Ibrance (Palbociclib)
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Thanks guys. Still hurting today. Nothing to use but Tylenol. When I told nurse of the pain, he said "Yes, that is a side effect". And "we give Neulasta all the time". I guess I am being a wuss.
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Candy678–. Hope that pain from your shot goes away quickly
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Thanks Cure-ious for the information. Whether the i3C helps or not certainly it doesn't seem like it can cause harm.
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Appointment update: My MO, as I'd hoped, was as reassuring as she could possibly be. She said that she was very happy wth the scans, overall I'm still stable (the last few appointments she said NEAD but I'm not going to sweat semantics) and she thinks what they are seeing in the bones in just a slight flareup. She said that, even if there is some small area that is now non-responsive, it's clearly slow growing and not aggressive. "No need to worry" were her words. They want to "get as much mileage" out of Ibrance as possible so have no immediate thoughts of a switch. I like the sound of that! On to cycle 42 ...
The plan is to "keep a closer eye on me" with more frequent scans (they had been pushed out to six months) and I gather I'm back to seeing her monthly. She pooh poohed the suddenly rising markers (said all the things you'd expect on that front) though that is still my biggest worry honestly. I'm honestly hoping that the "little flareup" is real cause of the TM elevation and there's no bigger shoe to drop in a few months. I think that Dr. Google has taken ten years off my DH's life as he spent the last week poring over studies about what rising tumor markers mean and I just *know* he probably isn't telling me everything he found.
I asked the NP to call me tomorrow with the new TM numbers. Maybe I'll message her and tell her I changed my mind. So I don't lose my mind. Hmmm.
Cure-ious, my MO repeated that she is firmly against any supplements that haven't been trialed but the NP took me aside later and is fascinated by the I3C possibility; she said she wanted to see what the nutriionist knows and will give me a call. .
Candy, I told my DH that I had "Candy in my pocket." That did put a big smile on his face at a very stressful moment.
Thanks to you ALL for so much love and support. What would I do without you?!?
Big Group Hug, Penny
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P.S. Candy, you're no "wuss" woth everyhting you've been through. Hope you start to feel better soon!
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Penny, So glad to hear you got good news. Cycle 42, that's amazing. I hope I get that much mileage out of I\L.
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Candy Don’t overthink this. Your blood count will go up and you’ll feel better. The SE’s are rough but usually after 24 hours they subside. You are not a wuss to complain about feelings, treatments, and pain. The doctors are not infallible so question away. I don’t care how they feel I’m the one facing a life threatening condition and I’m paying for medical attention.
Tanya
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Candy, you are not a wuss! Hope you feel better every day.
Penny-78, good news about your scan and meeting. Cycle 42, great news as well. I hope to be on this combo for a long time, too.
M and M37 - welcome! You will find great support here. I am going in for my 9th faslodex injection tomorrow and will start cycle 8 of Ibrance next week. So far it has been an easy combination for me to tolerate. Hopeful you will, too!
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Candy said above “When discussing all this with MO nurse today, he commented that my MO adheres to NCCN Guidelines for treatments used now (Neupogen plan) and also for progression plan when we have to do that. So I guess I need to read up on NCCN Guidelines as this is my MO's "bible", so to speak. I don't think my MO likes to deviate from the Guidelines that have been set forth. Will be kind of interesting going forward. I wonder what NCCN says about Neupogen use with CDK 4/6 inhibitors?????“
Well, that is good that your onc follows the NCCN guidelines, as one purpose of them is to guide the general oncologist, or the rural practitioner, so that they can follow the same standard of care as the big-city NCI cancer centers. I have often referred to the NCCN Guidelines in order to educate myself. These guidelines outline and discuss, among other things, choices for hormonal and targeted therapy, the preferred order if any, what the evidence says about various treatments and combos, etc. I skimmed them just now with your question in mind, and as I suspected, there was nothing specifically about neupogen and CDK 4/6 inhibitors. For that sort of question I believe the oncologist would be expected to familiarize herself/himself with the detailed instructions provided by the pharmaceutical company. And we know what those instructions say. So if the nurse was implying that the NCCN Guidelines say to use neupogen with Ibrance, I doubt he can show you where it says that.
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Penny, My oncologist says the same, and as a scientist I don't disagree with that advice! trials would show whether or not the drug works, and define a dose. There is always the possibillty it does something else somewhere else in the body. I was concerned this concentrated extract of broccoli and cruciforms could have elevated levels of plant phyto estrogens, for example. Or maybe it does something negative to the activity of the immune system, who knows? Or maybe its helping my gut and not affecting cancer, etc, etc
I'll always be equivocal about supplements for these reasons, they are a crap shoot on top of our other treatments (which can also be a crap shoot). We just do not know what other targets these drugs may have in the body. Hopefully the chemists are moving fast to get a drug that targets the same enzyme as i-3-c, and move it into a clinical trial.
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Thank you to all you wonderful, strong ladies. I am feeling better this morning. 2 days of hellish pain. I don't think I am a wuss, but the nurse acted like since they give Neupogen/Neulasta all the time to the IV chemo patients that it is routine and no big deal. I too researched the NCCN guidelines and didn't find anything for G-CSF with CDK 4/6 use. But, I have at least 5 articles, plus the Ibrance website itself, that says the way to treat neutropenia with CDK 4/6 inhibitor use is to hold therapy. The CBC next Monday better be good, if not, something else is going on. Also, I read on the NCCN Guidelines that the recommended second line therapy after Ibrance is Fulvestrant with one of the CDK 4/6 inhibitors (if I read right, the online guidelines are in algorithms and you click a link to move to the next recommendation). So Fulvestrant and Ibrance maybe after Ibrance/Letrozole quits working??? My MO mentioned before using a PARP next, so not following NCCN??? I need to reread Bestbirds Guide---what does she say is second line? And with other options all the time, can we move to another option rather than follow NCCN lock step? Lots of questions and there will always be lots of questions. I want an MO that is open to thinking outside the box and open to my questions.
Penny- Thank you for having me "in your pocket" while you were dealing with your own issues. That brings a tear to my eye and a smile to my face. Woohoo on stable for you. Yes, keep Ibrance as long as you can. We all can understand the "bigger shoe to drop in a few months" feeling. That is how we live now, right. I like your NP--she is open to new ideas. Glad you have her "in your pocket".
Shetland- You always have my back, girl. Hugs.
Cure-ious- When I tell anyone (MO nurse, etc) that I have an online group that I get advise from I always mention you. I say " I am not getting advise from Dr. Google. I get information from a retired professor of genetics". (Did I get that right?) That shows them !!!
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Hi Candy. Good job doing your research.
I was curious about your MO thinking about a PARP as a next line. Do you have the germline or acquired mutations and what are they?
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Sandi- I had Foundation One done when I was first diagnosed in 2017( we thought Stage 2 back then, found out MBC 3 months later). I did not ask for the testing. I didn't know what F1 was at that point. My MO at the time ordered it on my breast biopsy sample. It showed 5 genomic findings with only 1 actionable--- PARP inhibitors. One of the many questions I have is, can we retest F1 at progression? Or do we just use the old report (2017)? That is where my current MO is getting PARP as next treatment option.
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Candy,
You can redo F1 at progression, I believe, but only if there is something to biopsy? There may not be. My consulting doc at Northwestern said to use Guardant liquid biopsy, but I'm still trying to determine if that is FDA approved/insurance covered or not. Foundation is also developing a liquid biopsy (or testing it).
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This is not an Ibrance specific posting, but I found it interesting and thought others might as well because it talks about how our cancers mutate with targeted treatment -- also posted in research outside of BCO
https://scienmag.com/revealed-how-cancer-develops-...
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Candy, I've been thinking about the nurse who commented to you about the pain side effect you had from the shot. What about if the pain had been HIS? It's so easy to brush off someone else's pain. That led to what my MO said at my appointment about that good pet scan. I was telling him that I am going to get an upper endoscopy next week and they require a Covid-19 test the day before. He said, "oh, that test is rough. They stick that swab WAY up your nose." I guess he had one. I said, "well, my perspective is a little different." That's all I said out loud. In my head, I was saying I've had my breast sliced off, poison dripped into my veins, burning radiation directed at my chest, a large needle jabbed into my port every month, a very large needle stabbed into my back to drain fluid from around my lungs SIX times, and a shot into my stomach every three months. A swab up my nose? I got this.
(Ask me next week. I may have changed my tune.)
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Interesting article BevJen. It's too bad these studies move so slowly when it comes to mbc. I feel sometimes it's so much of a guessing game with what works and doesn't.
I met with my new MO earlier this week. She seems much more knowledgeable. She's going to check on testing for the PI3k mutation and Ask to see if I have enough tumor samples for the Foundation 1 report. I hope they have enough tumor samples for both.
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Simone,
From what I understand from what happened last year with me and the F1 report, I'm not positive that they will take old samples to do the testing, at least for the full F1 report. I know that my doc had to request it before my actual biopsy bc F1 likes to get samples in a particular way. Unfortunately, that may block the full F1 report.
However, you could ask about a Guardant 360 liquid biopsy or, alternatively, an F1 liquid biopsy (I'm not sure if the second is ready for prime time yet, and I don't know if your insurance will cover Guarant -- things to check out).
Hope that's helpful.
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Cure-ious, my MO always says exactly the same thing about supplements, and I respect her for it. I get why she tows that line. My tactic is always to ask in front of their NPs who usually will be much more open. In fact, the NP message me this a.m. and said the nutritionist at the medical center saids that IC3 is totally fine to take! (I assume she meant I3C
This is exciting. I should have asked again about tumeric. What's your take on that? I think you weighed in one time but I forget.BevJen, fascinating article. Thanks so much for sharing!
FYI, I messaged the NP this a.m. that I didn't want the her to share the new TM numbers, unless there is something they think we should know, because my DH and I would just obsess. Now I'm *totally* obsessing anayway.
A mind is a terrible thing to lose.
Hugs, Penny
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BevJen- I filed that article for future info. Thanks for sharing !!
Jaycee- Yup. They see the patients come in every day for chemo and then for the Neupogen/Neulasta. Herding them thru like cattle. They don't realize how the meds make us feel when we go back to our homes. And, Yes, I say those things in my head too when someone talks about their issues--- "honey, how about losing your career, feeling like crap, going thru these treatments and side effects, etc etc " Something someone else thinks is big, is no biggie to me.
Just gotta mention this: I had a PCP appt today- virtual. I have had the same PCP for over 20 years. We have butted heads in the past, and will again. He has prescribed something in the past, and when returning for a visit he will ask " Did you take___?" I say No. He shakes his head and we move on. But we have a good rapport. He listens. I listen--just may not always do. We respect eachother. When I was diagnosed, he hugged me (only time) and said "Hang in there". Good guy. I wish my MO and I had that relationship.
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Regarding I3C, my MO said no supplements at all except for Vitamin D/Calcium. I'm not big on the scientific aspects of the drug, but this is from Memorial Sloan Kettering.
https://www.mskcc.org/cancer-care/integrative-medicine/herbs/indole-3-carbinol
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Candy, I just popped in and saw your post about Nurse Neupogen and I have a suggestion:
Stomp her toe and when she complains about the pain, tell her that's today's side effect from being devoid of compassion.
Okay, I'm done with my rant.
Just kidding.....sort of.
PatGMcMad
(I'll be back when I'm less mad to read what's going on with the rest of you friends!)
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PatgMc- Thanks. Hugs.
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PatGMcMad, I'm glad I wasn't drinking anything when I read your suggestion to Candy. I would have choked! Thanks for the laugh. It's welcome this afternoon.
JACK5IE, my MO also had me quit all vitamins, including calcium. I'm only taking 2 Vitamin D softgels and my Arimidex each morning. I'll start the Ibrance tablets next week after I see her. She had me stop the Calcium when my level went slightly above the normal range. That was a first for me. I've always been with the normal range for Calcium.
Regarding the Neulasta - I never had it, thankfully. I've heard it referred to as "Nasty Neulasta".
Cheers and hugs all round, ladies.
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Ladies who have recently scanned - did you have to wear a mask throughout? I go on the 15th for a double whammy of CT (the usual bits) and MRI (either its yet another full spine or lumbar/sacral only - suspect its the latter). Hospital has been providing face coverings at the front when you get questioned and hand sanitized, but the mask gave me so much anxiety last time my blood pressure shot way up. Getting the hang of mask-wearing now, so hopefully it won't be so foreign next time!
I would be ok with the CT with a face mask, but I dunno about a full-ride spinal MRI for 40 minutes - I can handle the enclosure but laying down with a mask may be a step too far (L/S would be ok as my head would be outside the tube, ive had these before).
(wish we had a Stage IV scan thread as I know others are scanning on other regimens!)
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I wore mask for my PET/CT scan recently & had no problem with it.
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To SondraF,
I too have trouble breathing but have found the 100% cotton masks to be much easier than the blue and white medical ones.
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I had a 1 1/2 hour MRI scan a few weeks ago. The mask during the MRI was optional.
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I was not required to wear a mask during my pet scan. That's because I ASKED. I said I would rather not wear it during the scan. I wore it all other times before and after the scan. You have to speak up about your wishes.
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I did not have to wear my mask during my MRI -- in fact, I wore it into the room, and the tech, who was masked, told me to take it off and put down some paper towels for me to leave it on. I don't think it would be feasible to do a mask during an MRI because of the breath holds -- I was thinking that while I was having the test. I also recently had a nuclear bone scan and they said no mask, and a CT where they had me wear the mask while they set everything up and then said I could take it off. In all instances, staff was masked.
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