Ibrance (Palbociclib)
Comments
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Jaylea, welcome!
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I want to put this out there again. I have a brand new bottle of 100 mg Ibrance for someone who pays a chunk out of pocket. We could come up with a plan
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Welcome Jaylea....I am on round 2 of Femara/Ibrance 125 mg.. So far, I have had no problems with mouth sores. I do make sure to brush my teeth after every meal and also rinse with salt water. I was 7 years out before being diagnosed with MBC. My oncologist said your chances of doing well are much better the longer out before being diagnosed.
Joy...Wishing you nothing but the best results for your upcoming scans.
Dianarose....Are you no longer taking Ibrance? I'm fairly new and I know I've missed a lot of goings on with you gals.
I am drinking water like crazy all day long, hoping to get this creatine level down. My nephrologist took me off both my blood pressure meds and I will have labs done next Thursday. I'm taking my BP a couple times a day -- so far so good. It does make me a bit nervous not being on anything. But, hopefully its the meds that's messing with my creatinine level.
I don't take supplements of any kind. Did your oncologist suggest taking different supplements or do you all do this on your own? Just curious.
Hope
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Hello All!
Thank you for sharing your experiences with Ibrance/Letrozole, it helps as I am getting ready to start the drug combo.
On Tuesday, I will have a complete hysterectomy and will start 125 mg Ibrance & 2.5 mg Letrozole afterwards. I am okay with the surgery part and feel pretty confident about the drug combo, but realize after reading some of your experiences that the side effects can be significant. What advice do you have for this newbie? Is there anything I can do to help with the side effects? As soon as I was diagnosed I went from being a healthy eater to eating very clean, fruits, veggies, lean proteins, no sugars, no processed or fried foods and very limited red meats and I take B6, B12, D, Calcium, L-Glutamine and drink 2-3 veggie smoothies a day. I still work (advocate/social worker) and walk 2-3 miles a day........is there anything else I should do? I would also like to know more about hair loss, do most lose their hair?
Thank you all for sharing!
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Helen...It sounds to me like you are doing everything correctly! I admire your healthy eating. As for side effects, I had nausea and absolutely no appetite for quite some time. The fatigue was overwhelming at first. I still get fatigued, but think I'm just getting used to it. Good luck to you and happy thoughts that your side effects will be few, if any.
Hope
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Hello, Helen. There is a thread called "Ibrance/Palbociclib Side Effects Reporting ONLY" that you might want to read for a quick summary.
https://community.breastcancer.org/forum/8/topics/...
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Thanks, Z- definitely get some bifido bacteria into the mix, because that was the strain of bacteria that was reported in Science to stimulate immune cells; but you are right its crucial to get in a good mix, they are finding special roles for different strains all of the time.
And for Joyner and everybody, circling back to Pat's story from Nature, this is one of those cases where the clinical trials have moved ahead of the published research a bit (companies do their own research, so they had their own hints)- there is a clinical trial where Abemaciclib (cousin to Ibrance) is being tested in combination with immunotherapy (aka checkpoint inhibitors liike Keytruda and Opodivo). Here is a link to an interview with an MO from Memorial Sloan Kettering from last December where she describes the trial, which sounds like it was in phase 1 or 1/2 at the time. Hopefully they also update in December in San Antonio meeting. Anybody getting any kind of good response to Ibrance should keep this on their short-list, and when you take immunotherapy, be sure to include probiotic with bifido bacterium because it will make the immunotherapy work even better..
http://www.targetedonc.com/conference/sabcs-hers-n...
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I have to go to the cancer center for labs and hydration this morning . Please pray my labs have improved! I am always a train wreck before labs lately.
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Prayers and hugs Dianarose....I can surely relate to your anxiety. After almost daily hydration at the oncology facility for 1-1/2 weeks and then waiting for the CMP results afterwards always put me in a tizzy. This week I am hydrating at home guzzling water like crazy all day...having labs done on Thursday. I am already stressing! Keep us posted.
Hope
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Things are holding about steady so I don't have to go back until Tuesday. Hurray!!
Had bad acid reflux last night but I also had a ginger ale. Won't be doing that again. Having another echocardiogram on Tuesday as well. Would love a whole week off from appointments.
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Hi all, I had a consultation with my pharmacist yesterday who gave me the following advice to minimize hair loss. Not sure if it will work but thought it would be helpful information for anyone else who wants to try it. I start my iBrance after radiation is finished on 9/4. Really hoping to keep my hair...... Here is her advice: Use a baby shampoo and conditioner onl; no chemicals of any kind on the hair; comb with a wide tooth comb and don't blow dry; and sleep with a silk or satin pillow as apparently when we move our heads around on the pillow at night it can affect hair.
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Dianarose...Great news! Now you can relax...at least for a bit! Hope Tuesday is a great day, as well.
LA...Good advice! My hairdresser told me one of the worst things that women do when they wash their hair is "roughly" towel drying. She said just "pat dry" with the towel to prevent breakage.
Wishing everyone a very happy Sunday!
Hope
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Cureious, Z and others on the probiotic train,
On the FB equivalent page to this one, a poster brought up that reducing probiotics while taking Ibrance will achieve the desired effect. So now I'm a little confused.
From the article there's this: At the same time, the drugs can spark a reduction in immune system cells known as T regulatory cells (Tregs), which usually tamp down the immune response to disease or infection. Fewer Tregs results in a fiercer immune system attack. The cumulative effect of these processes is a halting or reversal of tumor growth.
From Wikipedia (sorry that this was the source, but it was the clearest), there's this: High levels of Tregs in the tumor microenvironment are associated with[6] poor prognosis in many cancers, such as ovarian, breast, renal, and pancreatic cancer.[31] This indicates that Tregs suppress Teffector cells and hinder the body's immune response against the cancer. However, in some types of cancer the opposite is true, and high levels of Tregs are associated with a positive prognosis. This trend is seen in cancers such as colorectal carcinoma and follicular lymphoma. This could be due to Treg's ability to suppress general inflammation which is known to trigger cell proliferation and metastasis .[31] These opposite effects indicate that Treg's role in the development of cancer is highly dependent on both type and location of the tumor.
And here's where I'm confused: If probiotics increase Tregs, then I think I understand that would help the Ibrance work better since we might be increasing the CD4 protein (although it would seem that the abelmiciclib drug would be better since it is the best one targeting the CD4, I think). But, is it also at the same time having a negative effect on our immune system which we want to help kills off cancer cells?
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Welcome to our new friends. Glad you found us and look forward to getting to know you. I wish you all a long happy time on this drug.
Helen, I wish I had as clean a lifestyle as you! Nice work. I am making steps to get there. The only advice I can give you is to be sure to take your Ibrance after eating some healthy fats as it was shown to increase absorption.
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Hi Jen- Good point, you can make arguments either way without the data- what is clear from preclinical studies that Abemaciclib works better with immunotherapy, and probiotics stimulate the immune response and work synergistically with immunotherapy, so on paper, they ought to help if you are taking immunotherapy and Abemciclib- but there will never be a clinical trial checking supplements. What is best with Ibrance could be something altogether different, and that won't have been tested directly either!
I was just at a meeting where they said that drug companies are trying to confirm that the direct target of Ibrance really is CDK4 and/or CDK6, versus any other protein in the cell, and that it was looking like maybe not- it's a good reminder that what the actual targets of these drugs are, and how the different versions of these drugs actually work, is often not really understood.We don't know the direct target of metformin either, but works great for diabetes...
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Thanks Cureious, I'm going to keep on with my probiotic. I'm doing great on Ibrance so far so gonna keep on keeping o
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I'm new to this so bear with me. In May I found out I had breast cancer, IDC. My mammogram showed enlarged lymph nodes. Had lumpectomy and axillary lymph nodes removed. 21/23 positive, primary tumor was 2.5 cm, grade 3. Had a bone scan which was clear but a CT scan showed 4 small spots, <1 cm. My doctor said Stage III and scheduled me for port placement. Dana-Farber cancer board recommended investigating the spots. Bone biopsy on my L1 confirmed malignancy. I was devastated. I'm only 44 and I have three children, 11,14,15. My oncologist isn't forthcoming with information. I've had to ask questions that I assumed she would just tell me without having to ask. My treatment plan was letrozole and then when that started to lag she would add Ibrance. Lupron shot monthly for ovary suppression, Zometa drip for bones. I wanted a second opinion. Decided to go to Norris Cotton at DHMC. Doctor there gave me an hour and a half of his time to talk. It was amazing, eye opening. He asked "Why add Ibrance to a medicine that is failing?" He recommends letrozole as first line then Faslodex with ibrance. He recommended that I have my ovaries removed to eliminate having monthly shots. Current oncologist recommends Lupron shots monthly. Also, Xgeva instead of Zometa. It's a monthly shot rather than IV drip. Has anyone heard of letrozole then adding Ibrance when letrozole starts to fail? Also, I have a Mirena IUD which he said has to go because of the small amount of progestin it releases. Will do that at same time as ooph. Any information would be appreciated.
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griff....I am fairly new here, also. I was diagnosed with BC in 2010 and recently diagnosed with metastatic BC to bones - spine/rib areas. I was immediately put on the letrozole/Ibrance 125 mg. combination. Zometa infusion once a month. I'm only on my second round of this and couldn't have the 2nd Zometa infusion because my creatinine level was elevated. That's what I'm dealing with right now. I'm 74 years old. I don't know if the treatment would be the same for me with your being so young. There is a lot of good information from these gals, so I'm sure someone will be able to help with any confusion. Hang in there!
Hope
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Hi grriff. I too was diagnosed Stage 4 in May. I was on letrozole after my initial Stage 3 treatment. Letrozole failed after 16 months (although a lost bone scan shows it had failed after 6 months). My new oncologist at MD Anderson said no point adding a failed AI to Ibrance, so started me on Faslodex and Ibrance plus Zometa. Sounds like your second opinion was keeping with standard of care.
I have my first scans post beginning this treatment on Thursday with consults on Friday. I have two bone mets, one in my spine and one in my tibia. If the Ibrance/Faslodex treatment has worked I will be a candidate for a curative intent radiation protocol. I'm pretty nervous.
All the best to you.
Mary
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my onc did letrozole and ibrance at the same time and xgeva ....first set of scans showed shrinkage second set of scans this week ....keeping my fingers crossed
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Hi Jen- I'm with you; the immune system does so many things, I think anything to keep it strong is good for lots of systems. I'm two years now on Ibrance-Femara, with a good scan last month, so hope it continues along OK for awhile more. But its good to know that if you respond OK to Ibrance + Femara or Faslodex, that Abemaciclib plus immunotherapy might be another good combination, with little in the way of side effects, for the future
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Can someone explain to me why these posts aren't in chronological order. As I read them I realize I've gone from 2017 to 2011 to 2005 back to 2017.
Thanks,
Topaz49
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Hello Helen Faith,
I tried Letrozole last December and ended up in ER and then at my cardiologist. So my oncologist stopped Letrozole and I started 125 mg. of IBRANCE at the same time I had about 10 days of bone radiation. Ended up in hospital for a week from side effects from radiation. Internal bleeding took my hemoglobin down to 6. But after a few blood transfusions and 39 days off Ibrance my oncologist started me on 75 mg. Ibrance and I tolerate that fine. So I've been on Ibrance since January along with Anastrozole that I've been taking for about 14 months. I've experienced slow hair loss since starting Ibrance. I had a lot of fine hair, now maybe 1/2. I bought a wig in May when a friend was in town but haven't had to wear it. No bald spots. My scans have showed either some improvement or no new lesions. I have had 2 CTs but I think last Pet Scan was in March. I think the Pet Scans show more. I've had shortness of breath, fatigue and developed a dry cough a couple of months ago. Now they're thinking I have CHF, when in December cardiologist said it was not CHF, it was a reaction to Letrozole. Please remember everyone is different and react with SEs all differently.
My best,
Topaz49
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Hi Topaz,
With regards to the dates, I think you are confusing the date joined (the first date) with the date/time of the post. They are in chronological order
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Hi Helen Faith,
I was dxd stage IV bc with multiple mets on my bones and liver May 2016. I was placed on Letrozol and Ibrance 125 from my first dx. I also get a Zometa infusion every 3 months. My mets are now resolved with no more mets or obvious cancer activity anywhere other than in my lymph nodes under my arm where it was first discovered. I am still on my original regimen to keep the cancer under control, and will be until I can no longer tolerate it or the cancer finds a way to come back. As you have read here, everyone is different and reacts differently to the medicine. I have the typical side effects; lots of fatigue, occasional nausea, thin hair, and mouth sores, but it is manageable. My results are good so far, and I post them here to give you encouragement. The ladies here have lots of wisdom and more experience and knowledge than I, but good results do exist. Keep asking questions of your onc and don't be afraid to push.
Chris
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Good morning, all. Is this the same new development we read about last week? Sounds encouraging. I recall that the doctor was out west but not whether it was this Dr. Raj.
"Dr Raj and his colleagues have done the remarkable by discovering what could be the first-in-class of a therapeutic that realizes this dream," Dr Mangelsdorf added.
The drug is designed to block co-factor proteins that need to attach to the estrogen receptor for cancer cells to multiply. The new molecule ERX-11 mimics a protein building block, according to the authors. Thus far, ERX-11 has been tested in mice and cancer cells derived from patients, and has been successful in both models. Furthermore, the investigators have observed no signs of toxicity in the tests."0 -
I just started new bottle of Ibrance. At last check ups my tumor markers have been decreasing but recently latest CT scan shows the cancer spreading to other parts of my spine and ribs.
Has this happened to anyone? Decreasing tumor markers but cancer is spreading?
Also, how are you dealing with joint pain and pain in general?
I may have to ask my oncologist if I can try medicinal marijuana.
-toni
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grrifff: My MO started me on letrozole alone for 18 months when I was first diagnosed with mets. When that started failing, I had progression to my liver, he switched me to Faslodex and Ibrance where I'm just finishing my 7th cycle. I've had a reduction in liver met sizes, but have had mostly increasing TMs.
Toni67: My problem is that even though I'm seeing reduction in met sizes on scans and the disappearance of a pericardial effusion, my tumor markers have been rising. They went down one time, but otherwise have been on the rise from 700 to over 4900 at the highest. I'm due for TMs with bloodwork in a week when I complete my week off. Every time they go up I get scheduled for a scan that shows improvement and my MO starts talking Zeloda every time the TMs go up. I was hoping I could get them to prescribe a short course of steroids to see if the TMs are related to inflammation.
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I was on my second round of Ibrance/Palbociclib this month. White counts, neutrophils went too low and I ended up in hospital for 2 days with urinary tract infection. Oncologist stopped the Ibrance with 4 days left in the cycle. Hoping my counts will go up so I can take it next month. I'm on 125 mg. dose. with Letrozole and xgeva shot (currently monthly, but he may move this to every 3 months). Had severe dizziness, room spinning, and nausea that prompted me to go to emergency room. Oncologist told me to go ahead and order the 125 mg. Ibrance for next month (to start in 10 days if white count goes up). I am reluctant to order in case white count doesn't go up and he has to reduce the dose,,,is this likely? Cost of drug leaves me 1000.00 co-pay and if I order it and need a different dose, I will have to pay the entire cost of the new dose ($12,000 - $13,000). Any advice on this? Prior to this hospital episode/infection, I had been feeling great...no notable side effects and my extreme bone pain has been gone since second week of treatment with these three drugs. Just one bad side effect day and now taking antibiotics and hoping for white count increase. Any advice on whether I should go ahead with ordering the drug
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Hi Joy, I think that is the same report, its another approach to get an estrogen-inhibitor, it won't work if the cells have become resistant to other estrogen inhibitors by turning on the PI3K pathway, for example, but more anti-estrogen approaches are always needed
Here is a link from current issue of Science discussing a new approach where a group is trying to use nanoparticles to come in and blast open tumor cells in a light-dependent manner, which exposes a bunch more cancer protein and primes the immune cells to go after the tumors much more aggressively, when used in combination with checkpoint immunotherapy. I thought it was interesting that this test was on breast cancer cells, and that trials may start late this year or next year..
http://www.sciencemag.org/news/2017/01/nanoparticl...
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