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side effects of Letrozole

side effects of Letrozole

Posted by Brighty on Jan 13, 2021 10:14 pm

Hi again.  I'm posting on behalf of Faith1‍ .     She would like to know if there are any members here who have been on Letrozole and what side effects they had.   Thank you so much.        
Help is out there. All you have to do is reach out.

Re: side effects of Letrozole

Posted by Runner Girl on Jan 14, 2021 10:02 am

Hello Brighty‍ and Faith1‍ 

Here are the listed side effects from Letrozole

The following side effects are common (occurring in greater than 30%) for patients taking Letrozole:

These side effects are less common side effects (occurring in about 10-29%) of patients receiving Letrozole:

Recall that Wendy Tea‍ had difficulties on Letrozole and was switched to Tamoxifen.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: side effects of Letrozole

Posted by Brighty on Jan 14, 2021 10:13 am

Thank you ‍ Runner Girl‍ .  I will make sure Faith1‍ sees this.
Help is out there. All you have to do is reach out.

Re: side effects of Letrozole

Posted by LGS on Jan 14, 2021 1:33 pm

I started taking letrozole in August after Chemo finished, had radiation in September and October. Several weeks after starting I experienced a skin rash on my arms. This lasted about three weeks and then disappeared. In November I started experiencing severe pain and stiffness in my shoulders. My GP thought it might be arthritis but I have never had any prior problems. Starting to think it is caused by letrozole. Once the oncologist signs off (December) you are told the GP is responsible for all care. I did report this to the oncologist before signing off but it was shrugged off. The GP has little experience with cancer treatments and prescribed a lotion which has done nothing. One feels that you are left to deal with the side effects to the treatments on your own.
 

Re: side effects of Letrozole

Posted by Buffythevampire on Jan 14, 2021 2:42 pm

Brighty‍ I have been taking Letrozole for over a year now. My Oncologist told me that Letrozole gives menopause symptoms. In the beginning I had hot flashes but they're gone now. I have hair thinning too and am hoping that it will stop too. For me anyway, not too bad side effects.

Re: side effects of Letrozole

Posted by Brighty on Jan 14, 2021 2:44 pm

Thank you Buffythevampire‍ ! I will see thst Faith1‍ sees your message.    How have you been doing lately???? 
Help is out there. All you have to do is reach out.

Re: side effects of Letrozole

Posted by Buffythevampire on Jan 14, 2021 3:21 pm

Brighty‍ Forgot to post that I also have a chemically taste in my mouth that doesn't go away. Thankfully it doesn't affect the taste of food or drink like chemo did but I am still aware of it. It goes away for a short time after brushing my teeth but before too long it's back.

Re: side effects of Letrozole

Posted by DMT on Jan 14, 2021 3:55 pm

I started on Anastrozole but got a rash from it. They switched me to Letrozole. The oncologist told me to take whatever I needed to take to stay on it as long as possible. I already had arthritis that is worse now. I am now on Celebrex(celecoxib) for the inflammation. It has helped but still have some pain. I also take a Muscle and Back pain reliever (Kirkland), with acetaminophen and a muscle relaxer. That helps with the stiff, achy, cramping  muscles. Generic Imodium for the intermittent diarrhea. I have to pace myself otherwise I get very fatigued. Taking the Letrozole at night works better for me. Trying to get some exercise does help with the fatigue. I really found that therapy aqua fit at our community pool was extremely helpful but that is shut down because of COVID. So getting out as mush as possible for a walk and doing stretches at home is about all I can do right now. Some people do better than others on it. Some people say the side effects get better in time. I’ve been on it for 2 years now and am coping with it.

Re: side effects of Letrozole

Posted by Ukeez on Jan 15, 2021 8:02 am

I have been in Letrozole since August. Breast cancer diagnosis Jan.  2020, lumpectomy February, radiation April and May. Ovaries removed in August, due to concern for endometrial cancer and tamoxifen. Letrozole started after surgery. 2 weeks in I had swollen eyes. I didn’t think it was due to the medication but now in hind sight?I have ached in all my joints. I get out if bed and my ankles don’t bend. I walk like a penguin. I can’t form a fist, my hands are so sore. The pain and stiffness lessens  as the day goes on but if I sit for a while I’m stiff again. The ache is always there.   have tried over the counter meds, cbd cream on my joints. Nothing works. I called my oncologist the beginning of Dec. no reply. Called beginning of this week. They got back to me yesterday and I see the Dr on the 25. The triage nurse said that approximately 42% experience these body aches, don’t know to what extreme. I was told to stop taking it until I see the dr. I don’t know anyone else who has been on this medication in order to discuss with them. It will be interesting to see if my symptoms lesson with the stopping of the meds. Hope this helps. I feel at 53 I’m to young to be feel like this. 
Good luck 

Re: side effects of Letrozole

Posted by Cross Stitcher on Jan 16, 2021 10:23 am

I was on it for 6 days and I was virtually paralyzed from the neck down to my waist on my right side. I'm right-handed so that did not go well. My husband had to help me dress. I called my oncologist and she said go off it right away and come see her in two weeks and she put me on Exemestane. I have been on that now for a months with slight stiffness but bearable.

Re: side effects of Letrozole

Posted by Faith1 on Jan 17, 2021 7:15 am

*LGS

Thank you for the information on Letrozole. I am not looking forward to having to take this medication, as I already have severe arthritis, I am 61 and have had it for years. I experienced the " bone pain" while on chemo or it could have been due to the Lapelga needle they were giving me, it was extremely painful for me and I decided to stop my second round of chemo because I couldn't take the pain. However I found out I had 26 cancerous lymph nodes under my right arm after having surgery, and had to go back and finish the last three chemo treatments. I asked them to only give me 80% and to lower the steroids for me, which helped, but I was still in a lot of pain.  Recently I found something that helped my arthritis, which helped my pain, blood pressure, sugar levels, mood and I felt so much better, calmer etc... I was told I cannot take the CBD oil while on the Letrozole because they do not know how it will affect the results. I was only taking 60 mg.I thought if I need to take Tylenol, celebrex etc.. won't this be equally hard on my liver? They told me because of the lymph nodes, I will need to be on it for 10 years!! It is not fair that after treatments are done they wash their hands of us. I thought I read that celebrex was not good for you at one point? I had to take it for 6 months years ago, because I had caught Fifth Disease from a child I was working with. Fifth Disease causes symptoms like rheumatoid arthritis. Why did they not try a different medication for you? I would get a second opinion, I could not live with severe pain everyday for 10 years!! I would not be able to go back to work with my special needs students feeling this way!

Re: side effects of Letrozole

Posted by Faith1 on Jan 17, 2021 7:29 am

*Cross Stitcher & buffythevampire

Good morning, and thank you both for the information on Letrozole. I am not looking forward to going on this medication, as I am so sensitive to all medications. I already have severe arthritis, and am afraid of bone pain and joint pain etc.. That must of been so scary for you, feeling like you were paralyzed!! I'm glad it wasn't permanent!! Buffy I am sorry to hear about the chemical taste. I hope this goes away in time for you. I still have no taste buds since my last Chemo on December 22nd. It came back before, so I am keeping my fingers crossed!! I sure hope I don't have the hair thinning as my hair is already thin, but I would take this over bone pain and loss of taste. I already experience hot flashes and sweating, I've had this for years! It did get better a couple of years ago, but now it's worse again. I wish the two of you well and pray that this medication will do what it's intended to do, and keep the cancer from coming back. Faith1

Re: side effects of Letrozole

Posted by Faith1 on Jan 17, 2021 7:49 am

*Ukeez

Sorry to hear about all that you've been through, I can relate. This is my second time with cancer, first time was in my 30's cervical cancer. I had a hysterectomy back then. I was diagnosed with Lobular Breat Cancer In Auggust of 2019. When they did the surgery they found 26 cancerous lymph nodes. I am starting radiation tomorrow, 25 treatments and they are putting me on Letrozole. I already have severe arthritis and this is was frightens me. I wake up and need to shower and exercise right away if I want to be able to move as it is. Let me know if they put you on a different medication and this helps.I wish I could continue to take the CBD oil as it really helped me with the stiffness and pain, unfortunately I've been told they do not feel I should stay on it as it may affect the the results of the Letrozole. Please keep me updated and let me know if a different medication will help you. I wish you all the best and hope things get better for you. Faith 1😉

Re: side effects of Letrozole

Posted by Faith1 on Jan 17, 2021 8:00 am

*DMT

Thank you for the information on Letrozole. I am happy to hear that you have found some medications that are helping. I already have severe arthritis and this is why I am a little afraid of it getting worse. I guess I will need to try it and see. I wish you well and hope that things get better for you. Faith1.

Re: side effects of Letrozole

Posted by Faith1 on Jan 17, 2021 8:06 am

*Runner Girl
     Thank you for the information regarding Letrozole. I already have severe arthritis and hope it doesn't make it even worse, as I don't think I could handle it. It's too bad they have told me to stop taking the CBD oil, as it was helping with my painful joints and stiffness and a few other things. I am going to do more research on this, and talk to the doctor who discussed CBD oil with me in the beginning. I don't understand how taking other drugs like Tylenol with muscle relaxers, and celebrex would be any easier on your liver? I was only taking 60 mg a day. If you have any more advice on this matter, I would love to hear it. Thank you, Faith1

Re: side effects of Letrozole

Posted by Runner Girl on Jan 17, 2021 8:20 am

Hi Faith1‍ 

It was suggested to me to try taking an antihistamine to help with the aches associated with Exemestane.   I tried and it seems to be working.  Perhaps ask your team if they will allow that.  My other suggestion, would be to try acupuncture,  it worked really well for managing my tamoxifen body pain.

If the Letrozole is too difficult the other possibilities are Anastrozole or Exemestane. Although each comes with their own side effects. 

Runner Girl 
Never stop believing in HOPE because MIRACLES happen every day!

Re: side effects of Letrozole

Posted by Faith1 on Jan 18, 2021 7:29 am

Runner Girl

Hi Runner Girl, I was told to take antihistamine when I wan receiving the Lapelga needle that caused bone pain. It took the edge off. As for acupuncture, I may try this, but I will need to wait until the Covid numbers go down etc.. Thank you for the advice Take care

Re: side effects of Letrozole

Posted by MCM on Jan 18, 2021 9:35 am

Hello.  I was on Letrozole from December 2016 until June 2020 with the only side effect being night sweats.  These I was able to 'control' by sticking arms/legs out from under the covers, so I can only assume I was not experiencing anything severe as some have reported above.  Was taken off Letrozole when I built up a resistance to it.  Wishing you all the best!
 

Re: side effects of Letrozole

Posted by Mammabear on Jan 18, 2021 10:22 am

I was put on Letrozole when my cancer came back (I had been on Tomoxefen before). hated it. Called it the b***** pill and had 10-15 full on sweats a day.
Letrozole was much better. The hot flashes not nearly as bad. I do notice the joint stiffness but stretch every morning to limber up.
I was having bad headaches and fatigue after going on Letrozole so Onc switched me to Exmethstane for a month to see if it helped. 
There are several aromatose inhibitors so if one bothers you, try another. 
I found even MORE hot flashes with Exmethstane and was way more irritable. 
I just switched back to Letrozole. 
I think the headaches were either my 10+ hours of working on the computer or stress. Got some blue glasses and a few massages. 
Bottom line is.... there are lots of options. Try others until you find one that works for you AND keeps your cancer away.

Re: side effects of Letrozole

Posted by DMT on Jan 18, 2021 3:54 pm

Hi Faith1,
My oncologist told me “the beauty of Letrozole is that nothing interacts with it, so take whatever you have to take to stay on it”. I forgot to mention that I frequently take Benadryl or Gravol at bedtime. They are both antihistamines that make you drowsy, so I seem to get a better nights sleep.

Re: side effects of Letrozole

Posted by Patricia Marie on Jan 19, 2021 10:45 am

My medical oncologist tells me that I have to take an aramatose inhibitor for 5-10 yrs.  I had chemo, lumpectomy with 7 lymph nodes removed (2 had small amts of cancer) and 25 radiation treatments.  Started taking letrozole 2 wks post surgery.  Causes much stiffness in my lower body.  I am 65 and feel like I am 85.  Cannot squat to perform low to the ground tasks.  Have to bend over (not good for the back).  After sitting for an hr+, am so stiff when getting up and walking.  I tried anastrozole after 8 mos on letrozole but it exasperated digestive issues that I have.  Wasn't as stiff but had to choose my poison.  Am now trying exemestane and for me it performs much the same as letrozole.  I'm sure my oncologist will let me try the last resort one that starts with a "t" but I  don't think I want to go there.  I'm finding that it is better to know the devil you do than the devil you don't.  I just keep telling myself that having stiffness and the exasperation of the swelling that I already had in my lower left leg is a better alternative than having the cancer return.  At my age am finding that the side effects of a lot of medications do exasperate symptoms you already have.

Re: side effects of Letrozole

Posted by Kims1961 on Jan 20, 2021 7:15 pm

Patricia Marie‍ Congrats on finishing surgery, chemo and radiation!  That is a feat in itself.

I was also put on Letrozole but after 8 months of struggling, I just couldn't do it.  I had fatigue, dizziness, overall feeling of being unwell.  My oncologist suggested i try Tamoxifen - and it's like night and day.  Not that Tamoxifen isn't without it's own side effects but overall they were nothing compared to Letrozole.  Although i was feeling a little like a "guinea pig" - trying meds and combos of meds - it was still worth a try to see if we could find something that worked.  

I hope you are able to find a solution that offers you a balance of the cancer not returning and quality of life.  

Take care, Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: side effects of Letrozole

Posted by Patricia Marie on Jan 21, 2021 8:55 pm

Thanks for your reply and best wishes Kim.
I really didn't find the treatment that bad save for the first 4 chemo treatments.  Had a few bad days with them but last 12 were only hair loss and fatigue. Home after surgery only had small discomfort.  The last radiation treatments were psychologically hard.  My breast looks pretty much the same, just a bit different color from the radiation.
Having a bilateral mastectomy as you did would be far more difficult.
My medical oncologist says tamoxifen would be the last medication to try but that it comes with worse side effects.  I may just stick with the exemestane and using tumeric powder and supplements to try to ease the swelling and stiffness. and hope for the best!