Letrozole

Hi, I'm sorry you are having these side effects. You should discuss these issues with your oncologist as you may be able to try a different drug.



Please see your onc asap.

I have been in the same position as you in my thoughts lately. I have decided to stop my med, and ask for a prescription switch to Arimidex when I see my MO in three weeks. I am seriously hoping I get a bit of relief in the med free weeks ahead, as well as fewer side effects with the Arimidex. There is no way I can endure this degree of pain for over 4 more years.

senga.....been on this devil pill since July 2011......my SE'S are like yours.....knees, hands, feet, fingers, edema, and it gets no better........I feel as you.......when do we consider QOL...for length of life.......what good is living if this pill physically ends what life you have..........the only thing that keeps me on it is realizing if the cancer comes back.........God knows where, and you still end up in pain, and facing more cancer........was gonna ask about a switch too, but not sure if the same thing will happen.......it stinks

I just had to update. I have been off the Femara for a mere 5 days. I am happy - actually happy - on the Femara I felt my emotions were very flat. Also, I am a teacher. One of the teachers I team teach with told me today that she sees a difference in me already. She said that most days she can see the pain on my face and in how I hold my body throughout the day. She said this week, for the first time, my face is relaxed. I knew the pain was bad, but until she told me this, I did not know others could see it. My joints are still a bit sore, but I can make a fist with minimal pain in my hands; I can get out of bed in the morning and move almost immediately; I can get out of my car and not look like I am 85 years old. Oh my gosh - this is how I felt before BC! I am alive!

So not looking forward to another prescription for another AI in two weeks. The real me is still in here. Not sure if I can put her back to sleep until my five years are complete. This is going to be hard!

I want to bump this thread and hope the contributors respond with an update on how they are doing now.

My trigger thumb has been in a splint for a month. Now the ring finger on other hand is triggering. I can't close either hand...can't hold a cup of coffee...ugh! Getting going is a slow process. Combined with the weight gain and truncal and arm lymphodema, cancer treatments just keep on giving.

After many sleepless nights and tearful days, I stopped taking letrozole five days ago. Next month is mammogram and dexa scan, then appointment with oncologist in November. (I saw her nurse practitioner in July and was referred to a surgeon for the trigger thumb! She said it was not the Femara. I left that visit very disillusioned about the smarts in that office.)

I definitely am concerned about a recurrence, and want to be on hormone therapy, but these side affects became too much to accept.

So true! My right thumb is useless most of the time. I use athletic tape that seals itself around the whole thumb. Two wraps of it make a stiff sleeve that I can take off to wash my hands. One roll makes about seven sleeves. They get dirty so quickly. But this is so much better than surgery.

My ring finger can't stand being wrapped. I did not mention it before, but both middle fingers trigger occasionally.

The thought of getting cortisone shots in my hands gives me the willys.

Started with anastrozole July 2015 but after 6 months I had weeks of severe diarrhea so MO switched me to Femara; so it has been less than 9 months because the thumb trigger started this past July.

Thanks for the info on the thumb stabilizer.

More about letrozole: experiment with different generic manufacturers. Different generics have more or fewer side effects. That is often due to the list of inactive ingredients: colors, binders, fillers, preservatives, etc. With letrozole, there is only one generic with fewer inactive ingredients than the brand name Femara (which is hideously expensive and covered by almost NO insurer): Roxane. It’s also dirt cheap. No dyes or talc, few if any allergens or metal salts that can irritate. I had no SEs on it at all. But it’s getting harder to find. Next comes the aforementioned Femara. And after that, Teva has the fewest inactive ingredients and fewest recorded side effects according to many who post on BCO. And that’s the one my independent pharmacy has been able to get. I have SEs but they’re relatively mild.

But the big chain (and mail-order) pharmacies sell you what they have, which is most often Accord or Sun--some brick-and-mortar stores’ pharmacists might be willing to order you the generic of your choice, but most won’t--they get whatever their corporate distributor can get most cheaply. And mail-order pharmacies specify right in the contract that they reserve the right to change generic suppliers without recourse to the consumer. You get what they give you. Take it or leave it. Like it or lump it. On these boards, more problems are encountered with Accord and Sun letrozole than with Femara (Novartis), Teva, or Roxane. (BTW, my husband’s a cardiologist and he says his patients have fewer and milder side effects with Teva generics, regardless of what drug).

My peeve is that not only will my Medicare Part D carrier, (in)Humana Enhanced, not cover Femara--they won’t cover ANY letrozole unless I “fail" three months of “step therapy” on generic anastrozole. (How do they define “fail?” That your estrogen levels don’t drop or your cancer recurs? Odds are that unless the SEs are crippling or life-threatening, they don’t count that as “failure of therapy”). So I’m out of pocket. My first month I wasn’t yet on Medicare, and with United Health PPO, I paid $9 for Roxane. Next month I was on Medicare, and the price doubled to $17. Then my pharmacist couldn’t get Roxane, so I got Teva--and the price has fluctuated between $27-30/mo. Not expensive for what it’s supposed to do, but way cheaper (1/10 the price) than Femara--and that’s the Canadian internet price for Femara from Novartis UK. In the U.S., it’s $700-900/month!!!!

I would first switch generic mfrs., then if that doesn’t help, ask for a short “vacation” from letrozole. If the SE’s reverse, then try a different AI. Just like antidepressants, it’s impossible to tell who will do best on which, until you try them.