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Ibrance and letrozole

2345678 profile image
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Hi I start I brance tomorrow anyone else on Ibrance and letrozole and what are your side effects

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wendle3007 profile image
wendle3007

You'll find lots of thread about these drugs so it's worth having a search.

I started them both October 2021. With Ibrance I started on 125mg but my neuts were low on both the first two courses and I had to have an extra week off. My dose was reduced to 100mg and I've been fine since and stay on the 21/7 regime. I get tired at the end of the third week of pills and then slowly build back up.

Letrozole strips the oestrogen out of your body and so causes menopause symptoms which are different for each woman. I do get the occasional hot flush but my main side effect is achy and stiff joints. There are various brands of Letrozole and some might suit you better than others so it's worth trying them and asking your pharmacist for the brands you prefer.

Nocillo profile image
Nocillo

I hope you get a good run on these meds. My only real side effect was the eternal fatigue. Like slogging through mud every day.

Discocat profile image
Discocat

Hello good luck on the start of your treatment...hope it all goes well.Generally these are good well tolerated meds.

I've been on these meds for almost 3 years...I was on Kisqali for a few months before switching to Ibrance as my liver enzymes shot up on Kisqali.

Very much as Wendle has said except that I've stayed at the high dosage of ibrance.

I found the menopause symptoms the most noticable....but then I was put into a chemically induced state by taking Zoladex since the start of my diagnosis and therefore my symptoms might be more than yours if you've already experienced menopause.

Advice I can give is to drink lots of water throughout the day to keep your liver and kidneys happy, try to exercise even when your joints ache....I know it sounds counterintuitive but it does help to reduce pain and inflammation.... eat healthy balanced meals ....and avoid any supplements that your oncologist hasn't prescribed as many contradict and can add an unnecessary load on your lymphatic system.

Wishing you all the best!

Zoe

xx

SwedishSissi profile image
SwedishSissi

I have been on these for 18 months. During the first 2 months or so I had a lot of pain, mainly in my back, but it settled down. I generally feel well being on this combo, but it took a few cycles to get the dosage correct.

Beryl71 profile image
Beryl71

I had ibrance and letrozole for three and a half years. I had no problem at all. I changed in the autumn to ibrance and fulvestrant because of a suspicious area on my scan. Good luck, be positive! X

Corvette2007 profile image
Corvette2007 in reply to Beryl71

this is what I am on. I very seldom feel good

I was on Ibrance and Letrozole for about 4.5 yrs, then built up an intolerance to the Letrozole and had to switch to exemestane (Aromasin). At first, I had some hair loss, not bald, but going really thin (about 5 months). The hot flashes were intense for about 2 months, then tapered off to now they are rare. For days 3-7 I would feel achy and tired for the first couple of months, and I have diarrhea most of the month even now after about 6 years. I am really lucky, it took about 18 months, a dbl mastectomy, and a round of radiation, but I have been NED for about 4.5 years. Will gladly trade the diarrhea for a mostly normal life. The diarrhea comes about 30 min after a meal. Imodium helps a ton, but you can't take it too often. I reserve it for when I catch a rare date night with the hubs or for all day sports tourneys when port-a-potty would be the only option. Good luck!

Update: Forgot about the mouth sores, thay lasted a few months, and mainly days 3-10 of the 21 day cycle. I used a good quality tea tree oil on a tip at night, and the would be gone in the AM. Tastes terrible (like Raid), but worked.

bikebabe profile image
bikebabe

hiya - palbo/letrazole since Nov 21 and Yes to all of the above effects (sore joints, looser bowels, slow hair growth, infections) but they feel comparatively easy compared to the chemo and surgical horrors that preceded it. I’ve come through covid twice in it (reduced effects given fully vaccinated), and had major cardiac surgery, but could forget I have cancer were it not for the 3 monthly scans. I also have self injectable denosumab to strengthen bones given my mets are currently I’mbony, and calcium tabs. Keep heart body and mind joyful and as active as you can - best wishes.

Artesa profile image
Artesa

I started both meds last June and have only noticed hair thinning from Ibrance. Initially, I had some finger joint pain from letrozole but that subsided. My fingers rarely curl up so I manually uncurl them.. it happens so rarely. My absolute neutrophil count (ANC) had been ok until recently when they were around .6 two months in a row so the oncologist lowered my dose to 100mg a day. I haven't started that dose yet.

I walk or hike about 4 x a week and do some stretching exercises which has helped maintain my energy. I get a little tired during my 3rd week of Ibrance but nothing too notable. I still treat myself to an occasional homemade cookie but stopped a lot of snack food. I just hope I get a long treatment from this combo as many of this forum's members have.

I wish you good luck and hope you do well on this treatment plan! Reading some comments I can say to avoid the proton pump inhibitors like Prilosec, Nexium or similar class of drugs per the specialty pharmacist. He advised that Pepcid was ok to take but be sure to run over the counter drugs by your specialty pharmacist who ships the Ibrance.

embrace28 profile image
embrace28

i have used this combination for almost 5 years now and took out my liver mets and LNs. the side effects mostly are all minimal and very tolerable. Quality of life is very good. Little joint pain, low WBC (at the start, but as you go along our body adjusts to it). I didn't have to take any pain meds or anything. God bless you!!

Greatday2 profile image
Greatday2 in reply to embrace28

Have you WBC numbers gone up over time?

embrace28 profile image
embrace28 in reply to Greatday2

Yes, so first few months of Year 1, i found myself having to delay my cycles (i did 21 on 7 days off) because my absolute neutrophils were below 0.0 after the Day 7 break. After couple months though my body adjusted and I am already able to bounce back after the 7 day break. WBC was still low but Absolute Neuts were acceptable level to restart next cycle. I hope this helps encourage you! Our body is made so resilient and able to cope

Greatday2 profile image
Greatday2 in reply to embrace28

It absolutely encourages me! Thank you :)

love2golfwell profile image
love2golfwell

I have been on 125 mg of Ibrance and 2.5 mg of Letrozole since November of 2020. The first week and a half I had some nausea. It was recommended that I take Chimes Ginger Chews to help with that and I purchased some on Amazon. I also had Peppermint and Ginger/Peach tummy drops which my daughter sent me that helped as well. I also have had hair thinning which is a common side effect and some achy joints which is most likely from the Letrozole. I have not experienced fatigue and I work out pretty much every day which I feel helps with joint aches as well as overall health. I am stable on these meds and hope they continue to work for a long time. I wish you the best of luck as you start these meds. I hope they work all for you. Also, this is a great site with lots of support, advice and information. Sending you hugs and prayers.

morty87 profile image
morty87

I've been on Letrozole and Ibrance since January 2018 with excellent results. Side effects have tampered off. The have been very similar as those above. I have found that Alleve and a daily Claritin help with bone pain. I had bone and brain mets that were resolved with extensive surgery, radiation and gamma knife. Hang in there - each person is different, and I pray you have good results with minimal side effects.

Lilywallytootsie profile image
Lilywallytootsie

Have been on Ibrance/Letrozole since March 2017 with good results. I turned 78 in February. Fatigue has been a problem more recently. It may have more to do with age, than Ibrance. At any rate it has been a good drug for me. Hope it is a good one for you too. The good news is that there are other drugs that work well too . My advice is when you find one that works, stay on it as long as it is doing the trick and remember most drugs do have side effects. Best wishes and blessings, Hannah

Gigiof2 profile image
Gigiof2

I was on Ibrance and Letrozole for 2 years. Major hair loss and fatigue, but fairly well tolerated. No mouth sores.

lovnmycat profile image
lovnmycat

I've been on these two for 21 months. The first few months had a lot of body aches, stiff muscles and very low energy. Don't panic if your first blood test has low neutrophils. They may reduce dose or just wait an extra week before starting the next cycle. This is very common but for a lot of us the body gets use to it.

They have been good for me but I notice I have to exercise in the morning as the stiffness comes if I try to walk at night. Drink a lot of water too. Good luck.

Conams profile image
Conams

Hi, iIbfrance ce and Letrozole was my 1st line treatment started in 2019 this worked for 5 years. I am also on denusamab bone injection snd Zolodex implant to put me into menopause, so bear this in mind as my side effects could have been not just from ibrance and letrozole. At the begging as far as I can remember my side effects have been manageable and I think we're caused by zolodex menopausal symptoms. I have done really well in this treatments, I had a blip with my lungs which was probably the ibrance, which caused things to appears on ct stand but not cancer. This resolved by reducing my dose from 120mg to 100mg. Generally very good, the cancer was resolved in my lung and liver and I have 4 tiny spots on my spine, which is healing and been stable throughout. February this year it had progressed tumours slightly in my liver therefore I have started a new targeted therapy. It does affect your immune systom which will be monitoed monthy anyway and I gave had several hospital admissions due to high tempeeratue where they give you iv antibiotics, so keep an eye on your temperature as I am sure they have told you. I wish you luck on this, keep positive and hope it gives you a good outcome and length of time on this treatment and remember there will be other options after this X

November1944 profile image
November1944

hi. I have been on Letrozole and ibrance since January 2022. Which affected my hair and nails. Nails are still affected which I take is a good sign the meds are still being effective. Also had the fatigue until ibrance lowered to 100mg, much improved now with no recurrence of ca, touch wood. Best wishes.

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