Ibrance (Palbociclib)
Comments
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BevJen- Happy to hear your TM's are going in the right direction!!! Woohoo for good news.
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BevJen - Glad your CEA went down. Hope my TMs are doing the same. I get tested next week.
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Hi All,
Candy you mentioned oncology as being an art. Now onto my third MO from primary and into MBC I absolutely believe that to be the case. Science, trials and robust research provides the basis for treatment but the care of an individual is alchemy...based on experience, knowledge of the patient, flexibility and creativity. All of my MO’s have demonstrated these.... but maybe not always the best bedside manner. Frankly my nurse team are there for that... they check on my well-being and mental health. I need my MO to be shit hot with the stuff which keeps me standing and the humility to accept that they do not know it all. I’ll take a shrug of the shoulders any time and a “worth thinking about” comment over an MO who thinks you need all the answers!
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Rabbit - wishing you well with scan results and next visit. I also like to be contacted about lab/scan tests if the visit with oncologist is more than a week away. Switching MOs if you are not comfortable with the one you have because of the office error - hard to know. That was a lot of stress for you. If you have met an MO that you think would be better, maybe switching is the right thing to do. Do you have the option of "interviewing" a potential new MO? Maybe ask how they would handle a glitch that you went through. I have been contacted by DR office when something major might have changed to figure out if it really did, was an anomaly, or something else.
Pennythepset - you are not a pest for asking questions. SEs are so variable as well as what works to mitigate. Everyone is different, and may be taking other drugs. I have found great information/ideas from people posting on this website. Is you Ibrance tablets or capsules? It sounds like most people are on tablets now. If it is capsules, food is very important for adsorption, all it says is take with food, but you probably need about 500 calories with 20-30% fat. Tablets do not require food. I was just switched to tablets, and I think I do get a little more indigestion with them, in the way of farts. So I've added kimchi, sourkraut to the diet, don't know if they really help. As well as yogurt (always ate lots of that) and kambucha. Fatigue was a big one for me, especially with the first 4 cycles. I start cycle 11 in another day. Stay active, hydrated, and stretch. On bad days, try to push through it with some activity. On good days, push harder. If you clinic offers any kind of of integrated care such as yoga, meditation, acupuncture, that can help as well. I get mouth sores from Ibrance, salt water gargle really helps. I should probably do it daily, rather than when I start getting them.
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FCS is who I used in Clearwater before Humana kicked them out of network.
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Wandering, Tanya-Djamila, spookiesmom, SondraF, KBL - thanks for the input on Tampa area oncologists. So far I have 2 votes for the same doctor and I like his online bio. I’ve got some time to think about my next steps but getting names is the first step.
Karenfizedbo15 - you articulated what I am looking for in an MO perfectly.
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Hi
I'm newish here (been stalking the background for the past few months). I started Ibrance/Fulvestrant on 1 May (after a year & a bit solely on Letrozole - my TMs had been rising steadily from Feb on Letrozole & PET showed increased activity hence the switch). SE wise I seem to have managed OK although had to take two weeks between cycle 1 & 2 for my bloods to improve. My question is about TMs - mine shot up after the first cycle, went up again on the 2nd, & my last lot while not up a lot are still up. My MO said while it would have been great to see see a downturn it "looks like it is definitely flattening" which is "good". Did anyone else have TMs that took a while to come down?
I guess I'm just working myself into a bit of a state of anxiety & worry & then keep telling myself I'm worrying unnecessarily, then keep worrying and on it goes - as I'm sure you can all relate
Thanks
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AnnieLNZ, I know someone has said that if the tumrs are dying and they go into the bloodstream, it can make your numbers go up at first. I’m not an expert and don’t know if I’m saying this right, but hopefully someone who is more familiar will chime in.
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BevJen...I was like you and didn't take the capsules with food. I didn't take them on a completely empty stomach (first thing in the AM), but I didn't take them with a meal either. I told my doctor (well after the fact) and he wasn't concerned about it at all.
As far as TM's, my doctor isn't a fan at all. He says they are too unpredictable.
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Jack5ie,
I do think I read that there was something like a 30% number in the Ibrance trials that didn't respond completely (?) to the drug bc they needed food with it and that's how that requirement was put into place. I have to say that perhaps the pharmacist made some quick comments about taking it with food, but not a whole lot of emphasis was placed on that otherwise.
Yeah, I think docs either love or hate TMs. Mine seems to love them. They also have been somewhat predictable for me as well.
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BevJen...I agree. There was no emphasis that it needed to be taken with food for me either. Not that I remember anyway, because it was such a horrible time just learning I had Stage 4. I assumed that taking with food was mainly for stomach upset. Too late to worry about it now I guess (but hoping I was in the 70%). I was on the capsules for 2 years and now with the tablets it doesn't matter.
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Hello.
My MO changed ibrance to lower dosage, because my blood work affected, I am having difficulty in breathing and continuous fatigue.other thing my cea marker gone up 3 times compared last month, waiting for CA2729 thou, I’m worry If it also jumped up then I don’t know what is next.... I cried since back from the clinic. on top of that stupid clinic's paper works got me out of ibrance for extra days, it will be more than 7 days off until next cycle starts. I’m scared with TM rising and being out of ibrance.... please send some positive vibes.
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Juliabeatit - This is unnerving news but we are here for you. TMs have been known to go up for other reasons like infections. They are a more accurate indicator for some women vs others. Thats why some doctors choose not to run these tests. How accurate have your numbers been in the past? In other words did your numbers correlate with your scan findings?
Dropping down a dose in Ibrance is very common and typically we have to take a 14 day break in between.
Please keep us updated. In the meantime, I will be 5hinking of you and hoping for good news soon.
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Julia - Try not to worry. My blood counts are always low. I usually take extra days off before the next cycle. I just started cycle 8 at 125 mg. If your TM rose in just one month, wait a few more months to see if it's trending up. Then your MO will likely schedule a scan. My CA 15-3 rose each month for about a year and a half before it started trending down.
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Julia-beat-it hang in there. I took 14 days between my first and second cycle & my MO said that it's perfectly OK. The fatigue got me too - some days OK, others just awful - are you able to moderate your activities/work to manage this. This whole thing is such a rollercoaster but the women on this thread are amazing and here for you. Be kind to yourself and keep us posted on how you are x
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Julia, I wanted to add that I am also thinking of you and hoping you feel better with less fatigue soon. I just had 14 days off and started cycle 9 this evening. I am still at 100 mg but I think I will get reduced to 75 mg next month if my neutrophils are again low. Many women on here have been on 75 mg for a long time without progression and a few are 2 weeks on 2 weeks off. We are here for you and no one understands how you are feeling better than us.
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Thanks a lot ladies for your support, you are amazing, your posts made my confidence back. Honestly I learned about my treatment from you more than the MO. 🙏🙏🙏
RK2020, my TM numbers rose since I started I/L combo, then for last 3 months were stable and a little dropped. During 8 cycle of ibrance, The breast tumor slightly shrank but tumors in my spine still growing, even the one that treated with radiation never stopped growing for several months after radiation course completed, it is now “stable” according to MO, which means no change in size. I don’t know if TM shows correlation with MRI results. I like my MO, he is polite unlike everyone in the clinic, but I guess he sometimes very easy spaces out some results or he forgot to tell something that is important for me to know.
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AnnieLNZ - I love your signature!
“In difficult times you should always carry something beautiful in your mind“
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Julia-beat-it pleased that you're confidence is back
this is such a long game - a marathon not a sprint which is hard to manage at times. Having a good MO is key esp. one who welcomes your questions - no matter how random as mine often are . My MO looks at things like a triangle - scans, TMs and how I'm feeling. Ideally all three correspond, or maybe only two, or sometimes it's just about making a joint decision on how to proceed. Be kind to your self & keep us posted xRK2020 - thanks - it's easier said than done sometimes
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hello. Have you heard if CA27-29 suddenly jumped up? Mine has gone up more than 5times higher than last month, the MO just told me.
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Hi Julia,
Some doctors use tumor markers and some dont. It can be an indicator but sometimes it’s not accurate. Have you had a PET scan or MRI Cat scan since you started ibrance? That’s what is usually used to determine whether tumors are shrinking or disappearing.
Tanya
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Checking in. I have two capsules remaining in my fourth cycle. At about this time each month, I have zero energy. Slept an unheard-of 12 hours last night.
I see my oncologist Thursday to receive Faslodex, Prolia and discuss the results of my scans from last week. They are not exactly heartening; the lung mets seem to be growing, so I'm not sure what this means regarding continuing Ibrance. I also want to ask about the doubling of my CA-27-29.
Tina
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Hi Julia, my oncologist doesn't run them and her opinion is they aren't accurate and a sunburn can increase them. She is really adamant about this for all patients not just my case. She works at Seattle Cancer Care Alliance which is part of Fred Hutch and UW and is a breast cancer only MO and has or had been on research projects for PARP inhibitors and BC. I only mention this because it's a large and comprehensive cancer center. That said, I see women on here with oncologists that really watch them and track them every blood test, running scans if they bump up - so I really don't know. Mine have never been above normal levels, with my original dx and with my stage IV.
Tina2, let us know what your oncologist has to say. I have fatigue too at the end of my Ibance cycle - feel like a zombie by 8pm. I am still working full time. I am in week 1 (4 or 5 days in) and have normal energy. I think i just started cycle 9?
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Tina,
I tend to feel the same near the end of the cycle -- like I really just don't want to take those last couple of pills. Last month, it lasted into my off week, and I actually started my pills a day late bc I was so exhausted. This month has been a bit better.
Hope you have a good appointment with your MO on Thursday. Thinking good thoughts for you.
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Hi everyone, Just wondering if there's anyone out there that has had or known someone who's had my change of treatment. After a rise in tumor markers and slight increase in primary tumor size my MO switched me from Ibrance/Letrozole to Ibrance/Faslidex. Why would that work if Ibrance/Letrozole ran it's course. I was on that a little over 3 years. Would welcome any info.
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Tina wishing you good luck at your MO apt. I am on cycle 49 & wishing I could sleep for even 6 hours. I have got used to feeling washed out on my ‘off week’ and just power through it as best I can. Thinking of you
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I am posting today to say thank you for all the contributors to this thread for the past 26 months, the time I took Ibrance. It was a tolerable drug once I got to a 75 dosage. I had hoped to stay longer but ' scans' proved it is time to move on. After some palliative radiotherapy, I am off to the Xeloda thread.
Keep dancing Ibrance dancers , I wish you all well.
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denny10...I'm so sorry your scans did not have better results. Best wishes for you for many years with Xeloda. (((hugs)))
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Zombie doesn’t begin to describe how I feel on 125 mg. Mentioned to MO, next lab he checked B12 level. I was low. He said take 2000 mg sublingual daily. It does help a little. At least I can get to the bathroom when I need to, instead of thinking about it.
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Tina2 - wishing good look on upcoming scans/labs. Energy level/fatigue. I am finishing week one of cycle 11, 125 mg Ibrance and 1mg Arimidex. Issues with fatigue were the worst during the first several cycles. Usually I could push through it, but sometimes I did not want to get out of bed. Fatigue not as bad now, but sometimes feel more tired or achey than I think I should. I stay active, I should be drinking more water, and I should stop having a nightly bowl of Belgian Chocolate Ice cream. It should be illegal.
elena401 - changes in Rx. I am dropping from 125mg to 100mg next cycle. The Oncologist made the comment that they are finding there is no real difference in results for most people (I hope I'm one of those). When I asked why start at a higher dose, she said insurance is a big part of that. They base their plans/rates/whats covered based on clinical trials, which was 125 mg. With time and as DRs share results, they are finding that many people do just as well on a lower dose. The other change....... My oncologist thinks I should consider surgery. The tumor is in the R-axilla, and I am very concerned that surgery poses risks to nerves, tendons, muscles, and will make the lymphedema worse. Also, the tumor shrunk from 2.5 cm Sept 2019, to 7 mm April 2020. Hoping August scan will show more shrinkage. I asked if it shrinks small enough so CT cannot find it, if PET would be used to find rogue cells. She said No. I am concerned about those rogue cells, which surgery will not catch.
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