Switch from letrozole to exemestane

Posted by harkey @harkey, Aug 16 1:33am

Hi, I recently took a 6 week washout period from letrozole, and then started exemestane about a week ago. The last 2 nights I awoke with excruciating Charley horse in my right quadricep. The pain and muscle swelling lingered into the daytime hours, making it difficult to even drive.
Has anyone else experienced these terrible leg cramps?
I'm terrified to go to sleep tonight!
It makes the unpleasant side effects I had while on letrozole seem mild, and I am debating going back on letrozole.
Thank you for any guidance!
Xo, Harkey

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for mistymar @mistymar

I have the same problem which is why I’m hesitant to stop medications. Did chemo because oncotype positive. Tumor marker dropped about 20 points (needed to drop 50 to hit high normal), then after 3 months started back up again almost to start level. At that point, he ordered brain MRI and pet scan. Neither of which showed new tumor growth. Then it dropped back to where it was before, then another 10 points and that’s where I sit. He said it can happen and as long as stays stable, monitor but not considered a problem. Easy to say but sits in your mind that maybe there’s a reason. And yes, I’ve read multiple articles about tumor marker specificity and that some feel they’re worthless but my doctor still uses them for monitoring and I have to feel he knows what he’s doing. I’ll look into the Pectasol (haven’t heard about that before), already researching other naturals like mushrooms.

Jump to this post

I hope you are able to get some answers that are helpful. It is truly a roller coaster ride, dealing with cancer and the treatment for cancer!

REPLY
Profile picture for paulinaneves @paulinaneves

Natural estrogen's blocker is suggested by NutritionFacts.org Dr Greger who is a Vegan but will you follow him using plant base food, he shows you research papers but not sure if they do trials like the pharma do when they develop drugs. Really not sure, the world is pro pharma who at the end produce drugs that save lives and makes tons of money but you have to spend more money on side effects, rather producing drugs with natural ingredients which has no side effects so we don't need to spend more money to buy drugs to treat side effects!

Jump to this post

Thank you for responding- we do live in a pro pharma world that desperately needs to blend with our natural health Drs hoping one day there will be drugs that help without horrible side effects -a milestone for all. a hopeful thought.

REPLY
Profile picture for penny21 @penny21

Hi MistyMar,
I feel your pain. I feel trapped by being told I must take this or one of the aromatase inhibitors (pick your poison) the rest of my life. All the side effects you mentioned, not to mention osteoporosis and linked to cardiac issues, as well. “Yes, we can delay your death from cancer, but you will feel lousy, be tired all the time and have painful side effects, but we can give you more drugs for what ails you. The cancer might not kill you yet, but the massive amounts of drugs and their side effects might. Depressing.

Jump to this post

I think it’s time that people were more honest - it’s often put across as ‘ take these you are ok’ far from the reality .
I certainly feel I was not given enough information and feel it’s expected of me to ‘feel ok’.

REPLY
Profile picture for mistymar @mistymar

I fully agree. I’ve always said I’m not doing the “circular medicine” - take this medication, now take this one to stop the side effects of the other one, now take this medication……. Everything here is rock vs hard place. No, you don’t have to do chemo but if you have mets in 2 years, too late to say “gee, I should have done chemo”. This is the same. I really don’t want to have to go through all this again so not sure I want to stop this medication if I don’t absolutely have to BUT there is that quality of life issue. My cancer group is saying 5 years only (claims research shows no difference between taking 5 vs 10 years) so hopefully that holds but things can change as we get closer. Luckily so far, heart tests normal and last bone scan was also normal without taking any bone meds (I declined). So I stay on the meds and try to survive all this that according to them aren’t side effects of the medication. Not sure I would survive without forums like this and knowing it’s not just me.

Jump to this post

I agree with all you say and I have found more sense and support from this forum than from my supposed ‘support’ agencies .

REPLY
Profile picture for reflector75 @reflector75

I think it’s time that people were more honest - it’s often put across as ‘ take these you are ok’ far from the reality .
I certainly feel I was not given enough information and feel it’s expected of me to ‘feel ok’.

Jump to this post

I agree with you, whole heartedly.❤️

REPLY

I was on a Anastrozole for 10 months and started to have pain in my hands and trigger fingers and had to have 2 trigger finger surgeries then I switched to Letrozole and my cholesterol went up. Went off of it for a month with no change so now I am on exemestane and I have to have 2 more trigger finger surgeries and my joints ache all the time! This entire process has been difficult. Has anyone else had Bilateral breast cancer ? It’s supposed to be only 2% of all breast cancers but my sister was diagnosed 3 months after I was with bilateral breast cancer. All of our genetic testing came back negative! Also my mom has had breast cancer in both breasts but 8 years apart. This cannot just be a coincidence but I’ve got no answers from my doctors. Plus my brother had colon cancer at 50 years old

REPLY

@huskey7

Has anyone in your family had genetic testing?

Even with genetic testing, there may be some genes that are not tested.

Plus, they say that this is only 10% of the population with gene mutations.

REPLY
Profile picture for timely @timely

@huskey7

Has anyone in your family had genetic testing?

Even with genetic testing, there may be some genes that are not tested.

Plus, they say that this is only 10% of the population with gene mutations.

Jump to this post

My two sisters and I have had genetic testing and all of it came back negative . I know that they tested over 65 genes but they are always coming up with new data so my oncologist is having me restested. I am still waiting for those results. My biggest concern is making sure my 21 year old daughter and 23 year old son are monitored closely if it is hereditary.

REPLY

I tried letrozole (greatly increased my tinnitus), then exemestane (again bad tinnitus), the 1 exemestane every other day (still bad tinnitus), then anatrozole--no significant problems! I did develop slight trigger finger (middle R hand), but not enough to bother me. Web will tell you that Letrozole is the strongest AI.
I strongly recommend trying all AIs before giving up.

REPLY
Profile picture for mistymar @mistymar

I fully agree. I’ve always said I’m not doing the “circular medicine” - take this medication, now take this one to stop the side effects of the other one, now take this medication……. Everything here is rock vs hard place. No, you don’t have to do chemo but if you have mets in 2 years, too late to say “gee, I should have done chemo”. This is the same. I really don’t want to have to go through all this again so not sure I want to stop this medication if I don’t absolutely have to BUT there is that quality of life issue. My cancer group is saying 5 years only (claims research shows no difference between taking 5 vs 10 years) so hopefully that holds but things can change as we get closer. Luckily so far, heart tests normal and last bone scan was also normal without taking any bone meds (I declined). So I stay on the meds and try to survive all this that according to them aren’t side effects of the medication. Not sure I would survive without forums like this and knowing it’s not just me.

Jump to this post

Hi MistyMar,
I'm pretty new here - learning and lurking until now. It's heartening to hear the stories of so many women dealing with the same or similar situations. My admiration to all!
My 73rd birthday is in September. Since I've been pretty much keeping my diagnosis to myself, which is ridiculously isolating, I'm particularly encouraged to hear from so many contributors in the over-65 demographic. I've followed the traditional course of biopsy, surgery, radiation (proton) and endocrine therapy. However, I'm left in a quandary as my current Onc, who was "on the fence" re: chemo, is now telling me, weeks later, he does not support it for me. Not because it will not provide benefit (my Oncotype dx is very high) but due to age, comorbidities (I have a mild ILD and an autoimmune) and whatever other factors he has gleaned over just 2 visits. I know it can take a huge toll on an aging body, making it difficult to judge the risk/reward ratio. I'd love to hear from those who "chemoed" and what the experience was like for you. Certainly never thought I'd be advocating for Chemotherapy for myself but here we are. I want to give this my best shot, not be left with coulda/shoulda and hopefully see my very young grandbabies reach kindergarten! Onc has never spoken with my pulmonologist or done any kind of geriatric workup. He is highly regarded in the area so I'm trying to give him the benefit of the doubt but aside from a lackadaisical approach (I think he may be retiring soon) I'm just not getting the vibe he is out for my best welfare. So, today I start the hunt for a new Oncologist. Apologies for the windy reply. I've been holding thoughts in for far too long!
On another note, has anyway come across any credible information on DIM supplements, the use of Curcumin, etc.
Thanks for listening, Laura

REPLY
Please sign in or register to post a reply.