Ibrance (Palbociclib)
Comments
-
Shetland - Thanks for all the data you've shared over many months on this thread. Wishing you well on Affinitor.
Cure-ious - My onc did add Faslodex to Ibrance and Femara when my mets became active again. I didn't have any problem with insurance coverage. So that may be a viable option for you in the future.
0 -
Moissy- Good to know that! And, probably it worked, or is still working?
0 -
Cure-ious -
In theory you don't need letrozol if you are on faslodex because faslodex destroys the estrogen receptor. Why suppress estrogen when you have no receptor? That might be why the idea seems illogical to your onc. However, I not confident they know how these drugs work and quite sure the story we get is over-simplified.
On the face of it, taking letrozol and faslodex is not hitting the cancer in two different places. If adding letrozol to faslodex increases side effects, it may not be the best way to go, if you don't get a bimodal assault.
But maybe you are ... I've dug into letrozol a bit and found that it may do more than just suppress estrogen.
So that's the backstory on adding letrozol to faslodex, as I understand it.
DEVELOPING NEWS STORY
My complementary onc has put me on clinical synergy honokiol, horse doses of turkey tail (3000mg per day of JHS coriollus) and homemade bulgarian yogurt (lots of bifdobacterium) and my neutrophil count is rising. In December, it started dropping below 1000/mm3 after my week off and I thought I was going to have to lower my ibrance dose. My last neutrophil count was 1600/mm3 on day 14 of taking ibrance.
Based on this trial of one, I can't say conclusively whether these supplements are helping or if it is something else, but it was my Complementary Oncs intention to soften the blow to my immune system. He's been working with Ibrance since it was in trials at the Mayo clinic and this protocol is specific to people on Ibrance.
I wanted to put this out there after reading Most Capable's post. I also once responded to cure-ious saying there really is nothing you can do about the low neutrophils but lower the dose of Ibrance. I am not sure about that anymore as I have had a clear improvement in my bloodwork this past month without lowering the dose.
I have been doing a lot better on the exercise front, but my gut is that is an effect not a cause of the improvement in my blood work. Who knows. Will keep you all posted.
>Z<
0 -
my wife had IBRANCE-125 for a week and yesterday we got her CBC DONE ,Her platlets are very low-14k,Heamoglobin& Nuettophils -Normal .inseeing the blood report the MO Stopped IBRANCE For a week to let her build up the platlets.the platelets were 17k when she started IBRANCE after WHole brain Radiation.i am afraid that this gap of one week would worsen her condition.plz let me know your experiences
0 -
thanks for sharing Z! I think I need to meet with an integrative oncologist. Most curious - thank you too. I'm anxious to hear what my MO will say. All three drugs were new to me. It's hard to tell which one is resulting in my SEs. Maybe all three
0 -
Hi Z,
I asked about adding on Faslodex in the context of talking about tumor cell heterogeneity, ie, assuming that the newly resistant cells have mutated ER, and thus need Faslodex or one of the newer SERD drugs, but also imagining that some cells remaining would still have functional ER and be held in check by the Femara. Some phast III trials are looking at combos including Faslodex/CDK2,4 inhibitor (either Ibrance or the other ones)/PI3K inhibitors, I'm hoping one of these pans out and to be able to move to a combo that still includes Ibrance-like drug.
I'm very interested that your neutrophil counts are going up, that's a big jump!! I tried taking extra week off and all kinds of B vitamins and garlic, and my counts are barely at 1000, just up a tad from the previous reading of 900. I have a complementary med doc who initially recommended turkey tail, astragalus supreme, stamets 7, chinese red ginseng, and prescription Celecoxib (a COX2 inhibitor for inflammation and arthritis)- of these my MO nixed them all, except for the Celecoxib, which she very strongly supported for its anti-cancer activity. She didn't have a particular problem with the others, just wanted me not to be taking so many things until we knew that the Ibrance-Femara would work. Seeing your great results, now I'll try adding the turkey tail and look into the honokiol! What were the changes you made in these supplements or in the amounts you are taking that might be responsible for the increased neutrophil counts? Thanks!
0 -
Cure-ious - I was not taking any turkey tail, honokiol, or bfidobacteriuim in tasty yogurt form in December when my counts were low. I started the three supplements in early january and I had that big uptick in neutrophils by the end of january. if i were to do it again, geek that i am, i would add one supplement for a month, check my neutrophils, then add the second supplement, check my neutrophils, add the third in the hope that would give some sense of which supplement(s) really drive the neutrophil jump. as it is i have no idea.
My gut is that primarily the turkey tail effects the neutrophils so i would start with that one. But who knows. Interested in the results of your experiment. I would use the specific supplements that i linked to above. It does matter how the stuff is prepared.
looking into celecoxib.
>Z<
0 -
Cure-ious - I fall into the situation you describe. I have extensive bone mets and one lung met. I had reached no evidence of active disease while on Ibrance and Femara. But eventually, a few bone spots became active again although the vast majority of my disease was being held in check by the Ibrance + Femara (including the lung). So onc added the Faslodex. Subsequent scan was stable.
0 -
hello everyone. I dont post very often but i do read along and wish everyone well with this challenging diagnosis. It have been on Ibrance/Femara since June 2015 - so about 20 months. I have responded well to it, with very few side affects. Initially i had lots of fatigue, but with a reduction in dose to 100 mg, it became manageable. My original met was to the supracalavicular node on the opposite side, no where else. My scans have been clear (every 4 months) and my TM is normal. But having reached that magic 20 month mark of average duration of response I wonder how long it will last. I would appreciate knowing long everyone was on the combo, and for those no longer on it, how long it worked for you.
Appreciate any and all responses.
0 -
That is great new Zarovka. From the descriptions of the products, it's probably the turkey tail. My wife went on mushroom extracts and her neutrophils went from 1.3 to 3 point something. We've been experimenting with various types and seeing the results on her blood tests. I want to read up on that honokiol. Sounds interesting.
Edit: Oh crap, it inhibits platelet function. My wife can't use it since she is on blood thinners.
0 -
Z - Thanks for the reminder on turkey tail. I had researched and started taking it when I started Ibrance because my counts dropped so low. But I stopped when I developed high liver enzymes the next month (possibly unrelated), so decided to basically cut all supplements, and my liver count went back to normal. I was freaked about the liver then, so decided not to go back on supplements that could cloud the issue. Never happened again. My liver's fine and could have been a random Ibrance thing,
One thing I had been concerned about was if the turkey tail could possibly compete with Ibrance on any of the cell signaling. Does your integrative onc get into that level of science detail? There are probably no answers for this, but just curious. So I've decided to add to your turkey tail clinical trial of one and make it two. I'm going to at least finish the bottle I already have and see what happens at next labs.
0 -
Hello all, still here-just haven't posted much lately. Happy for everyone's victories, and pulling for everyone with uncertainty right now. I'm scheduled for a PET scan on February 17th, first one since September. I pretty much know because of some funky back pain and rising tumor markers that the beast is rearing it's ugly head again. Scan will determine whether I continue with Ibrance/letrozole or switch to Falsodex. I'm on my 8th round. My MO shared with me that Jackson Labs here in Maine has newly developed genomic testing for breast cancer, and may offer free testing for all Mainers with breast cancer. I'm pretty psyched about that! MO also said he is sometimes hesitant to order the testing because of receiving a whole lot of info that may he not know what to do with.
Hang in there everyone, and may the force be with you. MJH
0 -
MJHMJAN - we are rooting for a good scan for you. However, if there is progression, your onc may wish to add faslodex rather than try it alone given your liver issues. My "twin" Naturegirl who started Ibrance+fas on the same day with me last year is now on Navelbine IV for her liver mets after Ibrance+fas, Megace, and Xeloda failed her. Shetland please come visit us with your lovely dance. We are rooting for Afinitor! Z - my jaw has healed completely, had a deep teeth cleaning today and will get 2 crowns (on the non-radiated side) of my mouth later this month. I put off all dental work until the jaw rad was under control, but my dental insurance ends in March. ugh My next PET is end of March, hoping my TM's go down on my Friday visit to UCLA. Timefora - I am on round #15. Cheryl - will I see you at UCLA on Friday in the rain? I will be getting another IV of Vitamin C next week.
France awaits in July....(()) Claire
0 -
Moissy - I can only say that the doctor i work with is comfortable with both the standard of care and complementary protocols. He's not one to reject chemos and standard treatments. He's been working to support the ibrance protocols since they were in trials. His recommendation to take turkey tail is based on both research and experience with ibrance.
MJH - The promise of genetics tests is often not realized because you don't always get actionable information from the reports. I am with your doc on that point. However, I will have it done at some point. A free test is good and there is a chance you will get some actionable info. The truth is that the main mutations to look for are pretty well understood so it's likely the test you have access to is as good as any. Very interested in how that goes.
Good luck with your scans. I hope very much they are clear, but if not faslodex will work well on its own or paired with one of the targeted therapies. Shetland just went through this, of course, so if you scroll back through this thread you will find her summary of options and her thinking process. All very useful as Shetland is very thorough in her research.
Thanks for checking in and know that we are thinking of you as you go through the torture of these diagnostics.
Timothy - I hope it is only the Honokiol that inhibits platelets? If so, forget the Honokiol and rock on with the turkey tail. We have so many ways to support our treatment, it really doesn't matter if one does not work. There are too many options. The problem is narrowing down the options to a few that will do the trick.
Time for a Cure - there are people who have been on ibrance since the original trials. That would be 6 or so years at this point. I would expect to be hanging out on this thread years from now. That's my plan. Years from now I'll be the crazy lady whose been babbling on the Ibrance thread about turkey tail and the gut biome for ever. So far it's been 13 cycles for me. Only 60 to go.
>Z<
0 -
Hi MJH, I am also having a PET/CT scan on Feb 17th. I'm a little nervous about it because I'm now on cycle 13 of Ibrance plus letrozole 75mg. I was dx stage IV de novo in Dec 2010 and was on anastrozole for almost 5 years before progression. As far as I know, I only have bone mets. I had a rod placed in my left femur in Nov. 2015. I haven't really felt much different, but who knows what could be going on inside. This has been a fairly easy protocol, but if this fails, I have made up my mind not to do any chemo. I will be 70 in June, and only wish to live out my remaining days pain-free without feeling sick from treatments. Are there any other new treatments similar to Ibrance that I might be willing to try? I rarely post, but I read the information from all of you very learned ladies. I appreciate your input.
Diane
0 -
This thread moves fast. Haven't read it in a while have been feeling sick. Lulubee, I thought of you the other day went I went to the ER with chest pain and SOB. Told the MD worried about PE or pleural effusion. I read my 12 lead also, so I knew it wasn't cardiac. Did a CT scan and I have the start of pneumonia in addition to the stomach virus. Great. Hopefully Levaquin will do its job. A weird thing the ER MD said - I thought you said you had mets on your ribs. I said yes, have pain in that area, going to do radiation. He said the radiologist didn't see any - What?? Have my PET/CT scans, lab work and Zometa on Friday to add to the mix. It will be interesting to see what the scans show since I "blossomed" in November, hence switching from Xeloda to Ibrance/Letrozole. My CA 27/29 went up to over 200 last month so the 3 day wait to see if that TM has dropped. I took the week off work to rest and recover.
Z - read with interest on your turkey tail addition. The University of Minnesota is doing a trial with them. My MD said that if I were to start taking them, he would have to monitor my liver enzymes. My daughter dries mushrooms. Did your MD say anything like that to you?
Shetland Pony - I did the LEE011 + Ful Trial Phase II at UAB in 2015. Surprising the SE were not to bad. Flew back and forth to Alabama. I lasted 4 months on that trial, then CA popped up in my liver so I was booted, then went to Xeloda. Good luck with your decision. You have a wealth of information. There is so much support here with such amazing women
Started Round #4 today. Still at the 125 mg dose. Labs have been pretty steady. I hope to get many years out of this combo. Good healing thoughts to all.
0 -
I was wanting to see if anyone has had this happen. I went in last week for my annual pap. I have been on ibrance/letrazole/gedatolisib for 5 weeks now. The dr ofc called this morning and said my pap was irregular and I needed to have a biopsy. They said it can be from inflammation. Can the tx I'm on cause inflammation? I'm freaking out. I just had my ovaries removed a little over a month ago and they were clear of cancer. I only have bone mets that we know of. I was scanned last time January 3rd. Ct and bone scans. Thanks for any advice
0 -
Is there anyone out there who has been on Ibrance and had to decrease dosage due to neutropenia? I had 6 cycles at 125 mg and am just starting my 6 sixth cycle at 100 mg. I have been neutropenic the last two cycles. Going into this cycle with an ANC of 800. I take the Ibrance along with Faslodex 500 mg monthly.
My oncologist is considering decreasing me to 75mg if the neutropenia continues. So my second question is, if anyone out there has been on Ibrance 75 mg how many cycles have you had?
I'm so afraid of having to decrease to 75 mg because I don't know what lies ahead for me as far as treatment goes after that. I've already had 16 mo of Afinitor and had to stop that due to pneumonitis.
Dx: 2000 Stage II with lymph node involvement followed by chemo and radiation and 5 years on Femara
2011 New occurrence Stage II with lymph node involvement. Double mastectomy followed by chemo and Aromasin
Oct 2014, METS to lung pleura and chest wall. Afinitor 16 mo with Tamoxiafin
May 2016 Ibrance 125 mg with Faslodex x6 cycles
Sept 2016 Ibrance 100 mg with Faslodex, starting g 6th cycle.
Thanks.
0 -
Diane - You have a few more hormonal treatments to blow through before chemo. Faslodex and exemestane are the standards, but there are a couple others. Check out the full list in BestBird's guide. There are other non-hormonal options to consider as well. Low dose chemo works for many people. It's referred to as metronomic dosing. There are also chemos like Xeloda which are easily tolerated by many. Again they are learning the lower doses work well so that is lowering the SE's. I think your decision to feel well is actually going to help you do well for a long time.
Mediclisa - Interested in your scan results and especially the rib met mystery. I have enough anectodal stories in my files of scan results being wrong to be very skeptical of scans. My complementary onc said nothing about monitoring liver but I will ask for a liver function panel next week.
Apg - Oof. All I can say is that I haven't been doing pap smears since all this MBC stuff went down. I guess I need to do that. Sending hugs and waiting to hear how this plays out for you.
Mominme - I would say that more than half the people on this thread have reduced their dose or modified their dose schedule due to neutropenia. It seems that Ibrance works fine at lower doses ... as if the people who have to lower their dose are simply more sensitive to it. A few weeks ago, I would have said just lower the dose and don't worry about it as there is nothing you can do.
However, I just noticed this past month that my neutrophils increased significantly after I made a change in my supplement routine. I started taking 3000mg of JHS coriolus super strength, 500mg of Honokiol and eating bifdobacterium in the form of bulgarian yogurt in early January. My neutrophil counts have almost doubled in a month. I was on the verge of dropping from 125mg to 100mg but that is off the table now.
A number of people on this thread are going to try it and we'll see if they get the same results. Increasing neutrophil counts is the kind of thing these supplements are supposed to do. I am hopeful this may help others. The general agreement is that the turkey tail (coriolus) is most likely the supplement effecting the neutrophil counts and the place to start.
>Z<
0 -
mominme, are you restarting your next cycle after a week off, no matter where your counts are, maybe to stay on schedule with Faslodex? I was taught (UCLA) not to restart until my counts come back up to 1000 -- just to wait a few extra days, rather than lower dose. I'm out of sync with Faslodex, but have stayed on 125 mg for 18 cycles that way.
0 -
My brother's platelets were doing okay with 125mg, around 2.0. But his platelets went down to 45 (normal at least 130), so I think it might be better for him to try 100mg when he starts back up in the next week or so. Funny thing is that his white cells aren't affected that much by any treatments. Just his hemoglobin and platelets.
EDIT: His platelets dropped to 19. I'm trying to find the guidelines for platelet infusion.
0 -
Hi Ibrancers - here is my 3 month update. Got the results of my quarterly CT and Bones scans yesterday. Stable scans, good consistent counts and lowest tumor marker ever at 28. Will be moving from bi-weekly labs to monthly, and monthly Xgeva injections to quarterly. I have widespread mets to bones and mets in both lungs. Have been on Ibrance/Letrozole since May of 2015. Currently on 75 mg of Ibrance. Prayers and well wishes to everyone on this board. I'm not much of a poster but I check in frequently.
0 -
Zimmerwoman -Congratulations! Very good news. I hope I have the same news tomorrow with my scans and that my CA 27/29 score has come down.
0 -
Whoo, this thread is moving like a zipline- too fast for me!
Z- Good idea, I will start with the Turkey Tail and see if there are any changes in the neutrophil numbers (or liver enzymes) in my next blood draw; I have also been concerned about not adding supplements that could counteract the effects of any of the key drugs, but given the option of either dropping to lower Ibrance levels or taking more time off treatment, I'll give it a try, and if not try your other two fixes individually, see if one of those works.
0 -
lalady, dc197, Z, I can't tell you how nice it was to hear all of your voices. I have been in a bit of a funk and rather morose as of late, but I felt so supported by your encouraging words.
lalady, glad you can get the dental work done now. must be such a relief for you. Ahhh- France in July-perfect!!
dc197- ask about Falsodex? I get it about not wanting chemo, but keep in mind lower doses can be given with less SE. I'll send positive energy to you on PET scan day!
Z- I hope you ARE the babbling crazy lady on this Ibrance thread after 60+ cycles!!!
love to you and all here-may the force be with you MJH
0 -
Z, I will be talking to my clinical trial dr on Monday when I get my tx. I'm not sure if they will want me to do a biopsy now or wait. I posted on the ibrance Facebook page asking if anyone had this happen while on letrozole or other mess. A woman said that it had to her, the dr did a repeat pap 3 months later and it was fine. I've been reading and it seems it is rare for it to go to the cervix/uterus but it can happen of course. I have no issues so I'm hoping it is just inflammation from the meds.
Also, I'm still tolerating the gedatolisib well. I have 1 mouth sore now but it is nothing like it was. I haven't had the rash come back. I know the other girl that posted on here is no longer on the trial. We were actually going to the same place and I met her! I was so bummed she had to be taken off. She is so sweet and it was nice to have her to talk to. I will get my scan in 3 weeks.
0 -
APG - I was told by my onc when I had early stage chemo years ago not to even get a PAP for some period of time that I can't recall now because the chemo could cause a false positive PAP. If you just had chemo in 2016, it's possible that could be affecting it. Also, menopausal changes/low estrogen can cause abnormal PAP results as well.
0 -
Thank you, Moissy. I should have asked before getting my pap but it was a follow up from my oophorectomy and it was time for my yearly so we went ahead. My obgyn is not affiliated with my cancer team. Thanks for that information. I will not get too worked up about it until I talk tony mo next week! That eases my mind a bit!!
0 -
APG- Yes, between your chemo, the ooph, and lower estrogen with letrozole, I'm betting that combo affected the PAP. I would definitely talk to your onc first before consenting to a biopsy by the ob-gyn. Most likely they will just retest later.
Zimmer - Congrats on the great scan results.
Mediclisa - Hope all is uneventful at your scan!
0 -
APG- Yes, between your chemo, the ooph, and lower estrogen with letrozole, I'm betting that combo affected the PAP. I would definitely talk to your onc first before consenting to a biopsy by the ob-gyn. Most likely they will just retest later.
Zimmer - Congrats on the great scan results.
Mediclisa - Hope all is uneventful at your scan!
0
