Ibrance (Palbociclib)
Comments
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good morning lovely people!
I am curious to see if anyone else sleeps more than ever these days? I seem to not be able to wake up unless I have had at least 10 hours of sleep!
This morning I set my alarm for 8:30am so I could get up and start the day at a normal hour but, just like many other mornings, I turned off my alarm, rolled over and started snoozing again till 10am.
Happy 4th of July everyone, however you may or may not be celebrating
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Hi Philly, I feel my best now with 10 hours of sleep. I don't always get it of course but that is what my body likes best now. Happy Independence Day!
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Hi Joyner,
It is a triple combo- Faslodex, Affinitor and a HER2,3 inhibitor (Neratinib) and they found it works for ER-positive cancers. The Neratinib will be familiar to some with HER2-positive cancer, because it is used for that as well, however in this new story they found that resistance to affinitor was often accompanied by turning on HER2 or HER3, if not as high as in over-expressing HER2 cancers...
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Jaylea- thanks and we found out after I met with him monday he (his attorney) be on as co chair if we get him a new trial and its sound like they are just going to send him to prison and I have been pissed off and crying since last night. Oooh.
Lauren- Mine just keeps getting bad mine never subsided.
So saw my oncologist's nurse practitioner and she went over every concern and instead of keeping me on gabapentin she decided cymbalta not lyrica. She also made sure it was not going to cause problems with any other meds. Did my Zometa infusion and it is kicking my butt hard today and yesterday. Ugh my joints feel like concrete. Super tired. I was a little over the low line but they said onto round 10 of ibrance for me. Said glad the nausea meds are working. I hope everyone had a wonderful fourth. My dad made a pork shoulder and his fiancee made deviled eggs and potato salad. Was quite good. Oh gosh you ladies make sure to carry a magnifying glass at all times.
I joked with my mom having candy (hard candy) in her purse and jokes on me cause I gotta do it now for the dry mouth yay! The joys of ibrance. Also baking soda or salt water rinses ugh. I did ask about taking cranberry pills for signs of uti's/bladder infections she said it should be okay says its another se of the ibrance. I have my bone scan in three weeks and then I get to break it to my oncologist that I need a referral out next month. Hoping to meet my new oncologist in sept. Talk soon.
Chani
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Hi @Chicagoan! Thanks for responding
Yes 10 hours seems like the magic number!
I am so grateful that on most days my work/life schedule allows me to get this much.
Once again today, I am still in bed and it’s 10:15am...working my way towards the coffee maker! 😂0 -
Hi All - I posted some time ago about Shortness of Breath. I "assumed" it was from the Ibrance, since I had just started (I was on cycle 14). Also my low WBC's, and the fact that I also have anemia. Well, it got so bad when laying down that my heart just raced and raced. It was a major chore just to roll over from one side to the other. Going to the bathroom was out of the question. It seemed like it took forever to get my heart to calm down. Needless to say couldn't sleep very well. The recliner chair was the only way I could relax & sleep. Walking 10 feet without getting breathless was so very hard to do. Had to have blood work done and mentioned that I had very severe SOB. ONC listened to heart and heard a murmer. He set me up with and Echocardiogram. The Echocardiogram showed mild to severe mitral regurgitation. Leaking valves. I saw a cardiologist that day and he agreed with the Echocardiagram. I also had a TEE test done. (TRansesophageal Echocardiogram. However, he wanted to do further testing like a cardiac cath to make sure there aren't any further problems like blockages. When taking my medical history the cardiologist was very interested in my prior chemo treatments. I told him I had had Adrimyican - (doxorubicin) cytoxan, taxotere and well as 27 radiation treatments on the left side. Very toxic stuff he said!! Right now I'm on a beta blocker and water pills
I'm still taking Ibrance and Faslodex. Now I'm worried about my WBC's . What if I develop an infection. Alot of "what-ifs" going thru my mind. Has anyone else had leaky heart valves that required surgery? Both my Cardiologist and Oncologist are consulting on Monday. Again, the waiting game. In the meantime - I can't hardly get around and get out. I'm borrowing a wheel chair, so at least I can get out in the oppressive heat if I want-not. Please keep me in your prayers.
crissy
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crissy;
I too had my original bc on the left side and AC/Taxol and radiation followed by treatment for ovarian cancer of carboplatin/taxol (again). I remember my md telling me that they would know in about 10 years what damage my heart had suffered from my original chemo and radiation. It's always been a concern. I am so sorry you're going through this. My RDW is 19.2 which I think suggests anemia and I have started taking wild salmon and fish oil capsules and eating red meat to try to counter this. Apparently infections are not such a big problem on Ibrance so here's hoping no infections. Take care.
Cathy
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Oh, Chrissy....good luck with the consultation and with whatever treatments your docs sort out for you. Saying prayers for best possible outcome.
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Joyner, I just had to say, what a funny post ! hahahah, you and lip liner on lids and being blond et all
Thanks for the laughs 
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I have a question for long time Ibrance users. Do you experience shortness of breath and increased heart rate with exertion,ie, going up stairs, exercising, doing laundry, etc?
My MO said I was not anemic and my pulmonary tests (chest xray, VQ and pulmonary function tests) plus echocardiogram are normal.
Any thoughts? Maybe my red blood cells are NOT working that great, even with a hemoglobin of about 10.
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SandiBeach, yes, I struggle going up stairs more than one flight, can't exercise (other than short walks), and I can do laundry as long as I rest between loads, but mostly because of fatigue and not shortness of breath. I do have increased heart rate though and shortness of breath when I push myself too hard. I have been on 125mg of Ibrance for 2 years now and my MO does not want to lower my dose as long as I can still tolerate it.
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Thanks IntoLIght - it is all a mystery sometimes - symptoms and what causes them.
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Sandi- I have been on the 125 for three years now, with some minor hit to energy and stamina. Not wanting to lower the dose, I've been trying the five days on and two days off, which I think feels better (or anyway I feel good). Not sure yet what/if the changed regimen is doing to ANC numbers
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Throughout 11 cycles at 125mg I've had bouts of SOB, mainly first out of bed and then after exertion, especially involving inclines and stairs. This last cycle I had the addition of pounding heartrate. So (sort of) glad to hear others experiencing it, but after reading Chrissy's post will be mindful of this. I had similar treatment and didn't realize how taxing it could be on the heart.
Chrissy, thanks for your update, I'll be praying for you and your medical team to get just the right solution.
Philly, I can't get more than 8 hours sleep at night but if I lay back to watch tv for any amount of time I end up asleep for 5 or 10 minutes!
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Hi all - had my pet scan today and surprisingly, I got results just before closing time at 5 today. I haven't read the report yet but after 5 months of Ibrance and radiation to my single rib met, I have no new cancer and the rib appears to be healing bone Not consistent with active cancer so i am elated!
Chrissy - I amso sorry to hear about your heart troubles. I had the same tx as you 15 years ago. Please know I am thinking of you and keep us posted on your next steps.
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Lauren, I am doing the Happy Ibrance dance with you tonight! Yay! Hoping for more of this great news...
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thanks into light! I know it is still early days for me but I will take it!
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GREAT NEWS, Lauren!! WHOOPEE!!
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This sounds really interesting! Exciting things seem to be happening every day. They just need to hurry up!
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Lakewoman: About 2 years. I am at 17 months now, no sign of disease progression. But looking for trials and secondline treatments, so recommendations needed!
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Chani...I take Cymbalta (30 mg), along with 300 mg. of Gabapentin in the morning. And 300 mg. of Gabapentin at 4:00 pm. and 10:00 pm. I have severe neuropathy in my feet -- side effect from 15 round of Taxol, prior to going back to Ibrance/Letrozole. My pharmacist said Cymbalta and Gabapentin are a good combination, but it does take time. My onco and I discussed Lyrica, but he's seen too many bad side effects, so he didn't recommend it.
Hope
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I have been on ibrance just over thre years. Started at 125, lowered to 100 after about six months, then went down to 75 after three years. Did have abnormal shortness of breath with inclines- steps, stairs - but that seems to be much improved on the 75mg. I have much more stamina now,
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I posted this in another forum-just wanted new Ibrance users not to give up too soon.
It took about 8 months on I/L to get a stable baseline Ca15.3 (40s). My CT and bones scans showed NEAD at 10 months. So it is a slow process. My MO goes by how I feel, quarterly scans and monthly labs and Ca 15.3.
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CONGRATULATIONS LAUREN!!! May you be NED for many years!
I will go for my first PET in August or September my doctor said. My CT scan back in May showed improvement. My doctor also goes by how I'm feeling. In two weeks I will start my 6th round of ibrance.
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Hooray, Lauren! I'm so happy about your good results!
To all of you anticipating scans this month, may you find peace.
I'm so thankful to have gone through a few weeks of nausea and come out the other side. I did my first 3 weeks on, 2 weeks off 75mg Ibrance regimen and had more nausea than ever the first 2 weeks of this second cycle. I was bummed but I woke up 3 or 4 days ago and it was gone, as was the heartburn. I can't explain it but I'll take it! Thank you, God! I told my nurse I thought they may have put some placebos in the bottle. Whatever! It's great to feel good. I even went to the movies yesterday to see "Won't You Be My Neighbor" about Mr. Rogers' life. I highly recommend it in the midst of all our political misery in the USA.
I'm making art for the August LRoss Gallery Elvis Show now. I'll put up a link when the show gets hung. Much fun!
Love from PatG
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Fantastic news, Lauren!!!
Joyner, thanks for more very interesting research news- what's great about this too is that the trial was on breast cancer!! Usually CAR-T they are doing blood cancers, and a few basket trials with a mix of solid tumor types, but yeah, how about MBC?! And the results were great, but its early days, they need a corporate sponsor, but the study itself was funded by Bezos foundation, it won't struggle along for lack of interest or funding!!!
We all just need to get on some working therapy until this stuff hits..
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Thanks for all the well wishes - I’m pretty excited about my scan results. At least for the moment!
Joyner - thanks for posting that article and Cure-ious thanks for confirming that it is indeed something to be excited about!!!
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Hi Pat! I am glad your nausea and heartburn are gone too! I shared a similar experience where I felt both those SEs the first couple rounds of Ibrance but then it calmed down (as did my anxiety - I am sure there’s a correlation there!). I get occasionally both symptoms now and take a companzine (sp?) if it seems really out of control. But for the most part, I hardly notice the Ibrance anymore. I think more of the nausea may be from the AI or the Lupron injection? Hard to say!0
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Pat G and Lovefrom Philly - I don’t get the nausea but the heartburn is awful. i started nexium early on and it is completely gone. However, I have had a day or two when I forgot the take the nexium Andre the heartburn was back full stop.
Pat - I can’t wait to see the Mr Rodgers movie - I am from Pittsburgh so it is extra special for me since he was a Pittsburgher. I would love to see your art
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Lauren, you are going to love the movie! Take lots of tissues with you. It's just at one theater in Memphis but I'd think it would be showing all over Pittsburg. My daughter and granddaughter have already seen it twice.
Nexium is not a good drug for me but I've found that Pepcid AC helps if I take it an hour before my evening meal. Tums right before bedtime helps too. This reprieve has been so lovely and so unexpected on Week 3 but I'll take it! My nausea is not a constant thing but it does keep me close to home as it's fairly unpredictable. Sorry for the WTMI but I get this brown phlegm and after I vomit I feel remarkably better and can even eat a meal immediately following....Oh, the weirdness of Ibrance!
I'll post a link to the Elvis show once it's on the gallery website. If you're on Facebook, I'm at Artist Pat Godfrey McRee. Thanks!
Love from PatG
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