Ibrance (Palbociclib)
Comments
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Cure-ious - My MO did the Tempus test on me and it showed that I have no mutations. If I understood my MO correctly, because of that, I would likely not respond well to immunotherapy. Does this new CDK12 inhibitor make me more likely to respond to immunotherapy?
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I am sitting here thinking. After 2 weeks off Ibrance AND the Zarxio shot, my ANC only came up from 800 to 1500. And 1500 is low end of normal range-- 1500-6000. I would have thought with the G-CSF and the extra time off Ibrance the numbers would have been better.
So question for group--- is the Ibrance getting to be too much for my body to handle? I am on 75mg dose. I have been on Ibrance for 30 cycles. Has anyone ever stopped Ibrance due to the neutropenia instead of progression? I have not had so much as a cold in the time I have been on Ibrance. But what if my onc wants to stop the med due to the chronic low counts? Anyone out there from our researching group that has an opinion??? You guys are so knowledgeable and research so much. Ever come across this?
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Hi Candy,
I am on cycle 32 as well. My count is usually around 1 to 1.2. The time that I took an extra week off Ibrance, the number soared to 3.5 but went back down to 1.2 at the end of that cycle. I personally think that our bodies know what to do and it’s nice to have a little break from the medicine. I actually was thinking to take some regular breaks from Ibrance so that the body has time to recover. I personally wouldn’t be overly concerned not being on Ibrance as letrozole alone is a good medicine. My friend has been on it alone for several years without issues
I never think I would be in a position to give advice, but good nutrient would help your body recover. I take B-12 supplement daily and increase intake of protein, fruits and veg. I have a foot messager that helps blood circulation and stimulate pressure points. My friend uses essential oil. So maybe some natural supplements would help your situation
Thank you for all your good wishes on my recent scan result. I try to build courage to live each day happy and purposeful. Congrats on many of your good scan results as well. I remind myself that if I am faced with progression one day, it just means a time for a change, to adapt to a new normal and then life goes on....
Thereishope
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Cowgal- The hope with CDK12 inhibitors is that they will make our cancers become sensitive to immunotherapy. This is based off of the discovery that people with prostate and breast cancers that carry CDK12 mutations, which are found only in a small subset (3-5%) of patients, were found to respond at high rates to to checkpoint inhibitors like Keytruda, whereas most patients with those types of "cold" tumors do not. It makes sense, because CDK12 is needed for DNA repair, so the cancers with CDK12 mutations are more sensitive to DNA damage and more screwed up, therefore get high T cell infiltration and killing by the immune system.
Fortunately selective drugs to inhibit CDK12 kinase activity have been developed and presumably are heading for clinical trials, and this new Nature paper reports a different type of drug, long known to inhibit CDKs in general, but it turns out to be super highly selective for inhibiting (and actually degrading) CDK12. So the next question is how toxic are these drugs, will they work alone or with AIs, then will they help immunotherapy- a lot of trials needed.
The drug in the recent Nature paper was a stronger derivative of an early CDK inhibitor drug called Seleciclib, which had lower activity and selectivity but was tolerated OK in early clinical trials. Another drug, Dinacyclib, is also an older CDK inhibitor but was recently found to be a very strong inhibitor of CDK12, and it is in clinical trial with immunotherapy at UCSF, so although this is not the best drug (relative to these newer ones that are more selective), the trial should give some idea if CDK12 inhibition works, and how toxic it may be.
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Cure-ious as always so grateful for your research. These paths sounds particularly promising to me, though that's my (hopeful!) layperson point of view.
Thereishope -- celebrate!
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Could I get more detail in that foot massager?
Doesn't matter what I do, my feet are painful to walk on my the evening and I have partner lightly rub the arch and heel for a few minutes. 0 -
There is hope, congratulations on good news!
Cure-ious - i also really appreciate your research and posts on studies and up and coming possible treatments.
Candy, I am not a scientist and am starting cycle 8 next week so only have 7 cycles in BUT my neutrophils have dipped down to 1.0 or below almost all 7 cycles. 2 times I had to delay an extra week and then my MO dropped me to 100mg. I think many women are on 75 or 100 mg and have 2 weeks on 2 weeks off. Is that an option ? I asked my oncology nurse practitioner last week if there is a supplement or food I should take/eat to help my white blood count and she said there really isn't.
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SondraF, I have a Shiatsu foot massager made by Marnur. It got pretty good ratings on Amazon. It does more squeezing and pressing on different points of the feet for the purpose of stimulating the pressure points.Alternatively, I think there are ones that “rolls” at the arch of the foot. I had a lot of foot pain as well earlier on when I started Ibrance. Now I am either getting use to it or has gotten better. I don’t notice the pain as much. I think I have mentally accepted that being normal
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Thank you Cure-ious for the explanation on the CDK12 inhibitor.
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This morning I received the new dreaded tablets. Just wondering did anyone switch times taking the ibrance. I was taking the ibrance at lunch with food. Supposedly now we don’t necessarily have to take it with food so I was considering taking with my Letrozole first thing in the morning. Hence my question is does anyone take both at the same time?
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Tinkerbell- I have always taken my Letrozole and Ibrance together (at breakfast). I will continue to do so, even with the new tablets and not necessarily the need to take with food. Habit. No need to change now.
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thanks Candy. I'm not a breakfast eater that is why I split it up. Now food is not necessary with Ibrance so I was going to start taking with Letrozole. As crazy as it sounds this little step can simplfy my life with managing medication.
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Hello friends! Hope everyone is doing okay? I have been laying low these days because it can stress me out quite a bit, but wanted to share that I was interviewed for this great service called Ciitizen - which is for cancer patients, that I use. Here is the link to the blogpost if you care to find out more:
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Philly- Great article and video. You are an inspiration for us, and also you are using your story to help others learn about MBC. Post when you can. I miss seeing you.
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Candy, my wife has seldom had 1.0 neutrophils, and for some reason her oncologist has kept her on 75mg, uninterrupted. She also seldom has a cold or flu. I don't know why they are making an exception for my wife, they stick to every other rule about Ibrance, but its good and she has benefited from it.
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Husband11- I hope they continue treating your wife as they have been. I have been on Ibrance 75mg for 2 1/2 years. My neutrophils stay 900-1000 (0.9-1.0). Never an issue until now. Dipped to 800 (0.8) and MO freaking out. Ordered hold Ibrance and use Zarxio. Now resume Ibrance but recheck neutrophils in 2 weeks. Why the issue now??? I too do not have colds or flus or any infections. Never any fevers either. MO got something in her head and is not letting it go. I do not want to stop Ibrance because of her fears. I am ok with using Ibrance as I always have.
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Philly...great article and you're so cute!
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Candy - I usually get the go/no go and no discussion about the actual level, though I was surprised I posted a 0.9 last month because I felt fine. I never got sick before this and I haven't been sick or even picked up something minor since starting Ibrance. Like what, is my bone marrow lazy or something? Is that 1 absolute for everyone or is there say a margin of error around that to account for individual differences. Sounds like something cure-ious would know....
Sort of related - perhaps she is freaking out now if Covid is moving into more rural areas, even if your county isn't necessarily affected.
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I have a question about Neutrophils. I have several results, but I'm not sure which is which.
Prelim Abs Neut - range is 1.50-7.40 K/mcL (mine was 3.12)
Neutrophils % - range is 38.0-74.0% (mine was 65.6)
Absolute Neutrophils - range is 1.5-7.40 K/mcL (mine was 3.12)
What are these and which one is the one that causes concern? I know that my WBC will be checked once I've started, but I really don't know more than that. I expect to start taking the tablets on Thursday after my Wednesday appointment with my MO.
Thanks, ladies!
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Sondra- We have had a little over 100 cases in my county--with the last one May 24 I think. So, Yes we do have COVID in my area, just not a "hot spot" per se. My MO talks about the magical number of 1000 (1.0).
Sunshine- I would say of those you listed it would be the 3rd one--- Absolute Neutrophils- range 1.5-7.40. My lab says range is 1.6-6.1.
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Thank you, Candy!
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I had my ct scan done today and they found progression, new liver Mets so I’m off the clinical trial and on to xeloda starting Friday.........I am so bummed right now
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Mls1, I am so sorry to hear of your progression. I will be joining you with Xeloda only my onc is allowing me a week between meds because my three young grandsons are coming Thursday for a visit and I want to feel good enough to enjoy them. I will see you on the Xeloda thread my friend.
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- Mis1 So sorry to hearthat you have progression. May I ask what trial you were on? Hope Xeloda is kind to you.
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Chico, it was the brtserd trial, trying out a new pill form of fulves
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MLS1 sorry to hear of your progression. Sending you a big air hug. I pray your next line of treatment stops the cancer in its tracks.
Thereishope congratulations 🎊🎈🍾🎉 Big deal!
Tany
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Mls1 - I'm so sorry about your progression. Hope your next treatment works.
My neutrophils count is 0.94 after 9 days off Ibrance. My MO said that its real value is 75% of WBC (3.1), so he's not worried about it.
CA 15-3 is slightly lower at 155, but CEA is at its highest value. Still not as beyond normal as 15-3.
Cycle #7 at 125 mg (capsules) starts tonight.
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Just posted this on the "Hair Loss with Ibrance" thread. Thought I might have better luck here.
I'm in the middle of Cycle 4. My hair is seriously thinning. As the RN who administers my Faslodex suggested, I'm limiting washing to several times a week and no longer use a blow dryer or "product." I had my last coloring months ago.
When I see my hairdresser in a few weeks, I'll ask her for an appropriate cut that satisfies my vanity. Good luck with that, hon.
I have absurdly sensitive skin, so I can't imagine wearing a wig.
Any suggestions? (Other than "Stop whining.")
Ticked-Off Tina
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Tina, my hair has "seriously thinned" but I have no bald spots or any threat of that. I constantly see hairs all over my clothes and wonder how could I have any left. But I do. Thinner but still there. Way too long right now but whatever.
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Tina,
My hair thinned a lot in the beginning due to either Ibrance, Letrozole or perhaps both. What has really helped me is taking 10,000 mcg of biotin everyday. Smaller doses didn't make much difference. Last year I also added the supplement MSM. My hair now is pretty thick. RapidBrows has helped my eye brows, while RapidLash does not seem to do much for my eye lashes. I wash my hair once or twice a week and usually heat style with a curling iron. You are not whining. I think having hair that looks attractive to us is helpful for morale. When the time comes to switch treatments, I know I may eventually use a wig but for now my natural hair is fine.
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