs (I'm on Anastrozole currently). Did it make any difference? I've been on this drug since October of 2021.

Jump to this post

I don’t remember if it’s because of the anastozole or the Prolia, but I try my very best to drink my 64oz a day, that doesn’t include my coffee. And actually, I feel so much better after a glass, it’s like my body is telling me.

REPLY
@mdr3

I should probably start a new thread, but this is about starting and maintaining AI therapy. I want to ask the group, have any of you had serious issues with dehydration? I mean, it has been serious (like hospital serious) and I have to keep after this daily or...well, the dizziness in the a.m. is the worst. Otherwise I am healthy except feeling 10 years beyond my age of 72. I know some of you opted for brand name versions of the drugs (I'm on Anastrozole currently). Did it make any difference? I've been on this drug since October of 2021.

Jump to this post

I found that to be true also, if I was not hydrated enough on a day, I would wake up with the dizzies. I learned this quickly and stayed hydrated and no more dizzies. Dizzy in my world is really bad.
Did you take any other treatment, like chemo or radiation? Did you have the dizzies with any of that?

REPLY
Please sign in or register to post a reply.