struggling on AI need support

exercise_guru

I could really use some feedback, support, advice tonight. I am having a really hard time of it right now.

So here is the story. I had my first mammorgram at 42 and you can see from my stats that my situation is a bit crazy. Two kinds of cancer plus a Palb2 gene. I had a dbl masectomy and TCH chemo. Made it through. Then during the christmas break I had a TAH full hysterectomy oophrectomy and reconstruction. This probably threw me into menopause fast and furious but I was already hotflashing during Chemo. It was a long tough surgery and my mom came to help me recover for two months. Well I thought I was going to bounce back and be fine. I am still doing Herceptin until the end of July.

I started Arimidex in January and for some inexplicable reason 5 weeks later both hands started going numb and I had severe arthritis in the hand joints and developed trigger finger in three joints. It came on all at once and I wasn't working so while it stinks and almost put me on disability it didn't wreck my life. well I went off arimidex for a month and the arthritis pain/stiffness went away but I still have problems with my hands( numbness and tendonitis). Also my cholesterol shot from 100 to 270.

I was too afraid to stay off any longer so they put me on Femara. Five weeks later the cramping joint arthritis pain in my hands was back. Off Femara for 3 weeks and the arthritis goes away but the numbness in my right hand and tendinitis in my left hand are here to stay I guess. I am going to a neurologist to get some answers. My MO wanted me to wait and try PT and such to see if it would fade the farther out from chemo/surgery. I guess the nuerologist will look at my spine and check for Carpal tunnel on the right and for De Quervain's tenosynovitis on the left hand. Also he is going to check on the headaches I am having.

Anyway again I am terrified to stay off of an AI or HRT. my Mo gave me a choice between Aromosin and Tamoxifen. I have no idea because they found the IDC cancer during surgery. It was originally DCIS. I have no idea whether my right side is luminal B or my left side for because it was 7% ER and 3plusHER2. I do not know if they did a ki67 score I am sure probably not but called my nurse navigator because it was nowhere in my files.

K ladies what should I do? Should I go on Tamoxifen until the end of the summer and try to get my hands back? Then maybe try Aromosin. Can you guys look at my stats. I am really worried Tamoxifen won't be effective. I just don't see how I can fix my hands staying on an AI. Every time physical therapy starts to help the tedonitis the arthritis kicks in and wipes me out. I am worried If the numbness doesn't leave soon I will have permanent damage.

Here is what I found

The side effects of AIs include joint pain and stiffness, vaginal dryness, increased cholesterol, heart disease, and weakening bones. The side effects of tamoxifen include hot flashes, vaginal discharge or dryness, leg cramps, and, rarely, blood clots and a slightly increased risk of uterine cancer.

Given that I don't have a uterus. and hopefully my family doesn't have a history of blood clots I would rather face Tamoxifen than the SE of AI. I am just not sure that the % improvement in my odds ( I am not sure how much) would be better than the very significant SE of AI. If I break my hip at 50 I am going to be pissed.

Just scared and could use some feedback and support.

Tomboy

......Sounds like you had, or are having all the trouble I had with them f**kers too. I am on tamoxifen nw, have been for almost a year, but howdy, it hurts too. you can see my stats, and I am still thinking about quitting them early. I did anastrozole first, too, made it about 8 months, then a month break. Then tried tamoxifen, did for almost six months and got worried about endometrial cancer. So on to Femara, made it about 9 months with that one. I blame femara for completely wrecking my feet. They have never recovered. So, I have been on tamoxifen again for almost a year. It hurts too, and I am about done with all of them. I got almost a three month break between femur and tamoxifen, and most things eventually got better, except for my feet, that I really need. And, they are still hurting every day, with opioids , anti depressants, blood pressure medications, AND prescription arthritis medications. And so, pretty soon, I think I will just take my chances and do them if /when it comes back.

Tomboy

I am so sorry. I meant to say, I am so sorry you are hurting and having these problems. And another thing that really pisses me off is, how come we didn't KNOW this?!?!!? How come no women on the news, or in our neighborhoods tell us this!?!? my pain doctor, when I asked if they reported these instances to the pill makers, said no, because, they don't know for sure what else in our life may be causing it. SO WTF?????

dtad

Tomboy...I 'm sorry you are suffering. I think we all need to speak up about QOL issues on these anti hormones. I know some women do well on them and that's great. However if those of us who don't do well just accept the poor QOL there will never be research on better treatment options. Only 50 percent of us complete the 5 years of anti hormone therapy due to SE. That is just not good enough! Good luck to all.....

farmerlucy

I started Femara last April, stuck with it until Decenber and the joint issues were too much. DId Tam until Feb when my onc encouraged me to try Arimidex. Stuck with it for three months, joint issues were even worse. Now I'm back on Tam until I see my Onc in August. I had the hand issues with both AIs. A wrist splint on my right hand and the side I sleep on has helped tremendously. Nothing really helped with joint issues. I am ok with Tam, in three weeks my joints have stopped creaking, though they are still stiff. It is a bit less effective, but that is the best I can do. (Until my onc has me try Aromisin in August.) literally counting the days until I can be done. It is hard.

ml143333

I have been taking Femara for about 1 year. When I first started on it, I had no problems. At about 2 months, I started with joint pain and feeling like an old woman. I had different issues with my wrists, elbows, feet, knees, and hips. All have seemed to resolve themselves except the joint pain. From what I understand, if that is all I'm dealing with, then I'm pretty good.

Don't hesitate to talk with your MO about what is going on with you and switch until you find what works best for you.

Molly50

I started on anastrozole in October a week prior to starting radiation. Initially I blamed everything on the rads. I lasted until april on anastrozole. I felt awful. Period. Just awful. I could live with the joint pain to some degree but I was convinced I had developed Alzheimers (it runs in my family) and I felt so exhausted and B A D every day. One three week break was heaven! I started on exemestane about 5 or 6 weeks ago. I am starting to hurt in my legs. Heavy feeling, bone pain and my joints feel like there is nothing protecting them. Hopefully this is as bad as it gets. ugh

KBeee

Tamoxifen should not give you the joint troubles that the AIs do. Perhaps go on Tamoxifen for a few years. Once your body has fully healed from chemo and residual neuropathy from that has gone, maybe your body will better tolerate an AI. In the meantime, try Tamoxifen because it does not have the joint side effects that the AIs do. After taxotere chemo in 2013, I developed carpal tunnel and cubital tunnel. I had surgeries for both of those and then also for a trigger thumb. All of those were within a year of finishing chemo. I dreaded starting Letrozole because I thought they would be worse, but (knocking wood here) so far it has not been an issue. The chemo takes a while to clear from your system, so maybe the combination is too much and staying off it for a couple years, maybe will help. Sorry you're dealing with that. It's frustrating for sure. PM me anytime since some of our joint symptoms are similar.

PatRN10

I just finished 90 days of letrozole and am so exhausted I can't function. I just started a 2 week break and will start anastrozole. Hope I feel better on this one.

tangandchris

Tamoxifen was not good for me, I felt like I was going into a dark deep depression on that stuff and I decided to stop and just live my life. It was tough and eventually I got scared and came clean to my new MO that I had taken a 5-6month break. I'm now taking Femara and the pain sucks, but so far it isn't unbearable. I did take a few days off of Femara, mostly because I didn't pick up the script and I noticed a marked difference in the joint pain and aches.

I don't really have much to add, except these choices we have are just down right shitty. I'd say that Tamoxifen would be easier on the physical side, but again some have reported problems on that too.

The only thing saving me is that I have Tyelnol 3's that I take and BioFreeze...love me some BioFreeze. I'd prefer a stronger pain med, but so far these are working okay.

((hugs))