3 years on Ibrance

[DorisGarrett]

I’ve been on Ibrance, Letrozole and Xgeva combination now for 3 years. Was wondering if others have been on this regimen longer. I have bone Mets and some undetermined liver spots. I have tolerated this well but have noticed increased fatigue and joint pain. I have settled on the lowest dose of 75 mg for Ibrance due to neutropenia. Hoping to stay on this for as long as I can. God bless each of us!

[Susan1953]

Doris, I have been on 125 mg Ibrance and Letrozole 16 months. I have bone mets also and have been NED for 12 months. I also have the increased fatigue and joint pain. I think it is very common on these meds. I have 2 friends also on these meds, that have been on them 3 years and they are doing well. God bless us all!

[Barbteeth in reply to Susan1953]

Hi Susan

You give me hope

I have widespread bone mets and was diagnosed 3 months ago due to a fractured vertebrae..taking letrazole and tried Ibrance 125mg but due to low white and red cells I had to stop..now starting 100mg Ibrance and hope I can tolerate this dose

Although only been taking letrazole for 3 months my tumour markers have reduced considerably so I’m feeling a bit better

B x

[Klamato in reply to Susan1953]

You give me hope going forward! I've only been on that regime for 3 months and due for PET scan to see if it's working. If so, I can continue with the same regime. I have tolerated this treatment quite well. I have joint pain, but not too bad, since I'm use to arthritis pain. I have also begun to have constant watering of my eyes along with itching . Small price to pay if this method keeps this ugly disease at bay! Good luck to us all! God bless!

[mulberrylady]

Doris, I have been on 125 mg Ibrance and Tamoxifin for 15 months. I have bone mets and some liver spots. This week my Dr took me down to 120 mg to help with my fatigue and joint paid. I'll let you know if that seems to help me! Good luck and God Bless!

[Tap321]

2.5 years ibrance and letrozole 125 mg. Just some fatigue.

[Dianne417]

Congratulations, DorisGarrett! It's wonderful that you've been able to stay on this regimen as long as you have. I, too, have bone mets in my spine (and pelvis) and have been on Ibrance and Letrozole for a year and a half. I was also initially on Xgeva, but had to discontinue it when I developed medically-related osteonecrosis of the jaw (MRONJ), a rare side effect.

Fatigue is a normal byproduct of the Ibrance, and Letrozole can cause joint pain and muscle stiffness. I have particularly experienced the latter for the last six months. The fatigue can be relieved somewhat by taking a short break from the Ibrance, which you might want to discuss with your medical oncologist. And I have learned recently that exercise (mild stretches and walking) helps a great deal with the stiffness and pain caused by Letrozole. I, like you, am committed to staying on this line of drugs for as long as possible and am grateful that it's working and allowing me to stay alive.

I wish you all the luck in the world moving forward!

[KaerligMor]

I was on Ibrance and letrozole for about a year and a half. After experiencing progression in my sternum, I was switched to faslodex. I have mets in T10 and 11, lumbar, sacrum, coccyx and pelvis. Healed liver mets and surgically removed and replaced end of my right femur. Dxd metastatic 5 years ago and still here! 😁

[Epinto]

Hi Doris. I have been on faslodex and ibrance 125mg for 26 months for bone Mets to T2 area. I always wonder how long it will last. It is encouraging to hear that u have been on it for this long with good results. I am going for my pet scan this Tuesday and hope for good and stable results. Keep it going and yes I have joint pain in my knees, especially when walking up steps!

[SeattleMom]

Hi, Doris!

Thanks for your update. I've been on same regimen now for the past 8 months. For me, it always seems that my joint pain kicks in during the week that I am off Ibrance.

I'm curious as to whether you saw a continued loss of hair throughout the past three years, or does it ever subside? I'm trying to be so careful about not washing my hair as often and being cautious when brushing.

My dosage of Ibrance, by the way, was reduced to 100mg a month ago due to low WBC's. You must have been one of the earliest patients on this protocol? I've no idea when Ibrance was first made available.

Again, appreciate your post. Bless you! XO Linda

[DorisGarrett in reply to SeattleMom]

I began taking Ibrance in July 2015. It had just been released in February of 2015. Just recently I have noticed an increase in hair loss. I too shampoo less some times every three days. I will have scans again in September. Praying for stable results. I am so fortunate to be in a backdoor to my oncologist at UNC Chapel Hill North Carolina. They are always on the cutting edge of the latest and greatest protocols.

[SeattleMom in reply to DorisGarrett]

I feel like you, Doris--so fortunate to be about 10-15 minutes away from the Seattle Cancer Care Alliance and have great oncologist. As for the hair loss, I bought one of these from Amazon to have, if needed, down the road:

amazon.com/Full-Shine-Exten...

[StE72]

That is wonderful news! Keep it up!

[charlie1712]

Susan 1953-I have been on Ibrance for 2 years on the 125 mg dosage. I had to stay off an extra week due to neutropeniathis last cycle. Additionally I take monthly fluvestrant injections and Zometa infusion. I have MBC with Mets to lower spine; small lesion stable for 2 years now so it appears this combination is still working thank the Lord. Due for scans this month or next month. I have noticed this month that I have more fatique and an increase in bone pain. So anxious to get blood checked on Tuesday. I, too, have used “it is what it is” since dx w/agressive lobular carcinoma in 2011. We have to stay strong and do whatever we can to live with MBC. We all know it’s hard but we can all still enjoy life.

[theresac1]

Hi All, I have been on Ibrance and Letrozole (Femera) for the past 13 months, with mets to the bone. I have tolerated this medicine quite well. I am working full time as a 5th grade teacher, and thank God, I didn't get sick at all last year. I have my blood count is typically between around 900-1500, which falls into the mild neutropenia. Do any of you take Zometa or a Bisphosonate for your bones? I am starting this next week. ??

[lynnhbtb in reply to theresac1]

Glad you didn't get sick, especially being around all the students. I'm on Ibrance, Faslodex and Xgeva for bones, which is a bone strengthener, but a monoclonal antibody, different from zometa. I just got this from the breastcancer.org website: "Zometa also is used to lower their risk of a skeletal-related event. A study has found that Xgeva (chemical name: denosumab), a targeted therapy medicine, is better than Zometa at reducing the risk of a skeletal-related event in women diagnosed with metastatic breast cancer that has spread to the bones." FWIW

[PJBinMI]

I got nearly five years from Letrozole/Femara after being diagnosed with denovo mbc in 2004. I was also on Zometa, which was the "new" bone drug then, for bone mets, the only mets I've had. I did have lessened bone pain when I was switched from Letrozole to Faslodex. I had already been on Celebrex for arthritis in one wrist, and I believe it did alot to relieve the bone pain. Whenever I've had to go off Celebrex for a procedure, I have developed bone and joint pain, which goes away again once I start up the Celebrex again.

[theresac1 in reply to PJBinMI]

Hi PJBinMI, Did you have any side effects with Zometa?

[BeckyHobson]

I was on Ibrance 100mg and Letrozole and Zometa for about 18 months before I couldn’t tolerate the joint pain any longer. Doc switched out letrozole for Aromasin with continued Zometa quarterly. The joint pain went away and fatigue was the only side effect. Got a full 26 months out of initial drug regimen as my doc says letrozole and aromasin are identical drugs.

PET scan confirmed recurrence in my spine this May so did some radiation and doc has added Faslodex to my drugs. His thought is that we can’t be sure the Ibrance has completely quit working so why not stay on it too?? I’m always game for something new. Joint pain in legs and knees only and have super low White counts (1.15) and neutropenia (.86). On call doc told me to quit taking my Ibrance when my doc was on vacation but I ignored him. Labs again this Tuesday so we will see if I made the right call.

New scans due in September and praying for the best and staying eternally optimistic.

I honestly feel that we have this disease at the right time and that a cure is so so close for us. We just have to fight the good fight as long as our vessels allow. Best wishes and prayers to you !!