My aromatase inhibitor experience

I'm not Stage III, but I have had minimal problems on Aromasin. 80% of women don't have significant difficulties on Als. Very sorry you were one of the 20%.

Weesa.....so well said.....I'll add my story...I too was fairly strongly ERPR+...in the 80's%....Bilat with axillary dissection, TAC chemo, started AI's at the same time I started my 25 rads....First Arimidex....horrid joint pain, especially in my knees and my knuckles and .by 5 months on it, I had developed severe CTS in right wrist (and starting to have nerve damage) and moderate in left wrist ...no choice but to do surgery on my right wrist....hand surgeon said it was some of the worst damage she had seen....while waiting to do left wrist, I had my exchange surgery and subsequently tried Femara (worse than Arimidex) and then went on Tamox...while on Tamox, the CTS went away in my left wrist.....I called Astra Zeneca and found out that CTS is a side effect of Arimidex.  Oncologist  gave me a few week break and I started on Aromasin....joint pain not as bad, but mood, memory, attention, insomnia and other cognitive issues....By a year after going on Aromasin, I had awful deQuervanes tendonitis in both wrists...I could barely hold a pen and write,keyboard,  couldn't lift more than dinner empty dinner plates.....2 shots of cortisone in each wrist (as well as splints) provided no relief......Surgery on both wrists.....again, hand surgeon said it was some of the worse inflammation she had ever seen....By now, I've been on AI's for 2+ years...I kept  asking to quit but continued to endure based on the advice on my oncologist....Mean while, the cognitive, insomnia, mood and memory side effects are enduring and affecting my QOL in every aspect, but I kept on enduring....Finally after another 1 1/2 years, my oncologist gave me a 2 month break.....this was after enduring 3 1/2 years of side effects....I never went back on the AI's and it is going on 4 years and I'm still NED (at least I was in September)....I see my oncologist in March.....By 2 months off the AI's the side effects were starting to go away and my QOL was improving....I just couldn't endure the side effects any longer...it was taking too large of a toll on my life....Unfortunately, I had almost all side effects (other than cardiac) that are listed for AI's.  My oncologist  would love me to go back on them, but that would mean starting the 5 years (or longer) all over....I've made peace that G-d forbid, the beast returns, that I've done everything in my power and gave it the best fight.....That said, please remember that some gals have no side effects at all, but I wasn't one of them!!!

Weesa & Karen,

Thank you so much for the infomation about your experience with AI's.  Like you both I was very ErPr+ 100% & 88%.  After ACT chemo and rads, my onc started me on Arimidex.  I was ok for awhile but the the severe joint and bone pain started. It was so bad my onc scaned me for bone mets.  I stayed on it awhile at the urging from my onc, and continued with the painful bones and severe joint and hip pain. I was also experiencing terrible and painful vaginal atrophy, so my onc switched me to Tamoxifen. That was ok at first, and did help with the vaginal issues, but terrible hot flashes, mood swings, but what really did it  for me was the huge weight gain from Tomox. As active as I've always been I couldn't lose the 30 lbs I gained on the Tamoxifen.  I told my onc I wanted off of it so he asked me to try Aromasin. I started on that and it seemed good because there were not side effects at first. Then more weight gain, severe joint and bone pain.  I did a lot of walking to keep me limber, but one day while gardening my ankle gave out and I fell on the sidewalk on my side, and fractured my ribs from 5 thru 7.  I never fall, but this was so out of character for me.  Later on that summer I was walking and my knee totally gave way in severe shattering pain, and I went down. After arthroscopic surgery, PE, and finally total knee replacement last year, my knee pain and disability was resolved.  I had gone off the Aromasin prior to the surgery, telling my onc I would go back on it after the surgery for my knee.  That was last January. I decided I would not go back on it.  I informed my onc last week at a follow up visit and he was not happy, But I just will not go back on it.  If I recur I will cross that bridge if I come to it, but I am no longer a young women.  I am now 64 and don't want to feel 90 and overwieght. The bone pain and joint pain have been better.  It seems to get worse with weather systems that com thru, as my joints are like a barometer now. If I do recur, I will never know if it is because I am not taking AI's or it's just a cancer crap shoot.  Others taking AI's recur even after being NED for many years.  

Oceana

I'll add my own story to the rest.  95% ER/PR+.  After neo-adjuvant AC/T, the surgery found me with 8 positive nodes and extra-capsular extension.  I also had an inoperable sub-clavicular positive node.  So there was no question that after radiation, my onc wanted me on continued treatment.   I had my remaining ovary out during the mastectomy (BRCA2 +), so onc put me on AI.

I started on Arimidex, and had terrible insomnia, brain fog, vaginal desert, and joint issues.  The pain in my hips and sacrum earned me a bone scan, which was clear.  My onc was willing to supply me with all the Sonata I wanted so I could get some sleep, and I found the whole situation tolerable, but barely.  Had deQuervains tendonitis in one wrist, which responded well to a cortisone shot.   When I saw my onc next, I told him I had had a problem with my wrist, and he said: "Was it deQuervains?", and that it was a very common side effect.

About a year and a half later, at my regular physical with my PCP, two liver enzymes were well above normal range, and he recommended that I stop taking the Arimidex immediately.   We waited 30 days and tested again, but they were even higher.   I talked it over with my onc, who decided to put me on a 30 day rest, then another blood test, and everything's back within normal range.  I switched to Aromasin and another blood test after 60 days showed the same liver enzyme problem, so no more AI's for me.

I was relieved but of course worried about not being able to be on a drug to help manage my recurrence risk.  Onc put me on Tamoxifen.   I had immediate improvement in the insomnia, brain fog, vaginal dryness, and joint issues, but gained 20 pounds in the first 20 weeks.   The only other side effect I have after over two years is some increased gastric reflux.  For me, it was a welcome trade-off.   Now my gyno is trying to get me to battle the vaginal atrophy that I experienced on the AI's with dilators.   We'll see how that works out.

My sister took Tamoxifen for 2 years, followed by 3 years of Aromasin, and claimed not to have a single side effect the entire time.  So it's not a foregone conclusion that everyone will have issues.   If you're trying to decide what to do, I suggest to go ahead and try them to see how your body handles them.   You can always stop if the side effects are intolerable for you.

Hi ladies, it's interesting for me to read your posts and to learn that there are women who go off AIs, like my mom did.  For a few years now, I have thought she was the only one who made this decision.

My mom was diagnosed with Stage IIIb IDC in January 2011 and underwent a unilateral mastectomy in April.  No node involvement, but she did have focal dermal involvement -- so that is why she was Stage IIIb.

She opted not to have chemo and radiation following surgery, and to do only the AIs.  Chemo and radiation were recommended but she declined.  She took various AIs including Anastrozole (Arimidex), then Letrozole (Femara), then Exemestane (Aromasin) -- all with major side effects.  Most importantly, she developed trigger fingers (multiple fingers) and thumb pain in her left hand.  She also had severe gastrointestinal issues while on the AIs.  I should note that my mom had polio as a child, so she only has the use of her left hand.  So having all these issues essentially meant that she had no use of either hand.  She has stopped taking them completely January 2012.

Full body scan and bone scans have shown no cancer.  Followup blood tests every 3 months also have shown nothing.  She's now 3 years out from diagnosis and 2 years out without any AIs.  I know it sounds risky given that she did not do chemo or radiation, but her quality of life has been the most important factor.  She's a happy and healthy 70 year old, so we are good with her decision.

I commend you ladies as I know the choice to go off the meds is a very tough one to make. 

Weesa or Oceana, that feeling of a joint collapsing, do you have any idea what causes it? I ask because I have that in my hip sometimes, not from femara, I have had it since I was a young teen. I have mentioned it to docs over the years, but never got any answer as to why it happens. I do have a very bad back and I imagine it is related, but I still wonder about the actual mechanism.

Oceana, thanks. It is a strange feeling.