Ibrance (Palbociclib)
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DivineMrsM, I'm so glad you quickly discovered what caused your problem. I had FAC chemo in 1994. Zofran was fairly new and a friend in Canada told me about it. I mentioned it to the oncologist and he said how terribly expensive it was ($40 a pill) and that the Compazine he was prescribing worked just as well. Ha! I've never stayed that nauseated in my life....not before and not since. I remember lying in my bathroom floor hallucinating and I stayed in a deep psychological hole during the week I took it. I'm sure I took too much because I was desperate to stop throwing up. I would have paid $40 a thousand times over for it to stop! Before the next treatment I called my health insurance company and Zofran was 100% covered. The second treatment was miraculously better.
I'm so glad you figured out the culprit more quickly! And I'm thankful Zofran is generic and available to everybody.
Love from PatGmc
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PatG thank you for those beautiful words in response to my post yesterday. I must tell you again that it was many of your posts of hope and optimism that helped me get through my darkest days.
Airlinegal thank you too for being there :-)
Those if you with children at home — do read what I posted above and take heart.
Spookiesmom my hair did not thin initially when my companion drug to the Ibrance was anastrzole. After I was switched to Letrozole my hair did start to thin. There was slow but steady loss for three or four months and then it stopped. My hair has mostly recovered and the thinning is now barely noticable. As was said above there are many different possible side effects and the way they manifest is different for everyone. Sometimes they are very minor. Try to take it one day at a time.
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Lots going on Ladies and newbies joining us, sadly but also happily. You will hopefully find this thread inspiring and reassuring, as I do, with the support of these fine women.
Had a thing over the years re branded and generic drugs. My feeling is older drug generics are fine...it’s the new ones which may cause issues.
Hair wise on Ibrance -doing ok after 9 cycles, tiny bit of thinning. Main issue is my nails slowly ridging and cracking.... had same issue on original chemo. Minor in the grand scheme, but upsetting all the same! Lots of moisturising
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Pt, whoa, interesting story about your experience with Compazine! I read that its an antipsychotic medicine tho also used for nausea and vomiting. It really did a number on both of us! I will keep the zofran in mind should I need something for nausea in the future.
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New foundation that has BC co-pay assistance funds right now:
HealthWell Foundation This link is for Medicare people.
Healthwell Foundation general This link is more general. They have something called Premium for other insurance.
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Another foundation with BC funds right now:
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Is anybody on here familiar with Careoncology? They use repurposed drugs that are being researched for their effects on cancer.
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Step by step we'll get to the cure, friends. This makes me do a little dance.
Note that the next trial will include people with breast cancer and that the researcher who tried to take the wind out of their sails has his own trial going. If 3 out of 11 respond to his, he'll be jumping for joy.
https://www.cnbc.com/2019/04/08/cancer-vaccine-sho...
Love from PatGMc
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Jaycee~ Thank you for posting the Assistance Fund info. I applied and was accepted. Not sure what that all means yet but I’ll call and find out tomorrow. I appreciate you always researching and keeping abreast (no pun intended) of the economic assistance that is available. Bless you!! 🤗
Suzy
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It warms my heart to come here and see God at work as you, Jaycee, help Stllivin.
May I ask you all to pray for my friend, Melissa, whose husband Sid Burgess disappeared while on a hike in Alabama Saturday? His car has been found but there is no sign of him. His story is at www.al.com if you want to keep up with him. Thank you.
Love from PatGMc
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Suzy, that's why I do it. When someone gets help, it's all worth it. Keep me posted.
If you had a problem finding Pat's story (I did), here is a link that goes right to it.
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Jaycee...Thanking you for all your research about funding. I'm fortunate that my specialty pharmacy does all the work for me, but I know many are new at this and really appreciate your help.
PatGMc....I am so very sorry about the disappearance of your friend's husband. Prayers are a given!!! These kind of happenings are so very disturbing.
Hope
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Hi ladies,
After two cycles of ibrance and feeling pretty darn good, my doctor said to hold for a week, my counts are too low, and then to recheck. I am on 125mg. Anyone else have to hold? I am kinda wondering why they didn't just put me on a lower dose.
Love to all fellow warriors.
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Diane, LOTS of us have had to hold off a week or even two, sometimes for several cycles. Sometimes it takes a few cycles for things to stabilize. If they don't in a few cycles, then maybe your MO will consider a dose reduction. Your MO may not be lowering your dose right away because you don't have any other SE's. If you want to nudge your MO into a dose reduction, complain about some SE that you MIGHT be having. Been there, done that. (Darn, I was being so PC until those last two sentences.)
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Dear Momdin, I hope your bone mets pain is improving. I was diagnosed in the fall of 2018 with bone mets, and it was the pain in my chest and shortness of breath that brought me to the ER and the diagnosis. Since I've been on Ibrance, Femara, Xgeva, however, the pain slowly went away over about 3 months, and now is mostly gone, which hopefully means that the mets are healing. I have not had new bouts of severe pain, only mild symptoms of back pain periodically. I also use heat to help with that. In the fall I could not lift things, move my arms, sneeze, cough, turn over, breathe deeply, without sharp pain in my ribs and chest.
After I got stomach problems using Advil (ibuprofen), my doc's office suggested I try Aleve (naprosyn sodium) which is longer acting than ibuprofen for pain. If pain was very bad, i took tylenol as well. When I had to cough or sneeze, pressing the heel of my hand against my rib or sternum helped with the pain. Sleeping was always the hardest.
I have not yet gone to the radiation oncologist because the pain has improved so well on his own. My doc was also reluctant to recommend radiation to the sternum at this point, because he said the sternum/breast plate area is a rich source of blood/bone marrow (?) and that I needed that to help with future chemotherapy. However, I was told by him and the experts at Hopkins to get to know radiation oncologists who can help with mets pain that is not responsive - if not now, then for the future.
Side effects from the drugs I'm on have been very mild, though my hair has become very thin and fine, reminding me of my hair when I was a baby. My blood counts are a little low (wbc), but not in the zone to cut the dose. My red blood counts have gone up (MCV, MCH), but I understand these may be signs that the Ibrance is working. So far, I've been thrilled with the drug combination.
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what is the zone for wbc counts that would trigger a lower dose? I was moderately neutropenic (1, dr recommended Zarxio)on my first cycle at 125 mg. Wondering about what this might mean for me over the long haul...
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Thank you for your prayers, friends. Sid Burgess was found in the woods today and is going to be okay. Hundreds of people from several states came with their dogs and their horses and their drones to search. It feels like a miracle....
Just like when you come here with your encouragement and your research and your prayers for each other.
Miracles.
Love from PatGMc
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Amazing news Pat. I prayed for him and his family. So scared. My husbands a year younger and still thinks he can do everything.
Miracles indeed.
Tanya
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glad your friend was found
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Jennyunder the main marker looked at is ANC (absolute neutrophil count). If it falls below 1000 they generally pause for a week. If it falls below multiple times they usually reduce the dose. My dose was reduce nearly two years ago to 100mg. Studies have shown that there is no loss of efficacy a the lower dose.
Pat glad prayers were answered! :-)
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Pat so glad your friend was found! How scary! It’s amazing how easy it is to get lost and confused in the woods. I hope he’s in relatively good or great condition and is not hurt. What a relief!!
I had my monthly MO appt on Monday and received my Lupron and Xgeva shots. I went to bed last night at about 11pm and slept straight through till 1pm this afternoon 😮!! That was weird!!! It was like I couldn’t get up!! The sleep felt so delicious. I am back in my bed now and it’s so nice to have the windows open and there’s a lovely spring breeze coming in
I have a little teeny cold or maybe it’s allergies? Slight cough that’s annoying. My MO and I discussed my thumb issues and I’m taking a two week break from the letrozole to see if that helps at all. Also to see if it helps with some of my GI distress that I’ve been experiencing and have been writing about on this thread. Of course my MO was not familiar with the idea that the brand of letrozole could be the culprit, but he wasn’t opposed to the possibility either.
We also discussed the possibility of my having a 2-3 month “drug holiday” where my body gets a break from the meds...I’m just tired. I know I am very active still but it feels like I’m wiped out so much of the time. But I still persist on because life is meant to be lived, right?? (And sometimes sleep until 1pm in the afternoon 😂!
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I slept really hard after my last Lupron, Xgeva combo, too. It’s a lot...
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Jenny it really kicks my butt!!
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Thank you all for praying for Sid Burgess. He's going to be fine!
This from his daughter a little while ago:
"Dad is doing really well. No major injuries. No broken bones. He is sore and has some painful skin rashes and abrasions. Holding him overnight to make sure his kidneys are continuing to do their job. Everyone, thanks again so much for everything. Now our family is getting some much needed REST. Bless you all."
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Diane...I've been on 125 mg. of Ibrance for 11 months. I guess I'm one of the fortunate ones (so far) that has been able to tolerate it well.
Pat G....So happy your friend has been found. Prayers work miracles.
Hope
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I dropped to 75 mg ibrance three months ago and really haven’t felt a difference in the fatigue. My blood counts are still low hovering at 1.8 - 2. So I will go back up to 100mg. I really thought there would be a great difference in my fatigue but there was not. Thanks to reading this thread I read an article that was shared in JAMA about zometa being taken quarterly as opposed to monthly and shared this with my ONC and they had just started reducing and immediately reduced mine. The info shared here is extremely important and valuable. I appreciate you all.
Thanks Pat for sharing your friends story. Beautiful ending.
Tanya
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The PAN Foundation has money in their MBC fund right now. Just opened today. It won't last more than a few days.
Tanya, my ANC hovers around 1.0-1.3. Yours look good to me.
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Day 15 taking Ibrance so had blood work done today for the first time. The onc nurse called and said my white blood cell count tanked, I think she said it was 1.9. So I’m to stop taking the Ibrance and get bloodwork in a week. She said doctor wants to lower me to 100 mg but she will let me know after next week’s bloodwork. I feel okay but I wasn’t surprised by the test results. My body has always had sensitivity to medicine.
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Jaycee, Rosie -- glad to read your posts. Recently diagnosed, getting my port installed, chemo starting....All that is real so why am I acting like this is all normal? A form of denial for sure. I was wondering if denial is mentally okay or if I should be seeing a shrink.
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