Aromatase Inhibitor and just walking away.

SJI

I decided to not take Tamoxifen - AIs weren't possible due to other health issues even though I am post-menopausal. It was a tough decision. Just saw this article today which made me feel better about my decision.

Invasive Lobular Carcinoma Cell Lines Are Characterized by Unique Estrogen-Mediated Gene Expression Patterns and Altered Tamoxifen Response

http://cancerres.aacrjournals.org/content/74/5/146...

"Our observations that ER drives a unique program of gene expression in ILC cells correlates with the ability of tamoxifen to act as an agonist to induce growth in these cells. This phenotype mimics recent clinical observations that a subset of ILC tumors may be tamoxifen resistant. Genes regulated by tamoxifen as an agonist may serve as powerful biomarkers to identify de novo tamoxifen resistance, thus we envision that a neoadjuvant window trial may be an ideal setting to further examine tamoxifen resistance in patients with ILC."

corky60

I took Aromasin for nine months and suffered SEs--knee pain, trigger fingers. I switched to Tamoxifen and had terrible GERD. I had to take Prilosec twice per day. Sleeping was next to impossible. My oncologist said that Tamoxifen didn't cause GERD but when I quit it after five months the reflux stopped too. So now I take no hormonals. Post-menopause and had terrible urogenital atrophy with UTIs 4-5 times per year. My naturopath recommended compounded estriol suppositories, 2-3 mg per week. I use 1.5-2 mg per week and voila, no more UTIs. My urologist, who also provides the Mona Lisa Touch, said that even if I had the Mona Lisa Touch treatments I would still have to use estriol to treat the urinary symptoms.

I suppose I am living life on the wild side but I have several other health issues to deal with. So I gave up all of the extra BC treatments.

dtad

corky60...we all have to make our own decisions about treatment options. Those that experience QOL issues have a much different situation than those who don't. I just do not understand why the docs that prescribe these drugs deny the side effects. Maybe if they could have an open discussion with us we would be more willing to work with them to find solutions. Good luck to all navigating this complicated disease.

Moderators

Indeed, this is a very sensitive issue, and each person needs to make the most informed decision for his or her unique situation. There is no blanket right or wrong. And here is a place to safely share your own experiences and decisions, judgement free.

Each physician is also different in their doctoring - some more informed/vocal about the drugs, side effects, benefit/risk ratio. Breastcancer.org always recommends getting a second opinion, or even changing treatment teams altogether (if possible) in instances where you are clearly dissatisfied with the conversations or treatment options provided.

We have a great deal of information on our site, which has been medically-vetted, and could prove helpful in making informed decisions. (main site: http://www.breastcancer.org --- use the search box to find information most quickly).

Thinking of all of you as you navigate all these difficult issues. We're here for you!

p.s. Lovely photo, wabals!

wabals

Thank you Moderators

snowbird1943

HapB. I am afraid I don't have an answer to your BP question but cannot find the post on Predict Calculator and the website. I had to give up the Al as the side effects at my age were just too great and I was missing out on too much. Good luck but like you I think a 1% improvement on your recurring stats is pretty minimal. I am stage 3 with some lymph node involvement so this was a major decision for me. After 6 weeks I am beginning to feel some improvement, but wonder if anyone has any idea how long it takes all of the side effects to go away or if they ever do?

snowbird1943

Thank you so much, KB870, for posting those websites. It made me feel a lot better having to stop the Arimidex (did try two others as well) as it appears at my age that I might live 6 months longer if I took them. Interesting that this website is over a 15 year period where most are 5 - 10 years.

scaredashell07

so this website link states that I have a 3% increase in survival after 10 years. But why does my doc say it increases my rage by 30%?? I'm so confiesd

scaredashell07

my statistic for survival is completely different from one link to the other. And my doc said hormone therapy would increase rate bY 30% but the calculator says 3%. I'm donconfued

twells

My oncologist told me last week that my chance of recurrence without any Aromotase Inhibitors (Arimidex, etc.) is 30% in 10 years. Using them makes it a 15% chance of recurrence. In other words, you have to decide if gaining that "15% " is worth the side effects. I know there is other research out there predicting even less likelihood of recurrence in 10 years, but I think the number you were quoted was standard. But it is always important when an oncologist quotes you the chance of recurrence to ask "and what is the chance if I do whatever it is you're suggesting I do". That's the percentage that's essential to your decision, it seems to me.

I had bi-lateral lumpectomies a couple of months ago I was Stage One with 2 20 cm tumors, ER+, PR+, HER-, node negative, and had no radiation or chemo after surgery because of my age at diagnosis. I was 86. 87 now. I have decided not to take anything. To diminish my current overall health in any way by taking AIs is not worth it to me, just to extend my chance of living to 97.

But my advanced age at diagnosis probably puts me in a special category. My husband died 5 years ago, all my children are grown and doing well, even my last dog died 3 years ago. I have no more responsibilities and my financial affairs are in order.

Brutersmom

Scaredashell, The 30% versus the 3% is best explained 30 is the reduction of your risk factor. For example it your risk or recurrence is 10 % taking a aromatase inhibitor would reduce your risk by 30% to 7%. This is an absolute reduction of 3%. When I started having major issues on the med one of my Drs. said your benefit is only about 4% so you need to decided if it the side effects or worth the benefit. The MO said it would reduce my risk of recurrence by 40%. When I challenged him he admitted the reduction translated from 16% to 12%. I went through the same thing with deciding to do chemo and not to do chemo.

dtad

Brtrersmom...thanks so much for the explanation! However, why would your MO tell you it was 40 percent? We really need our docs to be honest with us so we can make the right decisions. This seems dishonest to me. Most people are not as astute as you. Good luck to all.

Brutersmom

My second opinion doc was the one who helped me have a better understanding. I think there is big money in cancer care especially for early early stages. My first MO, I fired him later, used statistic to scare me. A second opinion and other members of my medical team were much more supportive and helped me make educated decisions.

SRFLORIDA

Hello,

I have been on Arimidex for about a year and a half. I was able to tolerate it until a few months ago. I have a history of Migraines once in a while. In the last 2 months I have had an increasing frequency of Migraines. It has gotten to the point that I cannot function. My doctor suggested I stop for 2 weeks and see if they stop. It has been 6 days and I feel so much better. Has anyone experienced bad migrains after being on it for a while? My doctor also suggested that my system may restart if I go back on it. Any feedback or experience would be appreciated.

Brutersmom

SRFLORIDA, I stopped Arimidex at about the year and a half mark. I did not get migraines but my quality of life went to about zero, one or two hour a day of sleep, panic attacks, vision issues. I stopped Arimidex and immediately saw improvement. I tried going back on the meds and switched to Letrozole only to have even more side effects. I ended up stopping everything. Doing much better.

wabals

Brutersmom,

I am doing the same. Took anastrazole for 16 mos., then arimidex, then femara. Elevated liver

enzymes, joint pain, swelling, weight gain. Not worth it

Diagnosed at 72.

sosplace

I have had a bilateral mastectomy 1 year ago. Since then I have been on arimidex, femara and tamoxifen with terrible side effects. Now my Onc Dr. wants me to try aromasin. Cost with insurance is pricey and side effects look to be very similar to the three I just took. After reading many of these post, I feel so negative on even trying this medication. Any suggestions, feedback of what you dealt with would be appreciated. Thank you.

ml143333

I recently switched from Femara to Aromasin and feel good. When on Femara, I had joint and foot pain, felt 100 years old, had trouble getting up when sitting, gained weight, had no initiative and was depressed. I finally talked with my MO and he put me on a 6 week hiatus from everything which allowed the Femara to get out of my system and I felt wonderful!

I started on Aromasin about 3 months ago and so far, I feel good except for the pain in my feet but I'll take that over everything else and the depression. I have dropped about pounds but have a lot to go.

If you google discounts for Aromasin, one does come up where you can get the medicine at, I think, $4. Your prescription must be for Aromasin though and not the generic name.

Jennie93

After reading the latest research, I’m quite comfortable with quitting at the 5 year mark. These drugs have made my life a living hell and as there is no overall benefit to continuing on, there is no way I would do it.

Can’t remember if this one was posted here or not but just one example:

http://www.practiceupdate.com/journalscan/40963/3/1

couragement

Hello strong friends, I wanted to post some research that I have found to be very interesting and I am following the program they talk about: Time Restricted Feeding. I find it very doable and am fasting about 15-16 hours a day, even though for breast cancer risk reduction they advocate 14 hours. I am not taking AI's and never started them, due to my severe reaction to all meds. I did make it through chemo and herceptin/perjeta (although they had to give me Gemzar as I couldn't handle the Taxol or Carboplatin). This program (have been on it for 6 weeks) feels like it gives me a sense of control in my life and I'll take it!

Check it out and see what you think.

All my best to everyone.

May we all be well.

dtad

Really interesting! Thanks for posting. 40 percent, wow!

Jennie93

Very interesting! I read a book awhile back called “The 8 hour diet”, basically the same idea, he says most people are eating the whole time they are awake (16 hours) and fasting only while they are asleep (8 hours), and gives a lot of reasons why we should swap that around and eat only during an 8-hour window,then fast for 16 hours. It’s mainly about weight loss, don’t recall anything about cancer, but it only makes sense that it would be good for that, too. I have tried it, and it’s not really difficult (was never a breakfast person anyway), of course, don’t lose an ounce, as long as I’m on the AI, but maybe when that’s done!

marijen

Jennie, in the video they say that we are most insulin sensitive in the morning, so the two meals should be breakfast and lunch or breakfast in dinner. Not to skip breakfast

Jennie93

Yeah, I saw that. The 8-hour diet book said it didn’t matter when the eating period falls, as long as you fast the other 16 hours straight. It will be interesting to see how the research shakes out. For me, I’m just not hungry in the morning, so why eat? Eating between noon to 8 is an easy thing for me, but everyone is different.

Germangirl16

I have been on either arimidex or letrozole for 14 months, and am ready to hobble away. I went from being a very active 66 year old, to someone who can barely walk 2 blocks. My dexascan now shows lumbar scoliosis that I did not have prior to this. Feel like my spine is collapsing! The pain can be excruciating, and damage is permanent. I see my MO on Monday. Not sure how he'll respond to my decision. Will let you know.

snowbird1943

Has this chatline been cancelled as there have not been any new postings for a very long time?

obsolete

Updated links ...

Table 1. Summary of evidence for therapy with the aromatase inhibitors anastrozole, exemestane, and letrozole for postmenopausal women with ER-positive breast cancer

Table 2. Risk of breast cancer death and breast cancer occurrence 6 to 10 years after diagnosis if disease-free after 5 years of tamoxifen.

https://www.bcmj.org/articles/new-guidelines-treatment-early-hormone-positive-breast-cancer-tamoxifen-and-aromatase#Table_1

https://www.bcmj.org/articles/new-guidelines-treatment-early-hormone-positive-breast-cancer-tamoxifen-and-aromatase

edited to add ... [Note: the above updated links are posted at the request of other member's request regarding earlier post]

obsolete

Aromatase Inhibitors & Breast Cancer Therapy - Milestones in Oncology

... Dr. Bruce Chabner hosts Dr. Paul Goss as they discuss Aromatase Inhibitors and their role in the treatment of breast cancer.

https://www.youtube.com/watch?v=PNbIfbMIM94

edited to add... [Note: The above video link is being re-posted at the request of several members' private requests as a result of prior YouTube video having been removed]

dtad

Hi everyone...I'm not really sure why so many feel the need to chime in when someone says they are walking away from anti hormone therapy. Do they really think that it was an easy decision? Do they really think its wasn't well thought out? Do they really think they don't know the stats? We all have to make our own informed decisions. We all have completely different circumstances. We need to honor and respect all individual decisions made. There also needs to be a safe place on this forum for those who have chosen not to do anti hormone therapy without being chastised or guilted. Good luck to all navigating this disease.

obsolete

Patients need exposure to pros & cons, both ABSOLUTE and RELATIVE A.I. risk/benefit data … not exclusively the latest "double-digit" trendy "relative" benefit % data and rhetoric often cleverly "marketed".

There's never a good reason to censor or politicize medical risk/benefit data presented in a "safe place".

By the way, I "walked away" twice... from Tamoxifin (doctor's orders w/3% absolute benefit) and again from AI's (w/3-5% absolute benefits) due to SE's & other medical complications.

We all face enough emotional mongering, intimidation, bullying and misrepresentation by the corporate media establishment in our daily lives. Daily stress, anxiety & resultant micro-aggression is evident on this thread.

For me, local/regional recurrence is not a timely measurement of AI "success". There was no estrogen monitoring.