Considering discontinuing AI therapy.

Lulu52

I was diagnosed with stage 2, class 2 BC July 17, 2016. Started aromasin in early August. No symptoms until 6 months later. As per MO discontinued for 6 weeks then started arimidex. Side effects sooner and equally intolerable, plus an increase in liver enzymes, blood pressure and heart rate. I exercise regularly and (for the most part) I eat healthfully. I have several (well managed with meds) chronic disorders (asthma, hypothyroid, diabetes, depression and scoliosis). I underwent a bilateral mastectomy (with removal of 18 lymph nodes - 2 were involved, 1 extranodal) on tumor side, September 2016, which went very well. No regrets! I also had the Oncogenic test (score = 23), which indicated no need for chemotherapy, declined radiation (only 1% improvement in recurrence)

I am seriously considering discontinuing arimidex. My quality of life is just as important as quantity. My family thinks I'm giving up but dealing with all my chronic issues AND aromatase inhibitor side effects I've had enough! There isn't much research / info on the long-term, permanent side effects of taking AIs for 5 years.

Can anyone out there provide info, support or insight on this

keepthefaith

Luherbeck, I was RX'd Tamoxifen. I dis-continued after 2.5 yrs. It may be more tolerable for you than the Al's. The standard protocol is Al for post-menopausal women, but I have significant bone loss, so Tam was the choice. I agree QOL is important. Hard choice, but it's yours to make. Best wishes.

dtad

Hi Lulu...just want you to know you are not alone. IMO when you have other chronic medical issues to deal with the SEs of anti hormone treatment are much more difficult to deal with. I refused it from the start due to other debilitating chronic medical issues. I was just not willing to compromise my QOL any further. I do several things to lower my estrogen levels naturally. I have lost 30 pounds since diagnosis and exercise daily. I also take several supplements. I would be happy to share more information with you. Good luck and keep us posted

Lulu52

Dtad -Thank you! I'll let you know my decision after I've presented facts and feelings to my family at the end of July. Also have to speak with my oncologist today to determine statistics of recurrence w/o AI's.

Lulu52

Thank you

Lulu52

Keep the Faith - Thank you

Anonymous

Lulu - Obviously, this is a hard decision to make as quality of life is so important , but I wanted to make sure that you were aware that your risk for recurrence on the oncotype test is WITH taking tamoxifen or an AI for 5 years. Trying to get more information from your doctor about without that AI sounds like a very good idea.

pupmom

First, what are "class 2" and " Oncogenic test?" Second, your life, your decision. Best wishes.

Lulu52

Nbnotes - yes I am aware that my risk increases to 26% w/o AIs. Thank you

Lulu52

pupmom - I think I should had said 'grade' 2, which I think indicates how 'aggressive' the cancer appears based on cellular changes. The oncotest is a test done on the actual tumor that looks at the activity ant interaction of 12 genes to determine if chemotherapy will be helpful. My results indicated that with or without traditional chemo my risk of recurrence I'd 13%

wabals

Lulu I am on a 3 month holiday from arimidex. My liver enzymes are elevated and also my ANA and Smooth muscle antibody. Sonogram showed fatty liver. My hepatologist says I need to be off till we figure it out

Joint pain stopped a week after going off it. I truly believe oncologists do not want to know about all these side effects. They are concerned about cancer only.

pupmom

wabals, cancer kills, joint pain, not so much, just saying.

MargoChanning

hi Lulu52, you may want to try switching to Letrozle/Femara before discontinuing therapy altogether. I started with Anastrazole, but experienced severe insomnia right away so switched to Letrozole. I experienced severe dizziness, vertigo and nausea after a year so I went back on Anastrazole but the joint pain and insomnia got so bad I went back to Letrozole, taking it at night so the dizziness and nausea were curtailed. I did not try Aromasin as I was put off by the fact that it destroys the enzyme rather than disables it, plus I'd read that insomnia & other SE's were much worse. But I have read other people's comments that they did better on Aromasin. So perhaps the moral of the story is to try all 3 to see which is the "least worst" for you.

Lulu52

What does wabals mean

wabals

Pupmom did you not see the first part of my post?

With a Masters in nursing believe me I know joint pain in itself can't kill unless it is part of a larger autoimmune inflammatory process like autoimmune hepatitis, which can.

marijen

Wabals, agreed. Here is a FREE BOOK I found the other day. http://primaryimmune.org/patient-family-handbook/

276 pages if memory serves me well.

Have you been to this topic: https://community.breastcancer.org/forum/142/topic...

wabals

Thankyou Marijen

dtad

pupmpm...could have been a little more sensitive. I'm also a RN and wabais is right!

melmcbee

Lulu you totally have the right to decide what quality oflife you should have. I support that but now 5 years later I wish I would have taken that stupid pill. It may not have changed anything but hindsight is 20/20. I hope you think and ask your onc for more options. However I think you have the right to decide. Its your decision.

kira1234

I unfortunately agree with mieclbee yes it's uncomfortable but the alterative.