Hello everyone. I’m very nervous and don’t know what the future holds now that I can’t take Letrozole. I have been suffering from interstitial cystitis for over 30 years and the Letrozole is causing horrible bladder pain. I’m also on Ibrance. I’ve been on these meds since 11/20 and things have been great. My Onc said to set up an appointment with my urologist but I don’t see how that will help. It’s the cancer drug causing the pain. I guess I’m just wondering if any one knows if there is anything else I can try. My Onc, whom I love btw says she is worried I’m not taking the letrozole. I just can’t live with that daily pain. I’m thinking about going to Dana-Farber for a second opinion. Thank you for listening and sharing your thoughts. I find this forum to be extremely helpful
Lori-Ann🙏🏻
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There are other cancer drugs I was put on a rigid ex after breastfeeding cancer I was in so much pain then they put me on Exemerstane for 2 years then I was put on letrozole for 7 years after I came off end of August after 10 years now having bowel problems colonoscopy on Thursday for suspected colorectal cancer keeping my fingers xd..
Hi. Not sure where you are in the world but CBD and THC have shown great benefit for both management of pain and cancer. Watch some of Dr Christina Sanchez work, Corrie De Yelland, Rick Simpson. I hope this may help you. XX ❤️
Definitely get a second opinion. Not sure if you are post menopausal. Has there been any talk of putting you on Fulvestrant? It works by blocking the effect of estrogen, slowing tumor cell growth. HOW TO USE: This medication is injected slowly into the buttock muscle as directed by your doctor. It is usually given every 2 weeks for the first 3 doses and then monthly thereafter.
Another for the chorus for Second Opinion! DF is great. Agree that Fulvestrant could be a good option: depends on whether you are post menopausal, or if so, whether you had a recurrence despite treatment with tamoxifen and arimedex.
Hi Lori Ann: Sorry you are having so much pain. Not sure why you think it is the Letrozole that is causing the problem. In any case, good advice from Colleen. See a urologist. Also, not to worry. There are lots of other drugs to take in place of Letrozole.
Hello Lori-Ann. I am TPBC, so I know nothing about Ibrance, but a lot about Letrozole. I took Letrozole 12 years ago after a few years of Tamoxifen . The side effects were do sever, I was obliged to stop. Now that I have mets, I shall be taking Tamoxifen again. It works great for me. Some believe that Tamoxifen is only pre-menopausal, but it is not the case; Tamoxifen works both pre and post menopausal. I am certain that an oncologist can fit the right treatment for you. A friend of mine has been changing meds every few years, and she's been living with TNBC for over 16 years.Good luck, please don't panic, you'll be fine..
Definitely get a second opinion at Dana Farber, as well as a urologist/nephrologist. There are other options to letrozole, like tamoxifen as other have said. Good Luck and dont give up!
I have some of the same thoughts. I have a new grandson and my only one but some days my pain level is very high. I am unable to do a lot of the things I would like. When your cancer is in every vertebrae in your back and in the rib cage it’s hard to stand for very long. I also am unable to sit for long periods so it’s not just a simple answer to just go and do. It’s also a matter of money. It’s never a simple answer
So sorry for your pain! I have 3 grandkids and when I’m with them is the only time I forget my Mbc. My advice is to spend as much time with your grandson as possible!🙏🏻
I don't know if there is any correlation between interstitial cystitis and interstitial lung disease--the term interstitial caught my attention. I was on Ibrance for only a few cycles in 2016 along with the Faslodex I'd been on for several years, and developed ILD. Both my onc and pulmonologist said it was likely from the Ibrance. Apparently for awhile after FDA approval of Ibrance, this side effect had not been identified, but now there are alerts about breathing issues with Ibrance. So I wonder if it could be the culprit, rather than the Letrozole. Letrozole (Femara) is one of three aromatase inhibitors that those of us with E + may benefit from. It and Arimidex are both non-steroidal AIs and oncs seem to prefer one or the other. But I've heard from quite a few bc patients that if one gives them trouble, sometimes just swithing to the other can help. Talk with your 2nd opinion onc abut this. I hope you will end up with a plan that works and that you are at peace with.
Thank you. I went off the letrozole for a week and my bladder pain went away. I went back on it for 2 days and the pain in my bladder unbearable. There just has to be a better solution. I pray every day!
Nunky-------You are so right! We really rarely understand our power. It is our body. No one else knows it and cares for it like we do. It is so interesting that when, after hearing and reading about the options, I have decided on a direction that is perhaps not the one that is recommended by medical professionals in that particular surrounding, the doctors and nurses listen. Flex your muscles!
Hi Lor-Ann, I am facing the same decision, but have only been on Letrozole for just over 3 years. I oscillate between French herbal tablets called Confort Urinaire and anti-biotics to try to manage bladder pain. A hot water bottle on my lower abdomen also brings some comfort. But I would like to see data on recovery from bladder pain from those ladies who cease taking letrozole. H Mac
Hi HazeyMac I found my cure from bladder pain in the supplement called Uqora. My urologist recommended this and it has been a life saver. Do some research on this. I only take 2 pills a day. They cost about $28 a month. No side effects. Best of luck. I hope this works for you!!
Wow. I'm reading post because I'm having urinary track pain. After 3 years on leteozole Maybe it's the leteozole? I know you posted a year ago any update?.
I couldn’t take Letrozole because of bladder pain. It could be related to my urinary diagnosis of interstitial cystitis. Not a fun disease. I still take UQORA once a day and that does help. I am currently in a clinical trial at Dana Farber. So far so good. Wishing you the best!
Good morning, Thank you for the time taken to reply. This is also new to me after 3 years of no issues. I'm getting good information from you as a starting point to discuss with doctors.
Hi! After taking letrozole with In dance with wonderful results, I had to stop the metronome because of the stiffness and pain. I now take the faslodex shot once a month. It is much more tolerable, and I am still stable.
I couldn't tolerate Letrozole. Severe hip pain. Onc switched me to anastrozole (Arimidex). Much better. I was on Arimidex for five years after original cancer. Didn't have recurrence for 13 years, so onc felt that there was no indication that the Arimidex was ineffective.
I have bladder pain and urgency and am on letrozole and Ibrance. I take over the counter Azo for the bladder pain and moisten my vagina with coconut oil. This helps as our bladder and vagina get very dry from the estrogen blockers
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