Unusual Side Effects from Letrozole?

Hi Rhoda, I tried letrozole and a couple of the other aromatase inhibitors. Joint pain was too much, along with the insomnia. Took almost a year of trying different medications and ended up taking tamoxifen. So far so good. Wishing you the best!

I feel your frustration! Very similar struggle for me on Arimidex. Struggled for a year with it. Oncologist insisted it would improve after a year as my body adjusted, not so much! Finally switched me to Exemestane after a two week break. Side effects much improved. Interestingly, the two week break from the hormone blockers was refreshing. We are all different, but the hormones are tough to operate without. Please keep an open conversation with your medical teams. Keep positive and fight back! Wishing you all the best and sending hugs your way!!!

Thanks to you both for responding. It’s not great that you have similar stories but I feel less strange. This whole cancer journey has been filled with hopes, disappointments, and growth, too. Wishing you smooth sailing and lots of supportive care from medical personnel, family and friends. Take care!

Hi, I’m back with an update. After 3 months, the exemestane side effects were too many to handle. After a year on Arimidex, this drug only improved for 3, months, then went south! My insurance denied the venosah, because it’s only allowed for menopause, not side effects for this drug. Taking a 3 week break and then trying the letrozole. Fingers crossed! No one wants to sign up for these debilitating side effects, but also no one wants a reoccurrence for the cancer to return! Double edged sword we are all learning to dance around! Keeping positive and active is our best defense along with honestly and openly discussing things with our doctors & support teams. Together, we need to stay strong & support one another! Peace to all❣️

I have been on Letrozole for 9 months. Lots of ups and downs. Peak of side effects at 4 months. Thought hot flashes were gone at 6 months, but they returned 2 months later. Gabapentin has solved the insomnia caused by Letrozole. Now I am battling lower back pain and stiffness. I am exercising 3x a week, and I thought it was helping; but now my hip and back pain is getting worse. I feel 85 instead of 55.

OMG! Sounds like we are all on the same dance floor! Jeepers, I seriously think this is a “new” type of menopause we are all experiencing, drug/cancer induced menopause! I’m with you, how can one little pill cause such disruption? I feel so much better taking a break from the medications, but just too terrified to not take it at all! Last thing I want to do is take 20 more pills to try to counter attach the side effects. I think our best move is to keep busy and keep active and keep our diets healthy! Staying positive and venting as I go… Prayers to you all for some peace and relief in our battle!❣️

Lee B I agree. Can’t handle the night sweats at 3:30 am. Then insomnia. I am still working and even though I can set my own schedule it’s a real struggle. It’s only been 3 months for me but if it doesn’t improve I am not sure what to do next. I’ll give this through the fall as the weather cools down.

Hi Sandra, Keep an open & honest dialogue with your oncologist & team! This is rough! I also tried acupuncture treatments, they helped a bit but not a cure. I invested in an Embr Wave bracelet, google it! Developed by MIT students. It helps crush the hot flashes. It really works for me. Everyone is different, and completely guaranteed in 60 days or a full refund. The insomnia is not easy to overcome. I tried keeping a journal to try to find a pattern. It is exhausting, but I try to get myself exhausted but still am wired in middle of night. I’ve removed caffeine, gone to plant based diet, no alcohol, and very little sugar. I find this helps somewhat. Meet exploring and collect data to discuss with your medical team! Sending you hugs of support and only best wishes❣️❣️❣️

Thank you Lee! I will look into the bracelet. My diet is somewhat healthy. I only have 2 cups of coffee in the morning. Giving it up is a step too far. lol. I just switched to Letrozole. So we shall see.

I’m starting the letrozole on Monday after a 3 week break. Let’s keep in touch and compare notes. I’m starting a log, collecting data to discuss with doctors. My sleep has been so disrupted I can barely get a hour or two at a time, exhausting! The darn hot flashes continued into my 3 week break, yet insurance denied any venosah drug to help. My dear, I fear we are crawling out of a dark hole and up hill all the way. Stay strong & positive, that’s all we can do & pray we get through this❣️. Hugs to you!

I thought Letrozole was gong to be better but hit a bad night. Can’t do the night sweats at 3am. No sleep. I was taking it at night but skipping tonight and back to taking in the morning. Luckily I work remotely.

Good idea Sandra! We have to try anything we can to make this work. Jot down some notes and keep talking with your medical team. Stay hydrated and really watch the sugar & caffeine. See if it makes a difference. Hope your morning dosage makes a difference. Sending you positive energy & hugs!

Thank you Lee. I looked at the bracelet online. It’s bulky and I am on the computer all day. Expensive to make a mistake. I ordered some sleep patches for menopause and they will be here tomorrow. Will keep you posted.

I agree these side effects are just ridiculous to have after all we’ve been through! You would think they could create a drug by now that doesn’t eat our joints! I’m 67 and not having so much sweats or insomnia, but my worst is joint pain ( back, hips and hands) and some stomach issues.

Lee B Can you please talk about Exemestane. I’ve read it’s a better option for those of us prone to depression.

Many people taking letrozole do experience side effects similar to what's described, and it's understandable to feel overwhelmed when dealing with multiple symptoms at once. These types of changes - including sleep disruption, joint discomfort, and digestive issues - are commonly reported with aromatase inhibitors like letrozole, though each person's experience is unique. It would be valuable to discuss all these symptoms with your oncologist or healthcare team, as they can help determine the best ways to manage them and ensure you're getting the support you need during treatment.

Thought I would update on this old post. I used patches for 6 days. Wasn’t sure they weren’t going to interfere with Letrozole so I stopped using them. I slept and had no hot flashes or night sweats. A relief. I stayed faithfully on Letrozole every day. Now in the last 2 weeks I am having NO side effects except a bit of insomnia. What happened? Did I get used to Letrozole? Is this short lived? I see the dr. this week.

Sandra Patches? Can you elaborate?

Patches for menopause I purchased on Amazon from a company in WI. All natural, no hormones (they say). I wasn’t sure if this was ok while on Letrozole so I only used for 6 days. I am still on letrozole every day. Each night I pray I will be ok through the night.

April, The exemestane I thought was going to work, but the honeymoon period lasted just short of 3 months. The side effects were nasty. Swelling hands & feet, headaches, blurred vision, hot flashes, night sweats and bloating so bad I looked pregnant. Insomnia was wicked lucky to get one or two hours sleep at a time. I was out of focus and overwhelmed. Could not stay motivated and gained weight too. My oncologist tried to prescribe venosah but insurance denied it. I asked the differences with the various AI’s and was told exemestane contained a steroid and was irreversible. That explained the bloating & weight gain. The irreversible was supposed to be helpful at targeting or zeroing in on the areas the drug was to treat. Had I known this to begin with I would have never tried it. It also affects your retina which I already have issues with! So I stopped taking it. I did a 3 week break. The bloating went away immediately. The blurry vision, headaches all stopped. The hot flashes and night sweats subsided for a few weeks, but started back before the 3rd week break finished. The joint pain comes & stays, improves, but never really goes completely. I know our bodies try to adjust and we try to accept the new normal, but there must be a better way! I would hope the insurance companies would have to experience these conditions before they make such uneducated rulings. Why do we spend so much time and $ working with doctors? Wishing you all the best on your journey. I beg you to keep positive and speak with your team openly. We are all doing our best to bite this bullet❣️

This is my moment of choice and I’m honestly so afraid of choosing wrong. My cancer was stage 1, low grade, low chance of reoccurrence, no node involvement, no LVI, Nottingham histology scale I scored a 1, mo DCIS. I’m getting radiation because of the posterior margin of 1mm is enough to be clear but, small. I also had weird looking cells in one of my milk ducts that was removed…benign but unusual. I’m covering myself with radiation. I had one phone consultation with an oncologist that agreed that I have excellent chance of no reoccurrence but still suggested Tamoxifen as a shield. Well, I’m not sure the potential side effects from the nasty drug are worth it! Possible stroke, edema, GOD!! What would you do?

I have a second opinion consultation on Friday

A second opinion can’t hurt! We do it for mechanical stuff why not our bodies!!! Really question your doctors. I don’t know if age makes a difference in treatments. My mom & aunts took tamoxifen as that was all that was available then. I also did radiation with an extra blast at the tumor site at it was deep to the pectoral wall. Clear margins but I did it for a first line of defense! There are three other therapies in the AI cupboard that may benefit you but you need to discuss w your medical team! I too was stage 1, early detection, but involved DCIS & invasive ductal carcinoma. The radiation increased my chances for low recurrence , but I am afraid to take that chance. Hence, I struggle trying different AI’s, adjusting diet, et al. I urge you to research and speak to professionals to help guide you! Sending you positive energy, love & compassion! Keep fighting❣️❣️❣️

What was the boost like Lee? I’m gonna probably need it too!

What were your tumor stats?