New to the group but a veteran in the fight

[MamaGirl53]

Hi - I am 72 years old and I have been in the fight since 1999 when I was diagnosed at 45 years old and 2 weeks after the birth of my first grandchild.

In addition to MBC I have Rheumatoid Arthritis so take meds for that. I am BRCA negative. I live in CANADA. I am very active, keep up with my grandkids sliding, shoveling, hauling wood etc - in great shape aside from MBC.

I am currently on Ibrance + ER blocker and Xmeta infusions every 3 months. My counts have been too low since the first round of Ibrance. I started at 125 and got through 3 cycles with having to take a 2 week break between 2 and 3. Then my onc lowered me to 100 when I was just borderline for my neutraphils and platelets and now my counts are too low again. I am exhausted and really struggling with the lows this time.

Background -

1999 Stage 2 B (4 of 19 nodes +) ductal - left side lumpectomy including nodes, chemo, radiation

2013 Stage 3 B Inflammatory - bilateral mastectomy, chemo, radiation, tamoxifen, bone pill daily

2021 Stage 3 B local reoccurrence to 7 of 18 - removed nodes right side, chemo, radiation, Xmeta infusions every 6 months

2021 one miniscule hot spot seen on bone scan - pelvis

2022 same miniscule hot spot seen on bone scan - pelvis

2023 same miniscule hot spot seen on bone scan - pelvis

2024 (June) same pelvis hot spot visible and a second miniscule hot spot seen on 7th rib

PET scan (September) clear aside from the rheumatoid arthritis I have had for the last 20 years and the two hot spots were mildly elevated over the benign threshold (3 and 6)

Radiation (October) to the two hot spots (5 sessions) and the CT in January showed nothing new, stable. Ibrance started in October as well. Xmeta bumped up to every 3 months instead of every 6.

Now Ibrance is knocking me down and I don't have a lot of faith in my oncologist pushing for a better option/different plan.

Reading your posts has been so helpful for me and my family. My daughter found this page and she was relieved to see so many women advocating for better options and better cancer care. Any suggestions would be appreciated.

[Suite1000]

Tell your oncologist that you need a lower dose due to fatigue. I got my lowered and wished I would have pushed for it sooner.

[Discocat]

Hello Mama

Welcome to the site.

Sorry to hear that your feeling run down on your meds.

There are a number of people here who have successfully lowered or changed the way they take their CDK 4/6 inhibitors...(Ibrance, Kisqali, Verzenio) with ongoing stable results and improved blood work.

There seem to be quite a few ways to alter the dosage apart from lowering the actual med concentration.

Some people take it 5 days on and 2 off in constant repetition....others with a 2 week break every month to recover their WBC.

Perhaps they will offer their knowledge here to help you with some options....oncologists are sometimes reluctant to change the dosage....but it seems to work well for many.

I've so far managed to stay at the full high dose of Ibrance for almost 4 years....taken the traditional 3 on 1 off per cycle.

I try to eat a wide variety of fresh veg and fruit to keep my intake of vitamins up naturally as I'm not able to take any supplements due to a liver enzyme reaction to my first treatment (Kisqali). Also having dark greens and some fish to help with iron levels. Drinking plenty of water daily also helps to lower symptoms for our meds in general. I try to have 3 litres of mineral water and teas every day.

I've also heard of people having IV treatments to raise their neutrophils and sometimes blood transfusions....again I'm sure that some feedback will pop up here with suggestions.

A great group of caring and helpful people here!!!

Take care, wishing you all the best.

Zoe xx

[KarenandLinda]

Hi there. You really are a veteran fighter but it seems totally unfair for your oncologist to leave you with fatigue that is really affecting your life. Ask them to explain why your dosage is still as high as it it and what are the alternatives Good luck

[Dragonfly2]

hello and welcome! Your post has echoed many of my steps in this challenging journey…and yes, this website is an important part of sharing and learning about our experiences and histories. I had been on IBrance and struggled with neutropenia as you are. It had controlled my cancer for over 30 months but the neutropenia was wearing me down so I started to chase down studies about alternative dosing , meaning to take the 21 pills throughout the 28 days in a different manner. I just felt that taking poison every day for 21 days and then trying to recover for one or two weeks was not sustainable. Ultimately I changed to a dosing that had patients take IBrance for 5 days and the off for two and then restarting again without a week long break needed. Ultimately I ended up taking more IBrance every month because over 21 days I took 20 pills and then continued to take the IBrance without a break.

It worked! The neutropenia less Ed and I didn’t have those roller coaster riders created by the cumulative meds over 21 days.

Ultimately I went off IBrance because of the pik3ca mutation. However, the alternative dosing gave me some peace of mind and better overall tolerance of the meds. The alternative dosing has become more accepted by doctors who see the positive results in their patients.

pmc.ncbi.nlm.nih.gov/articl...

Do check this out …it may work for you without having to lower your dosage. That’s the link to NIH that explains how it works and the results from this alternative dosing.

Best wishes on your journey…longer and better every day. 🙌

[love2golfwell in reply to Dragonfly2]

Been thinking about you and wondering how you were doing. Are your new meds working for you and are you doing better and able to play some golf? Hoping you are doing well. Sending you hugs and prayers.

[Dragonfly2 in reply to love2golfwell]

Hi! Thank you for checking in with me! The surgery to screw together my ilium had failed.. / of the 3 broke at the fracture line. But I have recovered and feel better than ever. Who knows what the intervention did to stimulate bone growth! Today I felt so normal. Knock on wood. Can’t wait to golf. We’re still about 5 weeks away from that 🥰. Hope you are well as can be. FW just had that big dust storm 😳. Best wishes. 😍

[love2golfwell in reply to Dragonfly2]

I'm sorry that the surgery did not work, but so happy you are feeling better and looking forward to golfing! That is good to hear. I am doing well. Had my 5 radiation treatments to the ilium and they were good. Have a PET/CT scan March 31 and bloodwork. Praying for good results. Sorry about your dust storm. Take care of yourself and keep me posted on how you are doing. Sending hugs and prayers.

[love2golfwell]

You have been through a lot. I agree with everyone else that you should talk to your doctor about lowering your dose or changing when you take it. Hoping you can have a good conversation with your doctor about this. Keep fighting! Sending you hugs and prayers.

[Figletf]

I am 78 and have had MBC since 2018.I had a double mastectomy in 2016 with marvelous reconstruction.I have been on seven different treatments and am currently on Enhertu with no progression for about 17 months.This has been my favorite treatment with the only major side effects being fatigue.

All the best to you since we can only pray for stability knowing there is no cure to date.

[1horse]

Fatigue is a common problem for us on Ibrance. Two things have helped me. First my GP tested my Iron and started me on Iron Ferrous Sulfate 65mg daily and retested me about 6 months later. It is OTC and now a year later, I only take it every other day. Use a stool softener until you get used to it. The second thing that really, really helped me is Resciency ultra potent Mitochondrial & ATP. This blend has PQQ, Alpha-Lipoic Acid and other biologicals I had wanted to try already in it. It was 4 weeks before I felt a significant difference in my energy but I am very happy with the result. Please do your own research regarding herbals. I just think these are two are most helpful for our specific need. Good luck and keep up the good fight.

[Praising]

I’m on 75 mg with neutropenic every month and sometimes held a week. Fatigue as well.