Topic: Life on aromasin

Apr 11, 2019 07:24PM Luwusu wrote:

Murphy,

I’m not HR-. I’m +

Apr 12, 2019 09:27AM Luwusu wrote:

When i was first diagnosed it was considered estrogen negative because the percentage of estrogen was low. However, I was told by my oncologist that for anyone with an estrogen # higher than 2% it’s strongly recommended to take an estrogen blocker. My percentage, though low, was higher than 2%.

Apr 15, 2019 02:26PM AKColleen wrote:

I began aromatase inhibitors, starting with Femara. Whew I threw up weekly on that and was so constipated only enemas would help. I had to convince my ONCO it was Femara causing this, so finally my ONC changed me to Aromasin. I've completed 1 year on Aromasin with no side effects. However...lately I've been really moody and just don't have any energy. Is that normal after being on Aromasin for a while? I am already on 60mg prozac daily. Also my libido is tanking. Is that normal?

Also for those with constipation....I finally found what worked for me. I take one 250mg tab daily in AM of colase/stool softner (Equate - generic for colase- on Amazon) and in the eve I take 1 -2 tablets of Senokot-S daily. If I deviate from this I get constipated.

May 11, 2019 07:16AM dtad wrote:

DancingElizabeth..so sorry you are hurting. IMO your thumb and wrist issues are much more likely to be from the Arimidex than mets. Of course you should get it checked out but joint issues are a very common side effect of aromatase inhibitors. Unfortunately so is joint damage. Good luck and keep us posted.

May 12, 2019 10:51AM Murfy wrote:

Yes, I also had thumb/wrist pain in the beginning with exemestane. Went off EX for about 7 days and trigger thumb resolved and has never returned. Wrist pain continued, was diagnosed as DeQuervain's tenosynovitis, and required a cortisone shot that completely resolved the condition. Am now pain-free!!

May 16, 2019 04:14PM Moderators wrote:

Thank you emilyjones for this explanation. Are you personally affected by breast cancer?

Here is a page from our site on Aromasin (Aromasin) that could be helpful.

Jul 10, 2019 06:06PM - edited Jul 10, 2019 06:07PM by bennybear

1. I would ask for a bone density and look at your risk benefits. For me in six months of half Anastrozole and half Exemestane I lost 10 percent of my spine and developed osteoporosis after being stable for years. Even while taking fosamax for three months with the AIs. So in my case a 2 percent less chance of recurrence wasn't worth the bone loss. My MO says this is not typical and didn't want to repeat my bone density. Fortunately my PCP listened to my concerns and had the test done. Other wise in two years I would be very worried about how much further bone loss there would have been.
2. Best of luck making the best decision for you!
3. I also had terrible knee pain to the point I was having difficulty walking. This has totally resolved

Jul 13, 2019 10:56PM Luwusu wrote:

I’ve been off of Exemestane 3 months now, after being on it for 18 months. My oncologist isn’t happy about it but my quality of life won out. I know I’m taking a chance - I think my chance of reoccurrence goes from 20 to 24% without it.Not everything is hunky dory but I have less muscle/joint pain and slightly more energy. It’s a hard decision to make, and a very personal one. I am sorry that we all have to deal with these issues after dealing with everything g else.

Jul 14, 2019 12:28PM Kiascia wrote:

Bump

Jul 18, 2019 05:54PM Bliss58 wrote:

Sweetp, I'll share my experience with AIs. I started on Anastrozole and after 7 mos. developed terrible SEs and I ended up not walking well even with a cane. MO switched me to Letrozole and I was able to ditch the cane and got a good 17 mos. before knee problems developed again along with a trigger thumb, so I was back on the cane. Now, I've been on Exemestane for over 18 mos. and while I have not been able to ditch the cane, I'm 60 now and have a left knee problem that continues to be exacerbated by this AI, I think I'm doing the best on it overall. Everyone reacts to AIs differently, so it's hard to say if one will work better for you than another. Good luck.

Kiascia, I'm not sure about the 40%, but wanted to acknowledge your question. My guess would be with both, but I don't know for sure and hope someone else will come along who has some accurate info to share.

Jul 19, 2019 03:06PM Murfy wrote:

Went off exemestane for a week or so to see if shoulder pain (ruling out rotator cuff injury) would clear. It did. I also felt overall really good! Better energy, reduced aches and pains, a libido. Amazing how these AIs make one feel old. Of course, I'm back on and will continue for another 3.5yrs to keep any residual cancer cells at bay. Whatever it takes....

Jul 26, 2019 10:16AM ElaineTherese wrote:

Toni S,

I had high blood pressure before I began Aromasin. It is controlled by a three drug cocktail, Lisinopril, Amlodapine, and Hydrochlorothyozide. My blood pressure has been great on Aromasin, maybe because I'm already treating it.

Jul 27, 2019 08:29PM Capecodgirl wrote:

Hi Blownaway-

I thought it was my knuckles that got swollen (had to have rings expanded from a size 6 to 7 1/2), but maybe it is fluid retention. My hands are so stiff in the morning that I cannot make a fist. Also the skin on my hands burn, and the tissues inside my hands burn as well at times. The issues with my hands bothers me more than the joint pain. My onc said it is systemic, which I guess is his way of saying nothing can be done about it. My pcp prescribed gabapentin for it but I did not find that helped. The longer i take exemsestane the worse it seems to get. Not sure I will make my full 5 years....

Jul 30, 2019 04:05PM Luwusu wrote:

it’s interesting to me to hear about the finger and hand issues some of you are experiencing. Last Sept I broke my wrist- the first bone I had ever broken. I had been on Exemestane about a year at that point. When my wrist-arm cast was removed, my hand was extremely swollen. I began OT right away and therapist told me I had lymphedema. I learned that a bone break can trigger lymphedema in breast cancer patients. I began to see a lymphedema specialist too, and went from compression wrapping to gauntlet and sleeve over the next weeks and months. I stopped OT in the beginning of March and hoped I’d improve on my own. I also stopped taking Exemestane a month later because of multiple side effects.

I still cannot make a fist (not even close) or bend my fingers. The lymphedema part is under control and just a minor inconvenience at this point, but not having much use of my hand is frustrating g Nd discouraging. I started back with my OT two weeks ago. She suggested seeing another hand surgeon/specialist so I set up an appt for this Thursday. I now think that not only did the wrist break cause the lymphedema, but that the Exemestane caused the major joint issues I’m having in my fingers. No doctors seem to have out this info together. The ortho Drs seem to know nothing about lymphedema being triggered by a bone fracture. My onc knew I was having major hand issues and didn’t mention that the Exemestane I was on for 18 months could have exasperated any joint issues for me. Nope. Nobody has treated or understood my whole situation. I have more pieces of the puzzle that I can now give the new ortho on Thursday, but it sure would have been nice if any of the highly paid, medically trained Drs I’ve seen could have offered the puzzle pieces to me instead of me trying to figure things out.

Jul 30, 2019 07:57PM Luwusu wrote:

I know what the potential benefit would be: 4% less risk ‘of recurrence. But I did not have quality of life while on Exemestane. My oncologist wants me on an AI. I do not. I don’t see myself going back on