Ibrance (Palbociclib)
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hi Jaycee, I too appreciate your posts and your willingness to share your knowledge, which was very useful for me several times. I wish I could participate and contribute more but I'm still working full time and with 0 energy by the end of the day.
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Sandi- Of course, joking!! I couldn't stop reading up on this stuff even if I wanted to, not just because I'd like to save my own butt, but because the science is really moving so fast right now, nothing like even a couple of years ago. I used to follow the science on HIV pretty closely, and it felt just like this right before the protease inhibitors were discovered, you had so many obituaries published weekly, heartbreaking with lots of people just in their 20s and 30s, and then it seemingly flipped like a dime, into a chronic disease
Maaki, definitely just try the Ibrance to see if it works, equivocal means they can't really tell, "maybe, ambiguous, unclear"
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Thank you Cure-ious !
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Two quick notes:
"Magic Mouthwash" has three ingredients; if your pharmacy doesn't have one of them (hard to believe), it can be substituted out with a quick phone call to the doctor. When we had a pharmacy, the standard here was Benadryl, Maalox, and Lidocaine Viscous.
Candy, "OTOH" means "On The Other Hand".
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Cure-ious, I knew you were joking but still ... I read every word you post and learn so much. I think it was you who said that if you see the words enough times, you get them straight in your mind eventually. I love to say things like CDK4 and CDK6 to my MO and have her be surprised that I know them.
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Heeheee, Jaycee, I know!! Go in there and say "I'd like to know where is my CDK12 inhibitor?, its taking long enough!!!"
I'm sure my oncologist dreads her appointments with me, I'm always going off on whatever has been the hot topic around here- told her all about kattysmiths trial is and how she should send all her patients there so we can get some more data, she just rolls her eyes
But at least she now knows better than to tell me that Faslodex (alone) will be my next treatment, that didn;t go well
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So..um..Cure-ious, what will be your next treatment? Are ya thinking about holding off that faslodex to add with new trial meds (if you get in that arm)? Or a new SERD? Or Xeloda? Isn't there an oral taxane in trial? Need to read my own notes..
One question: The PAM pathway (PIK3, AKT, mTOR) has the newly approved Apelisib, plus Afinitor..nothing with AKT yet. Wouldn't it make sense to skip the Afinitor (save for later) and go straight to Apelisib Fas combo if you have the PIK3 mutation? Also why don't we have a test for mTOR so we don't take it blindly? Thinking out loud..hate non personalized treatments.
S
Edited to say I found your response to the above question on the Ibrance thread June 1, 2019. I will try to cut and paste here.
Jun 1, 2019 09:23PM - edited Jun 1, 2019 09:23PM byCure-ious
I noticed something interesting in the ASCO abstracts:
Response to Affinitor:Aromasin (if anyone still takes that) is not affected by ESR1 mutation, PIK3CA mutation, or AKT mutation
It does work better on cancers with high levels of phosphorylated 4E-BP1, a direct protein in the pathway, but I don't think the genomic sequencing studies can tell that, it would need a protein analysis. But at least they realize they need a test, so we can know if we are likely to respond, too many people take this combo and don't respond, but then for some its been awesome. We need a marker to guide us.
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Cure-ious, I agree about Faslodex alone but what about Ibrance with Faslodex? I was considering that because I have problems with other choices. People with autoimmune diseases are usually precluded from taking immunotherapy. The SE's of most IV chemos make it impossible for me to survive them, given my long list of ailments. I only made it through two rounds (that were supposed to be six) at original diagnosis. I have a really hard time seeing myself clear to a next treatment.
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Karen, sorry you got lost in the shuffle. Lots going on here. So how far into that 4-6 weeks are you so far? Seems like a few of them must have passed by now. But still ... grrrr. Is there no way to speed up the process? Here, we can make noise at various levels and sometimes get the wheels turning a little faster. If I get really frustrated, I call people and yell. Even if it doesn't work, it lets off some steam. Can your MO push for faster progress? Being a pest is always useful, I find.
So you see your MO multiple times while waiting for scan results? That's just wrong. Stop in here while you are waiting. It can be pretty entertaining. We even dance sometimes.
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Jaycee, trust me I am a lifelong expert PEST! We - that being my family and friends - call it being a PITA (pain in the arse/ ass ). Had lots of practice, as have you all I’m sure when you choose to be!
Had I known about the delay on results I’d have shouted a lot louder before seeing my MO. Think that may have been deliberate on their behalf. My MO is also very annoyed.
Saving this one up for the next ‘stuff up’ and then will go in full tilt.
2 questions:
Anyone heard from Jaylea recently? Hopefully she is checking in but not posting.
Has anyone else been contacted by Pfizer around MBC patient advocacy? I did make a bit of a song and dance with them about everything being USA/ Canada based ( sorry ladies but I’m sure you’d get that if you lived in another country!)
Assume loads of you will have been contacted - should we be working with the Drug company....who are often the enemy because of the costs involved? IMO we have more influence from inside than out? Thoughts?
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I'm assuming everyone here is taking vitamin D but wanted to share this just in case:
https://msutoday.msu.edu/news/2019/vitamin-d-could-help-cancer-patients-live-longer/
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Cure-ious and others that post the scientific stuff-- I love it. Please never stop. I try to understand it all, but sometimes it is over my head. But I WANT to know how the cancer works and what new things are being invented to kill it. I have learned sooo much and KNOWLEDGE IS POWER. And we have to be our own advocate. A 10 minute office visit with my onc is not enough. I have to educate myself and maybe even initiate the conversation in the office visits.
This site is wonderful for the support and caring and for the laughs and the tears. We are a family. But what makes this site more than a social gathering is the INFORMATION we can share. KNOWLEDGE IS POWER.
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Sandi and Jaycee, Definitely the trial numbers say Ibrance or Abemaciclib with Faslodex is probably the best choice.
What do you guys think about i3c? We haven't discussed much adding it in, but I think I am going to try it. As you may remember, there is some buzz about this nutrition supplement since a new paper appeared in Science (May, 2019-link below). The paper showed that i3c basically acts as a targeted drug that inhibits a regulator of PTEN, which is a tumor suppressor that is often found at much lower levels in breast cancer than normal cells. They show i3c specifically binds to and blocks the enzyme that is keeping the PTEN levels low. So, when the cell gets i3C, PTEN protein levels go up and it can do its thing, fighting off the cancer.
Most important for us is how PTEN fights cancer. It turns out that the normal role of PTEN is to keep the PI3K kinase pathway in check. As you know, MBC cancers often turn UP the PI3K pathway when they become resistant to anti-estrogen therapies like I-F. They can do this by mutating PI3KCA itself, which makes the pathway super-active, or they can instead turn down the expression of PTEN, which is a different way to turn on the PI3K pathway. That means that taking i3c should help make the cancer sensitive to anti-estrogens again. If i3c stops the growth of cells that have turned on the PI3K pathway, it could help the I-F work for a bit longer. Maybe something to try if you have been on the combo awhile and want to try to delay progression.
https://www.ncbi.nlm.nih.gov/pubmed/31097636
https://science.sciencemag.org/content/364/6441/63...
There are many versions of i3c floating around in supplement and nutrition stores- there is a modified version called DIM that is a derivative of i3C. I was chatting about this with Luce, who suspects that the DIM form will not work, and that we should look for the pure i3C, either locally or on Amazon. We do not know how much to take, and have no idea how much is even soluble, but at least it doesn't have toxicity and might help? If anyone else knows about this stuff or a good source for it, please chime in!
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well said Candy!!!! I couldn’t agree with you more. S grateful!!!
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Well said Candy! I agree! Cureious I am so glad you pointed out about the flax ...the phytoestrogens confuse me...so i am glad you mentioned that one.
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Nicole- Yep, the estrogen thing is tricky when you are first diagnosed, but you are picking up speed so fast! For women who never had breast cancer, and our daughters, soy and flaxseed and other foods with plant estrogens are a great thing for preventing breast cancer. These plant estrogens (phytoestrogens) can bind the estrogen receptor and weakly activate it. Because they are so much weaker than human estrogen, it has the net effect of dampening the estrogen pathway, keeping the activity low and that is good for avoiding cancer. But its a different scenario for us, our bodies are estrogen deserts- we are pushed to post-menopausal by chemo or age, and ofte have ovaries inactivated/removed as well, plus take aromatase inhibitors or tamoxifen to bring the estrogen levels even lower still. If we take lots of soy supplements or any supplement with high plant estrogens, the starved estrogen receptor in our cancers will love it- these may be weak stimulators, but its way better than nothing to them. No problem drinking the occasional soy latte, but supplements can bring in high levels of this stuff, so its best to avoid them.
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Thanks Cure-ious for the information about i3C. I have already upped my intake of green vegetables: kale, broccoli etc..because I read they were a superfood, anything to keep 'dancing' longer, but some days I don't get to eat any ( cabbage sandwich, no way) so a supplement would help.
I found this site, a little information about dosing towards the end.
https://www.webmd.com/vitamins/ai/ingredientmono-1027/indole-3-carbinol
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excellent info, Denny, thanks!!
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Cure-ious, I've always wondered about the phytoestrogens too. But them being not good for hormone positive BC is not really a proven thing see the following for example:
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Hi all, I'm here, checking in but not posting regularly since I'm a little removed from the Ibrance experience. I start Halaven on Monday. I hear it's a doable regimen, but you all know what that means - we do it because there isn't much of a choice.
I did have a great experience I wanted to share. I signed up to get a wig from the American Cancer Society, not so much for the free wig but for the consultation and ability to try several styles on. I actually brought a wig to donate that I ordered online but just wasn't right. The consultant was actually a cosmetologist and had me try on the wig I brought. The color was good- honey with blonde highlights - and the fit was right but there was just too much hair all around. She said "I can fix that" and started cutting away. When she was done I had a wig that was styled perfectly. Gotta love those grace moments! I came home and made a nice donation to ACS.
Hugs to all ~ JL
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Jaylea- Good to hear from you, girl !!!! How are you really? How do you feel? Post if you want or you can PM me. Praying for ya.
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Jaylea- sounds like a great experience! My long time hair dresser came with me to try them on, get color right and also styled it up a bit- my favorite for summer was the baseball hat with hair- easy and comfy.
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A patient advocate that attended ASCO posted this online. It’s kind of hard to read the fine print but it can be done
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NovaGirl- Thanks for that interesting chart. I wonder what they mean by the big green arrow of immune checkpoint blockade? I'm waiting for my immunotherapy, and that chart indicates I should be getting it firstline.
Greek- That is interesting, I did not know flaxseeds might benefit both ER+ and ER- MBC. I would love to take flax to help my hair and nails! But I won't jump for it without knowing the mechanism, ie what its doing to the cancer cell. Maybe it will show up in a trial
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So I had a pet scan in May. The pet scan showed uptake in T 12 and L3. The plan was to use radiation on these two areas. So yesterday i had an mri and T 1, 4, 8, 9, 10, 11 and 12 light up. Also L 1, 3 AND 5 were showing uptake. So how did the pet scan miss all of these areas? Also, will this change the treatment from spot radiation to general radiation? Has anybody else had this happen? Why am I paying thousands for a pet scan if it doesn't work? Feeling very frustrated.
Melissa
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hi melissa - Sorry you’re going through this :-/ sometimes MRIs show activity in the bones but it actually old lesions that have taken up the tracer for one reason or another.
I did have this happen and so I had a follow up with a nuclear bone scan which showed the MRI was incorrect about the “innumerable active lesions in my cervical spine.”
I know it may be a frustrating expense by would you consider having a nuclear bone scan for follow up?
PS I haven’t had a pet scan so I do not have any experience with that. Are you paying out of pocket for the pet scan??
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Hi love from Philly,
I have copays with the scans. I just can't believe that all of these spots turned up in one month. I see the radiology oncologist on the 10th so I hope he will have some answers for me. Thank you for replying.
Melissa
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Jaycee- I am so glad you are here. Sometimes I feel like a fish out of water. I am on the "younger" side of BC. I am no where near retirement. I wish I could. So, therefore, I have been quiet.
Cureious - love all the research you bring to the group along with the excitement.
Nova - interesting chart. My first line of tx would be PARP. Instead I am on fulvestrant and Ibrance. A PARP would be my next line, should this fail.
Jaylea- yay for the great experience.
Tomorrow I have my 3 month scan. Hoping for NEAD. Fingers crossed. Send some good vibes my way. I will know results next Wednesday. Been having a rough cycle 3. My voice is still hoarse and I cough a lot. Convinced MO through email to bump me down to 100 for cycle 4 to see if that helps. Got my 15 day bw yesterday - ANC was 1.45, nearly low normal. However I am anemic now, which could be the reason for my coughing an such. Who knows.
Candy - you have to do what is best for you. We got your back! Btw, what does TIA stand for? I don't think it means Thanks in advancd.
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Holly, I've had periods on Ibrance where I coughed a lot, often a productive cough with brown phlegm. It scared me because I thought it was blood. It's probably been six months since I've had any cough at all so, hopefully, you'll move on from that soon. I started Ibrance in October, 2016 and have had quite a good run with it. I get a PET/CT tomorrow with results on Monday. I had a remarkable response at my 3 month scan and I pray that happens for you.
My oncologist and I are pretty sure that if I have a lot of progression I'll take a PARP inhibitor next. I have the BRCA1 mutation and have long thought this would be a good thing for me. My daughter is also BRCA1 and is an 11 year BC survivor so I'm anxious to see good results from this in case she ever recurs.
Lissalou, I've seen people go through various types of scans through my 25 years of BC adventures. As I observed the erratic reports they were given I learned to think of these as just clues to what's going on inside our bodies. The one that really got me was my friend who was scared to deathby an MRI that said her MBC brain mets were back a year after Gamma Knife and Whole Brain Radiation. They did a craniotomy on her and that thing that looked like a tumor was nothing but radiated mush! Since then I'm not convinced anything is cancer unless a piece of it is biopsied! I pray you get only good news from here on out.
Jaylea, here's to Halaven doing good work on you! I hear it's pretty easily tolerated so I pray that's true for you and it's a good summer.
I'm off to eat my right before midnight meal before tomorrow's scan! Eggs on a bagel.
Love from PatGMc
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Pat, sounds like we will be scan buddies! Thanks for your experience with coughing. Mine is just a dry one, except in the morning when it is phlegmy. I have BRCA2. Sorry your daughter has the 1 mutation as you, but so happy you are both survivors! I know the initial tumor has shrunk. I can feel it is smaller, but by how much and is it growing inwards where I can't feel it? Also, I feel like I can really feel a supraclav node on my right side, so here's to hoping it hasn't grown bigger and there aren't anymore new mets. Happy eating! Hope your PET/CT is first thing in the morning.
Elena, how did your scans go today?
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