Ibrance (Palbociclib)
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Hi ladies, I've been having a spell from thinking about cancer while I do other things. Sometimes I just want to forget about it and have a life that doesn't consist of thinking about side effects (just having them!) and what an extra little pain might mean and what my next scan will show and be somewhere else in my head.
CrazeeJane.....way back you asked two questions. I can answer both. I also quite often have a stuffy nose and sore throat but only for a day or two and I'm not sick. It's just a side effect so it could be the same for you. I have also had palliative radiation to my thoracic spine for pain and I can't say it helped at all but at the time I had it I had a large number of stress fractures in my spine and ribs so just lying on the radiation couch was painful. It's definitely worth a try though. I would try anything if there's a chance if would reduce the pain.
Pat, my dear friend, I'm so sorry to learn of your progression and I'll up my dose of prayers for you. You know you will beat this, we all do.
If you don't see me on here for a while again, don't worry because I'm doing well.
Cure-ious thanks for that great information on Ibrance/Fasiodex. Love it.
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hi,
Has anyone ever experienced blood clots with a UTI. Is the treatment the usual antibiotics and pyridium? I have had uti's in the past but none that had actual blood clots. I'm also sick to my stomach and dizzy. Anyone have similar experiences? My pet scan last month showed no advancement of disease. No organ involvement. Just those pesky bone Mets. One met with slight progression. Still on ibrance and femera.
Thank you for any and all help,
Melissa
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Snooky, no, it's not too late. I had, unbeknownst to me, metastatic cancer for at least the last 8 years, only it was undiagnosed. No one could have seen it or found it without imaging tests, and I wasn't getting any imaging tests other than mammograms because I was supposedly "no evidence of disease." (I still think young high-risk breast cancer survivors should get some kind of imaging, like MRIs maybe every two years,, but that's another topic.) Once they know what they are dealing with, there are treatment options, and it sounds like your doctor has got you started on a good regime.
I agree with others that it seems it would be a good idea to meet with a surgeon and a radiation oncologist, hopefully your medical oncologist would help set that up.
I struggle mightily with depression, and it sure hasn't gotten any better with my Stage IV diagnosis, so all I can say is I feel for you. You are not alone in this struggle.
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Snooky......sending lots of prayers your way that you stay strong and find peace with the diagnosis...In 2000 when diagnosed with bc stage I....my attitude was what can I do fix this. But when in 2016 I was diagnosed with MBC I was scared "sh......less". I have managed to hang in there for 2 1/2 yrs and have kept my sanity. Just reading everyone's comments has helped so much...I don't feel alone.0
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Pat. Sorry to hear about your progression ...sending prayers and hug. Leapfrog so good to hear you are out there. Best to all you dancers.
Still here one year later.. 2 new grand babies to hug. Dancer Alumni. 🙄 Marie
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Lissalou, I know several folks have battled UTI's on this regimen, but I've not heard of blood clots in the mix. Hopefully someone will chime in with their experience.
Maire, great to see you and congrats on new grands. Babies are the best!
Today I got one good thing from this craptastic disease. I'm heading to Yosemite in a month and remembered something Lita posted a while back. Anyone on Social Security Disability qualifies for a free Access Pass to all national parks. It is issued on the spot, and allows free admission to all national parks. Just go online for a list of places that offer them, show proof of disability (award letter), walk out with a pass, and plan some amazing getaways.
Keeping you all close in prayer today.
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Jaylea...What a wonderful trip to look forward to. I wish they would offer that pass to all those on Social Security.
Melissa...I've never had a UTI ever, but I know someone on here gets them frequently. I'm sure people will post their issues to help answer your question.
Hope
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Good afternoon ladies
Westie I have the itchy rash on my lower legs back of knees and crease of elbow. I have read on here about the itchy rash. I also bought cortisone cream it works a little while. I see my onc on Tuesday and will ask about it. The weird thing is that I just started having this SE now. I’ve been on Ibrance since June 2017.
Pat sorry to hear of your progression. Truly praying for you. You are an amazing support for us all.
Hello leapfrog glad to see you hear.
There were so many things posted here and I know if I go back I’ll lose the post. But I do remember the depression anxiety posts and we’re all into some semblance of that response or into denial bc stage 4 is a gut punch, knee knocking diagnosis.
Thanks for the post about state parks and disability. I’ll be looking into that.
Have a good day all. Scans tomorrow, yes on Saturday.
Tanya
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Good luck with your scans tomorrow Tanya!!
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Leapfrog-Thank your for your reply to both of those questions.
At my appt on Wed it was decided that they would take me off the Letrozole completely for 2 weeks and after that I will be put on a different hormone blocker due to the Letrozole just making me feel like total crap. Since I have been off of it I feel like my old self again before all of this came about and I'm very nervous about starting on a new one. I'm still on the Ibrance and it really doesn't bother me at all. I'm back on my normal rotation at work again and I just want things to continue to go this way so here's to hoping that this new med keeps me feeling good like I do now
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Crazeejane, I was taken off Ibrance for 2 weeks so I can try to get well from this pneumonia, but I am still on Letrozole. I was hoping I would feel better from my Ibrance break (my first one in 2 1/2 years) but I don't. So I agree that it is the Letrozole that makes me feel like crap all the time. It is the only one I have ever been on and since the combo is working for me, I am reluctant to change so I will look forward to your posts to see how you do. I am retired so work is not a problem for me. I am just getting tired of being tired all the time.
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Intolight- I will be sure to let you know how things go once I start on the new med and I’ll let you know what it’s called as well. I hope you start to feel better from the pneumonia!! I had that once years ago and it is no fun at all
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Got a call from my MO today. I have to stop Ibrance 125mg. Just started 2 weeks ago, had blood drawn today and my white blood cells dropped from 4.1 to 1.3. Platelets also down from 117,000 to 66,000. He's afraid that they'll continue to drop and put me into the neutropenic range. I see him 11/23 and depending on blood work I'll start 100mg. Anyone had this happen? Getting dropped down in dose due to low wbc? I'm already freaking out because my tumor marker was 182 on 9/28 and 632 on 10/26. It's never jumped likedthat.On Faslodex as well. I asked about tumor flare as I just started Faslodex on 9/28 and know it can happen at the beginning of a new treatment. I don't want to be without treatment as it makes me think the cancer will spread like wildfire.
Jill
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Justback on the board and catching up...
Pat you *are* brave. Always! And you always inspire all of us.
IntoLight just now seeing that you are struggling with pneumonia.. I’d missed that earlier. I’m sooo sorry. I do hope you are on an upswing
Crazeejane my first AI was anastrozole. I had to switch to letrolzole to keep my insurance coverage. SEs are defineitly worse with Letrozole.
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Grrfff, my Ibrance was reduced from 125 to 100 on first cycle due to low ANC and platelets. I am starting cycle 25, still on 100 mg - hope that helps.
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grriff I was dropped down to 100 about 18 months ago due to low counts. I’m doing very well with it. And yes tumor flares are very common at the beginnnig while Healing is taking place. It’s possible that’s a good sign! Don’t lose heart
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Hi Sandi! :-)
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Penny, Sandi-thank you. My MO knows me well, he called himself rather than one of his nurses. I have wicked anxiety especially lately with new meds and the tumor marker jump. Im feeling good just a bit tired. Ibrance and low wbc I’m sure. I’ll let you know how it works out. Fingers crossed
Jill
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PatG, I'm so sorry that your scans didn't give you the results we were all praying for and you're not getting the Ibrance break you were hoping for. You are definitely in my prayers! If anyone can conquer this thing, you can. You are such a great cheerleader for everyone here so now it's our turn to cheer you on and pray for you.
To everyone, since I'm not on Ibrance for now, I try to take a break once in awhile from the forums but you are always in my daily prayers.
Sending lots of love and prayers,
Faith (in the future).
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Grfff-
I've just started my 23rd cycle of Ibrance (125 mg) and Faslodex. My counts dropped, too, when I started. They've stayed low but have stabilized at the lower level. I think that the neutrophil level at which my MO gets worried regarding is at .8 (lower than my earlier MO at 1.0). I know that you were describing WBC rather than neutrophils. Good luck, my friend.
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My oncologist and the specialty pharmacist both use 1.0 as the low number for Ibrance.
Question -- I am also on Letrozole. What kind of issues do you have with it? Just curious, as I don't seem to have any problems. Then again, maybe I do and just don't realize it?
Tanya...Thinking of you as you have your scans today.
Faith...Good to see you and that you are doing so well.
Intolight...Hope each day gets better for you. You've had quite a time with pneumonia.
Hope
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Hi all. It is good to hear from my BCO friends and what is going on with all of you. I have not been on-site for a few days and I am getting caught up on the posts. I also posted on the Bone Mets Thread but copied it here to keep you all updated.
I wanted to give you an update from here. I saw my MO yesterday. I posted in the Bone Mets thread a couple of weeks ago about some concerns I had about my bone scan results. You can reread the posts for the whole story. I asked the MO about the bone scan report and my confusion. I asked " Do I have bone mets" ? She said "Yes". She said the bone scan is not as specific as a PET scan. And since I have rheumatoid arthritis also, we may never get a scan that says- "This area is mets, this area is RA". But my initial PET at diagnosis showed osseous and sclerotic lesions so she is confident in labeling me bone mets.
I also discussed pain with her. This last week I had a "flare" I guess ???? The pain was horrid. In the shoulders, elbows, hands, feet. I hurt and felt kind of sick to my stomach from the pain. I was at work and considered telling my supervisor I was going home, but stayed. My doc asked what I used for the pain and I told her Tylenol Arthritis. Which is extended release Tylenol. 1300 mg -- 2 650mg tablets. And they didn't help. She is going to prescribe Tramadol for me. She said to try it and keep her informed.
I told her I thought of myself as a strong person and I hate taking meds. She told me it is expected for me to have pain and need medical intervention. And it was ok.
I was touched by that. It validated for me that it is ok, that I am not a wimp or drug seeker. I am a cancer patient and may need pain meds.
Do any of you ever have that "Ahh Haa" moment?
I am going to pick up the script Monday and we will see.
Also, at the end of the appointment my MO said she had just diagnosed a 36 year old woman with MBC---numerous lesions in the liver and extensive bone mets. She said it was hard telling her. My MO asked me, hesitantly, if I would be willing to talk with the woman if she agreed. I immediately said Yes. I told my MO that if I can help someone else I would. She said she was glad she asked me. So, we will see what comes next, if the woman wants to talk. Some good must come from all this and if I can help another that would be good. Also I have wondered if I am the only MBC patient in our area ( town of 15,000 ). I have suspected that from some things that have been said in the onc office. I don't want someone else to go through this, but now I don't feel so alone. Does that make sense???
Good to hear from you all.
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Griff, does your MO have many patients on Ibrance? Usually it’s neutrophils that are the basis for changing dosage. Many people do well in the lower dose but a change after only 2 weeks due to WBC counts only seems confusing to me
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I concur with what others said. Neutrophils count is usually deemed too low when it goes under the 1.0 level. My wife has this happened once so far and she just took an extra week off before starting her new cycle. The protocol is to get blood tests done every two weeks for the first two cycles to check how you respond to it but havent heard of a dosage switch that soon.
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hi everybody, just joining this thread as I have been switched to the Zoladex, AI, ibrance combination. Just here to follow along and hear everybody else's stories.
I'm always a little nervous when I start a new medication regimen. Also a little nervous because I only did 3 months of chemo after we found my liver and bone metastasis. My pet scan after 3 months showed that all my bone mets were sclerotic which is good. And that my liver was "markedly smaller" and I only have one large tumor that still lighting up on the pet scan. My original tumor was 22 cm!
So I guess I'm scared that they're switching me over to a combination that won't kill/shrink the cancer. I don't know why I'm scared to go off the chemo but I am, even after hearing so many success stories. Overall, how do you guys handle the treatment? I've seen hot flashes and headaches and fatigue as the 3 main side effects that people seem to get.
Any advice is welcome!
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Candy-678: Didn't know there was a bone mets thread. Could you give me a link?
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Grff- Pfizer's protocol is to do a blood test at 2 weeks for the first two cycles of Ibrance- supposedly trough levels. If the ANC is too low to stop the medication and when your blood recovers to lower the dose ( if your ANC was super low) and try the lower dose. The ANC is made up of WBC count times neutrophil count. 1.0 is commonly use as the cut off point at least initially- my MO now uses .9 and JoynerL says her MO uses .8 as the cut off to start the next cycle. On my first cycle of 125 at the two week lab mine was very low- the medication was stopped- it took me 3 weeks to recover and I was restarted at 100 mg and have been on that dose ever since. I often have to take a 2 week break to get to .9. The lower dose is supposed to be just as effective. Many people are on 75 mg.
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grifff
I thought it was the ANC - the absolute Neutrophil count - that is most closely monitored. Do you know what your neutrophil count was?
I'm only on Cycle 2 now, but on Cycle 1, my ANC went down to 800 at Day 15, and then was 600 at Day 22 and Day 28. Those numbers are Grade Three Neutropenia. I had to take a two week break, instead of the normal one week break, from the Ibrance until my counts rose. On Day 1 of this cycle I started with an ANC of 1900.
I'm still on 125 mg for now, but my onc has talked about lowering it. In the literature from Pfizer it says "Consider dose reduction in cases of prolonged (>1 week) recovery from Grade 3 neutropenia or recurrent Grade 3 neutropenia on Day 1 of subsequent cycles."
Or any incidence of Grade 4 Neutropenia (ANC<500/mmm) withhold Ibrance until recovery to Grade 2. Resume at next lower dose.
When I first had chemo decades ago my ANC went down to 200 on Cycle 1 and 600 on Cycle 2; after that it normalized. So, I believe or hope that the body adjusts to these strong medications. I hope your counts improve.
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thanks to all for the info, the Pharm. has already delivered my Ibrance & Femara . .. I don’t see the MO until 11/29 - but the boards are certainly helping me get all my questions down for then, thanks.
The radiation treatments have not been kind, I am no longer able to ‘twist’/‘turn’ to stand up . . . Hope the RO can help with that on monday
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Hi, it's Snooky again.....
I was totally overwhelmed by the love and concern shown to me by IntoLight, Patgmc,, Amici, and Airlinigal.
I've been wanting to reply but I don't know what to say. Then I thought just tell you that-- "I don't know how to thank you for your words". The odd thing, they were more than just words, I could feel the emotions and concern behind them across this distance. I read and I reread what you wrote to me. And, ladies, Praise God, your words broke through the mist of confusion. Pat, your are absolutely right, my Jesus is just as strong now as he was months ago. He's right here waiting for me to catch up with Him. Thank You.
Things came down on me so fast that perhaps, I just needed a few days of brain dead! So, I could just eat/sleep and heal physically so I'd be better able to attack the emotional aspects of all these tests. I see my Nurse Prac. this Mon. for my Ful. injections and the new one Xgeva. And then I start my second cycle of Ibrance. I'll will make sure she knows that I'm now willing to submit to anything they think will work.
And, just so none of you think that I received inferior care at the beginning of this journey, surgery was offered. In fact, I would have been out of the surgeons office and into the hos. before I could say Amen. (I had a tumor in one breast and she said we'd just take them both so your OCD will not bother you. I totally felt like a piece of meat to her) The vibes I felt were so bad, I said no. I need time. Then I meet my Onc for the first time. I asked if sugery had to be quick-quick or did I have room to work on my emotions. She said there was time. She said chemo... I said no she said Hormone . Aridemix. for 6 months, and I said yes. Six months check up I showed no progression. Six months later is when all hell broke lose. But that's in the past. I cannot second guess myself, or my Jesus. I totally agree with you Pat. Jesus knows when my time on this planet is up. And there is NOTHING that I can do to change that. So, once again I'm holding tightly to his hand and following wherever he leads.
Thank You for being here for me. You ladies really really make a difference. I'm blessed to have found this sight. Sue
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