Ibrance (Palbociclib)
Comments
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yes! I have had pressure headaches in the mornings. I've also been noticing a real increase in joint/back stiffness beginning week three of Ibrance. Don't know if anyone else is getting this? My stiffness gets better during my off week.
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Hummingbird - thanks for the good advice as always. How are things going with your mom?
Artist - Keep the scanner warm for me. I'll be going in the day after you
Wishing you all the best and hope everyone else is well!0 -
Hi ladies, we all like to hear good news so I thought I'd update with some!
This past Saturday, I had a brain MRI done after my MO was concerned about me with having 3 weeks of increasing headaches. Kind of felt like the "pressure headaches" that some of you have been experiencing. Started out as just bothersome, but then after 2 weeks, I had to take something because they were getting much worse. I am not one prone to headaches at all - maybe had 10 my whole life! I was suspecting the Ibrance, but my MO wanted to check for brain mets. Well - just saw my onc and got great results, MRI was normal. YEAH!!!! I am on my week off of Ibrance now, and NO headaches. So we are just going to see what happens when I continue with it. I will be starting my 5th cycle on Friday - still at the 125mg dose. My blood counts are OK for that. Interesting that these weird headaches are being talked about here now from a few of us. Let's keep posting about this so we can compare. Maybe this is a SE of Ibrance.
Moissy, thank you so much for thinking and asking about my Mom. She needs to go for additional biopsies because although her breast biopsy shows definite breast cancer, she also had a pet/ct scan which showed many lymph nodes all over light up and there is a suspicion of lymphoma too, plus that mass on her pancreas. Her blood work doesn't show any lymphoma or pancreatic cancer, but still biopsies have to be done to rule this out. She can't go to the major cancer center I go to because it's out of network with her insurance. She is going to her local, small cancer center and everything takes much, much longer. So she won't actually begin any treatment until Dec. 3, by the time results come in. I'm so concerned about the wait, but we have no choice. At least we finally met her oncologist and she is very caring and comforting and my Mom liked her very much. Me too. And I think that's half the battle! i will be thinking of you and Artist on Thursday - Good Luck with your Scans!!!!
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that's great news Hummingbird. Myra.
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That is great news Hummingbird! Instant anxiety relief feels soooooo good. I am positive the headaches are the Ibrance. I also got the weird sinus symptoms someone else mentioned. I was never prone to either before. Your poor Mom, waiting is the worst! Not to mention being at the mercy of your insurance company. At least she got an Onc she feels good about. That is huge. I'm still a little luke warm about mine but only have a choice of 3 in my town. Might be awkward to switch. Thanks for the best wishes all and I'll be thinking of you Friday Moissy!
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Hummingbird, lymphoma can be very treatable - my mom has had it for years, and she never lost her hair or had any real side effects with the treatments she had at Mass General, either. She has been very happy with her doctors and nurses also - You are right, that is a big part of it, so I'm glad your mom found someone she's comfortable with. Hope that your headaches improve, could be you need stress relief given the stress with your mom? Will keep you both in my prayers.
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hummingbird that's great news! I just saw MO today and told her I was nervous about these pressure things I feel in my head. I didn't feel any today. She assured me I didn't need to worry about this.
She discussed my recent scan with me and said the report said I have old mets that are healed??? She said I don't understand what they are seeing. I cannot wait to get to DFCI in Jan. I had BC 18 yrs ago and this is not from then. So I have no clue what the heck this radiologist saw but if I had Mets and they healed I cured them without drugs. LMAO. On that.
I hate going but looking to Thursday RO Appt. they are planning on doing rads to the 3 mets for 10 days.
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Artist and Moissy I hope your scans are good and don't reflect the rise in liver enzymes. My blood tests for liver enzymes were normal but my scans showed liver mets. Although Ibrance/ femara wasn't the answer for me it did keep my TM from going up a lot. I was off all meds the last 3 weeks and the increase in my TMs for these 3 weeks was huge. Much more than while I took the meds!!!
Always wishing all success on whatever drugs they're given! Praying for everyone to be NED
BABS
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Thanks babs, me too! I hope your new tx is still easy to tolerate. Go find a great bagel store with tons of grains and flavors!
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Hummingbird - Glad your mom has found a doc that she likes. It's so stressful working out details with insurance companies.
Glad your MRI was normal. Yay!
Babs - I appreciate you sharing additional info on your situation. Thanks for the good wishes!
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You can add me to the list of headache sufferers. I've never been one to get headaches so I have very little tolerance for them. It's been the only serious side effect I've experienced to date. I mentioned this to my MO and she thinks they are estrogen withdraw induced migraines. She gave me a rx for neurontin. While it initially helped, last week I had another 4 day migraine while taking the neurontin. I'm sure the Ibrance has something to do with it.
hummingbird: I'm glad you had a clear scan and have found an onco that you and your mother like. You were due a little good news!
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Good morning ladies, I don't get migraines, but I do get these little short lasting headaches right after I take the femara. I thought they were related to that med. Myra.
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Hello ladies,
New to the forum today and I'm finding your comments encouraging. Diagnosed with Stage 1 ILC October 8 and Stage 4 bone METs on November 2. Yikes! Starting Femara and Ibrance next week. Really appreciate the information on side effects and see that many of you have been managing this for a number of years while leading at least somewhat normal lives.
Have these drugs caused any mood swings for you all? I'm not a crier, but this last few weeks have been hard on my practical demeanor and now puffy eyelids. Some days Prozac has appeal...a little "Don't worry, be Happy" would be a relief.
Thanks for the posts!
Iwrite
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Iwrite, if I'm reading your post right, you just found out you have stage IV bone mets two days ago. Mine was diagnosed in January 6 years after my initial diagnosis and treatment. It is no surprise that you are having mood swings. I still go through times when my emotions are raw and I can cry over anything. Other times I manage much better. I wouldn't worry about it right now. I think it is common and you need to let yourself have a good cry when you need it. I am taking Wellbutrin but have been on it for years so I'm not sure what it would be like without it. I'm in the third week of my first cycle of Ibrance. So far, the side effects have been quite tolerable. I wish you the best.
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Iwrite! Girl. I do not know how you're managing Femara without some kind of antidepressant or antianxiety meds. Since starting this regimen, I tend to get pretty edgy. I am on Zoloft, and when I see my onc's np in the next few minutes, I plan to mention this. Abilify was suggested by a friend to add to my current crazy meds.
Other side effects I've experienced: loss of taste, loss of some hair (including lashes), some diarrhea, and crazy dreams.
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Hi Babs,
Similar to you, my TM's skyrocketed after being off Ibrance/femara for over a month. Puzzling that my TM's were decreasing on Ibrance/femara, but the scans showed progression in bones, liver, etc.. so I am now on Xeloda. Please let us know how your trial is going with the new drug that is supposed to be easier to tolerate than Xeloda, sounds promising - hope you have great results! I am on the 7 day on 7 day off schedule with Xeloda, hoping I can tolerate it, will know after a few cycles hopefully.
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Welcome Iwrite. I am so sorry to hear of your recent stage IV dx, but very glad you have found this forum. It's a great place for encouragement and information.
I had the same experience in the summer of 2014, dx'd with a lower stage of bc that quickly changed to stage IV after bone mets were found, so I very much sympathize with what you are going through. Like you, I am not much of a crier, but for the first months after dx I did a LOT of crying. And yes, all of the AI drugs can cause depression/mood swings as they reduce estrogen and progesterone. I think of it as super menopause. Many of us stage IV gals take antianxiety or antidepressant meds, so a little Prozac or similar med may help you too.
Please know that this time after initial dx is really, really rough. It gets much better with time as you adjust to your "new normal". There are many ladies here on the forum that have been living with mets for 5 and more years and new drugs being developed all the time, so let yourself feel hopeful as you adjust to your dx. Life may never be the same as it was but there is still a lot of living to do.
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Thanks, ladies. Well it was very good news about my normal brain MRI, but now my tumor markers from yesterday are in and they have increased. Not that they are very high, but I would have loved to see a decline to feel more confident that the treatment is still working. I've had only one cycle (cycle 3) where the markers fell a little - after doubling before that. I'm beginning cycle 5 on Friday. Oh well - at least I got to be very excited about some good news for a day! It was nice. Anyway, such is life with mbc and I'm used to the roller coaster ride. It's a beautiful day and I won't let tumor markers ruin it for me.
lwrite, welcome! Sorry you have to be here but you have come to a place with tons of information and support. You just need time to let this all settle and sort out. You will feel much better as you go along. It's a terrible shock in the beginning. Good that you have already learned that so many of us are doing well and this Ibrance/Femara combo is pretty easy to handle. Sending a hug and wishing you a very long, successful time on this treatment.
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3Holly
I started GDC0810 on Thursday. I take 3 pills in the Am. The first few days I took them after eating a toasted dry bagel. I felt a little queasy. Since I am not a bread eater( I am a much healthier eater) the last 3 days I took the pills after my usual breakfast of berries and sliced almonds. When I get queasy I pop a tums or a cracker. All very tolerable. Now hoping for great results!!!! On Ibrance/femara my TMs kept rising and after 7 mos had progression to bones and liver.
Will keep you posted
Babs
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Babs,
Thanks for that update, and hope the queasyness subsides and that you adjust to the pills. The Xeloda pills are similarly a bit difficult to digest, but reducing the dose from 3500 to 3000 mg seems to have stopped the nausea, though i still get a burping disgusting feeling (Tums helps for me also, but onc said to wait an hour before or after the pills before popping the Tums). I am trying to make sure I eat small meals and have food in my stomach 30 min before the Xeloda. Good luck with your new treatment, hope it is a great success for you!
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Welcome IWrite, I've been dx'd for a little over 3 months and I still get a good cry in maybe once a week depending on a lot of factors. Sometimes something unexpected, happy, sad, anger producing can set me off. I may look into an anti-depressent soon. Listen to jobur and give yourself time to adjust, it does get easier (except when it's not!) LOL! I have been doing pretty OK on this combo regarding SE's but suddenly today I am feeling very breathless with pounding heart and super fatigue?? Hopefully it is just lack of exercise lately. Hope it subsides soon. Might have to go for a walk or hit the gym for some light workout. 3Holly good luck with the Xeloda pills. Let us know how that is going for you.
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artist at heart, I would talk to your onc about the breathlessness, please don't ignore it.
You are probably just exhausted from the lowered blood counts, or it could be anxiety which we all experience, but breathlessness can also be a symptom of something else, so I would definitely tell your oncologist. For example one reason could be blood clots, although I doubt you have them since it is not a common side effect of the drug (however, it is a more rare side effect, and I did get blood clots on my lung after 6 cycles of Ibrance/letrozole, and they asked me about breathlessness since it is a symptom of blood clots). When they found the blood clots on the scan, I was 1/2 way home, but they told me to come back in and said I had to immediately get blood thinner. Hopefully you are just exhausted, but I'm sure your oncologist would want to know about the breathlessness. Hope you feel better soon!
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Thanks everyone for the warm welcome!
Good to know that it's normal to be a bit flipped out in the early days. I go back to get my BRAC test results next week and start treatment and will ask about antidepressants. It's encouraging to know that it's possible to get used to this new life things and things do even out.
Have your family members found the forum for caregivers helpful?
Thanks!
Iwrite
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Iwrite, welcome to a great group of ladies! The shock of stage 4 was the hardest thing for me to handle. My onc ordered me Xanax in the beginning and it helped a lot. I describe it as constantly pushing down panic. As time went on, I did not need it. I usually take a Xanax on scan days, I am not afraid of the scan, just afraid of what it may show. I get edgy the whole week before the scan and the tears fall very easily. I just finished my 7th cycle of Ibrance/ Femara and am doing well. Last weeks scan stable. I'm now back to work full time as a nurse and my life is pretty much the same as it was...minus the doctor appointments of course
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Thanks 3Holly, I would definitely take your advice but my scans were pushed up to tomorrow as my liver enzymes were high. So no more waiting. I am glad they are coming right around the 3 month mark instead of waiting until the end of the month as previously planned. I'm feeling better this evening but know I need to get moving as well. Working full time sitting most of the day takes it toll. I am midway through my third round. Hope it's not blood clots. Did you have to stop the combo when it happened to you? Good scan news Lynnwood!
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Celeste, I am so sorry for your progression. I don't have any experience with the drug you are talking about, but I'm plenty familiar with the disappointment of another failed medicine. Liver was the worst for me. I know you will bounce back from this low.
I'm on page 85, so a little behind here. I hope you are already feeling better.
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artist, glad you are feeling better, and the scans tomorrow should confirm there are no clots. Anxiety for me can cause breathlessness sometimes, too. I stopped the combo due to my scans showing progression, not due to the blood clots. Good luck tomorrow!
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All,
Are you on Medicare? Although I'm not on Ibrance, my oncologist has said it may be my next drug, so I plugged it into my list of medications yesterday as I was online checking out Medicare Part D plans for 2016. According to the two well-rated plans I compared, I would reach the "catastrophic coverage" level within a month or so, after which my out-of-pocket monthly Rx costs would be nearly $800. Add that to my oncologist's current $410+ monthly bill after insurance, and my spouse and I will burn through our hard-won retirement savings in short order.
Am I doing something wrong on the Medicare site, leaving something out, not taking something important into consideration? Am I idiotically optimistic in assuming I'll be on an expensive oral drug as long or longer than the four-year run I've had with Faslodex?
Perhaps I shouldn't be jumping the gun like this, but I can't help it. I'm trying to plan and would welcome input.
Worried (and it's treatment day),
Tina
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All,
Are you on Medicare? Although I'm not on Ibrance, my oncologist has said it may be my next drug, so I plugged it into my list of medications yesterday as I was online checking out Medicare Part D plans for 2016. According to the two well-rated plans I compared, I would reach the "catastrophic coverage" level within a month or so, after which my out-of-pocket monthly Rx costs would be nearly $800. Add that to my oncologist's current $410+ monthly bill after insurance, and my spouse and I will burn through our hard-won retirement savings in short order.
Am I doing something wrong on the Medicare site, leaving something out, not taking something important into consideration? Am I idiotically optimistic in assuming I'll be on an expensive oral drug as long or longer than the four-year run I've had with Faslodex?
Perhaps I shouldn't be jumping the gun like this, but I can't help it. I'm trying to plan and would welcome input.
Worried (and it's treatment day),
Tina0 -
Tina, Pfizer has several plans to assist in paying this very expensive drug. You can get a copay card for the first 6 months where you only pay $5.00. I assume you would qualify on Medicare. Check it out on the Pfizer website. Good luck.
Artist, good luck today with your scans. You are in my thoughts.
Myra
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