Ibrance (Palbociclib)
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Karen,
Obviously everybody's gut is different, but I recently had success adding in a daily pre-biotoci (but no pro-biotic). The prebiotic is a fiber pill that has short chained fatty acids, and it took awhile to make a difference but has helped a lot, in case you aren't already using it, it may be worth a try?
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Cure-ious,
Why were you so definitive in saying that you are NOT taking a probiotic? That made me nervous. My Ibrance constipation has been helped tremendously by Active probiotic dailies (a yogurt drink by activia) that I try to drink every morning to help keep me "regular." Is this a bad thing? It seems to work better than just plain Greek yogurt or Activia yogurt.
Thanks.
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Hi BevJen
Oh I mentioned that because the pre-biotic came along with a special probiotic I had ordered, which in enriched in a couple of bacterial strains that have been shown to boost immune system cancer killing activity. Studies since showed that its not a good idea to try to do probiotic supplementation on that kind of big scale, the diversity of the gut microbiome goes down and they do not get the best response to immunotherapy. I was having terrible problems with D so decided to jgo back and take the pre-biotic (fiber) part and that fixed my problem. But I also eat yogurts with good bacteria, there's not nearly as many bacteria as in those supplements.
Funny I just had my teeth cleaned the other day and my hygenist told me she took a health and aging workshop and they told her to take prebiotics and not probiotics, probably the same idea
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Okay Okay!! I guess I needed to have a little patience and as they say you catch flies with honey, me wearing my honeybee earrings today must of been my good luck charm because ive finally got a gas story!
My latest attempt at trying same time of day is I'm taking with lunch. I don't always want breakfast and I don't always want dinner, but I do always want lunch. So anyways. Its traditional for after church for hubby and I to grab some lunch out. So I happen to pick a deli sandwich with alot of veggies in it and for added health a milkshake. We always go grocery shopping after that. Since this whole cancer mess Stage 4 or otherwise I know where every bathroom is in every store near us. Every one. If there is a second hidden one in a store. I know where it is and the most efficient route through the store to get there. Well, where we were shopping that day the way to get to the bathroom is down a long twisty corridor. Its pretty hidden, quiet and the employee lounge area door is off an offshoot of that corridor. Anywho. Having freshly taken my Ibrance, I knew gas may or may not be coming. Well it didn't disappoint. I checked down the corridor and figured since I'm in a pretty semi private area, why not let go here instead of throughout the store. As I'm walking down the corridor both ends of me were in competition to see who can be louder. Loud and frequent enough it sounded like a little kid found their way into the helm of a big yacht and discovered the horn. I kept peeking back to see it was still safe intermittedly. And for good measure, I lifted my leg a bit and let the rest of the whoopee cushion go towards the end. Cracked myself up behind my mask. Oh yes, the gas is back. My giggles were cut short though when I saw a streak of color dart past me and high tail it into the employee lounge. Whoops. Just another unpredictable day doing the Ibrance dance.
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Ahh Rabbit. You aren’t alone knowwhere all the bathroom are. Love the gif.
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Hi, Ibrance dancers - RRabbit, thanks for checking in ! I just got back from a 16 day vacation / road trip visiting Yellowstone , Zion, Bryce Canyon, mother in law in Sedona, my parents in palm Desert , sister and family in so cal and back home (with a visit to Crater Lake on the way back to Seattle). My husband and I celebrated our 30th anniversary and as our trip to Europe was canceled and we haven’t seen our families all year - we decided to drive ! We had a wonderful trip , still get along remarkably well and loved every minute of it (almost - the public restrooms got old pretty quick!) . 9 states in 16 days! I finished my 10th cycle of Ibrance on it and had my week off - see my oncologist this Wednesday .
I feel fortunate that I feel pretty good on 100mg - definitely more tired . I feel so much better compared to last year when I was sick with this recurrence but all the docs were dismissive that I had a virus . Grr. My Ibrance side effects are less on 100 mg and I sure hope my blood work is ok and I can stay on it for YEARS like many of you! Petscan in October ....
Candy , I was dx in 2008 at 44. CMF put me into menopause. I did have initially a very serious case of hot flashes . Femara gave me a lot more joint pain (was on it for 7-8 years) compared to fulvestrant.
Ok, back to work - as I have posted before I am conflicted about how much time I spend at work so it was incredible to have 16 days off - many with no internet/ cell service . September is beautiful where I live - hope you all enjoy your day !
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Aprilgirl, sounds like you had a fun time👍🏻
Ladies I have a question, has anyone experienced lymphedema with I/L combo?
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aprilgirl1: I am contemplating bone graft surgery to my jaw (long boring story). Started chemo last week. My oncologist wants me to postpone the surgery until the cancer is under control. Seattle is one of the options for the surgery when and if I am able to get that done. Would like your thoughts about that, where to stay (Airbnb?), etc. My husband will be with me - he works and needs fast internet. I don't know how long I would be in Seattle but probably a week or two. We would probably drive over but probably would like a pretty easy drive from where we might stay and the hospital. Haven't lived in a large city in quite a while and would rather not fight the traffic on trips to the hospital. Any ideas regarding shopping (groceries, eating out, etc.)
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I had LE before I started I/L. Don’t think it’s worse, not reall understanding your question.
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I live in Seattle and have been getting my MBC treatment at Harborview hospital. There are several other hospitals here and they are all in the same neighborhood, affectionately known as Pill Hill.
If you come to Seattle any time soon, stay away from rooms in downtown Seattle. It's covid locked up, abandoned, closed. Only homeless on the streets with the occasional riot. The main grocery store in downtown closed permanently last week.
Find rooms centrally located, but EAST of I-5. Airbnb is a great idea and Seattle is full of such accommodations Hotel rates here are outrageous even in a lockdown.
Happy to help with any questions you have. I spend way too much time on Pill Hill.
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Hi Wandering, I am so sorry to hear about your jaw issue. My oncologist and treatment are at Seattle Cancer Care Alliance/University of Washington. SCCA is in Eastlake, just north of downtown Seattle. My surgery was done at UW Medical Center. When I had radiation in 2009 I met people who came from Alaska and Montana and I think that SCCA had some sort of accommodations for patients and their families at that time who had to travel and stay for a few weeks for treatment. Let me and PNW know what specific medical center you are being referred to and we can help you with areas to stay, grocery stores etc. I agree with PNW and would avoid downtown Seattle and Capitol Hill. You should not have an issue finding high speed internet in the greater Seattle area . Happy to help with any questions as well
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Miss Rabbit...so funny!!! 😂
April...sounds like you had a great trip!
Wandering...I'm so sorry you are continuing to have the jaw issues.
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April, your trip sounded wonderful!
MO nurse called this morning to confirm my request for dose reduction with the Ibrance as I called Thursday last week asking for one. MO appt on 10th, MO will call in script but wants to see me first before calling it in. Asked if I was having increased side effects, I said yeah, lots of fatigue, alot more than usual, then she asked if I had pain. I said yep. I'd still like to persue 100mg even they suspect something. Unless scans say different I'm moving forward. I think around November would be next set unless she wants sooner, I had last set in July, wonderful, scans around the time of the election. Whoopie!
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PNW and aprilgirl1: Thanks for the replies. I am waiting to hear back from my oral surgeon in Great Falls, Montana. I think the plan is to have a local guy do a temporary fix until my cancer is under control and then get the bone graft. I am hoping I can get the bone graft done before winter so I don't have to travel in the snow but that is probably out of my control. The oral surgeon mentioned several optional places (Salt Lake City, Denver, Minneapolis). Several are an easy drive but in winter not so much. It will not be a pleasant experience in any case. My oncologist said it was major surgery which is why he does not want me to do that until after I complete chemo. Life is a real struggle for me right now. I am 75 years old and have had MBC for 7 years so I guess the journey has not been too bad and I should be grateful for that. This was not my retirement plan.
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Jackie and RRabbit - my trip was fun, not that I didn't think about MBC but it was a joy to get away from work and home for a bit. I have a serious internal struggle about how much I work...love my job but it is intense....add that to having MBC and how long do I have, feel fine now, how long will that last? I can't really afford to retire, depending on how much time I have. I don't want to wait until I don't feel good to retire.... 56 years old, coming up on my 1 year cancerversary of MBC.... All the same internal dialog we all share.
RRabbit - your gas situation and how you write about them are just a gas for lack of better words! I love your sense of humor.
Wandering - I understand. Makes sense to not travel through snow. Keep us posted on what your oral surgeon has to say. Hang in there.
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aprilgirl1: I was diagnosed when I was 68 and retired. Did really well until the jaw issue came up. 2020 has been hell. I have had MBC for 7 years so you probably have lots of good years left to enjoy yourself and work. Take care of yourself, get a great oncologist, relax and enjoy the quality time and don't worry about not feeling well. There are many great therapies coming up every day so the longer you can feel well and get on with your life the better. Who knows, by the time you are into this thing 7 years, there may be a cure.
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Wandering - I'm sorry about your jaw issue. Hang in there.
Met my MO this afternoon. My CT scan shows NED! It's my off week +1 day, and my ANC is 0.95. CA 15-3 dropped by 21 to 141 while CEA increased slightly (?). Ibrance #10 (125 mg capsule) starts tonight. No rash or mouth sores in sight.
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I had my first appointment with my new MO today. It was interesting, regarding Ibrance. I was just moved down to 100 mg Ibrance because previous team was concerned about low neutrophils in the 600 area throughout the summer. New MO said she generally keeps people at 125 if they can recover in an extra week off. (I had been.). She said there's evidence the lower doses aren't as effective as 125. I didn't want to challenge her, but I've read over and over on BCO that lower doses are as (or almost as?) effective as 125. She wasn't too concerned about my lowered dose because my scans have been stable for quite a while. Another change is that she allows Ibrance restart at “close" to 1,000 neutrophils, where previous MO was a stickler for reaching the number. I've had many two week recovery periods and she was fine with that until the 600s started showing up. Last, the nurse came in to wrap up and said they don't usually call with lab results unless there's a problem. Just go ahead and restart. Previously I was called with ANC number after each set of labs and told whether to start or hold for another week. I think I can adjust, but I'm glad I got the call each time when I was new to everything.
It might sound like I didn't like this MO, but I did. She was very willing to talk and we covered a ton of subjects. And, she used the term NEAD for me, which was not used by my old MO at all. Nice to hear. 😊
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Rosie24 -- Just talked to my MO today and asked if 75 mg of Ibrance is less effective than the higher doses. He told me that dosage amount has nothing to do with effectiveness. I can't remember his explanation but I was glad I asked because I hear so many women on BCO fret about having to lower the dose. I go to the U of Minnesota for treatment so I trust that I am getting good care.
Good luck with your new MO. If they only call if there is a problem with the labs, do you have access to the results on-line?
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Lee, thanks for another confirmation of lower doses being effective. There have been quite a few long-timers here on lower doses so that’s good enough for me. For my first labs under this new MO I hadn’t met her yet or heard their “no news is good news” labs routine. I ended up calling the office for my numbers since I hadn’t heard anything by 4 pm. They were posted a few days later. It’s different than what I’ve been used to but they did tell me to call if I still want them each time. I’m hoping with the dose reduction I have improved neutrophils, but we’ll see
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My wife has been on 75mg for over 2 years now. She very quickly had to go down to that dosage owing to low neutrophil counts.
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I have a couple of questions for those who have been taking the tablets. Do you still have to take the tablets with a meal? Have you noticed any difference s in your wbc counts? Are they worse on the tablets?
I am still taking the capsules and thought about calling CVS to change. I would really like to start taking ibrance at bedtime. Some mentioned they thought the tablets were stronger so I worry it will mess with my counts.
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Simone,
I am taking the tablets. You do not have to take them with a meal. My WBC counts are a slight bit lower, but my MO says that Ibrance SEs are cumulative and my WBC counts are what she says are sufficient to ward off an infection (neutrophils are fine). No idea if the tablets are stronger or not.
Question for everyone: has anyone been watching their eGFR while on Ibrance? I've been on Ibrance now for about a year, and my eGFR rates are starting to bounce around a bit on the low side. Just wondering if anyone else is seeing this? By "a bit" I mean that my numbers, which I think are supposed to be around 60, and which tended to be a bit below that in the 50s, are coming up in the lower 40s some. Last month I remembered to drink a bottle of water before my labs, and my numbers went back up to low 50s. This month I forgot to do that, and they went back down to the 40s. I don't want to manipulate the test but I don't know if this is just a peculiarity that is mine alone.
Thanks.
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I just realized the last two months that my ANC has been above 1.0 both times. I wonder if it's the tablets vs. capsules. The first was 1.15 and second was 1.12. That's the first time they've been above 1.0. Who knows if that's why. I'll see if it happens again this month. My appointment is on the 21st.
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BevJen-My eGFR has also bounced around and has been frequently low during the past year. My MO never seems too worried about it but I assume it is related to Ibrance.
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Hi everyone! Anyone notice significant hair loss on the Ibrance tablets? I switched over from capsules to tablets in July. In August the front area/crown area is so thin. I had a follow up onc appt today, shared my thoughts with onc, she is going to ask the pharmaceutical rep to contact me. She encouraged me to ask the rep if capsules are still an option.
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Hi all.
Latest update on ANC and the on 5 days/ off 2 days schedule....
I am starting week 3 tomorrow and did CBC today---- Drumroll..... ANC 900 today. MO ok with continuing 5/2 schedule with anything over 800.
Next CBC in 2 weeks--- beginning of cycle 34.
Still low numbers but stable. I don't think I will see over 1000 anymore.
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Hair loss, oh my god yes. Mine has gone very sparse and I'm concerned that all of it is going to fall out.
Asked the doc at last appointment if they had any remedies for the hair loss. She kind of grimaced and said to wear it puffed up. Told my daughter about the terse response and daughter said "She saves lives, not hair." I was duly humbled.
But daughter bought me a ton of biotin hair products - shampoo, rinse, emulsions, oil. I also got some biotin tabs and I'm hoping that the biotin treatments at least slow the fallout.
Anybody have suggestions to counter the hair loss?My teeth are coming loose too.
We went to the lawyer last week to draw up wills, end of life arrangements, etc. I discovered that in my state human composting is now an option for burial, so I signed on for it. It's interesting. - https://www.smithsonianmag.com/smart-news/washington-first-state-allow-burial-method-human-composting-180972020/
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westiemom and pnw, my hair loss is significant with capsules and not get any better, the front is worse...
Candy, 🤞🏻for next blood test, seems you new MO is confidence about what she does 👍🏻
PNW, it is interesting to know about the compositing option, I will add it into my arrangement. to be honest I wasn’t big fan of the other 2, better say, scared me..
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Yes, my hair is almost totally gone. I thought it was letrozole. Asked dermatologist about it. He laughed, pointed to his own bald spot. I took that to mean nothing to be done. Some say rogaine helps, but you have to use it forever.
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