Ibrance (Palbociclib)
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Chico— can’t tell you how much hope there is when reading posts like yours where I/L is working for so long. Thanks! And keep sharing those high cycle numbers.
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Good morning and thank you for your kind words. I’m going to take its arrival as a sign to start. It was supposed to have been here last Friday. This way I’m home on bereavement leave and have lots of folks checking on me.
Ive been reading suggestions on things to have on hand to combat side effects. This space got me through chemo 7 years ago with all of the pro tips and tricks to avoid and combat some of the worst side effects.What do I need on hand? My doctor suggested having Imodium, I took advice on this thread and just ordered the mouth rinse and Cank A. What else do you do/keep on hand?
Any advice on routine? Foods or beveragesthat are good or best to avoid?
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sandersmomma- did your Ibrance come in tablet form in a box with 3 weekly dosing packs?
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it’s just a bottle with 21 pills.
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sandersmomma - There are no words that could possibly take your pain away but I hope knowing that you have a group here to support you helps.
I started 125 mg in March and I’m not gonna lie. It was a bit much for my body. Some say this is an easy ride, the easiest med they’ve had to take. Me? Not so much. But not insurmountable. Every body is different but this is my experience. Within the first 2 weeks, I lost 2 toenails, mouth sore, extreme fatigue and weakness, dizzy from low bp (I’m always low and I went lower), hair thinning, loss of appetite and of course neutropenia. When I stepped down to 100 mg, the side effects were MUCH more tolerable. I got my life back. I still have fatigue some days but my bp went back to normal as well as my appetite. No more hair thinning. I have to take care of my nails as two primary fingers which I use expensively gardening started to lift. I still have neutropenia and my RBC are slowly heading south and my platelets have recently taken a plunge. I’m currently taking a 12 day break and then can (hopefully) start 75 mg.The good news is that even though I have never completed a cycle and have taken 14 day break between all cycles, my CA27.29 is going down and yesterday’s PET revealed VERY good results. I saw a side by side comparison of my March PET and yesterday’s. ALL areas of mets are dimmer or smaller - femur, hips, sacrum, spine. Ibrance/Fulvestrant are doing their thing.
Take care and God bless.
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Rabbit- I am so sorry you had a bad MO visit. And after the "mistake" they made. I am PMing you.
Sandersmom- This site is great for emotional support and to learn about Ibrance. My story--- I started with 125mg, but neutropenia dropped me to 75mg within a couple of months. I have been on 75mg since- cycle 31 now. My scans are good. I continue to have issues with my white counts, but still continuing Ibrance for now. The biggie for me is fatigue--any time in the cycle. Yesterday, I was sitting on the floor going thru some files. Weeding out and organizing my home. The wave of fatigue hit. It does that. Woosh. Had to stop what I was doing and lie down. I thought, "Good grief I was just going thru papers, not running a marathon". That is how it is. My hair is thinner, and my nails are brittle. But is that the Letrozole? I have constipation issues-- Letrozole? GERD. Occasional mouth sore-- heals on own. And the "tin-man" aches and pains-Letrozole probably. But.... the cancer is stable. So worth it.
Where is your mets? Not on your profile.
If you have the capsules, then you need to take with food. Some fats in that meal. If you switch to tablets, then can take with or without food. The company is eventually switching all to tablets is the way I understand it. Drink plenty of fluids during the day. I take mine with breakfast---always have. Consistent for me.
Hope this helps. Ask anything.
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sandersmomma— sounds like you have capsules. The key with taking capsule version of Ibrance is to make sure you take with a meal at the same time each day.
Ibrance is starting to come out in tablet form which can be taken without food.
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sandersmomma, I am so sorry for your loss. I can imagine what you are going through. My angel mother passed a month before I diagnosed. But here you have all emotional support and wonderful ladies are here to share their experience. If you complete your signature ladies can help you better.
My experience, I take ibrance and letrozole at night, to manage fatigue. You must know that ibrance does not have a good relationship with grapefruit. And a nice lady here discovered that lime too. My 8th cycle just completed, still a small tumor-growing in my spinal bones, and experiencing hair loss.
Honestly I educated better here compared to information from my MO or pharmacy! (They never informed me about how to take/ side effects/ how to cope with side effects etc) knowing those annoying things are side effects of ibrance, get me a better feeling that they are not related toa new disease!Chico, you are my hope too!
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RRabbit - shame on your medical team for not treating you kindly or giving you more time. Sending you love and support.
Sandersmomma - I am so sorry for your loss, coupled with your dx it's a lot to bear. I started fulvestrant/Ibrance around Thanksgiving and have been pleasantly surprised at how "normal" I feel. My white blood count has taken a hit so I was lowered to 100 mg after a few months and may go down to 75 mg (just had a blood test this morning). I would really like to be on Ibrance long term like many on this thread have been. I did have a couple of mouth sores the first cycle. I have learned so much from the helpful and supportive women / caretakers on this thread and know that you will find support here.
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sandersmom - I am so sorry for your sudden loss on top of MBC. I'm in my off week before starting cycle 8 at 125 mg. I have fatigue and low blood counts. I had mouth sores initially, but haven't had them lately. My MO told me that Ibrance exacerbates side effects of other meds like AIs. I had some soreness in my fingers from AI that increased when I started Ibrance. Fortunately that's gone as well. Drink lots of fluids.
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Thank you for sharing. How does one deal with nail loss? I had Taxol when I did chemo 7 years ago and did not experience that. I got the impression that made my dr optimistic that won’t happen with this then. Of course nothing is for sure either way.
I had learned during chemo that cryotherapy was good for preventing those kids of issues, but obviously not an option for this since your are taking it constantly. Are there any known tricks for trying to beat that? What do do if you lose them? Just deal with it?
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I've never had IV chemo, but once I take the pills in the morning thats it, I don't really notice any side effects (other than fatigue on certain days in the cycle, and creaky joints). I don't have hair loss and my nails look the same as before. This isn't anywhere near as bad as what can happen on chemo, so try not to worry too much.
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sandersmomma, sorry for your loss. I can’t imagine how you feel. I’m glad you found us. This is a great group of ladies. Everyone is so supportive and willing to help if possible. I think I am on my 19th cycle, I lost track, but what I have noticed is the SEs get better as you go. I no longer get mouth sores. There are a couple of mouth washes your MO can prescribe or over the counterones that help. My hair has thinned, but I have found that taking 1000mg of biotin helps. Fatigue is probably the worst SE for me.
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I had AC and T as well with no nail loss. I have one thumbnail that tends to split. It started after I finished chemo. During chemo I used vitamin E oil on my nailbeds, but stopped shortly after. Now I keep my nails short and use lots of lotion to stop the nail from splitting. My skin is more dry since starting Exemestane. Ibrance and Xgeva makes it worse. So recommend liquids and lotion.
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Re nails: I use biotin nail strength polish for $4 at Walmart 2-3 x per week. Plus I take a biotin supplement (gummies). So far it’s been helping my nails. Slight hair thinning around the forehead area. I use keranique hair products which have helped. So hanging in on cycle 11. Good luck. Sorry for your loss.
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RadagastRab...just butting in to your conversation, but my MO and the PennState Center helped me get on a Program with Pfizer. They manufacture Ibrance. Took a bit of paperwork , but since my co-pay for Ibrance was $2,000 per month, it was worth a bit of hassle.
Not sure if your co-pay is that high, but maybe it’s another option for you. Good Luck
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Sandersmomma,
I’m sorry you find yourself here again and for your recent loss of your husband. Two very difficult things in a short time. 💕 Im sure your 13 year old is a way to keep you moving forward while you’re dealing with shock and sadness.
I hope you’ll have a tolerable start to ibrance and the AI (letrozole?). I didn’t and don’t find it too rough at all. The idea that it’s working against the cancer makes me willing to accept some of the side effects mentioned above. I don’t have any nail issues and just occasional mouth sores. The joint pain/stiffness is probably my biggest issue. There are many of us here to try to help you in whatever way we can0 -
Thanks for the help with the mouth sore stuff.
Sandersmomma-- I am on my first cycle of Ibrance, so pretty much where you are. Im in week 3. Ive had minor issues, none constant. Funny stomach in the morning, a bout of fatigue here and there, the mouth stuff. Ive been doing a swish frequently with the salt/baking soda/water wash. And will try ones mentioned above. I also have started the Faslodex shots. I'm so sorry for your loss, and your son's. Hang in there.
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I had a severe allergic reaction to taxotere, lost every finger and toe nail. They just popped off. I was so sick from the reaction the only thing I really remember is not being able to scratch an itch. Been on I/L about a year, nails are fine.
Do get occasional mouth sores, but wonder if they aren’t from me not paying close attention to my power toothbrush.
So far, se’s are mild, much easier than IV chemo. Some could be age too. All doable.
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sandersmomma, I'm so sorry for your loss on top of what your going through. You'll find a home on this thread
mac - thank you so much for the info! I will definitely tuck that away! Things were able to be worked out and everything got re-instated. I think when I first got it prescribed they signed me up for something that covers the co-pay so currently and previously I paid nothing out of pocket.
Regarding nails. A couple of my toe nails rotated turning black off and on a few months after I finished Taxol March 2019. It sorta resolved itself but it was interesting to look down and say "Oh, there goes another one". Haven't had issues with nails with the Ibrance, i've been at 125mg and am on my last week of cycle 8. I think the mildness I've experienced thus far might be tied to my age, I'm 38 but I don't know. I thought I'd do worse on it because I was pretty fresh off AC-T chemo so my marrow had already gotten a pretty good workout. Certain symptoms were worse in the beginning cycles - mouth sores, dry mouth etc. I am finding fatigue more of an issue as I go on. I'll spare everyone my gas adventures for now
I have lost and gained my eyelashes a few times tho. It's always a mystery when I put my mascara on if I have anything to enhance Zometa I got yesterday has me wiped out today. I've been a lump all day, it's too hot to tend my yard, plus I hurt today. I'm content to be a lump, just for today
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Candy, big yay! Back on track! I'm so happy for you!
Sandersmomma, I don't have the words. I can only send you virtual hugs. And perhaps a little hope. My twins were 14 and had just started high school when I was diagnosed. I was heartbroken thinging about everything I assumed I would miss! But here I am – they graduated in June and turned 18 on Wednesday! My side effects have often been slightly annoying (fatigue, slight hair loss, watery eye) but never took me away from fully engaging in their lives.
My Liver Failure Update #2: There was a fierce debate between doctors as to whether I should be discharged from the hospital or stay and undergo more testing. I chose to exit on Monday (I live just a few blocks away) and go back and forth for outpatient testing on Tuesday and Wednesday. I met with my MO yesterday for results. Blood readings slowly getting better but far from normal. But a happy surprise -- MRI of my liver still clear! (Talk about scanxiety!!!)
The working theory among four of the five doctors who are trying to figure this out is that that the Ibrance, after 42 cycles, is now the cause. Once again, I need to hold.
I'll tell you one thing – I ain't leaving this board anytime soon – no matter what they decide!
Hugs, Penny
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Great to see you back Penny and with mostly good news. You sound strong and in control. I hope you can stay on Ibrance. Please keep us in the loop and keep fighting. X
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Good morning ladies!
Penny - So glad the MRI results were good. Keep on chugging!
Sandersmom - I think the nail issue I had is NOT typical of Ibrance but it was crazy that it happened after only 14 days on 125. The first two nails to pop off also fell off when I was on Taxol and never grew back quite right. Maybe they were more susceptible because they were already damaged to some extent. I use glue on fake nails by KISS and nobody knows. I don’t know why two fingernails started to lift. That happened just a couple of weeks back but I do not see them getting worse. Maybe my body just can’t repair the damage done by gardening fast enough.
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Penny, I am so happy to see your update! So happy for the MRI results but my goodness on the back and forth trying to figure out the liver enzyme issue. Whatever is decided "You shall not leave this thread!" *thuds Gandalf stick on the ground*
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Penny - Great news on the MRI!
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Cross posting but kind of along the lines about fatigue with Ibrance use. I assume that it is from the Ibrance.
Today I got up at 6am. Did some small stuff around the house. Went and got gas in truck and went to pick up Walmart groceries at curbside pick up. Home to put up groceries. Now noon and feeling like need a nap. I just wear out so easily anymore. Frustrating. My RBC's are ok--slightly low but not bad--3.63, range 3.93-5.22. Hemoglobin 10.6, range 11.2-15.7.
Just tired of feeling tired.
Monday is the second opinion appointment at the larger cancer center. Dread the 2 hour drive, then appointment, then 2 hours back home. I am going to be wiped out after that day. I wonder if I am up to the trip each time, if I would transfer care to them. I hope I do not have to go there every whipstitch-- labs, etc. I do not want to deal with a whole day of travel for just the small stuff. And when I get worse it will be doubly bad. Just a lot to consider. A lot on my mind.
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Candy, I hate driving, too, and find it exhausting. Still, this is pretty important. As far as the future, consider these three things: First, if you go somewhere to get really good care, you may feel better for longer. Second, next year we should have a vaccine for covid and you can safely use a driver. ACS has a program where volunteers will take cancer patients to appointments, or if they don’t have anyone for you they will pay for some ride service expenses. Third, I would choose to do what is best for me right now. In the future things might be different. For example, a good oncologist may become available closer to your home. That’s my 3 cents.
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sidney2013 - mouth sores. I've been taking 125 mg since Sept 2019. Occasionally get mouth sores. salt water gargle really helps, and I should probably do it daily as prevention rather than using it when I feel mouth sores. Diet and hydration is also really important. Harder to pay attention to these days, but try to keep up those good habits. I think sugar can make things worse.
Rabbit - sorry to hear that last visit was not good and that you were not treated well . Hope it was just a temporary symptom of the "times" - maybe everyone is getting stressed out. sometimes I feel like the lymphatic therapist I see is distracted. When we talk it sounds like she has had to take on the role of being the captain of a household of adults. I ran across a greeting card in my box of them that remind me of your avatar, bunnies running in a pastoral setting.
Sandrasmomma - so sorry to hear of your loss. You and your son need one another more than ever. Sending you a virtual hug. Sounds like you are taking the capsule form - is it labeled take with food? If so, food is very important. The problem is, they don't really give any guidelines and your DR probably didn't either. If you can struggle through the fine print a study is mentioned comparing fasting and 3 levels of food/meals. The highest calorie and fat did the best for adsorption. You will probably be switched to tablet, I think that is what is being made now, which does not require food. I just finished my first box of tablets.It was capsules until now. Started Ibrance Sept 2019. I think I get a little more indigestion/gas with the tablets than with capsules. SEs - fatigue is the big one for me. Sometimes mouth sores, salt water gargling really helps. I mentioned hair thinning to MO, but she thinks Arimidex is the cause.
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sandersmomma sorry for your loss. I hope your son is doing ok? I just wanted you to know that I had taxol taxotere and adrymicin several years ago. Now I have ibrance the comparison to SE’s is night and day. For me each month was different but never “chemo” terrible, if that makes sense. I didn’t really recognize too many SE’s in the beginning bc I was waiting for the worst. I think you will mostly find people on ibrance grateful for the ease of taking a pill-not infusion, hair thinning not balding, farts not diarrhea. And then many stay on the ibrance treatment for years. Some people still work others find hobbies and travel once they figure out how to live with this treatment. Take care.
Tanya
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Sandersmomma , been praying for you and your son. I don’t come on here often but miss it when I don’t.! However I do go back to where I left off and pray in between for everyone. Stay in touch, please, we all truly care for each other.
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