Ibrance (Palbociclib)
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Z-WOOHOO! Happy your current scans are good. Merry Christmas.
Lynne
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Z - I am soooo happy your correct scan report came back stable! Enjoy your hiking trip in Utah! Have a Merry Christmas and Happy New Year!
I am in the middle of cycle 12 of this protocol and have my next scans scheduled for January 4. Sounds like a bunch of us are scanning in January. May we all have stable (or better) results!
Cathy
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Z - OMG - Giving thanks to your stable scan! Whew - what a rollercoaster.. now enjoy your holiday and stay on Ibrance with us. Thank you Z.
Indysport - I purchased cruise insurance from Uniworld (cancellation for any reason). It is worth it. I believe Viking has a similar policy, so please price it and decide. I would try to upgrade my flights to stay more relaxed and allow plenty of time between gate changes, as that can create too much stress and panic. I am planning for my June cruise which will complete my 3 European river vistas; Rhone, Danube and Rhine. Happy Holidays!
(()) Claire
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Z, glad it turned out to be a clerical error & you are indeed stable! Merry Christmas!
Had all my scans on Tuesday along with TM's. Trial RN says she doesn't think I'll get the results before the holidays, but she remarked that "don't worry about it, it's ok, just enjoy the holidays & we'll see you on the 3rd" Really?? talk about just not getting it.
I'm wondering if in the New Year we could start a new Ibrance thread. It breaks my heart coming here & seeing Hope's post at the top. Maybe it doesn't bother anyone else, but I don't like coming on this thread much because of it. Just my 2 cents worth.
Happy Holidays/Christmas to all here, cheers, dee
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Dee - I agree with you on starting a new thread. I am not advocating erasing Hope from our memories but every time I come to this thread, it sends a chill down my spine and I feel soooo helpless about the situation we (or our loved ones) are in.
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I know what you mean. It does prompt sadness and fear. But then I think that it is good that the thread helps keep Hope's memory with us. There are so many ways and stages of dealing with the stage iv diagnosis. For me right now, I think there is really no escaping the sadness and fear, just living with it and holding happiness and hope at the same time. I feel like my reality is that if I participate in this stage iv forum, I am going to lose a friends to MBC, and I am going to be reminded of my own precarious situation. Better to have loved and lost than never to have loved at all. Practically, with a new thread there would be the problem of an artificial cut-off day in the middle of conversations. Also, I have seen new people comment that they have read through the whole thread and learned a lot. That history would disappear if the thread went inactive. Not into controversy and I certainly understand the different ways people have of looking at this. It's one more of those no-perfect-solution things, I guess.
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Good luck with the scans GG27, Animal Crackers and everyone. I expect we will all start the new year in a strong position, but if not there are options ...
I'll switch to a new thread if someone starts it, but usually some people post on the new thread and some post on the old and it just gets confusing. I naively tried to start a new Ibrance thread earlier in the year myself (the subject line used to say 2015) and it did not work. I ended up just asking the moderators to remove the year from the subject line of this thread.
Better to have loved and lost than never to have loved at all.
I miss Hope. I miss Stephanie. And that is just the beginning. I miss them all. No escaping the sadness, but wishing everyone hope and happiness and a long run on Ibrance.
>Z<
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That's great news, Z, enjoy your holidays!
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Hello Ladies, I just read through the past few weeks. Z, I am so sorry you had to live through that awful stress but so happy that you are stable. I go to Dana Farber about 6 hours away at least once a year or as necessary because my teaching cancer center has made several mistakes. I'm better about catching them but I always feel better after my doctor at Dana Farber looks everything over and either agrees or gives me another treatment option.
I just started Ibrance 1st cycle completed after a very short targeted radiation to my sacrum. My blood work showed a ANC of 1,000. my onc gave me an additional week off. I've had a cold that seems like forever and I understand that it is because my immune system isn't up to speed for getting rid of it. I go back this Friday to be tested again and I'm curious if my numbers aren't improving what options my onc might give me. Do some people take 2 weeks off? I think this was just bad timing with rads then starting Ibrance and the holidays. Really hoping this treatment will work.
I hope everyone enjoyed their holidays the best they could. Thanks, Michele
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Hi Michele, It is not uncommon to need a break of more than a week while on Ibrance. My ANC went down to 400 on cycle one and was only up to 600 after a two week break. I had to wait until my counts had rebounded, then I stared back on Ibrance at a reduced dose of 100 mg. I was able to start cycle three on time since my ANC was at 1100 when it was time to start. I am in cycle 4 now, but I had to take an extra week break before starting this cycle since ANC was only 700 after one week break. I suspect that if things continue this way, my dose might be reduced to 75 mg eventually. The good thing is that other people on these threads are seeing good results even with reduced doses or longer breaks. Everyone is different, and our bodies react differently to treatments. Right now there is no way to predict how each individual's blood counts will be affected by Ibrance. Your MO will follow the well-documented protocol while evaluating your counts and planning next steps. I hope your cold is better soon. I came down with one yesterday, so I know how you feel.
Hugs from, Lynne
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I will be starting ibrance on the 9th. Just had surgery to remove my ovaries and tubes yesterday. Along with ibrance, letrozole and xgeva I will be doing a clinical trial with gedatosilib. It is a phase 1 trial. They told me I would be #14 in the country to take it!!! I'm hoping it works well.
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Hi APG, Congratulations on starting out with a clinical trial! So few ever try these, but if ever there was a time to find an amazing new drug in development, surely it is now! I had to read about Gedatosilib, which is an inhibitor of all PI3K kinase isoforms, and also an mTOR inhibitor. This is definitely a major signaling network that needs to get shut down in breast cancer- but has been a hard nut to crack. Other inhibitors that target only a subset of PI3Ks are also in trials, but it seems, like with Affinitor, these can have some hard side effects, so please let us know what your experience is like!
Thanks to Stefajoy for the information, I consulted for on a clinical trial that is ongoing at City of Hope in LA. In this trial (phase II) they add Keytruda (immunotherapy- checkpoint inhibitor) to Ibrance/Letrozole/XGEVA. At present, I am not eligible for the trial, because I have bone mets only, but they are thinking of changing the requirements to include a subset of patients with bone-only disease. I like that it is a systemic treatment with possible big upside and low side effects,and that they can tell by scanning if you are a 'responder'- however I would not do this if it prevented me from participating in future clinical trials involving checkpoint inhibitor drugs, because in preclinical studies immunotherapy worked exceptionally well in combination with HDAC inhibitors, and thus far it seems I'm responding fine to Ibrance/Femara/XGEVA, so I think I'll keep an eye out in the future for clinical trials involving that combination. Best of luck!
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Apg - I spent the evening looking at the gedatosilib/ibrance/letrozol trial you are on and like Cure-ious. I am REALLY interested. Welcome and please give us frequent updates on your experience and progress.
Teacher - Most of us take an extra week or two off occasionally either due to side effects or because vacations and special events. Most people don't get sick due to the low neutrophils. It doesn't seem to make us more susceptible to infections. My entire town including my own family got sick before xmas and I didn't. Probably my clean living, healthy diet and vitamin C. My neutrophils were below 1000 during that period.
>Z<
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Hi Z hope you are enjoying your hiking Would you explain to me your Vit C regime please? I am pretty healthy besides the obvious & in my trial not supposed to add vitamins but willing to push the boundaries a bit if you think it helps.
Ditto the interest in your trial apg and wishing you all the best and an easy time with it.
Chico xx
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I will definitely update how the trial goes. I'm anxious to get started. It is a weekly IV treatment so I'm going to get a port on Jan 6th. I go for new scans on the 3rd as this is part of the trial. I will be there on the 9th all day to be monitored after being given the meds and trial. I will have a blood draw every hour for 4 hours.
Being on the trial makes me not able to do any supplements. I am interested in the vitamin c infusions also. I have read a lot of mixed information about it.
Misty
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Welcome Apg - I am also very interested in the trial of the latest inhibitor - Gedatosalib. Please give us more details as you can. How many weekly sessions are they planning and what are the SEs? I'm on my 13th round of Ibrance+faslodex and doing well. Happy to provide input on Ibrance - please take it with your largest meal. Plus reading this thread will help a lot - many savvy ladies here. Z - you are my Xmas wish to get to NED. But stable is good, please take administrators to task for sending you the faulty old scan result. I have 7 more rounds of jaw rads to go, then will get next PET at end of Feb, but will watch TM's too. Fingers crossed. I'm interested in B12 shots and Vitamin C infusions - where can we get these? (()) Claire
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Claire, I will get them weekly until I request to be taken off or progression. There are a lot of negative side effects. Mainly the same as ibrance and the hormonal tx. I haven't had anything yet except zolodex and I will no longer need that since having the surgery. I hope side effects are minimal. Crossing my fingers!!!
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Claire - a speedy and easy path for you through the radiation treatments is all I want for xmas. are you getting stereotactic radiation, by any chance?
I have read a lot about vitamin C and generally I think it works. The clinical studies that "disproved" its efficacy were based on taking vitamin C orally. Oral Vitamin C is generally poorly absorbed in the blood. Vitamin C IV's are the only way to be sure to get an effective dose of Vitamin C. It's possible that liposomally encapsulated vitamin C achieves an effective dose in the blood stream. I do take 2000mg of liposomally encapsulated vitamin C per day. However, only vitamin C by IV is proven to get to your cells in required doses.
There was one clinical study that showed that vitamin C interfered with one of the standard chemos. The basic theory is that vitamin C can protects ALL cells including cancer from free radicals and other attacks. So if you are trying to kill cells vitamin C may interfere. However, it depends on the chemo. There are doctors that combine vitamin C with certain chemos to make them more effective. Finally, Ibrance is not standard chemo and nothing like the drug in that trial. The naturopathic oncologists that I have worked with and who have experience with Ibrance do combine vitamin C and Ibrance.
I work with a couple naturopathic oncologists remotely by phone and Skype because there aren't any in my state. I have a naturopathic generalist in my town who helps me implement the plans I get from the NO. I can do IV's, B shots and other treatments from my local naturopathic doctor under the supervision of the remote NO's. I would say beware taking advice on cancer from a naturopathic generalist. My local naturopath is well intentioned but misguided in her advice on cancer. Standard medical oncologists have a hard time keeping up with the field. Cancer is not something you can dabble in.
The University of Arizona may have the best Integrative Medicine program and their website has a list of integrative doctors that have graduated from their program. There are certainly good ones that did not go through that program, but it is a place to find someone local to work with. Some of the most important complementary treatments are very basic and standardized at this point.
If you are looking for integrative oncology specialist, PM me and I'll share some ideas.
I can share my complete complementary protocol by PM, but I would find an experienced complementary oncologist to guide you. Very subtle distinctions in my pathology and staging have influenced what the NO's advise.
>Z<
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Hi Z - I am receiving IMRT (Intensity modulated radiation therapy). I have 6 rounds to go. It is not painful per se, but the mask is daunting. Something out of Alien, that is strapped down over your face down to your shoulders with barely room to swallow. Here is a photo. PM me the Vitamin C info - where/who can infuse me? I need some extra vitamins or energy right now.
Claire
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Claire - The mask is something out of Alien, or perhaps the Man in the Iron Mask? Must be unpleasant beyond words. However, keeping your body still during treatment seems well advised. I just read up on IMRT and it is an EXTREMELY precise, cutting edge treatment. I am glad you are getting the very best possible treatment.
I haven't had radiation, but everyone who has had it gets very tired from the treatment. I just sent you contact information for Dr. Brian Lawanda, a radiation oncologist with training in complementary medicine by PM. He works out of Seattle but consults by phone. Vitamin C might be just the thing to work into a radiation routine but you really really (really!) want an expert advising you. Here is Dr. Lawanda's article on Vitamin C. It's one of the best, most balanced summaries of what we know about vitamin C.
In the meantime, a packet or two of liposomally encapsulated vitamin C is highly absorbed and could do the trick. Take it on an empty stomach 30 minutes before breakfast. Dr. Lawanda mentions in the article that you don't want to take it on the days you get radiation.
Finally, just getting more rest is probably in order. I am not much for slowing down myself, but radiation treatment is hard.
>Z<
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Hello and welcome, Teacher911/Michele and Apg/Misty. Lalady1/Claire, you are more than half-way through! That is a very impressive mask. Yeah, this isn't the first time I've thought that bc treatment looked like a sci fi movie. The big white PET and bone scanning rooms with their rectangular ceiling tiles look like the holodeck from Star Trek, and just think of all the strange machinery for scans and radiotherapy.
I searched for gedatosilib but turned up nothing. What am I missing? I'm interested because my F1 report did not show the PI3KCA mutation that many of the trials (SANDPIPER, SOLAR) require, but it did show another PI3K mutation. So I would like to follow this drug.
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Claire, that mask looks scary!! But if it does the trick, it is all worth it. Hope you are feeling ok. My first round of breast cancer eight years ago was pretty tough with all of the radiation. It makes you feel tired as the days go by, but after it is over and you heal you will feel so much better. Just draining while it is going on. Good luck and i hope they can get the met so it is all gone. Take it easy and keep us posted. Thanks for all of your support. Happy New Year to you. ((HUGS))
Anita
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Wow, Claire. I've seen photos of RT head masks in use before, but nothing as dramatic as yours! Thank God for 21st century medicine! Is this at UCLA?
I also second Z's recommendation to contact Brian Lawenda. He's Harvard, UCLA and Stanford trained and a real gem! Another resource that might be helpful to you and others interested in finding a good ND is this one: https://oncanp.org/. It's an association of ND's with extra training in oncology. My naturopathic doc out here in the desert belongs to it, and although not on a par with Dr. Lewanda for your current situation, she suggests using this list to find a competent ND for our general ND concerns.
Shetland. I don't know anything about gedatolisib, but here are a couple of links I just pulled up for you -- assuming this spelling (which Dr. Google corrected) is right.
http://www.selleckchem.com/products/pki587.html
https://www.cancer.gov/publications/dictionaries/c...
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A Study To Assess The Tolerability And Clinical Activity Of Gedatolisib In Combination With Palbociclib/Letrozole Or Palbociclib/Fulvestrant In Women With Metastatic Breast Cancer
let's all keep an eye on this one. Gedatolisib is both an mtor inhibitor and PI3K inhibitor.
Cornering cancer with multiple approaches without poisoning yourself is basically the strategy. Oh goodness what a pickle we are in.
>Z<
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Z- since you have researched the trial, do you think it is a good one to participate in? They told me I would be the 14th person in the United States to participate in it
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Apg - As cure-ious suggested, you have to watch the side effects. Gedatolisib inhibits the mTor pathway like Affinitor/Everolimus. Afinitor side effects are tough for some women. So that is a flag for me. Don't let the doctors minimize the side effects because that is their inclination. The trial doctors want you to stay in the trial. Being a "good patient" doesn't correlate with with positive outcomes. Maintaining good health so you can eat well, exercise and socialize and basically have a life is very important to good outcomes. But there are women who do fine on Afinitor.
There are some early studies that show cancer cells develop resistance CDK4/6 inhibitors (palbociclib,ribociclib and friends) by using that PI3K pathway. I barely understand that kind of research paper but if they are trying to add a PI3K pathway to palbociclib it's because they think that the pathway is used by cancer to evade the CDK4/6 inhibitor. The most effective treatments will corner cancer with multiple attacks because cancer often evades single agents.
The drug has made it through a phase II trial with endometrial cancer so there are a lot of people who have already taken this drug. The side effects sound challenging, but a clinical benefit response rate of over 50% in a phase II trial something to get excited about since at least one protocol has failed to control the cancer in these patients. "The most common treatment-related adverse events associated with gedatolisib were nausea (53%), mucosal inflammation (50%), decreased appetite (40%), diarrhea (38%), fatigue (35%), and dysgeusia and vomiting (each 30%). Clinical benefit response rate was 53% (10/19) in the gedatolisib/stathmin-low arm."
If I lived closer to one of the sites doing this trial, I would do it. Many people here might be interested in knowing if they would accept someone who has already been on Ibrance for a year. There are many sites doing this trial, so many people on this list could do potentially participate.
I would go for it, but watch the SE's. It's about you not about the trial doctors or the trial. Good luck and let us know. Everything.
>Z<
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Z, thank you for your advice. I am scared but opomistic. I want to be able to feel good for exercise purposes so I'm hoping se are not too bad. Praying it all goes good. Only time will tell.
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Apg -
Scared but hopeful pretty much sums up everyone's mood on this forum. you are in good company. Exercise may be the best measure of whether a drug's side effects are too much. I am not running half marathons anymore but I will be climbing the cliff behind our vacation rental this morning for a 3-5 mile hike with my kids. Brief periods of healing from strong treatments aside, you should be able to do 25% to 50% of your max exercise capacity, depending on where you used to be. If you can't, you need to consider whether the drugs are doing more harm than good.
Join us on the stage IV fitness forum where we cheer ourselves on through often pathetic but sometimes impressive and always inspirational fitness accomplishments. If you get yourself a fitbit for xmas you can join the Stage V fitbit group (different) and challenge me for steps in the new year. Anyone interested should PM me. The stage IV fitness ladies have been quiet over the holidays hopefully indulging in cookies and rest but I expect the group will come back with a roar in the new year. Join us.
>Z<
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APG, I agree with Z, do the trial but don't hesitate to drop out if you get side effects- in phase I, you may be getting an exceptionally low dose (which may not help fight the cancer) or be on the high side, just to see how high they can go before people throw in the towel! And, it depends on your particular situation, Ibrance/Femara is a great combination with relatively few side effects for many..
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I have a question for all; for the first time I have to skip a week of Ibrance because my neutrophil count is too low (its 0.9, and needs to be above 1.0)- My MO said there is nothing I can really do to help raise the levels, but suggests getting some exercise as it could help me better metabolize all the drugs I am taking (CoQ, for same reason), and she also mentioned that she has patients that swear by garlic?! Anybody try that?!
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