Ibrance (Palbociclib)
Comments
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I am re-posting from another thread, where we are discussing some speculation that those that convert from ER-positive to ER-negative become highly sensitive to immunotherapy:
Hi JFL- Oh, I didn't realize that Judy Perkins was also a "converter"! Well, dang, that's a bit of a bummer, because obviously that is rare, so maybe it explains why they haven't had lots of women replicate her success using CAR-T.
The numbers I saw were that those going from ER-positive to ER-negative had a 50% success rate with immunotherapy- if that number holds among large groups it is a big number, I think that is maybe higher than lung cancer, at least its on the same order.
For comparison, ER-negatives are about 15%, ER-positive are 5-6% responders.
Good news is knowing this, researchers are for sure sciencing the crap out of these cells to try to figure out what pathways got turned up, why are these cells special, etc? Are there drugs we can give ER-positive or ER-negative cells to make them respond to immunmotherapy the same way converters do?
For Bigelow, I gravitated to her blog as she was diagnosed just a few months before I was, so I was following along closely- then the story took all those twists and turns and I had to steel myself sometimes before checking in, not knowing if the outcome would be OK but somehow always felt sure she would do OK, must be her style of writing, her confidence.
She moved into a trial with some kind of immunotherapy-chemotherapy combo, had a severe immune reaction and nearly died, but coming out of it the cancer was all gone. Cancer cells grow faster than normal ones and take over like weeds, however they are more fragile to stress than normal cells, so her fevers and hyper-stimulated immune system took care of them all. All the details are here
And here is an interview:
https://www.cancernetwork.com/article/barbara-bige...0 -
Has anyone heard from husband11? The last time he posted was on the 8th and that was here. Thinking of you guys.
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Thanks Curious-good to know about this option and always good to read about those Stage 4 people who become "cancer-free." Hope that will be all of us soon!
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I have good news. My wife is now at home with me. She is on the mend. Her blood red blood count is remaining stable, so the bleeding has stopped. She has pain in her side, its likely related to the ulcers. Her days in the ICU unit were very traumatizing. People screaming and moaning 24 hours a day, constant activity. A patient in very sad condition right next to her. Huge thanks to all those who work in that area. They are a tough bunch indeed. And a huge thanks to all of you, for your prayers and kind words of support. Love you all!
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Congrats, Husband!!!
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Great news, Husband. Glad that she is back home and doing okay.
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Husband, I’m so glad she’s back home! Here’s to peaceful healing.
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Husband 👍🏽
Cureious thanks for the info. I had read about another stage 4 MBC who got measles and the high fever etc almost killed her but cured the cancer.
Tany
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Husband11, please tell Wife11 we are celebrating her return home! (We never stopped dancing with her.)
Love from PatGMc
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Husband. Great news, glad to hear she is back home.
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Husband- So glad to hear she is on the mend. Hugs.
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Husband, so happy your wife is back home. Yay!
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Husband, so happy to hear that your wife is home and doing better!
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Husband11 - glad to hear your wife is back home and on the mend. Sending her wellness thoughts and wishing she continues to get better.
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Husband , so happy for the good news ! Blessings on you both!
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Husband, glad she home (home sweet home!) and hope that she continues to feel better and better each day
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Husband: So glad to hear good news for your wife!
Just wondering if anyone on here on Ibrance has dealt with with having HER2+ MBC as,well. I'm wondering if it would affect my eligibility for any trials.
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Husband...it's so great to hear your wife is on the mend! Give her a hug from all of us. 🤗
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Whew, husband11. Thanks for the update.
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And there's NO PLACE like home!!!
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Is anyone else besides me finding the smell and the taste of the new pills awful?
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Jack5ie- I am on the second 7 day pack of the new tablets. I haven’t noticed a smell or taste.
I take my tablet with dinner along with Letrozole and blood pressure med (each swallowed individually)
Do you taste the tablet when swallowing? Or does the tablet change your taste over all?
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DG - I saw in your 2017... thread about how you experience swollen feet in the evenings. I have this too - do you mean that your feet are fine the rest of the day and then lets say you put them up after dinner and then try to walk afterwards and they are sore/swollen for a few steps? It's been confusing me for some time as to what it is and why it is, but nothing feels so good as to have other half rub my feet by my heels for a few minutes before I turn out the light!
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Has anyone heard from LovefromPhilly? Seems she has been very quiet on the boards and hope she is coping during this pandemic.
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It looks like LoveFromPhilly was last on the site the afternoon of May 11.
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Mel exchanged some PMs with her last week or so - it was in the My Love My life thread on the general IV chat...
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SondraF— ref swollen feet: when I wake up each morning, feet are fine. By mid-afternoon I realize my shoes feel more snug. By the time I go to bed, the tops of my feet are swollen
I have been experimenting with “what causes” this.
Seems to me this started after a day that I had some bbq potato chips. So thinking my body was reacting to the spices on the chips or to the higher amount of salt, I adjusted my diet to one more like a DASH diet (low sodium). That didn’t seem to change anything.
Next I tried to get up and move all throughout the day, thinking I was sitting too much during the quarantine. Didn’t make a difference
Next I tried keeping my feet “up” when sitting. But that didn’t change the swelling.
It seems better now that my Ibrance dose has been reduced to 100 mg.
I have read that Ibrance does cause swelling. I think I am concerned that the swelling is from blood clots. Wondering if I should see if I can get a Covid19 test as blood clots are one of the symptoms... could I be asymptomatic??
Funny you mention your heels. There are nights that I struggle to fall asleep because my heels are sore when they touch the mattress
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Anyone in Canada getting the new tablet form? I ask because its supposed to work better with a ppi, and my wife is now on a PPI for her stomach ulcers.
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Husband11, I live in BC, just picked up my palbo yesterday and it is still capsules but I am on a trial and using sanofi's supply. I don't know if that makes a diffe
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DodgersGirl...I am also on my 2nd week and I'm on the 100 mg dosage so it's the light green tablet. It smells when I take it out of the pack and I can taste an awful taste when I swallow, but it seems like it leaves a little aftertaste as well. I do have to say that my sense of smell seems to be heightened lately (maybe from one of the meds?) so maybe I'm just sensitive to it.
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