Learning about Letrazole... love it or leave it...??

[Breastfriend]

Hi there... I am now 4 months into taking Letrazole and my side effects are getting worse vs. getting better with my walking, diet changes and some weight training. The last few days have been so painful, I called my Doc and asked to take a break for a bit. Every joint in my body hurts as well as some connective areas ( between my elbow & my wrists... elbow and my shoulders). I also asked my Doc about my % of reoccurrence with and without the med as my BC was caught very early, no lymph involvement, low Onco type number (7), etc... I just turned 57 and lately I feel like I'm 70. I'm feeling like it's worth the 3-5% risk of reoccurrence to not feel like crap for the next 4.5+ years to stop taking the drug. What are folks' thoughts on this?? I have read a few posts on women who have decided not to take an AI drug... just want to feel confident in my decision. Thanks in advance for your feedback!p. 💖

[PJBinMI]

If you are interested in trying a few things to see if those side effects can be reduced, you could try using Celebrex for that bone/connective tissue pain. You could also ask your onc if you could try one of the other AIs. Some women have fewer side effects with Arimidex or Aromasin. I sure understand your dilemma...big decision and no crystal ball! I hope you find peace with whatever choice you make!

[Breastfriend in reply to PJBinMI]

Thanks PJ... have to say that the thought of taking another med to mask the side effects of the AI drug just doesn't feel right to me... but trying a different med may yield different daily outcomes... Mant thanks for responding!

[Hidden in reply to Breastfriend]

Yes, that's what happened to me, I was treating the side effects w other meds.

[BklynCatwoman]

I also had bad side effects from Letrazole and Arimidex. Similar joint pain as you describe. I am now on Aromacin and the side effects are minimal. Have you tried other AIs? There are several to try. As for me, the stats of reducing my chance or recurrance by 50%, was enough to make me hang in there and try others. I think of it as a safety net. Mine was also caught early, stage 1, no lymph node involvement, though my Onco type # was a bit higher (18). I like the idea of an extra layer of protection that our triple negative sisters don't have.

I co-facilitate a monthly AI support group at SHARE's Manhattan office and invite you to join us. We always have helpful suggestions for each other and I always learn something new at these meetings. If you're not local, we could always patch you in on a conference call. We've done this several times and it works well. Our next meeting is Thursday, May 18 at 6 pm EST.

[Breastfriend in reply to BklynCatwoman]

I have phoned into the AI support group back in January and would love to do it again on May 18th.

[BklynCatwoman in reply to Breastfriend]

Then, this must be Maggie. Sorry you're not having an easy time with Lestresole. Do you still have the phone-in instructions to use for the May 18 meeting?

[Breastfriend in reply to BklynCatwoman]

Can you send them to me again... you can always use [e-mail] to reach me.

[BklynCatwoman in reply to Breastfriend]

I will. Sending them now.

[Sugarmag in reply to BklynCatwoman]

Is there still an AI Group online at SHARE? I need some support. Thanks

[AnnieAppleseed]

The idea of personalizing medicine OUGHT to involve HOW YOU feel. If this therapy is so difficult, it is not worth it IMO. I chose not to use conventional therapies after (many) surgeries. But there are natural things - especially MUSHROOMs. that act in similar ways to AI inhibitors. White button mushrooms (easily available as food) do it. Taking a capsule is a good idea. The best way is said to be taking Turkey Tail for 3 months, then a month with a mixed mushroom capsule. Another option is Indole-3 carbinol which occupies receptors. There's also DIIM. Both come from cruciferous vegetables and actually have been well characterized and studied. But we live in a world that only accepts BIG PHARMA-funded studies so anything not patentable is ignored. Shouldn't be. I founded Annie Appleseed Project to share these studies and info. Online, on Facebook ...

[Breastfriend in reply to AnnieAppleseed]

Thanks for chiming in... I will check out your FB page and have also set up a date to go to a local "Herb Farmacy" in Providence, Rhode Island. Mary Blue is the herbalist who owns the place ad she has been written up in several health & local publications for the alternative health supports that she has available.

[haagr]

Hi Breastfriend

I fully understand your dilemma. The care choices we are presented with are not easy to make.

I was diagnosed with stage 0 ER +DCIS in September at the age of 64. I had a lumpectomy followed by radiation. I now have a 5 % chance of recurrence in that breast. I expected that my oncologist to put me on an Aromatase Innhibitor but was very surprised that she clearly felt the side effects do not out weigh the 2% risk reduction I would get from it. So she recommended Tamoxifen but I can't take that because a a gyn problem. She then recommended Evista. I'm really on the fence about this because evista, like tamoxifen causes DVT (blood clots in deep veins) and strokes.

For me it will be a mathematical decision of which causes the greatest risk vs what future health issues will be easier to treat and live with should they occur.

R in NYC

[Breastfriend in reply to haagr]

Sounds like you are grappling with the same dilemma that I am at the moment... that mathematical-based data that is suppose to help you make an informed decision about how to treat your body. I agree with your Onco Doc about the side effects out weighing the risk reduction - especially right now as I am hurting so badly & I typically have a high pain threshold. Thanks again for taking the time to respond.

[haagr in reply to Breastfriend]

I saw my surgeon yesterday and we discussed the mathematical risk reduction of recurrence vs the side effects of estrogen blocking meds for me. I've decided not to take the Evista. A 2% risk reduction is not worth possibility of having a stroke (40% of strokes are fatal) or a pulmonary embolism from deep vein thrombosis blood clots. Although I am nervous about stopping my treatment at this point, life without quality will not be worth living. I've reduced my risk to about 5% in my effected breast and about 10% in the other side. The odds are in my favor that I will be fine. Moving forward and going to live my life without looking back. Hope you come to your decision soon. Wishing you health and happiness.

R in NYC

[Breastfriend in reply to haagr]

So happy for you R that you were able to come to terms with taking the risk in favor of quality of life.... and I greatly appreciate you sharing that decision with me... well, with All of us! Enjoy moving forward & all that it has to offer. I'm taking a med holiday for right now in hopes that my body will rebound & will be exploring some alternative natural supports through a local, well known Herbalist... and then will make a decision in the next few weeks. Wishing you health & happiness as well!

[Hidden in reply to haagr]

Exactly! What will my quality of life be on these horrible meds? I had the worst experience w/Aromasin, and am going back to Arimidex. I don't care about the numbers. I just want to live happy & healthy. I could get pancreatic cancer, recurrence, anything. I could get a brain anuerism, or have a heart attack. I've just got to live my life the best and healthiest way I can. I'm retired, 65 in June. Got cancer 1-yr into retirement. Now, I'm back on the life track.

Just wish there was more research & options for B/C survivors.

[Feb14]

I understand your dilemma and have been using it for almost five years now. I can't say that it hasn't been without pain but I did notice that it got better with time. The first year was the most difficult for me and I still have trouble getting up from a chair once I've been sitting still for a while.

I decided to hang in there and am almost through my five year stint, but always remember that this is an individual choice and that you should feel comfortable about your decisions. As others have suggested you might want to try another of the AIs to see if you get fewer side effects.

[Jjoyce]

I totally sympathise with all your joint pains. I hurt all over and sometimes I thought this must be what iit feels like when someone batters you all over. It's no way to live but I think you should try some of the other AIs. I stopped taking letrazole a year ago but still have terrible pains in my feet and ankles. My oncologist has put me on Tamoxifen but I'm not happy with some of the side effects of that and will ask about the other AIs

[Breastfriend in reply to Jjoyce]

Thanks jjoyce! Will definitely explore other options. Hope your side effects are more manageable now.

[nrollman]

Hi Breastfriend! I started on Letrozole about 3 months ago. My oncologist told me that within the first 3 weeks I would know if I had the gene that expresses itself in the form of joint pain with this drug. Fortunately I have felt fine - some twinges here and there, which is probably more normal with being 62. I couple gals in my support group switched from Letrozole to Femara and felt much better taking that - I know that Letrozole is the generic for Femara, but it made a difference when they switched. My oncologist said we would try other AI's if Letrozole does not work for me. Also, my regimen has been 3 years on Tamoxifen and 2 years on an AI - tamoxifen helps to stabilize bone density before starting on the AI - he said studies have shown that a couple years on Tamoxifen and then finishing up with the AI for a total of 5 years, is as effective as doing the AI for the entire time.

My doctor felt like we could find some combination of the choices available that would minimize side effects. Your side effects do not sound acceptable for your quality of life and I hope your doctor agrees and the two of you can work together to change your meds if you decide to continue.

Good luck and I sure hope you feel better soon,

Nancy from California

[Breastfriend in reply to nrollman]

I greatly appreciate all your shared info and feedback Nancy! Love that your Onco Doc shared research info with you & that you tried a creative approach to your medication regimen. I will share this with my Doctor and see how things go. Thanks again!

[mrsschwartz SHARE Volunteer]

Welcome! So sorry you are suffering with joint pain. While it doesn't happen to everyone, it is a common and troublesome side effect that can make life miserable for those who take AI's. And when women are in pain, of course they question whether it's the right path to follow and wonder what the consequences might be if they stop.

There is one important fact you should know. For some reason, and no one knows exactly why, simply switching the manufacturer of your aromatase inhibitor could make a world of difference. There are several on the market, all effective ,and you can experiment with another one with a new prescription. Please discuss this with your doctor who, I'm sure will be aware of this " trick."

Hope you can find an AI that doesn't negatively impact your quality of life. If not, perhaps you and your oncologist will come to an agreement about your treatment plan and what makes sense for you. Keep us posted .

[Breastfriend in reply to mrsschwartz]

Will try this... thanks so much! And I will keep,you posted!

[Breastfriend]

Thank you... Everyone - for all your thoughtful and caring input. I love this site and how responsive everyone is. I have gathered some excellent information to talk to my Doctor about from what you all have Shared. I have decided to take a three week med holiday to see if some of the pain subsides before embarking on my next possible strategy. Will keep you posted! And thanks again one and all!! 💚

[Hidden in reply to Breastfriend]

Good for you, keep us posted as to how you are doing.

[Hidden]

Ask dr to change meds. I was also suffering terribly from Aromasin(Exemestene), and have asked my dr. if I can go back on Arimidex.

[Hidden]

Aromasin is much worse than Arimidex in my opinion.

[Breastfriend]

Just a quick update... the medication holiday is working...After 5 days, I finally slept thru the nite (WooHoo!!) AND almost all of my body/joint pains have subsided - except for my typical 57 year old living life stiffness 😊 This has confirmed for me that it WAS the Letrozole causing my fatigue, insomnia, and body pains. Now I can at least think more clearly as I explore next steps - which includes getting a second opinion from another medical Onc doctor... as well as exploring alternative health support options.