Ibrance (Palbociclib)
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Checka - I think the most important thing about when to take your Ibrance is to do it at a time when you can be most consistent. I take it in the morning because my breakfast is the most consistent time that works for me. The old capsules needed to be taken with food but I think with the new pills that it doesn't matter but you might look in your box and see if it mentions it.
Ciaci - I hope you got good news. I am surprised that your MO says that you may be able to come off of Ibrance. Doesn't Ibrance just put the cancer cells to sleep but they are still there. I see that you are also on an aromatase inhibitor; will you still have to take that?
Aprilgirl1 - If all of a sudden they start sending by Ibrance in a hazard bag, I will save them up and send your way for the dress.
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Checka,
I usually take mine around 8:30-8:45 at night after I put my son to bed. He saves all his talking and worries until then so I try to give him my undivided attention. Once I head downstairs I go directly to the Ibrance before I sit down. I end up taking mine with food only because my husband and I are late eaters . I've had nausea but not sure if it's related to the Ibrance or not. I'm on about 5 other meds (with nausea as a possible SE) so it could literally be any one of them. Try not to anticipate too much. We all react differently but I do know that most of us do relatively well SE wise with the ibrance.
With the fluvestrant, I get the sore hips for a few days and I love to sit cross legged which is almost impossible with the soreness. I usually find on injection day or the day after, I have a restless night with sleep. Sometimes my joints get achey for a few days after . Hot flashes are back but not as intense as with an AI or Tamoxifen. I have my shots this friday. Injection day always comes quickly lol
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Got my scan results, and it looks like I've got some progression. One small focal spot lit up on my vertebrae - the same vertebrae as last time (T-11), just the opposite side. Next step is an MRI, because the CT portion of the PET scan showed "no clear correlate". Then an appointment with a radiation oncologist to see if I'd be a candidate for targeted radiation. She said if that works, I won't need to switch off the Ibrance or letrozole (I guess deciding whether to stop it in August is moot now). The only reason she said the radiation guy might decline to do it is that I have no pain. So then do we just wait for it to start hurting? Yikes! Well, as my husband says, one step at a time.
Has anyone had the targeted radiation, to the spine or anywhere else? Wondering what kind of side effects to expect. I know I can look it up, but I trust you guys!
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Ciaci-Sorry to hear about the progression. I had targeted radiation to my spine at the beginning of my treatment. I did not have pain in the spot that was radiated (thoracic spine) but the doctors were very concerned that it could lead to paralysis or inability to control body functions if I didn't get it radiated. My treatment was only for 5 days. At first they told me it would be for 10 but then it was decided 5 was enough. The side effects were a painful burning feeling in the area. I was still working and it was extremely painful but I didn't ask whether I could use Ibuprofen for relief. Turns out that I could use that.
Hope you will be able to get the treatment and that it goes smoothly.
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Ciaci, so sorry for your progression! I hope that rads can burn it out so that you can continue on your treatment.
Hello all! I took some time away after losing Rabbit. I still expect to check in and see one of her long, detailed posts but I’m sure she’s hamming it up where she is.
Today I start my 6th cycle. So far it hasn’t been too bad. I think cycle 4 was my worst with a ton of nausea and constipation. I’m hoping this cycle goes smoothly as the last week my husband and I will be in Las Vegas. We love to go there to eat and people watch! I will say though, the last few days of my week off have not been super great. I’ve had a mild to moderate headache for 3-4 days with accompanying nausea. I had plans to get things done around the house this week but I haven’t been able to not be lazy. Hoping things get better this next week!
It seems like a lot has been going on here in the last few weeks. I’m sorry I haven’t kept up. But welcome newcomers! Like everyone has already said, we are all here to help and commiserate and support
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Ciaci, I had two targeted sessions of SBRT to the tumor in my T9 vertebrae one year ago. I wasn't experiencing pain, we found it on CT and MRI (then confirmed with biopsy). I experienced fatigue for a couple of weeks, it's a hefty dose of radiation even though just two sessions, and no other side effects. The most uncomfortable part was laying on an extremely hard, flat board for the procedure! My MO and RO's goal was to try to kill the tumor, and so far that seems to have worked.
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Ciaci - I am sorry to hear about your progression and hope that they can come up with a plan to get your spot. Keep up posted.
Katyblu - I fail miserably at keeping up with everything and everyone on this forum. I just do the best I can.
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Ciaci - sorry about the slight progression. I had my L5 zapped with SBRT. I didn't know I had a met there or my arm as I had no pain. But the RO agreed to treat the sites.
April - sorry that your meds aren't coming in the yellow hazard bags. I think I have a few left from my ibrance/lynparza days. Let me know if you want me to send them to you for your dress!
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Ciaci - I had 5 sessions to my sacrum and will be getting 5 to my L4 soon as they can get it lined up. I asked why the 5 and radiotherapist said due to the tumor size and risk fracture it had to be 5 in order to kill the tumor completely. Also - no pain in that vertebrae but clearly a 1 and done wasn't going to do it. If yours is a tiny spot, one shot may be enough.
Only side effects I had were some lightly pink skin and one morning of Big D, but nothing immodium couldn't handle. T11 is obviously a different story given location, but with all the planning and beam targeting, there shouldnt be too much in the blast radius. Someone around here has had T11 before but I cant remember who it was.
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Checka: I just started Cycle 5 on Ibrance. My oncology pharmacist suggested that I take it at night -- so I do, at 9 pm which is an hour before my usual bedtime. I haven't had any major side effects, but like others it does make me gassy. I've observed that for the first 12 hours, I'm more likely to have gas, but that it tapers off to almost nothing the second 12 hours.
Someone many, many posts ago gave this advice:
My tips for new Ibrance users:
1. Drink lots of water-try for 72 oz a day.
2. Exercise as vigorously as you are able-outdoors if possible. Also incorporate yoga/stretching.
3. Eat Greek Yoghurt to help protect your mouth from sores and keep your stomach healthy (this tip is stolen from our beloved PatMcG).
4. Try to get lots of sleep at night-consider giving up caffeine and alcohol to help with this. Take naps only on days when you are exhausted.
Ciaci, I'm sorry to hear about the progression, but so glad that the met is small and asymptomatic. It's caught early! I don't have experience with radiation (it was not recommended for met on the sternum), but I've seen recent research that melatonin can help with radiation toxicity: The melatonin immunomodulatory actions in radiotherapy (nih.gov). Apparently the first studies were done in the Defense Department.
BTW, melatonin has also been identified as a deterrent for breast cancer, slowing its growth; I've been taking 20mg a day. It also helps get one's Circadian rhythm in sync for a good night's sleep.
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Ciaci- I had 5 doses of radiation to my right hip (did not have pain) and that totally killed it. felt fine- although 2 months later had some muscle pain for a few weeks resolved with stretching- not sure if it was related.
I am getting a big zap to L2 and sacrum this week and I was told I could have nausea. I have pain in L sacrum- but, was told they would zap it to prevent pain or fracture.
if only one spot it is a good way to continue your same treatment.
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Thank you all, for making me feel so less scared. You all are the best!!
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Ann Topp,
What is your source for "melatonin has also been identified as a deterrent for breast cancer, slowing its growth". I'd like to learn more. I take a small dose (.75mg) at bedtime and it does help to reduce waking at 3 AM. When I was on Verzenio, I asked the oncology pharmacist about interactions or contraindications. Was told "it hasn't been studied" but low dose was probably OK. My MO was noncommittal when I told her I had started taking it. WenIn WI
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AnnTop. That is interesting about the recommendation you had. I am about to get radiation on my sternum, as well as all the usual places. Also, I didn't know that about the melatonin. It is the only supplement my onc recommended, but for sleep on the letrozole. (Her nurse suggested adding D3 and calcium which she ok'd.)
I had 6 or 7 cycles of ibrance before my masectomy. Not sure exactly because I had to keep taking extra time off between and reducing dosage. 75 is tolerable for me. My anc hovers around .9 . I'll go back on it after radiation.
I get a 1/2 mammogram/US on Friday 🤣.
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Thank you all for the encouragement. I decided to take my first Ibrance pill last night before bed. Here we go! I was feeling pretty down today from having shots yesterday and starting the new meds, but overall I think I'm adjusting to my newest normal which is a good thing!
I had one blast of radiation to my rib in 2020 (it was the first met which I discovered because of the pain-anytime I'd laugh, sneeze, cough, rake the yard... ouch). It was only one dose, so no side effects really at all. It totally took away the pain and my last scan showed the rib is stable (dead?) so that's encouraging, and Ciaci, I hope you can get it to stabilize things. I know we want to utilize radiation with caution, but it may be an option. Keep us posted.
I take melatonin each night, 20 mg. I forget why. lol, but I echo AnnTop. I have lots of supplements! Also AnnTop, thank you for the pro-tips. I will make a note of them! Luckily I'm already doing some of that.
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I had targeted radiation at L4 two years ago and the only side effect for me was fatigue. I did 10 days. My back pain was at an 8 prior to radiation, but I also have degenerative arthritis
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Ciaci - My T11 has been problematic since day 1. Ibrance started to knock it down but eventually it went from up to 9.8 then 15.3 SUV so I had an MRI of that region and it found another lesion on L2. My RO recommended treating that area with 5 sessions of 4 gy each. I haven’t had any back pain since my radiation BUT in complete disclosure, after a few PET scans of decreasing activity, my latest PET showed “increased intensity and extension 11.7 SUV
From what I know of your situation, I’d be comfortable treating T11 and continuing on Ibrance. I’m very interested in what your MO/RO has to say. I was told by my RO that I might have some diarrhea but that was not my issue. To help you understand my experience, I dug up an old post and pasted it below.
From Feb 2021 post: I completed 5 radiation treatments on T11-L2. On day 1 I started feeling a strange sensation throughout my hip and butt region. This is where I used to have extensive mets. It was like electricity and made me feel like I had restless leg syndrome of the butt. Lol. Day 2 started a constant pain and pressure in this same area as well as fluid buildup on a previous surgical site that always troubles me. That night was truly awful but on day 3 it started to slowly subside. The RO seemed mystified that I was having this type of a reaction. 🤷 The restless butt/pain has now subsided (mostly) but on day 5 my esophagus started having constant spasms. It was like food was stuck in my throat and my esophagus was trying to get the food down. Swallowing saliva felt like I was eating a whole pizza pie without chewing. Anyway that is now getting better. So strange that my reactions were not directly in the area treated. Well, I've never been a textbook case so why start now. On the bright side, my back is also improving.
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Ciaci I am so sorry that you have hit a bump in the road. When I was dx with very extensive mets I immediately had 5 doses of radiation to my whole T section although the rest of my spine, ribs, sacrum, clavicles etc etc have mets and arthritis. It certainly helped with the pain and I did not experience any side effects. I had 20 doses of radiation after lumpectomy & lymph node removal when dx with bc. I was warned both times that the radio could damage my heart and lungs but so far no problems there. Hopefully you can continue on Ibrance but maybe swop Letrozole for Fulvestrant.
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Ciaci - I am sorry your scans showed this t-11 progression but as others have said, it is great that it was caught early and I love all the support and info you have received from others that have had specific bone areas radiated and continue on with treatment.
Katyblu - good to see your post! Hope the rest of your ibrance cycle goes well and you and your husband enjoy Vegas!
Checka - I also take my Ibrance after dinner, usually around 9pm. Seems to work well for my schedule and I set an alarm on my phone so I don't forget.
Ann-Top and Checka, thanks for the info on melatonin - I will look into that and ask my MO about it.
All the helpful info and tips on targeted radiation that I have read on here makes me so happy for this supportive group, on a supportive discussion board!
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WenInWi asked me, "What is your source for "melatonin has also been identified as a deterrent for breast cancer, slowing its growth?" Below are just a few links to articles, most accessed through PubMed. Melatonin is being used by some integrative oncologists in dosages as high as 180mg to treat a variety of solid tumor cancers. The 180 dosage comes from a study in mice, and needs more clinical work with humans, however.
Melatonin, an inhibitory agent in breast cancer - PubMed (nih.gov)
Melatonin and breast cancer: cellular mechanisms, clinical studies and future perspectives (nih.gov)
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Thank you, thank you, thank you, I love the support I get here!!
RK2020, the SUV was 5.1, which the report noted as "moderate", but my onc said it "glowed like Christmas" since it was the only thing glowing...
One step at a time.
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ciaci sorry to read about your progression. Wouldn’t it be great if you could do rads and stay on ibrance.
take care allTany
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RK 2020, what is SUV?
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MoCoGram - SUV stands for Standardized Uptake Value. When you have a PET scan, it is the amount of radioactive tracer detected in a specific body part. The SUV is equal to the tissue tracer taken up by the tissue, divided by the injected dose of tracer, divided by the body weight of the patient. It is used to distinguish benign masses from those that are cancerous and to monitor the response of cancerousmasses to treatment.
AnnTop - Thanks for the melatonin articles. I've got some reading to do.
Ciaci- You've got this. And we will all hop in your pocket for your RO consult. Keep us updated. Sometimes the raucous in the pocket gets so loud I can't hear the doctor. You know how this group is, lots of singing and carrying on.
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ciaci in for pocket duty
Tany
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Is ibrance brain a thing? I just found something in the cupboard that was supposed to go in the freezer...lol, and now straight into the garbage!
Also joining the fun, raucous pocket duty gang: Ciaci for your RO appointment, Nkb for your radiation appointment(s). And for anyone else who maybe just needs a little support. A friend of mine recently was learning hilarious dance steps for a zoom birthday party to the song "Spice Up Your Life" and now it's stuck in my head. I'll be singing that.
RK, I laughed at the "restless leg syndrome of the butt", thank you for sharing! 😆
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Had consultation with the radiation oncologist yesterday. I'm not scheduled for the MRI until next Wednesday, but she wanted to go over some "if...then" scenarios. Worst case: it's cancer, and I'll get three treatments of targeted radiation over three consecutive days, and we'll be done. But - and it's a pretty big "but" - she's not convinced it's cancer because, upon reviewing all the PET scans, it appeared in a lesser form a couple of times over the last five years. Could still be metastasis, but could also be arthritis or stress-related from the other side. we'll know after next Wednesday...
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Does Ibrance or Fulvestrant cause weight gain ?
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Its Interesting about the SVU cause I looked at past Pet scans and mine mention nothing about uptake- Just that it was either higher or lower than last time. Like this most recent PET just said FDG activity significantly decreased compared to last scan. I find it so interesting how different places do/track scans differently
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I don't know if it's the Ibrance, but I'm about 10 pounds heavier than I was when I started it. I've been taking it since June of 2020. It's not a huge increase, but it's enough to bug me (but not enough to really do something besides whine about it.)
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