Ibrance (Palbociclib)
Comments
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Hi LovesMaltese,
Well, progression is distressing but it is where many of us are heading, so please keep posting! Any information from your many MOs about this next step is so valuable. Did they test you for a PI3KCA mutation? If you have that, it seems like a great idea to try a PI3K inhibitor, like Taselisib, with faslodex as in the Sandpiper phase III trial. Apparently they would prefer not to use this drug in the first line, because when the cancer cells become resistant to AIs, they turns up the PI3K pathway, and so the cells will more reliably and robustly be sensitive to the drug. And if you are not getting the Taselisib, you would still get Faslodex (and placebo), which is what you would get anyway, right? However if you don't have over-activity or mutation of the PI3K system,you may not get any benefit from the drug, so maybe they need to test for the mutation or activity of the pathway before they can make their recommendation? Also, did they mention how long this treatment can go? I think you can get along with this for years...
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Cure- I am not sure if they tested me for the p13k or if this would be in my pathology report from bone biopsy. I am not at home so I don't have my pathology report accessible. I am looking at the trial options he wrote down. I believe you are correct. First line standard treatment he suggested next was faslodex not under trial suggestions and then the list went on.
Under Clinical trial he had Er/? Then next he wrote P13k and a couple other ones after that.
One positive thing he said is I have many years and not to feel insecure because I'm off of meds. He said if you were my wife I would not be worried right now that you are taking a few weeks off. Then I looked at him and said I think you meant your mother or aunt or grandmother.
Hugs Carol0 -
good morning all,
Carol, bad news/good news, but it sounds so promising. Sometimes I think it's a good thing when our MO's are out for whatever reason & someone new comes in & looks at our file. I don't know anything about the PI3K but I know that the Sandpiper trial is available here & I'm happy for that as I'm not sure if I will get as far as you did in this trial. Day 12 & I'm starting to feel tired & short of breath coming upstairs, low WBC I think. Tuesday will tell, labs.
good luck with the scans, good thoughts only. cheers, dee
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Dee, Ibrance kicked my butt period with numbers tanking and fatigue but if it had kept me from no progression I would have stayed on it forever. I'm a week off tomorrow and still feel tired. I think I have failed more the letrzole with the Lower dose of Ibrance didn't cut it. Ibrance is still so new to have hard facts what failed but IMHO I needed higher dose to work.I know zip about SE to the p31k trial but sure will keep everyone here posted till I know what is next.
Hugs Carol
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I received my Luminal B status when I got my HER2- status. My oncologist uses it to determine treatment approach. Her feeling is that if I were Luminal A she might not have even tried ibrance. She would have put me on femara (or the like) and tried that. Her feeling is Luminal A just doesn't respond the same way B does to chemo. I'd prefer to be A since it "seems less scary," but my oncologist has assured me that simply being HER2- is what is most important.
Stanford told me the progesterone level doesn't really matter; it's whether or not you are estrogen positive. Who knows. What I do know is that my estrogen is high. My progesterone, while still positive, is lower, and that I am HER2- and Luminal B. After three months on ibrance I had a very good response.... my cancer is regressing. My oncologist is recommending surgery + radiation because she feels I "will live a long time." I suppose that's a relative statement, but hearing that months after this terrifying diagnosis is a huge mood-lifter. I am exhaling.... just a bit.
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thanks Carol for your words of wisdom. I was thinking that maybe Ibrance isn't right for me but you're right, as long as I'm progression free, tired or not, I should stay on it. cheers, dee
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Loves- I'm sorry to hear you have to change course. So glad that you are getting the best of DF's oncs and their collective wisdom. Hope your treatment choices become clear and easy to make. Hugs, Moissy
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Loves, sorry to hear of the progression...but you didn't fail treatment, it failed to control the cancer. And it did fail you with all those unwanted effects.
You were truly heroic in hanging in there with the treatment regimen!!!
Try typing pi3k into the bco search function for over 150 promising posts!
See you at the liver mets topic, if that's your next neighborhood.
warm healing wishes, Stephanie
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Thanks Steph I am reading there already. Will have confirming MRI tomorrow and results Wednesday.
I can only find one person that is on the Sandpiper trial. Unless my searching is wrong. She posted only once. After looking at my options without my MO advice yet, it would be a no-brainer to do the trial because once you are on faslodex you can't qualify for sandpiper. But looks like it should be coming off of trial soon. What do I have to lose? If it's a placebo for Taselisib I still will have that option if it's approved. Maybe they will FDA it quicker like they did the Ibrance
Special heart warm hugs,
Carol
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Hi Carol Loves,
Do you know if they do tumor profiling for pi3k targeted therapies? Can they do it for you/your tumor?
Over at Smart Patients, especially in the kidney, melanoma and lung cancer communities, I see that targeted therapies work best in those who actually have the identified mutations being targeted.
In metastatic breast cancer, except for hormone receptor and HER2 mutations, many therapies seem to be dispensed like scatter shot - we'll just shoot everywhere and hope to get the culprits.
I think this was most apparent in the use of Avastin for breast cancer. Some patients responded very well, but most didn't and it wasn't identified beforehand which would benefit and which wouldn't. There were significant unwanted, even fatal, events/effects with the treatment and the FDA withdrew approval in 2011 (google it for more information).
A similar great enthusiasm for a new drug/treatment arose with everolimus/Afinitor in MBC, but again - some patients' cancers responded well, while and many suffered without disease response.
My personal take is that most patients are willing to grasp at almost any potentially helpful therapies, including Phase I clinical trials, and most drug companies are willing to promote their products to the widest consumer base possible, so adequate studies aren't done to understand which therapies target which cancer subtypes/mutations will respond and which won't. The harms of trying an unproven treatment can be immense and should be undertaken with altruistic conviction (I do believe in the importance of good clinical trials!).
The combination of patient need and pharmaceutical company greed is a volatile mix.
Hope this makes sense. I'm tired and may have veered off topic quite a bit.
much loving kindness and care, Stephanie
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Carol... thank you very much for sharing your story with us. I'm sorry there was progression, but I LOOOOVE what the doctor told you-- that there are many options!!! That is why we are lucky. I also love hearing yours is slow-growing. Great news. Please keep us posted. Sending you lots of well wishes that this next line will do the trick.
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Carol -Taselisib was tested with fulvestrant in a phase II where they specifically looked at whether it was more effective in women with the PIK3CA mutation and the study showed that the response was much higher in women with that mutation. This makes sense since the drug targets that aberrant pathway. It means a biopsy of the current tumors, but certainly worth knowing your PIK3CA status before you make a decision about that trial.
I have personally had the experience of being pushed towards a trial would not be good for me, so, Stephanie, your point is well taken. There is a lot of pressure on doctors in research hospitals to fill these trials. In my the local onc was more objective about the benefit of the clinical trial and gave me better advice.
That said, the Sandpiper III trial is very interesting. I would consider it myself if I were progressing. Faslodex will likely be the next line for me if Ibrance/letrozol fails. Taselisib+faslodex was well tolerated in that phase II trial with Common Grade ≥ 3 adverse events (AE) were colitis (13.3%), diarrhoea (11.7%), hyperglycaemia (6.7%), and pneumonia (5%). Better numbers than Ibrance. They got a decent response in tough population (41% of the women with the PIK3CA mutation).
You are clearly getting the best care at Dana Farber. Thank you so much for taking the time to write to us about it. I am very interested in everything your doctors say and your own decision making process. I don't yet have access to that level of doctor. I hope the MRI finds that the "lesion" in your liver is really a legendary pokeman. If not, I'm looking forward to hearing how you are doing over on the Liver Channel.
eelder - this luminal type A/B discussion is really interesting to me. I did not have the test, but my cancer presents as Luminal Type B. Both you and I have this more differentiated/active cancer and both of us are doing well on Ibrance. Meanwhile Carol has a less aggressive cancer and did not respond as well. This supports your doctor's logic in putting you on ibrance. Sounds like my doctor took the hail mary approach that Stephanie (LongTermSurvivor) alluded to and got lucky.
Someday they will have this all figured out. In the meantime, I get my best information here. By far. Please keep sharing ladies.
I had a tooth extracted last Monday and my face exploded with pain and inflammation. I've been on pain killers for a week and antibiotics for 3 weeks now. The area is still tender and inflamed today, a week later. I've been able to ramp down the pain killers a lot for the last 3 days but I am healing very slowly. I suspect the Ibrance.
I schedule the extraction for the beginning of the week I was off Ibrance, but I think I am going to take another week off of Ibrance until the tooth has healed completely. Even if Ibrance doesn't effect the wound healing, just can't take the Ibrance SE's on top of all this right now. I have worked out some flexibility with my onc on this. I wish I could see her, but she is hard to reach outside of scheduled appointments..
Does anyone else suspect that Ibrance effects wound healing?
Thank you ladies!
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Hi Z.... not sure about ibrance affecting wound healing. But, my doctor plans to keep me on ibrance/letrozole when I have surgery - before/during/after.... SOOO.... I can conclude she doesn't think it will affect me negatively. Hope this helps?!
Wish we all didn't have to think about this so much and worry about so many little things. I choose to focus on the fact that we're lucky being HER2-, but once in a while I wish I could have a few days off
Sending healing thoughts to all! We've got this, ladies! We do!
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Steph- Z, thanks for info. I checked my bone biopsy and there was no mention of pik3ca status either positive or negative. But with the Sandpiper 3 trial I get the faslodex which is next in line for me. If I do just faslodex I lose that trial option if the faslodex alone fails. My assessment from radiologist regarding liver was highly suspicious but MRI has to confirm so we can get on with the show here. No Pokemon, MO said it was still to small to measure on CT but probably is progression. Remember, I was 18 years remission before my stage4 last year. My bone biopsies said negative to estrogen last year but obviously it still is and that was Dana Farbers call or else I would have already done Xeloda. I had 10 months on letrzole and Ibrance that kept me stable with healing mets. That's amazing to be able to get the same AI to work some after that time lapse. If I could have tolerated the Ibrance I bet I would be doing Ibrance with faslodex. Ibrance was not easy for me but it was manageable. I will find out more after I see MO on Wednesday. I will ask about testing for that mutation. Mri is tomorrow.
Hope your tooth feels better and yes Ibrance makes everything slow to heal. A cold takes 6 weeks and two antibiotics to recover for me back in March
Hugs Carol
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Carol, Just sending a hug and glad to see you are looking forward rather than freaking out. Ibrance just does not seem to have been the drug for you. If Fas is next, I think/hope you will find it a pretty easy tx. It has worked for years for many ladies even without Ibrance or trial drugs. Sounds like you are in great hands at DF. Enjoy a few se free weeks until your next tx is planned. (And please, remind us all what life without se's feels like!) 18 years since earlier stage BC? You must have been awfully young.
Eelder, I love what your mo told you about living a long time. The 1st year living with mbc is so hard. But I can honestly say it gets easier. Keep breathing!
Dee, What cycle is this for you? Keep an eye on your RBC and hemoglobin as well. I believe (someone please feel free to correct me if I am mistaken) it is the lowering of these that cause the fatigue, as they carry the oxygen to your other cells. I can't tell you how many times I've looked for an excuse to take a break from Ibrance. But it keeps working and I keep taking it. Hope your body will adjust more as time goes on. Hang in there!
Z, No MD after my name, but I definitely think Ibrance (and having cancer) do slow healing. Sorry you are in such pain. I was amazed at how much pain 1 bad tooth can cause! As long as you are covered with Femera, I wouldn't worry about taking an extra week off Ibrance.
Stephanie, I'm so happy to see you are still here! Hope you are comfortable and feeling at peace with this world. Love and light to you.
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Z, I can't imagine that being on Ibrance wouldn't slow healing. Since patients are not allowed to start chemo with an open wound for fear the wound won't heal... and since Ibrance, like chemo, causes neutropenia... I can't imagine that Ibrance wouldn't have the same effect. Here's a pretty good article that mentions multiple factors that affect wound healing -- two of which we surely have, the meds, and also the low hormone levels. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC290396... I've had more than one instance of a bit of infection in very minor wounds (like a cut on my finger) since being on Ibrance. I can't imagine larger wounds wouldn't be even more susceptible to bacteria -- especially one in the mouth. And you were probably at your lowest point (assuming Ibrance dumps your counts) the day you had your tooth extracted.
eelder, I'm curious... Is it your BS or your onc who suggested staying on Ibrance before/during/after surgery? That honestly doesn't sound prudent, unless you're one of the rare patients whose white counts aren't at all affected by Ibrance. Otherwise, it seems like the risk of infection would outweigh stopping Ibrance for a short time.
Carol, both Stephanie and Z have raised some really thought-provoking points about targeting pi3k and drug trials in general. I'll be very interested to know what Dr. Stover will respond to some of the questions that have been raised here. I'll bet you will be one of the best informed and most inquisitive patients he or the other substitute onc you may be seeing, has had, lol, after running their recommendations through your own BCO board of experts!
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I have a question regarding WBC - what count is considered "too low"?
I am finishing my last week of round 2. Maybe it's me, but I find it strange that I have no labs scheduled for the near future. Is this normal?
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Carol, you will be in my thoughts today as you have your MRI.
Lynne
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Mzmerz- If you have granulocytes or ANC (absolute neutrophil count) of 1.0, you are good to restart new cycle (although my onc has allowed me to restart if I've been just slightly lower). After the first month, the protocol calls for monthly blood testing, although I think after some period of predictability in how you respond, not every onc is requiring that. (But I do continue to have monthly tests even after a year on Ibrance.)
So I agree that there should be some labs scheduled for you if you are on cycle two. Wishing you well on Ibrance!
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Z so sorry about the tooth. My extraction is scheduled a few days after I start back. Unless MO gives me a break. Will discuss on Thursday.
I practice Jin shin Jytsu. I think it's given me quality of life. This is what my practitioner said for my tooth pain.
The Self help is to put the opposite hand on the cheekbone on the side of the jaw with the sore tooth and the same side hand on the same side collarbone.
Also to increase your immunity. Put the pad of your thumb over your ring finger nail. Put the other hand on your shoulder. So finger hold on right hand and left hand on right shoulder. Switch.
Hold either for 5 min or longer.
You may feel your breathing become very clear in your nose. You may feel tingles or twitch or jerk. You may feel pulses in your fingertips. All these are normal.
I hope it helps. Tooth pain is miserable. I don't leave home without orajel.
Here's a link to her videos. It may give you a better idea.
https://m.youtube.com/playlist?list=PL3R1sIQwcvVdQ...
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dlb823.... i've been on this treatment for 5 months and my counts every time have been "normal." i had one blood draw where my WBC was .2 below normal, but overall my counts have remained steady. I started getting blood draws every week.... then every other week... and now we're doing monthly. I'm sure at some point things will tank and take a turn, but for now, my doc feels no concern. Perhaps this is why I'd stay on treatment?? We'll see what the radiation doctor says next week.... perhaps she'll have a different opinion?
jobur.... thank you for sharing it gets easier with time. I was only diagnosed in early April. While I think I'm handling it as best as anyone could, I have many terrifying moments and moments of sadness. I do have more hopefulness and optimism, but still - it's hard. I turned 40 upon hearing of my diagnosis. I have two young boys. When I was diagnosed I said my goal was to see them graduate high school. I have since decided I am cutting myself short - I want to meet my grandchildren. Some might call me crazy for such dreams, but if I don't believe it or dream it it won't happen.
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First, I want to thank everyone for allowing me to participate in this topic!
I've no personal experience with Ibrance, just interest in the treatment and now in many of you.
Thank you!
Carol Loves, thank you so much for including us in your step-by-step process of pursuing your next treatment options. It makes so much sense not to try Faslodex, until you're sure about whether pi3k inhibitors are appropriate in your situation. Maybe it's time to start a pi3k targeted therapies topic at this forum...though I'll happily track you here too.
Zarovka, ouch! Your tooth troubles sound just miserable. It doesn't look like you're on the bone strengthening drugs that can lead to ONJ??? My friend has suffered dental and jaw pain all year - thought to be caused by long term use of Xgeva and Zometa. They've been such culprits.
Continued healing light for your well being. And many thanks for your thoughts on targeted therapies - you're surveying them as a newcomer who might need them someday and I'm looking back at 25 years of failed promises of potential treatments - and some real successes like HER2 therapies and aromatase inhibitors. Does anyone ever talk about COX-2 inhibitors any more? They were the rage for years.Zills, I too am a big fan of Jin Shin Jyutsu (JSJ) - self-help and my friend's a practitioner who visits regularly (this morning!). I've had muscle cramps melt away, toothaches ease, coughing spells disperse. What a beneficial ally!
My favorite JSJ practice can be done almost anywhere and while in almost any condition. It's holding the fingers:
Helps for emotional states (medical offices) and when experiencing physical challenges. The thumb corresponds to appetite, the forefinger to kidneys, the middle finger to liver, the ring finger to lungs and little finger to heart. Just hold each finger gently until ease and balance are restored. It doesn't substitute for proper medical care, but can sure ease physical and emotional affliction!
Jobur, still happy to be here - at this topic, bco and on this amazing planet we share. Thank you!
loving kindness for all, Stephanie
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Z, I am having a tooth pulled tomorrow and I was pulled off of the Ibrance for two weeks prior to the extraction, and for one week post extraction. This has to do with healing and reduced risk of infection I was told. I'm sorry you have been in so much discomfort with your extraction. Good idea to give yourself another week off of Ibrance.
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I have never heard of my Luminal results either but plan to check it out now! I too Shetland would be curious as to how it relates to ILC. My Onc still does not differentiate much between ILC/IDC but perhaps I am not asking the right questions, as we all know the research is there. I also need to research Ki67 and PL3K? I have a hard time keeping up with it all....
Well Loves, I'm sorry to hear of the liver tumors news and hope the MRI finds a big negative. The bone news sounds good though and the fact that you responded well and it is slow growing is great. You are lucky to get to try a trial now and still have a bunch of stuff in the arsenal. I think it is great to have the opportunity to meet with a research MO and get a different perspective. Interesting that I am ILC too and have had a hard time tolerating the Ibrance as far as low counts. Whatever you try next I hope you get a million miles out of it. We'll be thinking of you while you start a new path. I hope you keep checking in as we would miss your sunny comments! Hugs back at you!
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Thinking of you Carol and sending positive thoughts for your MRI and next steps in your journey. You are in good hands at DF. Please keep us updated.
Eelder- I will be here too to meet at least my first grandchild! My daughter will need my help when she has her first baby. She is 10 years old now so I will be here for a long long time. I love your positive posts and feel better many times after reading them.
Z- sorry you are not feeling well. That certainly sounds painful. I hope you get some good relief soon.
I know I don't post often, but I read every few days. The strength and knowledge on this thread is amazing. What brave and courageous women we all are.
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Carol-loves, so sorry about the new mets, I hope the MRI today gives you some good news. You have a wonderful outlook and spirit and I hope you will keep checking in and let us all know how things are going. We are all interested in any new treatments you find. Sending hugs and healing prayers your way.
Z, im so sorry about the tooth pain you're having. What'e with akk the tooth problems here lately? I can relate a bit as I had to have a very unexpected root canal last week which was very unpleasant and expensive w/o insurance. I go back this week to have the temp. filling removed and the permanent one put in. Then back to my regular dentist to have the crown that was drilled through to get it patched. I hate the dentist. My procedure was very uncomfortable but nothing like yours. I have to tell you I'm so grateful for what I am learning all the time from you and others here about THIS TERRIBLE DREADED DIESEASE. Knowledge is power, 25 years ago when I first had breast cancer, we didn't even have the internet. I haunted the library and most books were outdated. Thank goodness, times have changed.
Stephanie LTS, thank you for all the wisdom you have shared with us, I learn a lot from you about how to live life to the fullest even in the worst possible circumstances. You are always in my thoughts and prayers as is everyone here.
Hope everyone has a peaceful, pain free night.
Faith (in the future)
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I went back to the dentist today to check the tooth. The blood clot had not fully formed. The extraction was full of debris and gunk. I had not been able to brush the area or wear the partial denture due to pain and swelling. He had to take out the stitches, clean the whole extraction and re-stitch the site. We are starting again, hoping it will clot and heal this time. I still can't wear the partial denture because the gum is swollen and the partial digs into the gum. The partial acts as a band aid, so not wearing adds to the challenge of healing.
So, starting over again, but from a better place. I am starting my second week of Ibrance. I am convinced I need to stay off it this week to let the tooth heal. I put this out there both to get feedback and in case anyone is getting into dental work on Ibrance. I am not taking any of the bone met drugs that take jaw problems. I've had trouble with wound healing generally on this ibrance/letrozol protocol and this minor surgery did not go easily.
I had a dead tooth that was eligible for a root canal, but I chose extraction because I am worried that the root canal will trap infection. I am concerned about any infection on these drugs and also just fighting cancer.
My dentist is a holistic dentist who believes in meridians and hit me with his arsenal of groovy 70's tinctures and healing stuff. He is so groovy that he is the doctor who treated Shirley MacClain, who raves about him in her book. For me, praise from Shirley McClain is the opposite of an endorsement, but I do want a dentist who sees my teeth as part of my body. My dentist is certainly a very thoughtful person and willing to think about what the right thing to do is rather than follow convention and insurance guidelines.
Zills, Stephanie - thank you for the JSJ references. I am a big fan of healing touch. I have some people in my life who are powerful healers. I may ask help their help with this.
Stephanie - I appreciate your perspective on how many promising treatments fail. I always think of this cartoon when someone starts talking about any treatment in development as the cure.
Ibrance is the most mature new treatment and it is still experimental. We don't have meaningful long term survival data and there is a lot of work to do identifying which types of cancer will respond. What is hopeful to me is the sheer number of avenues being followed right now, the fact that several of them are looking pretty good, the fact that alternative treatment protocols have matured and, most importantly, talking to 25+ veterans like yourself.
On the topic of fatigue and low WBC or neutrophils, I experience extreme fatigue and a kind of distracted/disoriented state on this protocol without low WBC or neutrophils. There may be a cause and effect relationship for some people, but I seem to the fatigue without anything showing up in blood tests. There is a lot going on with this drug.
Eelder - let's say we plan to be hit by a truck when we are 98 on our way home from the wedding of our 4th grand child? It is very interesting that your doctor is not concerned about wound healing ... . As always, I am interested in what your doctors say as I believe you are being treated by the best of the best.
Dee- thank you for the wound article. I have so many questions about wound healing. I will get into it as soon as the hydrocodone and the pot brownie wears off .... It's kinda fun to be totally brain dead. A good excuse to search for "cancer" in XK3D and the Onion rather than PubMed.
>Z<
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Z, I had rod inserted during my first round of Ibrance. Right smack in the middle of it. Looking back I remember the hospitalist Doctor adding bags of magnesium and calcium to my IV (it was xgeva shot that caused those numbers). I continued on Ibrance just fine and healed nicely. I remember a big ugly hematoma that took time to go away.
Also, did you know it takes 3 weeks to have Ibrance safely out of your system? You are not allowed to breast feed until 3 weeks after your last dose. Much less for letrzole. 1/2 life is 2 days and E xgeva 1/2 life is 28 days!!
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Z.... I love the idea of something else nabbing me - truck? Fine! Ha! 98? AWESOME! I do get bogged down with the fear and uncertainty, but there's been a gnawing part of me since day one of this debacle telling me that the options we have are going to work for us and that our timing is such that we're starting this journey on the cusp of a time when they are breaking through a lot of barriers. I do believe in the past few years alone there have been a lot of BIG advancements in what we know and how we treat this beast. And it sounds as though 2 drugs (very promising ones) are maybe 2-3 years away from being available (maybe sooner the way ibrance rushed through...). And while we still don't know much about immunotherapy's effect on BC, my doctor thinks the future is promising.
For me I need to get to a place when I learn to live with this and not be afraid of this. It's a weird position - I am hopeful and optimistic and yet still terrified. Some days I don't know whether to be devastated about being diagnosed or happy I'm responding. It's as if I'm trapped in this PTSD surreal existence. By nature I am a happy, positive person. I have been grateful for a wonderful life and am grateful for many aspects of my current situation. But the fear!!!! The anxiety! The Type A soul in me wants to know "the plan".... and that perhaps is the biggest problem for me. We DON'T know the plan.
Whew. Thanks for letting me share. I try not to burden my friends too much. It's hard for them to completely understand the myriad of emotions involved.
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Zarovka, I loved the XK3D cancer comix!
Sometime I'll post my cancer humor resources here.
Graphic Medicine is a nice place to begin.
Laughter can be the best medicine - for cancer or toothache.
And don't get me started on the dark humor of dying. I coulda died laughing and hope I do when my time comes.
smiling and waving, Stephanie
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