because I only have been on Ibrance and letrozole only 2 weeks I was wondering if the side affects could get worse before they get better. Right now the only side affect I have is constipation. Do the side affects get worse as the drugs accummulate in your body?
Another question is for the ladies who have it in their lungs. Do you have coughing because of it being in your lungs? If you did, does the Ibrance lessen the coughing?
Hello, I did not find that the side effects got any worse with Ibrance. I hope you have much success on it!! That's the game - finding what works!!! Wishing you the best!
The most common side effects of Ibrance on here seem to be fatigue (often in weeks 3/4 of the cycle ) , hair thinning and mouth ulcers , tho’ not everyone gets the same side effects , and joint stiffness due to the Letrozole. Should any of these affect you , there is lots of useful advice on here from the ladies who have had them , so do a search on Healthunlocked , or post a question on here and I’m sure someone will have some useful tips /advice . And keep drinking lots of water as this itself can lessen some of the side effects . Take care ! x
No ulcers in my case. Just fatigue. Off Ibrance because of Covid. Letrozole, Zoladex and Denosumab only (!). Can t say I have felt the difference other than a less dry skin!
Has the fatigue reduced during your Ibrance / covid break ? Any idea yet when you will go back on Ibrance ? Hope you are doing well without it ! Much love x
Feeling much the same! First PET scan showed disease still stable after a couple of months off Ibrance. Hope I can go back on it very soon.
That’s reassuring that your scan (PET) showed you are still stable after being off Ibrance a couple of months. Did you request a PET scan ( not routinely offered here ?) . I hope it continues for you x 💟
I always have PET scan as disease was not showing too well on CT scan only
I had a constipation issue before I started the meds. I finally started taking the Publix brand of Miralax, and it really helps. It puts water into your colon or something like that. I drink lots of water, but it wasn’t the same. I was taking it every day, but now I take it two or three times a week, as needed.
Also, if you’re on 125 mg, don’t be surprised if your ANC is low after your week off. There aren’t many who get to stay on that strength for long. I was only on it for one month and went straight down to 75 mg. I still can’t keep my neutrophils up.
Hi. I don’t experience many side effects with Ibrance except thinning hair. My Mets are to my lungs but I didn’t cough before I was on Ibrance so I don’t know if it lessens cough. I have fibrosis and atelactasis in my lungs which makes my breathing more difficult than normal.
How long have you been on Ibrance? Does your hair shed?mine does a lot and is much thinner although I think I can see growth. how long has thinning gone on for and do you get new hair coming through?
Thanks
Hi, I originally lost all my hair when I was on chemo for 8 months. I have only been on Ibrance and Letrozole for 2 months now. I do find that my hair is starting to come back but still very thin on top. The back of my hair is thicker and curly. I am hoping it will eventually get thicker up top.
Hi Gino21, I have been on ibrance and letrozole for 2 years. To start with I was always exhausted but that fades. You have to pace yourself, nap when you need. I have had thinning hair problems. My hair was not very thick to start with so as I don't want to look 103 I wear a wig 99% of the time. It looks very good and I found it through the charity that recycles wigs in the UK. Occasionally I get mouth ulcers but not nearly as bad as at the beginning. I use a good mouth wash Difflam. All the best, we are here for you, Fay
Hi. I am just starting my second cycle of 125mg Ibrance and Fulvestrant. I felt really tired this month and had mouth ulcers and tonsillitus. I also have no appetitie which led to dehydration. I've lost the 10lb's I gained during lockdown, but not too worried about that. I'm hoping I feel better this month, but will deal with whatever pops up. I do have a tendancy to push myself and need to remember to slow down when I feel crappy.
I'm so thankful for this medication and even on the bad days, it's nowhere near as bad as the chemo. I don't think I could go through that again.
Thanks for this forum! It's a God send.
I have mets in my lungs and my coughing really improved when I was on ibrance to virtually nothing, I had tiredness for first two cycles then was fine, only really symptom that I had was hot flashes from Letrozole, good luck
I have found that my body seems to have adapted. Still fatigued, but every cycle is different.
Hi there. My ibrance side effects (I took it for16 months) lessened over time. I had pain, extreme exhaustion, mouth sores and rash. The skin issues cleared in the first several weeks. The pain subsided as the tumors receded. The exhaustion only improved when I dropped from 125 to 100.
My hair began thinning at 4 months. I quickly bought anti-thinning shampoo, made an essential oil and vinegar concoction and bought an LED light helmet. The thinning slowed significantly. I'm pretty sure it was the helmet, because when I don't use it for awhile, the shedding picks back up. I later bought a handheld device to help with my nails as they are wanting to pull away from my nail bed. I also coat them in castor or jojoba oil several times a day. They are better.
Even though there were some side effects, I wish I could have been one of the lucky ones to stay on ibrance for years. I certainly hope you are!!
All the best, Andi
Ibrance can damage the lungs, so if your lung symptoms/side effects change, let your onc know ASAP. I have permanent lung damage from just a few cycles of it, a condition called Interstitial Lung Disease, that my pulmonologist described as being like "gunk between the air sacs." Fortunately it is only at the bottom of one lung, but I still get out of breath easily and can't be outside when it is humid. A friend of mine died from lung effects from Afinitor when it was newly approved and neither her onc nor the ICU doctor put 2 and 2 together and kept giving it to her as her lungs were failing. So I am possibly over reactive about lung issues and these meds, but I don't want somebody else to die or end up with permanent lung damage!
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