Ibrance and Letrizol

[Tinyboobs]

i was diagnosed with metastatic breast cancer in the spring of 2021. I was in extreme pain in my sternum ribs and back. I was anointed (prayed fir by many) and put on Ibrance and Exemistsne but later switched to letrizole. Pet scans as of 2023 show no more metastatic disease and just scars where there were multiple lesions. I am 73. I am still on the meds to help prevent recurrence. Side affects have caused back pain. One side affect is night sweats and sometimes after the first week back on ibrance after the week off i have a terrible annoying smell in my nose. Has anyone else had this problem ?

[SwedishSissi]

I had really bad back pain the first few months, but it disappeared.

[Hazelgreen]

Congratulations for putting metastatic breast cancer into remission! Very few of us reach that happy state! Although I take both ribociclib and letrozole (on a 5 days on, two days off schedule), I still have many cancer sites (but none are growing). At my age of 78, I assume that I'll die not from cancer, but from old age. I do not have any pain from the meds (or really anything else other than age-related muscular weaknesses).

If I were you, I would stop taking letrozole and Ibrance if I thought the meds were causing me back pain or night sweats or bad smells. At the very least, I would switch to a 5 days on, two days off schedule to see if that made a difference in my body's reactions.

Since you don't have any cancer, and are already in old age, it seems to me that you may be suffering from your meds for no real purpose. Ask your oncologist to schedule you for a CT scan six months after you quit taking meds to see if any cancer comes back. At our ages, cancer is very slow-growing if it grows at all.

[monkeygirl62]

Hello I take letrozole and Ibrance and I have the rare occasional hot flashes but it doesn't bother me. However, I do have body aches with both medications and once I have a hot shower and get active in the mornings it eases up. Gentle exercise and moving around will help. I also noticed a smell on Ibrance kind of a yeasty smell. I shower daily so it wasn't that. It was noticeable on the first cycle that I took Ibrance, I was taking it in the capsule form. But I am now on the tablets and noticed no more smell. Congratulations to being NED, no evidence of disease! If any of your side effects are really bothering you please mention it to your oncologist. There are things that your oncologist can help you with, even adjusting your medication.

[Tinyboobs in reply to monkeygirl62]

Thanks for your reply. I had a knee replacement about a year ago and am back on aquatic PT whuch is helping with the back pain.

[love2golfwell]

I have been on Ibrance and Letrozole for over 3 years. I am currently stable on these meds. I have joint pain in the mornings and insomnia but have never experienced an unusual smell or night sweats. Exercising daily definitely helps with the joint pain and I have been taking a low-dose melatonin for the insomnia which also helps. You should speak with your doctor about the symptoms you are experiencing. Best wishes, Sending you hugs and prayers.

[Tinyboobs]

Thank youlove2golfwell. I do go to the gym for aquatic PT for my back and a knee replacement and that helps a lot!

[Dancing]

hi tiny boobs I was diagnosed in 2016 with a small tumor n I had a lumpectomy n 15 hits of radiation just in case. They couldn’t find any lump nodes at all but Nov of 2021 we moved to North Carolina n I went for my mammogram all previous years got all good news All Clear. Until they found it was back in 2021. I had biopsy n it was back. N I went to meet my breast surgeon n she ran alot of test before doing a mastectomy. I had genetic testing n Ct scan n full body bone scan which found some nodules in my lung n arthritis in my shoulders knees both feet n both ankles n 2 big toes. After that I had a lung biopsy the cancer metastasized n my breast surgeon called me the next morning n told me n I should see an oncologist… I was in shock n I was able to get on that day to see oncologist he put me on Ibrance and Exemestane after telling me I had terminal cancer . I was still in shock after hearing those words. We just move back … we are originally from Philadelphia but was able to get a nice size house in New Jersey. I found a wonderful oncologist n stayed on the same meds. This February will be 2 years.

[Dancing]

I am doing good. I had 2 Ct scans in March 2022 cause I woke up one morning n I had severe pain in my gallbladder n had to wait a week to have it removed that was in March 2022 n it took 8 weeks for the pain to stop. N I wanted another CT to make sure all was ok cause I heard patients had immediately felt better after having gallbladder removed. N all was good. But before leaving in 2023 he ordered another CT scan. N all my nodules shrunk to

Where they were unseen on the scan. I was happy but he told me they are still there n I will always have cancer. But I was happy the meds were working. I had some side effects ungodly hot flashes. But the meds were working. Still on Ibrance n Exemestane. He put me on Gabipentin . I take as needed. My feet always hurt. I had the gout 2 x. N have to see an RA doc for my arthritis n last few months I feel extremely tired. But I am retired n take cat naps all day.

[Tinyboobs in reply to Dancing]

Sorry you have been through so much. It was in 2018 I had my second mastectomy and 2021 when it metasticized to my bones. I chose not to do chemo or radiation. I had my first mastectomy in 2012 so this has been a long struggle. One thing I did after my first mastectomy was to cut out sugar as it feeds cancer and I was clear for 5 years. During that time my first husband got cancer and went through 3 years of chemo before he died is why I didn't want it. In 2016 when he died I got sloppy with the sugar after starting to date and my diet just fell apart and I got cancer again in 2018 but also I believe that stress added a lot to getting it again. But Praising God right now I'm healed but like you I was told cancer will always be there...ready to crop up again even though mine is inactive now but I'm again trying to be very careful about sugar and have check ups every 3 months to keep track of how the ibrance is working and PET scans to make sure there is no progression.

[Dancing]

good morning I am having my 1 cup of decaf coffee n I use sugar. I also am having that pain I had which started in 2018… I told my surgeon n radiation doctors n no one had any answers.. it would come on all of a sudden just reaching for something …leaning over …n one day riding in car my husband said something n I turned my head to answer n it came over me n the pain felt like a heart attack. Like some one was squeezing my heart. My BC is on my left side. So when I needed radiation I was afraid it was gonna damage my heart. I had that pain off n one from 2018 till I had my mammograms in North Carolina 2021 n those gals took so many pics n in middle of having my breast compressed the pain came on. Omg. But it stopped. But the last 2 months it’s alittle different it’s feels like it’s a pain i get near my ribs … if I sneeze , cough lean over the sink or just turn on that side in bed. I ask my cardiologist n he just replied muscular -skeletal. But it scares me n I hold my breast n take slow deep breaths until it stops. I have my monthly oncology appointment n bloodwork this morning. I also know nothing when I look at my labs. Low high. I did see a kidney specialist cause I was told I have stage 3B chronic kidney disease. But she was not too concerned with my numbers. N she saw I had cysts on both kidneys n referred me to a urologist. Had MRI n all was good but they want me to have a ultrasound in 6 months. I don’t drive n I don’t get out much. My husband does all the food shopping n doesn’t like when I go cause I walk around like a tourist lol n he gets what we need n is in n out. We just moved into a 55+community. But I didn’t even make it to our pool this summer cause in May I had my ovaries n tubes removed cause I have a gene mutation BRIP1 high risk for ovarian cancer. Then after that I had a diverticulitis attack n then the antibiotics wrecked havoc on my intestines. I had a endoscopy n colonoscopy in Nov n all was good. Just tired of drs. N i am not eating well cause my husband just had all his teeth pulled n wanted implants n is on a 3 month soft diet. So we are both losing weight. So you have a wonderful day. N thank you for answering my text.