Ibrance (Palbociclib)
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After 6 years my I/L cocktail has stopped working. Progression from my bones to lungs, although I can feel more areas that are suspicious. I have a PET scan Friday. My treatment will be Fluvestrant with the first injection tomorrow. What kind of side effects do I have to look forward to?
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Lucky- do they continue with the Ibrance as well? Or is there some new genetic testing that would indicate that you are resistant to it now? Unless you know that the cancer has acquired a Rb mutation or CDK2 up-regulation, the trial data would indicate that there is about a 1/3 chance you would remain sensitive to Ibrance (for more than six months), a 1/3 chance you can still respond but for less that 6 months, and 1/3 chance to be fully resistant. Given that you have been such a champion responder to I/L. your cancer would seem to have been very sensitive thus far!
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hi sondraf, re mouth sore, Bonjela can help, although I found Boots [UK chemist] own version with lidocaine more effective. try and use mouthwash after food and drink. Magic mouthwash has been recommended by others on this thread.
wishing others awaiting scan results, like me, all the best.
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Mike, good news re better counts on 75mg! I know from experience that the thought then creeps in that it may not work as well, but balance that thought out with needing your body to be fit for the next cycle! Hopefully the scan will reassure your wife that the drugs are still working just as effectively, as they did me. Have a scan myself on March 13th....
Lucky, hoping Curious has a point re Ibrance efficacy and she is knowledgeable....plus you definitely have a body which responds well! Onwards.
Others will chip in re Faslodex, but the general opinion seems to be finding an experienced person to administer who will take their time and warm up the drug a little first, otherwise a sore butt seems to be the norm.
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Lucky,
I guess I'm one of the few who actually don't mind the faslodex shots. Of course, I am well padded in that region, and I assume that helps. But the nurse who generally does my shots (and people who substitute for her) do warm up the shots a bit, and they inject VERY slowly. If there is any burning while the shot is going in, the nurse will slow it down, even if it seems VERY slow. She also provide me with those little ice packs that they have in the hospital for my ride home, and so I crack those, put them in the appropriate place, and do my drive home. Sometimes I don't use them, but they do help. Also, I have my shots done at a very large facility, and my appointments are generally spread out on the same day. So after my shots, I take a good long hike through the facility and go get a cup of coffee or something to make the hike worthwhile. I does help, I think. My bum is slightly sore for a day or two, but after that I don't notice it. I also have sciatica on one side, and I remind the nurse of that every time, so she aims the shot slightly differently.
Good luck.
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Good discussion about Faslodex injections. Thanks Cure-ious for that info. I am still stable on I/L--cycle 27, but I wonder about progression and next line therapy. MO has stated a PARP for me next, but I am leaning toward Ibrance with Faslodex.
If PARP, do you combine with something else? Faslodex or an AI? Need to read Bestbirds' guide again.
Also, question for group (BevJen)--- When you get Faslodex injections do you lie down for the shot? I get Lupron monthly injections and the nurse gives it in my butt, but I am standing up. Leaning against chair or counter with weight on opposite leg. No where to really lay down--we have recliners in infusion center. Guess could try to lie down in recliner. ???
Lucky- So sorry for progression for you. 6 years is a good run on I/L. Hoping the next line of treatment will last you another 6 years.
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Candy,
No, I do not lie down. The infusion room has a bed. I did that the first time and it hurt more. I am tall, so I have the nurse pump up the bed to its highest point, and then I lean on it. As per advice I found on this forum, I take the weight off of the side that's getting the shot -- I actually wrap that foot around my other leg -- for the duration of the shot. Then I shift off of the other leg for the other side. Hope that helps someone.
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Thanks BevJen- Sounds like the way I do the Lupron shots now. Good to know for if/when I do Faslodex in the future. Are you on Ibrance with the Faslodex? Letrozole? Sometimes the profiles are confusing with old treatments shown.
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Lucky4life, I get very little trouble with Faslodex. BevJen has got it right. You need a good practitioner who warms up the liquid before it is administered. I have had one painful experience with injections in 2 years, when an inexperienced nurse did not listen when I said to go slower, she said ''This is slow!!''. I would shout if that ever happened again. My lovely, regular breast cancer care nurse timed it once - she took 7 minutes for one shot!! The area is tender to the touch afterwards, but I am often unaware I have had it done, if nothing touches the area. I agree some exercise helps, often I go for a stroll after treatment. A good coffee and doughnut make it better too!! [Ok, I made the last bit up, but it's a good excuse to treat yourself.]
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Candy...that's great news!
Mike...wishing your wife a good outcome. Great news on the blood results!
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BevJen - please post what you find out about Turmeric and Ibrance, I take supplements as well as using in cooking. I have asked DRs about turmeric and list it with other stuff I take, none have mentioned a concern. I take Ibrance (Cycle 5, day 20) and Arimidex. Supplements include Mg, D, biotin, C, Turmeric(Curcumin), Gluchosamine-Chondroitin,BoneUp(multi with Coligen),Thorne (another multi), Melatonine(at night).
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. . Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology.
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Lucky...so sorry for the progression but as Candy has said, hoping for at least another 6 years on new treatment.
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Lucky4life - I agree with what the others have said about Faslodex. I looked on this site for what to do. My oncology nurse already knew her part so I didn't have to tell her to warm it up and go slow (my injection time is longer than just injecting a regular shot but not as long as denny10 requires so it may depend on what each of us requires). I just had my second set of Faslodex shots yesterday.
My standard protocol for me is:
Take weight off of leg that is getting the shot (I get my shots while standing)
After shots, rub each area where the injections were given in a circular motion
Walk for a little bit after getting injections (doesn't have to be a lot of walking but a little stroll to get the Faslodex moving through your system)
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Candy,
I am on Ibrance with faslodex. I was on letrozole from 2006-2019 for my first recurrence, which was to a single site of metastasis to a polyp on my cervix. 13 years on the same treatment which held me for all of that time. So when my tumor markers went up and we found evidence of further mets to the liver, the docs put me on Ibrance with faslodex. I don't know all of the terminology, but I do know that faslodex operates a bit differently in the body from the AIs.
Bluegirl,
I think someone just posted some information about tumeric within the last couple of days? I'm not a supplement expert at all. I just read a lot, and when something says that a particular supplement might not be good with Ibrance, I mentally file that away as something I probably shouldn't take.
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Lucky, sorry for your news, but I and read carefully the suggestions of others. I also watch your posts carefully as I have been on I/L for 46 cycles. Please let us know how you are doing.
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Lucky, I'm sorry about your progression. Trying to wrap my head around being on this drug combo for six years, and then having it no longer work.
I think I remember you saying, in an earlier post, that you had a met/mets in your arm? I remember that unnerved me, because I get a PET scan every six months, but I keep my arms over my head, and they don't get scanned. I forgot to ask my oncologist about it... but for some reason it popped into my head when I read your last post.
Also, if I may ask, were you NED/NEAD/equivalent on the Ibrance/Femara? Or were your mets considered stable, but still visible?
Wishing you a MINIMUM of another six years on whatever drug you're given next, unless of course there's a cure in the meantime
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Question for the group- My MO has never said "NED/NEAD". She will say "stable" or something like "Things look the same". My CT will say "Liver lesion measures ___" or "Liver lesion similar to last scan". And bone lesions are "sclerotic". So what makes NED/NEAD versus Stable??
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My Onc. said NEAD because there was no more tumor to be seen, hence the "NE" part (No Evidence). I only had one met, to my spine, which cleared up on my first PET scan after starting Ibrance, at the 6-month mark. There were marks on the bone where it had been, but the tumor itself was gone. My primary tumor had been removed prior to starting the Ibrance, so that one was never a factor.
Of course, my doctor stresses every time that "No Evidence" doesn't mean "No Cancer"...
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So since we still see liver met we cannot say NED/NEAD? The bone mets are described as "sclerotic" so can that be healed area and no tumor noted anymore?
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PatgMc- How did your MO appointment go? I had you on my list as Feb 10 appt. I don't remember seeing you post about it.
Edited to say- Worried about Pat. Last post was Feb 7, before MO appt. Said there was progression on scan and would talk to MO on the 10th. Worried about her.
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Hi Candy, yes sclerotic means your bones are healing. I have the same verbiage on my last pet.
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I got my latest scan results. Stable. I am jumping for joy. I have had pain in my back and was worried about progression to bones from lung but no spread. I remain on Ibrance 75mg and faslodex for the months ahead, 2 years in March.
I hope everyone has a similar outcome from their scans.
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Great news on being stable denny10!
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WOOHOO Denny !!!!!! Way to go !!!!!
So, again, about the verbiage- Stable, NED, NEAD-- I still have noted liver lesion (measurement each time on CT to compare to last CT) and sclerotic areas in bones, but my Nov PET said no uptake. So... Stable or NEAD- no active disease?? I guess it doesn't really matter what we call it. Just wondering. My MO has never said the words NED/NEAD. She just says No Change or that things are holding their own.
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Congrats Denny!
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Candy. Liver met on CT scan can be dead, deadish or alive, only the PET scan can say if still metabolically active.
So since no uptake in liver met and nothing new is being picked up on scans, it looks like to me you are NEAD!
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Denny, celebrating with you! Yay!
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Denny...great news!
Candy...concerned about Pat too.
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Yeah, Denny!! Good scan results, hearing that never gets old...
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congrats denny and candy
Waiting for pat to check in too
Tanya
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