Ibrance (Palbociclib)
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Weninwi and sunshine99, thank you so much for sharing your stories. I know cancer doesn’t play by any rules or pay attention to stats. I’m still in the stage of wondering if I did something wrong…a glass of wine here and there, I exercise but maybe should have exercised more. Crazy I know, but my mind still occasionally goes there! You are so right that cancer is not our fault. This forum has helped me so much. I am headed to MSK in mid December for a second opinion. Like you, I want to feel like I have done everything I can. Take care. (Sunshine I love your signature line :
Nancy
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believe - This is not because you enjoyed an occasional glass of wine. We drew the short straw - twice. It sucks but now is the time to educate ourselves, make the best fact based decisions regarding our health and just be there for each other when the chips fall.
My sister and I were both dx stage 2 but since she is older, our dx were 17 years apart. Same sub-type, very similar treatment except that she had 8 cycles of AC whereas by 2016 my SOC was 8 rounds of dose dense AC+T. I had the benefit of Neulasta. My point is that she is a life long chain smoker, does not exercise or even move much, drinks excessively and eats a poor diet with a lot of processed food. After treatment she only took tamoxifen/anastrozole for a very short period of time saying the SE were too great. I’m the opposite in every way. And I took my tamoxifen faithfully - only late 1 time in 3 years. My only “sin” is an occasional social drink. She is now 22 years cancer free (and I’m thrilled for her) but here I am. Cancer doesn’t always make sense. Don’t waste your time trying to make sense of it. Hugs
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Has anyone switched from Ibrance to Verzenio and NOT had diarrhea as a side effect? Had my latest PET scan this morning and there's more uptake on the spine (same place as my original metastatic lesion, and the "something" that showed up on a previous PET but turned out to be "probably not cancer"), as well as a new spot on the iliac bone. Oncologist wants to switch to Verzenio, but diarrhea is honestly one of those things I simply can't tolerate. That and vomiting - I get chills and panicky just thinking about them! Am seriously breaking out in hives... I must have had some horrible experience in my childhood, LOL. My husband says just suck it up, and if I have to take it, I have to, but I'm hoping for something positive to hang on to!!
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ciaci,
I switched the other way from Verzenio to Ibrance, because of side effects I couldn't reverse, and Ibrance was definitely easier to tolerate for me. But I'd go back on Verzenio in a heart beat as I did not progress on it and I eventually learned to manage the diarrhea.
I'd recommend following the diarrhea control guidelines written by Constantine Kaniklidis that appear in the shaded area at the top of the thread for Abemaciclib Verzenio for Stage 4. I was advised to follow a low fiber diet to control the diarrhea, which I did for 18 months, but this was terrible advice. When I finally went back on a more normal diet, and started following Constantine's guidelines and adopted some of the tips from the women on that discussion board, I finally got reasonable control.
Remember, you can ask for a dose reduction if the diarrhea is too much. When I went from 150 mg to 100 mg it helped, and I would have considered requesting another dose reduction to 50 mg if I had stayed on it longer. It is my understanding that Verzenio remains therapeutic even at lower doses.
Finding the right dose/frequency for imodium is just trial and error. The balance is diarrhea control vs constipation. My GI doctor told me I could safely take up to 6 a day, but one-a-day or one-every-other-day is all I needed.
I think adding a probiotic to your diet is very important to keep the gut microbiome replenished. I was told not to waste my money on probiotic supplements and instead to add a probiotic drink like kefir. Even though I'm no longer on Verzenio, I still drink about 1/2 cup unsweetened Kefir at least twice a day. Some women order a liquid probiotic that is shipped on ice.
The stomach pain was harder for me to figure out. I got some relief from ginger tea and ginger gummies. But it wasn't until I figured out I had developed an intolerance to high FODMAP foods and started to avoid these that my stomach pain became much less of a problem.
Hope this helps and reassures you. There are many good tips on the Verzenio board.
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ciaci,
One more consideration....I developed nutrient deficiencies while on Verzenio.....my Vit B12 and Vit D fell to below normal levels and my albumin and protein levels were low on my blood work. I think this was most likely due to the low fiber diet I was told to follow, and I'm older (70s) when nutrient absorption can decrease d/t age. However, given that Verzenio affects the gut, I think asking for a baseline level of Vit D and B12 might be a good idea, and then recheck 6 months later, maybe. I had to ask my Primary MD for these tests.
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ciaci - I’m sorry to hear you may be moving treatments. I totally understand the nerves. Will you be switching from letrozole as well? My time on Verzenio was short. Started at 150. The diarrhea wasn’t bad but the cramping was intense so we decided to go all the way down to 50 and quickly worked up to 100. I followed a low FODMAP diet and occasionally took Banatrol which I ordered on Amazon. Hugs.
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Thanks for the advice, rk and weninwi. Not sure what she wants to change the Letrozole to, but she definitely said she will change it as well. I'll meet with my oncologist on Tuesday. Had an ultrasound of the thyroid on Friday, and it showed 3-4 nodules, but the report doesn't say cancer (doesn't say "not cancer" either), so I have no idea what that means. MRI of the iliac area is on Wednesday. My specialty pharmacy already called to say the Verzenio was approved for a 14-day trial, to see if I can tolerate it. Apparently, my onc. requested approval for the 125mg. My husband (the pharmacist) plans to lobby her for the 100mg when we see her Tuesday.
I hate feeling like I'm back to square one, but I got 60 months out of the Ibrance before progression, so I'm truly grateful, and planning to be just as lucky on the Verzenio... can you plan to be lucky?
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Ciaci that’s wonderful you got 60 months out of ibranc! Best possible outcomes on verzinio I hope you get a super long run.
Take care
Tany
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Ciaci- I have had thyroid nodules since 2015. We do ultrasounds to monitor. The only way to know if the nodules are cancerous is to do a biopsy. I had a biopsy at diagnosis in 2015, also in 2016 when the ultrasound showed growth, and again in 2021 when my PET showed increased SUV of the thyroid. All my biopsies were negative for cancer. I think you should ask your doctor if you need a biopsy of the thyroid nodules.
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Good morning, it is cold today here in Seattle - feels like winter for sure!
Ciaci - yes you can plan to be lucky and 60 months on Ibrance is amazing, although I am sorry you need to change meds. I wonder if your MO will switch you to fulvestrant...maybe just to Verzenio...
Candy-678 - so good to see your post, with good advice:)
RK2020 and Weninwi - great advice, too. I haven't posted in a while so had to catch up on our group!
Hope everyone else is doing ok and those in the US had a good Thanksgiving. Ours was small but enjoyable. We hosted another couple and his mother, who is visiting from out of state. All our young adult kids were working or live too far to join us. In the past 16 years if we are in town for Christmas we spend xmas eve with this other family. This year, all of our kids will be present for xmas which will be wonderful! Both my husband and I have visited our elderly parents (both mine are still with us and his mother is still with us) in the past 2 weeks so we are not traveling for Christmas. I am looking forward to a less hectic holiday season this year.
I have my quarterly petscan and ct-scan with contrast coming up on 12/8. Just started cycle 37 of Ibrance so had my 3 year MBC cancerversary 2 weeks ago....it's still such a strange reality but I do feel lucky and thankful that today I feel pretty good.
Ciaci - let us know what you and your MO decide!
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Oh dear. I hate when I type out a message and it vanishes before I can submit it. Take 2.
I hope you all are enjoying your holiday season. My son and his girlfriend flew south to spend 2 weeks with us. Yeah! The downside is they will spend Christmas with her family. I loved him first but I have to share. It’s the circle of life. Unfortunately, my son came down with Covid so our Thanksgiving was quieter than expected. No friends at our table. His gf and I are newly boosted and my husband had Covid earlier this year and it looks like no one else will be getting sick. 🤞🏻 I was hoping not to get sick because I didn’t want Covid to delay the start of my CDK2 trial. My screening testing is complete and I’m expected to start the new drug Dec 1. It will be a long day as they will monitor me from 7 am until 7:30 pm. I’ll be getting my quarterly Zometa that day as well. I’m still pondering when to stop Zometa. I plan to ask my research oncologist her opinion.
We are off to do some Christmas ahopping now! Ho ho ho.
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Thanks, Candy, I'll ask her tomorrow. I have had nodules in my lungs since the beginning, but they never changed, so cancer was ruled out early on. Maybe this is a similar thing?
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ciaci -It would be great to hear these nodules are nothing. Keep us updated.
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Well, I'm officially on Verzenio - now on Day 4. I'm walking around with the Imodium in my pocket, waiting for diarrhea to start, LOL. Okay, not really, but I do have a few tablets in my purse, in case we go out! So far my oncologist told me to stay on the Letrozole, so if anything happens during this 14-day trial, we'll know for sure it's the Verzenio. We'll evaluate on the 15th, when I get blood work done, and go from there.
Heading over to the Verzenio board... but I'll still visit here!
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Good luck, Ciaci! Hope that Versenio is very effective for you.
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Ciaci hoping V treats you well. Like you I stared Ibrance at the end of 2016 so I will be very interested to learn how you get on. Good luck.
Chicagoan looks like the 3 of us with similar “handles” all started out at the same time. So glad we have allmade it this far.0 -
ciaci - I like your MOs approach. I hope V treats you well.
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Warning to all on Ibrance: Be sure to check your levels of VITAMIN B12!!!
A few weeks ago I developed peripheral neuropathy in my feet after 7.5 years on Ibrance, which I suspect (but do not know for sure) was caused by depletion of vitamin B12, which is one of several known causes of neuropathy. CDK4,6i and AIs both can deplete vitamin B12, as can the anti-GERDs drug, Prilosec (Omeprazol), which can lead to neuropathy as well as excessive joint pain. I've been off Ibrance for 2.5 weeks now and the neuropathy pain has dropped down a notch (although my feet remain numb and cold, but fortunately they are no longer in pain), and the extra stiffness and pain that I had noticed in my joints in the past six months or so is fully gone. I'm getting B12 shots next week and once my B12 levels are in high normal will continue with the high-dose sublingual B12 supplements, and hope this does not get worse once I begin Verzenio (neuropathy is not listed as a side effect, but depletion of B12 is on the list). Overall, after 7.5 years, I think it is a good idea to switch CDK4,6i drugs and throw something different at the cancer, so I am hopeful that this all works out.
In reading about this, I found a clinical trial, underway since 2019, that is testing whether supplementation of B12 for breast cancer patients on AIs (2500mcg per day) reduces joint pain and leads to better compliance with therapy:
https://clinicaltrials.gov/ct2/show/NCT04205786
https://clinicaltrials.gov/ProvidedDocs/13/NCT0306...
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Cure-ious-Thanks for the warning. I've been taking a Super B-Complex supplement for a while and last year my Vitamin B-12 levels tested fine. I wonder why checking our B-12 levels is not part of the standard of care? My PCP ordered the test, not my MO. Hope Verzenio works well for you. I'll be following you and Ciaci's progress on the Verzenio thread.
Chico-I do follow your progress (as well as Ciaci's) since we all seemed to start near the same time and have done pretty well on Ibrance. Hope I can match Cure-ious' 7.5 years. We may now be the longest running people active on this thread. MicMel will be hitting 7 years pretty soon. Anyone else?
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Thanks Chicago-an!! Agreed, why would there not be a requirement from these pharma companies to follow B12, regardless of how long the problem may take to develop, given that the consequences can be so serious? Anyway, I've got a lot of reading on Verzenio to catch up with now- You guys charge ahead and take the lead on Ibrance, Good Luck!!!!
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cure-ious,
My B12 and Vit D3 both fell below normal while on Verzenio. I became depressed, moody, crying all the time. Finally decided something more than "having cancer" was wrong. I began to wonder about a nutrient deficiency due to the frequent diarrhea and because I had been told to follow a low fiber diet (terrible advice). I read that B12 deficiency can have psychological effects so I asked my PCP for a B12 test. It was very low and my Vit D3 also (even though I was taking a daily gel tab). I was able to correct both with sublingual supplements, while still on Verzenio. The subject of possible nutrient depletion while on Verzenio was never brought up by my MO.
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Thanks for highlighting this Cure - Im having same issues on Lynparza. Started dragging ass a few months ago after feeling great the first four months (which were during summer!), though my bloods are fabulous and way better than on Ibrance. MO ordered extra blood panel a few weeks ago and called to tell me my B12 and Vit D were low and to get the shots and start D3 supplementation. We just got home and calling GP is first on my list this morning!
Wenn - same thing with me and the mental aspect, came on same time as the extra fatigue and joint pain. I also tend to have D with Lynparza, so Ive also wondered about loss of nutrients. Ah well, let's hope the extra vitamins get things up and running again!
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Good evening everyone. I just had my first Fulvesterant injections today. I start Ibrance tomorrow. I am very nervous about it. Do any of you have hintsabout time of day to take it, should it be with or without food? How well do you all tolerate it? Any input would be greatly appreciated. Thanks, GiGi
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gigil- I hope you get many years out of this drug like some on this thread have. But if you find your ANC plummeting and you are told to hold off on taking it for a week or two, don’t despair. This is common and many of us had to reduce our dosage or even modify the schedule. You can still have good results on a lower dosage. My first 4 cycles wound up being 14 days on/14 days off due to low ANC and I still had good scan results at my first 3 month scan.Good luck.
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Gigi, I've had 2 rounds of Ibrance and have had no side effects. I take it right after dinner because someone on here recommended it. My numbers look a little low and I'm betting they ask me to wait another week to start. I wish you no side effects and a long run on it.
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Gigi,
When I started on Ibrance I did not expect the significant fatigue, it lessened in the first month or so as my body adapted, but was still there- I hung in there on the highest dose for three years, much more afraid of the cancer than the fatigue, eventually I had to dose reduce because of ANC levels dropping too much, and was much happier with the low/no fatigue on the 100 mg dose
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PS Gigi, Don't angst too much about the low neutrophils- Ibrance is not like chemo (ie, it temporarily arrests the cells from growing and maturing, whereas chemo kills them off), so dropping ANC levels are relatively quickly restored by pausing the drug, and the trials did not show much in the way of increased infections...
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gigil
Ibrance was easier for me than Verzenio. I took it every day with breakfast. I started out at 125mg but d/t low neutrophils (ANC) the dose was lowered to 100mg. At that dose my ANCs stayed above 1000 and I really didn't have any other noticeable side effects. If I had developed more side effects, I might have asked for the next lower dose. But I was on it for less than a year because I progressed.
I developed nutrient deficiencies (Vit B12 and Vit D) while on Verzenio. And you'll read on this thread that others have developed similar nutrient deficiencies while on Ibrance. I'd recommend finding out your baseline levels and repeat at some future time. I had to ask my primary care provider for these tests. I was able to remedy my low levels with sublingual Vit B12 and sublingual Vit D3 supplements. There's good absorption via the sublingual route, maybe even better than the gastric route.
Hope you get a good long run with Ibrance.
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WeninWI, Yes! I did also have some odd (for me) depression and problems sleeping that apparently can come with this deficiency (and vitamin D3 as well). We forget these are powerful drugs, taken over years.
Sondra, Wow, thanks for that info about Lynparza, that is a drug on my list for possible use in future....
And Mayo Clinic (as well as many other sites) say a deficiency strong enough to give neuropathy needs B12 shots, like daily for a week and then weekly for a month, and then go on to the supplements, making sure to use sublingual as you say
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More info about Neuropathy: My sister is a phD physical therapist, and for her continuing Ed credits she consulted with a neurologist, and I thought what he said was interesting: Apparently, we have a reserve of nerves in our feet, that can take over when there is damage to the frontline nerves, but in order to access those nerves, we have to hyper-oxygenate the tissues, which is hard to do for the extremities. For all of his onc patients, he says they really have to try for aerobic exercise, get the circulation going strong and pump O2 into the extremities (that 3% of the tissues use 20% of the oxygen). And he says its not a short-term fix, its gotta be a daily thing. Yesterday I went shopping for Xmas lights (LEDs are awful!) at all the stores and walked 5K steps, and my feet got rid of the feeling that they were soaking in ice water. That cold-to-the-bone does not respond to hot showers, spa soaks, heating pad, IR lamp (I tried all that), because the temp is not off, its the nerve that is off. But the walking seemed to drop the cold-to-the-bone feeling where none of those other things did. Accupuncture is also supposedly helpful for neuropathy, and is well-known to help with circulation in the feet, so maybe that's how it helps. other things to try are swimming, exercise bicycle, even that breathing tool they use to build aerobic lung capacity. So, I'll be interested if exercise, accupuncture and vit B12 shots help with this..
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