Ibrance (Palbociclib)
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Hello! New to this thread, recently diagnosed with stage 4 IDC, mets to bone (spine, hip, rib). I am starting on Ibrance, Faslodex/Lupron, and Zoledronic acid on 12/3. I am a teacher and hope to keep teaching remotely...seems like the side effects are not super terrible? Thanks!
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Hi JenDunn, I have been in Ibrance/Fulvestrant for 1 year and have found it easy to tolerate. I also work full time and have been able to work without feeling fatigued. I did have low white blood counts at the end of a few cycles so my dose was reduced from 125 mg to 100mg which has kept my WBC a bit higher at the end of a cycle. There are women on here doing great on 75mg as well. This is a common side effect and many women on Ibrance have dose reductions. The fulvestrant shots haven't been an issue for me. I have less joint pain on fulvestrant compared to femara which I took for 7 years. Let us know if you have questions about the fulvestrant shot. I have not had Zoledronic acid so can't give you any info on that one.
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JenDunn, For me I had a lot of fatigue in the first couple of months, which eased up a lot as my body got used to it. After 4 years I did have to go down to 100mg from the 125mg, due to low white blood cell counts I was getting every cycle, but I worked the whole time and my worst problem was thinning hair. Fatigue is noticably less on the lower dose, but I also did the 5 days on, 2 days off schedule for about six months and the fatigue was much less just with that change (ie, leaving the dose high)
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Hi Jen, these medications are standard protocol for MBC, ibrance capsule better take with food 500+ calories, you will feel fatigue in first few months, here is my tip I take ibrance early evening to avoid fatigue lower my daily activities! I also went for lower dose. Zolederic acid or zometa is given through iv, also good if you get infusion over 30 minutes, it helps to reduce side effects such as bone pain. ask your MO for calcium and vitamin D supplements. You may want to read this: https://www.breastcancer.org/treatment/druglist/zometa
Ladies here are so nice and supportive, you will find many good information here.
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Thank you I-beat-it, Cure-ious, and April! Not happy to be part of this club but glad to have a plan in place. Have a great Thanksgiving!
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Jen, welcome...you will find your own way and the people here are very knowledgeable as well as supportive - you might want to check out this thread too, if you haven’t already. It’s called “Life does not end with a stage IV diagnosis”. It’s aimed at inserting a little normality.
https://community.breastcancer.org/forum/8/topics/818931?page=111#idx_3312
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I've been reading this thread on and off since I was diagnosed stage IV in January of this year but wanted to jump in and say hi to everyone and ask a question. I'd completed 2 rounds of Ibrance when I was diagnosed with pneumonia. I stopped Ibrance while I went on antibiotics which seemed to clear up the pneumonia but MO was still concerned so I had a bronchascapy? last week which does show a small amount of inflammation still but no infection or cancer cells in that lung (I have mets in the other lung). I've just been informed by MOs office that they don't want me to continue with Ibrance. That was a major gut punch for me since I got thru I don't even know how many rounds of Taxol and Taxotere this year with the idea that eventually I'd switch to Ibrance and life would go back to "normal" at least to some degree! Now I feel like the rug has been pulled out from under me! Has anyone else had pneumonia and then continued with Ibrance? I haven't met with MO yet to see what she's suggesting I do instead of Ibrance.
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JennDunn - fatigue was the SE that I noticed, but usually I was able to continue activities I wanted to. Staying active, hydrated, and stretching keep me going. I started at 125mg, and a couple of cycles ago, was dropped to 100 because of low WBC, and because the oncologist said that studies have shown the 100mg is just as effective. After 2 cycles 100mg, WB did not rebound as she expected, and she talked about dropping to 75mg. She might be concerned about covid, because the low WBC has been low for a long time. I am still on cycle 15 and already got the cycle 16 box of 100mg. At the cost, it might be another cycle before I could go to a lower dose. Also expecting to get scheduled for a CT soon and want to know what it shows
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Isharvey822- At first when I read your post I thought "why not resume Ibrance after the pneumonia cleared up". But then I thought about how Ibrance, and all the CDK 4/6 inhibitors, can cause pneumonitis. So maybe in your case, your doc is seeing something in the bronchoscopy and thinks Ibrance can cause you more harm than good. See what your MO has to say for their reasoning and what they recommend next for you. Post back with your results. When do you see your MO?
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Candy-678 - I'm hoping tomorrow.
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Hello ladies, just a brief check in, I'm still in the middle of scanxiety. Just had my CT this afternoon. Good news is I got ahold of my bone scan report. MO was refusing to mail or update to portal either scan and that we would "discuss them at my dec 3 appointment" was the message relayed to me by her nurse. Really ticked me off because I rarely bother my MO. So instead of arguing I just asserted my rights and went to medical records after my CT and got a copy myself of my bone scan report. While there I signed a release for my CT to be mailed to me as well. I may be a sourpuss sometimes when it comes to this disease, especially when talking about it generally, because let's be honest it sucks, but I'm a grown woman, I can handle reading a medical report and digesting it. How can one ask questions unless you see the report before the appointment? Oh well, I'm ranting.
Anywho, bone scan came back stable. Unchanged uptake in all noted areas. Now I need to wait for the CT to come back, that's the one I am most concerned about.
Welcome newbies
Jenn etc. I'm scheduled for Zometa too on Dec 3rd. Zometa can make you achy your first time or two for the first few days after the infusion. After the 3rd time or so it felt like my body adjusted to it and I've found now it milder in terms of the aches after an infusion. As far as Ibrance, I had a terrible build up and anticipation of how Ibrance would feel based of the concoctions I had previously but I have found Ibrance overall very tolerable. I start lucky cycle 13 soon. 3rd cycle at 100mg, the others were at 125mg and I asked to reduce myself due to fatigue. So have a go at 125, if you need to drop no worries, Ibrance is a very tolerable drug and effective even at lowest dose.
Welcome to the thread, you are not alone
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Rabbit,
Good for you for getting your report and signing the release for the second one. I do not understand this paternalistic attitude among some medical professionals that we need to wait for them before we can see our reports. That does not make for a productive visit with a doctor, especially if they are pulling up a report on a computer that we cannot see and haven't read.
I switched to 100 mg of Ibrance this cycle. I know that at one point, you said it took a cycle or two to feel better, but I am already feeling a difference. Of course, I'm not yet through a full cycle, so we'll see how it gets as the cycle continues, but this seems much better than the 125mg.
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Miss Rabbit..great news about the bone scan!
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BevJen, I don't get it either and I totally agree. Plus, I'd rather breakdown if i need to alone whether it be of happiness or sadness instead of in front of my MO. I kinda feel like reading my reports is a sacred time in a way, not that the reports themselves are sacred, but my time to privately react to them. I like to digest things privately and celebrate, scream, kick, cry or breakdance in my own way. I find that is easier without a pair of eyes watching me with a clipboard.
Yes yes yes to 100mg feeling better than 125mg. This 3rd cycle is where I've noticed the biggest difference tho I noticed very happy improvements by cycle 2 at 100mg.. And I am rebounding now at the end of my cycles a bit better than I did towards the end of me on 125mg so i'm getting back my energy a bit. Mouthsores are MUCH better this go around, very slight on the tongue when I used to have lots of little ones. I like 100mg. Woo!
Thank you Jackie!
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Glad to hear this, Rabbit. I'm halfway through my second cycle of 100 after having 4 cycles of 125. I'm looking forward to the fatigue abating a bit. Lately, I've been noticing blood in the tissue after blow my nose. No bloody noses, though. I also seem to have more trouble "catching my breath", - like when you're trying to yawn, but can't get enough air in. I have a pulse oximeter, and my O2 sats are fine. It's just weird and a little annoying. My next appointment with my MO is December 2nd and my next scans are at the end of December.
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Hi Ladies
Well dh tested positive for covid. DD and I will go tomorrow to be tested. I'm still in limbo waiting to start treatment, so this is probably gonna really throw things off. I'm not having any symptoms at this point.
Any clue how this might affect things?
Honestly this has me feeling quite defeated. We will be spending Thanksgiving alone thanks to this crap. We really needed to be around family too.
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tangandchris - I'm sorry that you have this additional stress. Let your MO know. Your treatment will likely be delayed. For Thanksgiving you could do it virtually. I know it's not the same. Hope your tests are negative and your DH is OK.
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Sunshine, I had the blood in the tissue happen too, when I was on 125 mg. It wasn't all the time but it was kind of unpleasant, obviously. I hope it goes away or at least lessens for you.
Tangandchris, Sorry about the positive test for DH. Please let us know how you're doing, hope you can be lucky and not get it. Maybe Thanksgiving can still happen when things settle down for you or as Serenity said, on zoom? In my area we just got an advisory (not a mandate) to stay home except for essential outings like jobs and medical appointments. Some will do it, others won't. DH and I are concerned and will not be out if we don't have to be. Best wishes to you.
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Way to go RRabbit. Yes, I feel the same way about scan reports. With my new MO, we do the scan the same day as the office visit-- couple hour wait between for rad to read scan. So my MO discusses results with me before I have had a chance to prepare. I do not like this, but that is the way it is. I travel to get to my new MO. But at old MO I would sign for a copy of the results, just as you did, so I could be prepared. It is a sacred time.
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Sunshine - occssionally I had traces of blood after blowing my nose when first starting Ibrance. I got a humidifier since it tends to be rather dry around here. I think it helped. But one problem is the hard water here and flim it left . Also it never got to the humidity promised. Maybe room larger than I thought. I got one with a "chimney". If you do not plan on moving it from room to room, that style is fine, otherwise I do not recommend, I like to move between upstairs bedroom and downstairs living room. Getting dry again with the heat on, maybe time to get it going again
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When we lived up north, we had a humidifier put on the forced air furnace. Really helped.
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Bloody tissues here too.
I've also been noticing drier skin around my nails and cuticles to the point of peeling. I bought some Beekman 1802 Goat Milk Hand Cream and it has helped a lot.
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Rabbit, same here it is so annoying, once I asked why I can’t have reports before seeing onc, they replied because we don’t want our patients get panicked!!!! My answer: What is more than stage 4, a couple more tumors don’t scare me more, huh?!!
I am struggling to understand “Baseline hepatic activity” and “Baseline mediastinal blood pool activity” in pet scan, I couldn’t find good information from dr Google! I appreciate it if you can explain them, any information would be helpful.
I hope everyone is doing well.
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Saw the MO today and it looks like she's switching me to Xeloda. In small part because of concern that it could have contributed to my pneumonia but apparently they are also concerned that it may not be working for me. Apparently one of my lung lesions looks larger.
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Cross post----
Was thinking today, about the Covid vaccine.
Have any of you mention the vaccine to your MO? Should we get it while on Ibrance?
I messaged my MO nurse today. She said they have not discussed it yet.
Just wondering. Hopefully it will be available to the high risk people in the next few months.
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Candy - they are gearing up here and I would be in line from mid-January, so I imagine my MO may mention it at my early December appt. I can at least ask if they have considered what is going on for cancer patients and how this stuff works with the cocktail of drugs we are all on. I mean cripes, I had a reaction of Zoladex + flu shot, so a little nervous.
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Rabbit congrats on stable scans!
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I beat it - totally agree
Tanya - stable bones sound good to me. CT isn't back yet so still waiting and I need to wait to receive it in the mail. I hate hate hate the wating
Candy - concerning the vaccine. MO offered flu shot so far. I declined. Will be declining covid vaccine if offered. Uninterested in it.
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Candy,
I didn't get picked but I volunteered to be in a clinical trial for the Covid vaccine. I ran it by my MO first and she had no problem with me volunteering. I plan to get the Covid vaccine as soon as I am allowed-I don't want the one that has the live virus (J&J) but I would take the Pfizer or Moderna one. I'd prefer Pfizer because I have a lot of confidence in them after my experience with Ibrance! There's risk with anything but this is a risk I am willing to take.
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I got flu shot late September, no problem. I will get the covid shot, eventually. It’s just too new, don’t think they’ve figured out what’s best. Don’t see my pcp stocking all 3 either
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