Ibrance (Palbociclib)

GinnyO2

Hi Sondra, thanks for replying so quickly! First I’d like to encourage to call your MO on Monday and let them know about your new breast issue. Perhaps they can move up your visit from Thursday,to earlier in the week.
Im praying that they’ll see you sooner. Im so sorry for all your going through and hope you can get relief soon, mentally and physically.
You are so fortunate to have access to such highly trained group of specialists!
We do seem to have a bit in common. Cancer doesn’t run in my family either but cardiac issues are a definite issue. I have a pacemaker with left bundle branch block ( electrical issue) and vascular disease . I don’t have bone Mets nor do I have pain, just severe leg weakness right after the Fulvestrant shot and it lasts a few days and then it returns with all over fatigue on the week that I’m off. Hope we both get good reports this week!

I’ll look forward to hearing about your update sometime this week.

Ginny

Ps. Don’t forget to check with MO for an earlier appointment.

Husband11

Way to go Ciaci! There is nobody more vested in your success than yourself. This clearly shows the empowerment of independent thinking and experimentation. I hope this experience will be shared and help others.

Husband11

That interaction between ibrance and atorvastatin is frightening, because that is what they are prescribing to women on the COC protocol. My wife who is on ibrance plans to start atorvastatin as part of the COC protocol.

Ciaci

Husband, as long as they monitor it closely, and are mindful of the dose, it shouldn't be a problem. Just make sure your wife notifies them of any muscle pain (mostly legs); they can change the dose or dosing, and there are so many statins out there, they can easily change it if it becomes necessary. Why start with the Lipitor (Atorvastatin) then? Because it's the gold standard, and works so well...

As for those who don't know, my husband was/is a pharmacist (since retiring, hasn't kept up with continuing education, but as he says, he knows what he knows, LOL). So I was confident in my "experiment", because he researched the half-life of Atorvastatin, and was comfortable with my skipping a day. Also, he preferred my taking 20mg every-other-day to lowering the dose to 10mg because of the way it's absorbed and eliminated by the body, and my doc agreed with him.

Cure-ious

Husband, the COC protocol should just switch to pravastatin or Crestor, these do not use the Cytochrome P450 3A4 that Ibrance uses to be degraded. In my case the build up was gradual over time (I was on the combo for years before the problem developed, but it was definitely due to the combo) and the pain was upper arm muscles. Of course it will depend on the level of statin, and I was taking a rather low dose of the statin, which might have been why it took awhile..

Husband11

Cure-ious, do you know if pravastatin has the same pathway blocking ability that COC is using it for, as atorvastatin?

Cure-ious

Ah, good point, I do not know if the statins are equal in their cancer-blocking activity, Pravastatin, in particular, is excreted just as it is, does not engage any enzymes to break it down.

However, the question is also how well does COC understand what the statin is doing to block cancer?

The data I like best is that statins inhibit the YAP1 oncogene, I assume all statins do this but will go read about pravastatin or crestor in cancer

Cure-ious

OK, in this paper if you look at Fig. 3B, Pravastatin works comparably to Atorvastatin to inhibit Yap in cancer

https://www.nature.com/articles/srep30483

However, other reports indicate differences among statins in anti-cancer activity and so far I didn't see any reporting specific statin inhibition for ER-positive MBC

In particular, Crestor and Pravastatins are hydrophilic and the others are lipophylic and there are big differences in other parameters; clearly the Atorvastatin/Lovastatins have good anti-cancer activity, so maybe Ciaci's approach of lower-dose is the way to go...

Husband11

Thanks Cure-ious.

denny10

My goodness this site is brilliant; full of intelligent, helpful and supportive people.

Ciaci, Husband11 and Cure-ious I don't take statins and I don't understand what you just discussed, but I am bookmarking your comments, as who knows, I may need that information in the future. Thank you.

JACK5IE

I was on Lipitor and asked my doctor to change it to Crestor based on info that atorvastatin interferes with Ibrance. Should I have stayed on Lipitor after all?

Cure-ious

Hi Jacksie, That;s what we were discussing- are Crestor or Pravastatin as effective as the other statins when it comes to inhibiting cancer cells? For me its kinda a moot point, since when I dropped atorvastain for two weeks the pain died down a lot and then just one pill and it came roaring back, so I can't take it. However, atorvastatin is by far the most frequently prescribed statin, and in the literature I see reports the other statins are just as effective against cancer and conflicting reports that they are not.

So since you have no muscle pain, why not stay on your atorvastatin or lovastatin, but just be aware if you get any generalized muscle pains that could be coming from the statin-Ibrance interaction? The other thing, obviously, since both use the same enzymes, would be to take them at opposite times of the day to try to reduce competition for Cyp3A4. And FYI, I take the highest level of Ibrance, which could put me more at risk of this drug interaction...

JACK5IE

Thanks Cure-ious. I have pains in my knees, ankles and instep both with Lipitor and Crestor (so far). I guess I'll see how my cholesterol is at the next check-up but for now I'll stay with the Crestor based on this.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511828/

And this:

https://www.drugs.com/drug-interactions/palbociclib,ibrance-index.html

BlueGirlRedState

Ginny02 - not so much leg weakness, but definitely fatigue, maybe it feels the same? Fatigue seems to be reported by many women taking Ibrance. When hiking uphill, my thigh muscles complain very early in the hike, as if I had been hiking a long time. If I continue hiking, the fatigue/tiredness usually goes away. I've had to cut back on weight lifting, both upper and lower. Still doing the same exercises, but less weight than before. Use the treadmill, and have cut back on the incline and speed, still work out the same amount of time. I usually feel more tired from the workouts than I used to. Sometimes I wake up very tired and a ittle achy, even when I've slept through the night.

Cure-ious. I had frozen shoulder about 1 1/2 years ago. Before the most recent Dx and Ibrance. Do not take Statins. A PT gave me some exercises, and after each visit increased the number of reps and/or added another exercise. The results were almost immediate. I had done regular stretching prior, but never these particular ones. I still continue those exercises with my workout even though the shoulder has thawed and feels pretty good now.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?

Swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.

8/2019 CT, Breast/chest , neck/thyroid ultra sound

9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)

9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.

10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.

GinnyO2

Hi Everyone ! Great news! Got my CT scan results today and they are negative for any kind of issues!! This after only 6 cycles!
Thanking God for answered prayers and for all your support ! Doc agreed to my taking an extra 10 days off before starting my next cycle. He said it’s reasonable to take a few days off as it might help with the side effects including my low blood counts.
I start back on the 19th which allows me to enjoy a few days with my son who will be visiting from out of State and to attend my grandson’s band music recital on the 17th!
Thanks again guys ! Praying more of us get good news that includes at least a bit of time off ....especially for the holidays. Love to all

Simone80

Congrats Ginny! It's time to celebrate!

Piggy99

Ginny, this is awesome news! Enjoy the break form the meds and the holidays!

dutchiris

Awesome Ginny!

Cure-ious

Ginny, How sweet it is!!!! And days off during the holidays are the best gift!!!

BlueGirl- With your frozen shoulder, did it hurt more at night? Was there a significant nerve problem in the arm as well? I ask because my PT said the initiation presentation I had was not typical of frozen shoulder, it was less stiff and more painful for longer, so I was wondering if it had distinctive properties attributable to Ibrance-statin cross-reactivity...

BLMike

Ginny -- That's fantastic and so encouraging. That's quite a holiday present for you and your family! Here's hoping for continued future CT scans.

JACK5IE

Great news Ginny!

Husband11

Ginny, that is fantastic. Thank you Lord!

Tanya_Djamila

Great news Ginny!

Tanya

ZZZAAAZZZAAA

any one have ibrance for free for my mother and send us to egypt it s very expensive here in egypt

Simone80

ZZZ,

Pfizer will help pay for ibrance. I signed up when I first started and I pay nothing. I worked with my nurse to submit the needed forms. Your MO or NP should be able to help.

jaycee49

Assistance programs, whether from Pfizer or foundations, are only available to US residents. This woman is in Egypt. I remember when provinces in Canada were negotiating prices with Pfizer and so to with European countries. It took years in some cases. I'm pretty sure patients died while waiting. Very sad. I have no idea how someone in Egypt would cope. ZZZ, would there be any charitable organizations that would help?

Anonymous

Woohoo Ginny!!

Afternoon all! On my week off now. Concerned Cycle 3 might be delayed a bit due to Optum formerly Briova changing delivery dates for me twice now on my refill. Supposed to show up today, currently looking for a brown truck amongst snow covered branches. It was a winter wonderland when I woke up this morning. All the branches and everything coated in a thin layer, it was quite beautiful. Needed it as a pick me up, feeling quite somber lately.

On a side note Gabapentin IS helping with the pain. I saw the suggestion on the Facebook stage 4 forum a few times from ladies who said it helped with spine Mets. A few others also chimed in with success shortly afterwards. I too can claim success, 200mg morning and afternoon is enough currently to take the edge off and let me move. MO said lots of room to move up as needed.

Really tired today, definitely need to rest body and brain. Dealing with multiple time delays getting Ibrance to me I don’t think is helping. Will be dancing again after another short intermission Hope everyone is doing well!

Husband11

Gabapentin is sleep inducing. When I was taking it, I only took it before bedtime. Knocked me right out.

Penny-78

Yaaay Ginny!!!

candy-678

Ginny- WooHoo !!!!

Hi to all !!!!