Ibrance (Palbociclib)
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Scans yesterday afternoon. I somehow managed to have very little anxiety this time. Big mistake?!?
This morning, at 8:29 A.M. I get a robo-call from my insurance company saying that my "requested imaging tests have been approved." Then another call with the same message at 8:54. My NP had said that they'd definitely get in touch if there was an issue so I didn't have to wait until my next regular appointment next week. But she was off today so I didn't hear anything.
There was a lot of confusion with scheduling the Tuesday scans -- I got two robo-calls and then a letter telling I needed to schedule them -- after I did. I called my NP on Monday and she stepped in on Monday to confirm. My hope is that they screwed up and and accidentally put in for the sames tests over again rather than something new being ordered. I guess I'll know tomorrow. And probably be up half the night. I guess it's PSTD from 2017, when they thought I had liver progression shortly after my original MBC bone diagnosis, and they rushed me in for an MRI.
Thanks for letting me vent!
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Elenas and Kitkit here's an article I found for you on oligomets and a "cure" in general:
https://ascopubs.org/doi/full/10.1200/jop.2015.008953
I bolstered myself before my scans by finding positive things to read.
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kitkit- MD Anderson had a clinical trial awhile back for oligomets patients where they were screening high risk patients to try to identify more with just a couple of sites for study, they said in reviewing their patients, they seemed to be curing about 20-25% of them using an aggressive approach that includes radiation. Moreover, radiation and Ibrance are both known to boost the immune system in different ways, and might work even stronger together and kill any other cancer cells lurking in your body. if your insurance approves, I'd try that radiation and I-F combo...
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Hello, on my first cycle of Ibrance. I bit my lip last weekend and it seems to be getting worse not better. I’ll be checking with my MO tomorrow, but is there anything I should be doing in the meantime? My wbc counts were 1.5 on Monday.
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Kitkit, I’m at UCLA and my MO decided to proceed with curative intent. When I asked him what that meant, he said that I’d die of some non MBC related. Good enough for me.
I see Dr Glaspy as my MO and Dr Beron as my RO. Both were up to date in the MDA trial cureious mentioned. Good luck
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Jennyunder, if you develop a fever you should go to the emergency room ASAP. Otherwise, I think you should be sure to talk to your MO ASAP!
Jensgothis, can you remind me -- were you diagnosed de novo too?
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Jenny, this is what happens to me with mouth sores. When they are just developing, they are slightly elevated but not identified as a mouth sore yet (by me). Because of the "bump," I am more likely to bite that spot. Then the mouth sore/bite seems to get worse because it is a combination of traumas. I may be totally alone in this but it has happened to me more than once.
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Jaycee, thanks, that’s very helpful. Do you use magic mouthwash or some other thing to heal them? And no need to worry about them unless the infection appears to be spreading?
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Hello jennyunderthesun.
I get viral cold sores, usually the last 2 weeks of the Ibrance cycle. I always have my magic mouthwash available. But I also have Valtrex (prescription for antiviral). My MO prescribed 2 grams of Valtex at first sign of lip, inner mouth pain with a followup dose 12 hours later. That dosing works for me, but always consult with your MO/physician.
I think the last 2 weeks are stressful on my body with the lowered counts. Just remember that your blood cells are in "suspended animation" in your bone marrow and will continue to mature your week off Ibrance. It is not like chemotherapy where your blood cells are killed.
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Jenny, I usually just wait for them to go away. If one is really painful, I use Orajel Mouth Sore Gel. I've never had any magic mouthwash although I do believe in magic.
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Hi; Just received this and perhaps some here are interested. I don't live in Toronto, Ontario but this is where the interviews are.
https://www.volunteersignup.org/3H7Y3
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Hope1018– hoping you see this! I can’t reply to your pm because your settings don’t allow for personal messages any longer. Just got my Xgeva today (postponed for a work date), so far so good.
Thanks to the rest for helping me understand the mouth sores better. Does anyone take lysine supplements for that? Or know whether it’s contraindicated? I used to take them for regular cold sores.
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jennyunder - I take l-lysine the minute I feel a cold sore coming (the tingle in my lips). I generally take 3, then a few hours later take 2, then at bed time 2 more. The next day I take 2 in the morning and 2 later in the day...so far it has kept them for popping up. Just this last month I have decided to take 1 l-lysine a day, so have been doing that. My meds are Ibrance 125, letrozole, crestor and olmetec (cholestrol & high blood pressure) and there are no interactions as I checked with my Pharmacist prior to commencing. I was taking 1000, but just discovered 500 strength and the caplets are smaller, so I am going to use those and see what happens. Hang in there!
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cold sores are different than mouth sores.
Cold sore = viral and lysine is an approach
Mouth sore = due to GI tissue issues or other possibilities like b12 deficiency
Important to not confuse the two
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Yes, you are correct Ichangedmyname.
For mucosal sores, I gargle with warm salt water. And if it becomes painful and more prevalent, I use prescription Magic Mouthwash.
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This was shared on the Ibrance patients' Facebook page today. It would be great for some of our Dancers to participate!
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Penny,
I was sort of dx de novo. We rushed right onto chemo before we had the Petscan. I think I had had one or two chemo infusions before we found out the stage 4. After the Petscan, the MO told me he would have still treated me with chemo since with one met site they would have done the whole regime like the do for early stage. (That could be interpreted as a CYA response, but I believe him). His phrase was, "swing for the fences." I love that phrase!
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Hello again,
spent the afternoon with a wonderful MO at UCLA, Dr. McAndrew. He has convinced me and my husband that the best course for me is a UCLA clinical study that combines a new drug copanlisib, Ibrance, and letrozole. I have my fingers crossed that I qualify. The MO said that because I have lobular, I could go through some very difficult months with chemo and radiation, and he is 95% certain the cancer would return. He thinks that adding copanlisib could allow me to continue a normal lifestyle for many years. Who knows? If I qualify, fingers crossed, I will give it a try.
Kitkit
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kitkit- interesting trial! the Copanlisib inhibits PI3K-alpha and PI3K-delta, targeting he latter may also have the added benefit of boosting the immune system, and could synergize with Ibrance to make your immune system work better on the cancer as well. It seems that these combination trials of PI3K and CDK4,6 inhibitors (with an AI) are what docs are choosing more often now for first or secondline. Does the trial require that your cancer already has a PI3K mutation? The Alpelisib trial did, but some other trials seem to be using the PI3K inhibitors to try to prevent getting a PI3K mutation..
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kit, it’s nice to hear of your good appointment with the the MO. Wishing you all the best with the course of treatment you’ve selected
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I have not had a genetic analysis so I don't know about a mutation. It does require that I not be on anything currently. Thank goodness that I didn't complete my Ibrance order a couple of days ago when I was desperate to start something with my first MO. Had I begun Ibrance I would not have qualified.
The study can be found online. It is being done with NIH money through UCLA and I'm sure other places. If you want to find it, and are having trouble, let me know and I will put up the link.
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what to do after progression on I-F?
Here is one short discussion, altho it gives no clarity: https://www.onclive.com/peer-exchange/unmet-needs-...
It is clearer tha cdk4,6 inhibitors don't work well on cancers that have progressed following everolimus (AA) treatment. The response reported is far worse than that of patients who had not seen everolimus before. So it suggests we should use up whatever good options CDK4,6 inhibitors might offer (ie, in combo with immunotherapy or PI3K inhibitors) before moving in the AA direction..
https://www.clinical-breast-cancer.com/article/S15...(17)30805-4/pdf
And relatedly, a recent retrospective analysis of patients (ie not a trial per se) revealed that those who progressed on I-F and then tried AA had a PFS of only 4 months (ouch!!), which is only half of the PFS reported in the initial AA trial (BOLERO-2; the PFS was 8 months), which was done before Ibrance was available. The OS of the former group was also about half (double ouch!!). This analysis had only 25 patients, so we could get a better (and quicker) sense of whether AA is or is not helpful after I-F from the experience of people on these boards.
https://ascopubs.org/doi/abs/10.1200/JCO.2018.36.1...
Trials are also checking AA-CDK4,6 inhibitor combos for patients previously treated with Ibrance.
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kitkit- As you say, UCLA is supporting your trial, rather than a pharma- interesting! And testing both early and advanced ER-positive breast cancers. No requirement for PI3K mutations, so the copanlisib is presumably used to prevent/delay PI3K mutations from popping up, giving a longer run on the I-F..
https://clinicaltrials.gov/ct2/show/NCT03128619
The UCLA faculty include the fantastic Dr. Dennis Slamon, the first to bring both herceptin and ibrance into clinical trials.
Go Bruins!!!
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hello everyone!
Just popping in to spread some love and wish you all well.
I celebrated my 42 birthday last Saturday and also my 2 year cancerversary!! I have now officially been on Ibrance for 23 cycles and still going strong (knock on wood!!). 🕺🏽💃🏿🕺🏽💃🏿🕺🏽💃🏿🕺🏽💃🏿🕺🏽💃🏿
It feels like waking up is so hard these days. Like I feel soooo heavy or spacy in the mornings. I have to drag myself out of bed and have a cup of coffee to get the gears in motion. Once I do that, have some food, and take my medicines, then I start to feel like the ol’ engines warmed up. But geesh! I don’t ever remember it being soooo hard!!
ANyone else dealing with this?
Love and hugs, 🦋💕🦋💕🦋💕
Philly
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Cure-ious- scary data re AA after CDK4/6 although oddly enough the last sentence of the study said "This small study, for the first time, suggests that EV has evidence of clinical benefit after progression on PA in HR+ HER2- MBC. Larger studies are needed to confirm the results."
Triplets seem to be being studied a lot these days- hope I can hang on long enough to see them succeed and take one.
Congratulations Ichangedmyname!
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Hi Ichangedmyname;
I know exactly how you feel. Maybe this would be good for us......lol I think I could handle it and the money would be useful.
https://www.thisisinsider.com/nasa-will-pay-you-18...
hahaha
Cathy
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holy moly Seaway!!! That is the craziest article!! 😂😂😂😂😂😂😂😂 I’m cracking up over here!!!!!
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NKB- Yes they took the positive view, AA did give a PFS of 4 months. And this was not a controlled trial, so it can't really be compared to BOLERO-2, but it does say when and how to use AA after I-F remains an open question. They will probably find a new combination and maybe include a dose reduction for everolimus given how many dropouts they have on the drug. Its clearly worth trying, in case we get a strong response, and if not, move to Alpelisib, which had a PFS over a year (including I-F patients).
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Seaway, I'm too old for your study but if they needed people with experience, we'd be shoo-ins! What really made me laugh is that the total of my treatment for one month is around $20,000! I can guarantee the participants one thing - they're going to be fatter. Who knew artificial gravity did that?!
Love from PatGMc
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yes Philly - when I wake up in the morning, I feel like there is a huge weight on me that I have to push off. But once I move around a bit, I get going. June will be my 4-year anniversary on Ibrance/Letrozole. And i am thankful for every day, tired or not.
Take care everone
Kitt
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