Hello

I was on ibrance 125 mg and now is on 75 mg because my Absolute neutrophil count (ANC) (measure of the number of neutrophil cells that is the white blood cells that fight against infection) was too low (it needs to be at 1000 so i can start another cycle of ibrance, and with the previous dosage i ended up around 500).

Now i am fine, i am only very tired the last 4 days of the 21 days Ibrance cycle

Due to letrozole/femara, i have had joint pain and deformities in my fingers as well as foot

Now the doctor wants me to see a rhumatolog as well as take xgeva (for my bones)

I walk a lot (10 km a day) and do yoga (lyangar) that helps a lot ; i do not go to swimming pool for fear of getting an infection.

Regarding the urge to urinate, i have it also but seems that it is due to fibromes...

With the combination of ibrance and letrozol, the volume of my breast tumor has decreased in 8 month of 80% so it is worth for me all those side effects

I hope this message helps

My cancer was discovered by accident. I had severe anemia develop rather quickly. August 2016 my HGB was 14. My routine labs in January 2017 showed it down to 10. An internist did a couple of exams to rule out internal bleeding, and my lab work revealed that I was not deficient in Iron, B-12, or Folic acid. A couple of weeks later, I was hospitalized with tachycardia. The cardiologist who saw me in the hospital noted that my HGB had fallen to 9 one day after it was 10 when I was admitted. He referred me to Texas Oncology. I was terrified, asking him if he thought I had cancer. He told me that since the usual causative factors for low HGB were not present that oncologists were also board certified hemotologists, and that type of doctor would run the necessary tests to find out what was causing my anemia. This relieved me somewhat.

I saw the oncologist a week later and by then, I was really dragging, had no energy. She did the standard lab workup and also tested me for Multiple Myeloma. I was relieved when the lab work was negative. But we still did not have an answer, and my HGB had fallen to 8.5! She had me come in for a packed red cell transfusion. She expected the count to go up to 10.5. It only went to 9. So two days later she had the procedure repeated. This time it rose to 10, and I felt much better. But we still needed to find the answer.

Next was a bone marrow biopsy. A few days later she called me and told me that she had a diagnosis. Then she made a remark that totally blew me out of the water. She said: "You did not tell me you've had breast cancer." I told her that not only had I NEVER had breast cancer, but that no one in my family on either side had ever had it. She asked when I'd had a mammogram, and I told her 10 months ago, and that it was totally negative. I also added that 8 weeks previously I had also had a breast ultrasound performed by a breast specialist which was also negative. She then told me that the lab reported Metastatic Invasive Lobular Pleomorphic Carcinoma of the Breast. I thought the lab had made an error.

Next she ordered a PET scan. The report came back: No Active Tumors. I was now certain that the lab had made an error. Next she ordered a mammogram and ultrasound study, both of which were negative. Then, she ordered a 3D mammogram, and that is when we caught it. It revealed a mass in my right breast and two severely affected lymph nodes in the right axilla.

At this time I was referred to an oncologist whose specialty is breast cancer. I did not know what I was facing, so I resigned all my committee positions and offices as well as the choir. Since I didn't know how the drugs would affect me, and not knowing if I'd ever have a chance to go on vacation again, I asked the doctor if I could delay starting my regimen until I returned from my trip a week later.

By this time it was early June. He put me on 125 mg of Ibrance and also Letrozole. My tumor marker was 390. I took the Ibrance for 3 weeks, then a week later lab work was done. The good news is that my HGB had risen to 10.5 and I had no discernible side effects. The bad news is that my WBC count had fallen from 4.8 to 1.8!! So instead of waiting one week to restart the Ibrance, I had to wait two weeks, and he lowered the dosage to 100 mg.

In July, my lab work showed the HGB having risen to 11 and the WBC count was up to 3.0. The tumor marker had crashed down to 170!! I lost a small amount of hair, but no big deal. So he kept me on the same dosage of Ibrance, and I was taking the Letrozole daily since June and am still on it.

The August lab work was even better. HGB was up to 11.5 and WBC count was up to 3.8. The tumor marker continued to fall, now down to 109.

By September, my voice was getting lower due to the estrogen blocker, which played havoc with my singing (I went from singing soprano to singing tenor). But . . . no problem . . . I was still alive and feeling great.

In September I continued to get good news. My HGB was still climbing, and was now 12 and my WBC count was up to 3.8. My tumor marker had fallen once again, this time to 78! My doc called my case "bizarre."

October labs showed the HGB to continue to rise, to 12.5, but my WBC count had fallen to 3.0 again. The tumor marker was down once again. this time to 55.6 and I could hardly believe it.

November revealed the HGB was 13. The WBC count had remained at 3.0. The tumor marker was 45.5.

December lab report showed the WBC count to have fallen to 2.8, but the HGB was holding at 13. The tumor marker was down to 41.6.

Four weeks later, Dec. 28th, labs showed the HGB to be 14!!! The WBC count had fallen to 2.8, which bothered me, but my doctor assured me that my neutrophil number was 1500 so he was happy with that. My tumor marker is down to 35.6!!!! I've developed only one other side effect, and it is from the estrogen blocker . . . chin hair. Luckily I'm an Electrologist, so that is no problem.

I have a very positive attitude about my progress and in February I am taking my first vacation in 13 years, which is over a week long . I'm going to Australia for 2 1/2 weeks using my air miles and staying with a friend. I have people from all the major religions (and some minor ones too) in many countries around the world praying for me. I think this is a huge part of my improving results every month.

Hello Bretzprit Thank you so much for your detailed overview with numbers I truly appreciated it. My mom has S4 ILC w/Bone Mets out of the gate. She completed our first round of Ibrance 125mg. (3wks on 1 wk off).

Over the last four weeks, mom has experienced fatigue in the evenings and morning nosebleeds.

Her WBC, Platelets, Neutrophils are very low therefore she can not begin another round of Ibrance. She will return next week for a CBC to see if her numbers come up and we will then begin her next round of Ibrance at 100mg.

Mom received her first shot of Xgeva. So since Monoclonal antibodies are made to target and destroy only certain cells in the body. This will help protect her healthy cells from damage. Xgeva will help prevent bone fractures as her bones are weakened by the breast cancer that is in her bones.

We will wait till Monday to receive the results of her COMP Panel which will tell us how her alkaline phosphates, AST, ALT numbers are doing.

1/18 Alkaline Phosphates were 344 Week 3 of Ibrance they are 311 they need to be between 33-130

1/18 her AST was 100 Week 3 of Ibrance they were 68 they need to be between 10-35

1/18 her ALT was 82 Week 3 of Ibrance they were 56, they need to be between 6-29

So this shows that for this period Ibrance was doing its job.

Mom will also begin 2 tablets daily of calcium and Vit D to keep her strong, as the medications may bring these numbers low.

During your experience with ibrance and femara did you have to take a week off for your numbers to come up?

I have been taking arimidex or letrozole with Ibrance for almost 3 years. Mostly I feel very tired my 3rd week of Ibrance (2 more days this month!!!!) but I did find that if I get a cold or something, the fatigue is overwhelming. I think the other symptoms you describe are probably from the letrozole. I take oxybutinin because I couldn’t live with the hot flashes and it also took care of the urinating frequency. The insomnia is probably also the letrozole. I have tried everything first, but when I get desperate I take an Ambien. I know it seems crazy, but you are probably getting more sleep than you think. It helped me to remove the clock from my room. After I did that, I would just wake up, go pee, grab a sip of water and since I didn’t feel like I was watching the hours crawl by, I felt more rested

I am on ibrance 21 days on and then have 11 days off (The week off isn’t long enough for my wbc to recover). My ibrance is combined with 2 hip/butt injections of Faslodex (ouch!) and an injection of Zoladex in my stomach to suppress my hormones every month. My hair has thinned a lot and is feather fine, like down, though it’s near chin length. My skin is extremely dry. I take lyocene supplement otherwise I get huge, terrible canker sores. My body is sore and tired and I’ve lost muscle mass. I’ve been on this treatment for about a year now and so far I have not had any progression with cancer! Yay! I’m still here! I’m having reconstruction surgery soon to switch out implants and I think I need to be off ibrance the month ahead of surgery, may 21, so when I see my doctor tomorrow for my injections (all 3!) I’ll find out protocol. Anyway, so far, ibrance has been successful.

Hello everyone! I'm new to this site and am so happy to have a place to discuss my side effects.

I am currently 68F, was diagnosed with Stage 11a breast cancer in 2007, lumpectomy, chemo, radiation and 5 yrs of the hormone suppressant.

In 2015 I was diagnosed with Stage IV metastatic breast cancer to the lung (1 sm tumor). I started on Afinitor and Exemstane combination and stayed on that successfully for 3 years. Another tumor popped up last January 2017, but continued the same regimen to see if it grew. ln November 2017 when we decided to do Stereotactic Body Radiation Therapy (SBRT) which was 5 treatments of laser direct radiation to both tumors. It takes awhile for the results, but my PET scan in February showed the uptake was way smaller and it was working. I went on Faslodex injections in January (being off all meds for 3 months was a joy!), to see how I tolerated it before starting Ibrance. I had the typical hot flashes and bone aches, but that was my new normal anyway. Started the Ibrance in February. Since then I've been so very tired, even some depression. I take zoloft low dose, but doesn't seem enough. I was hoping the crazy dark winter was part of the problem. Now that the sun is shining and I'm pushing myself to get outdoors, it seems to be better. If I could, I'd be on the couch half the day! My tumor markers have dropped back down to the 40's (my high was in the 90's) -- and I'm very grateful for each day. Trying to get back into golf and keep traveling. Thanks for listening!!

Hello everyone. Stage IV, mets. Well, I am a rookie to Ibrance (started last night). Spent 3 years on Anastrozol. When that quit working I was put on Faslodex injections every four weeks. That seemed to work well til several months ago when my tumor markers started going up. Oncologist put me on Ibrance (keeping the Faslodex injections and the Xgeva shots also). Very nervous about the Ibrance - the side effects mentioned in this blog and the ENORMOUS cost. I don't know how the cost will sort out but obviously I cannot afford $10K per month so if that doesn't get resolved to a workable level I'll just need to give up. I was diagnosed almost five years ago and I'm 73 and had a pretty good life. If this is it, I'm OK with that. Thanks in advance for your support and feedback.

Thanks for your reflective reply to my question. I haven't posted a reply in a while, but I do  appreciate reading your detailed sharing of information. I haven't been able to get through one complete cycle of Ibrance. My wbc drops so low after 14 days - like .5 or .6. My OC says she can't safely let me continue Ibrance when I am I a state of neutropenia. It usually takes two weeks off for my wbc count to reach .1 again.  I do appreciate the holistic medical care I am receiving; yet, I am concerned about cancer spreading elsewhere in my body from the mets on my bones. I have been on Aromasin (Exemestane) for one year and an half to treat my hormone-receptor-positive breast cancer / Stage III.   The numbers on my tumor marker tests are increasing and I have hurting in my right ribs / abdominal area. My right side feels atypical to the left side. Lots of discomfort after I eat. I had two gall bladder test done and my gall bladder is just fine. I had an x-ray done and there was no evidence of broken or fractured ribs. My PET/ CT Scan shows mets on every visible bone on the scan. Hopefully, the Xgeva monthly shot will help promote some protective scarring on the bone mets.  I have been on this cancer healing journey since April of 2015. I am finding it to be a comfortable seat in God's waiting room. Wow! I am learning to wait and trust God's for results- one blood test after another; one scan after another; and one day of life after another. My OC said I would be on Ibrance indefinitely. I want to stay with the med as the other two cdk-4/6 inhibitors seem to have more concerning side effects. 

MAWS / Turning 70 in June and Blessed!

Pfizer will help ......Ibrance is relatively new...pfs...are the key words...everytime you read articles it extends life..that is because of the time it has been FDA approved...best to you..

HI Wandering,

I read your May posting. I am 70 years old and yes, there are days when I spend more time looking back than ahead; yet, I'm determined not to let metastatic breast cancer kill my momentum for making fun future plans even a month out! I have been on Ibrance since January of this year. The 125 mg didn't work for me; nor did the 100 mg. My neutropenia condition has prevailed even being on 75 mg with five days on and two days off. So today, my oncologist said "enough". It's time for plan B - another CDK 4/6 inhibitor. I have cancer mets on all visible bones in the Pet/CT scan. The Xgeva shot that I get monthly has helped the pain on my ribs, but some days are challenging. My goal is to make my Silver Sneaker class three days a week with a smile and a readiness to move - not matter what! I tell my fatigue to behave and my pain to be quiet.

 I was diagnosed in 2015 with Stage 3 metastatic breast cancer (many lymph nodes involved). As an allergy/ heart patient, the only aromatase inhibitor I can take is aromasin. I was so hopeful of Ibrance working well for me, but I am learning to view treatment as being in God's waiting room while He works behind the scenes to do what is best for me even when I have to wait a few weeks for the details. Stay encourage and yes, I have had a wonderful life and  the best is yet to come. 

Just finishing up my 3rd round of Ibrance and letrozole. Side effects haven't been too bad except more fatigue lately, have lost my eyebrows, some bone and joint pain and very thirsty Blood work has been fine and scans CT/Bone scan every 3 months

I was originally diagnosed with stage 3 estrogen positive breast cancer in Sept 2010. Did chemo, radiation and 5 years of letrozole and got the all clear. In may 2018 found a large cyst on left ovary which was benign but pathology found breast mets in both ovaries

just finished my 3rd round of Ibrance/letrozole. I was diagnosed stage 3 2010 and in april of 2018 mets was found in my ovaries. I was wondering if anyone else had worsening bladder leaks? I'm 65 and have had slight leakage for years but is wirse lately. Wondering if this is an issue best handled by family doctor

Mini9045: In response to questions - I was diagnosed 5 years ago. At first, when I would go out shopping and running errands - I would stop about every 20 minutes and sit down for a few minutes. Now I don't need to do that. Sometimes I don't stop at all. If I get tired - out of the house or in town - I sit and recover my energy. When you are with your grandchildren - you might plan on someplace where they can be active but you don't need to be - a playground with benches, picnic, movies, etc. You can still spend time with them but not be as active as they are.

I am on a 100 mg dose of Ibrance. When you read through the blog, you will notice that others have been put on the lower dosage with success in controlling the disease but with fewer side effects. If you are on the higher dosage, you might check with your doctor about a lower dosage. Best wishes.