Ibrance (Palbociclib)
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Sondra, My MO was happy enough that I called myself an occasional drinker on her checklist. She said that too much alcohol can affect our counts, and I don’t want to make things worse there, as my ANC is often below 1 already. I do have a drink now and then. Good luck with the adjustment to this treatment. My worst issue was some lightheadedness and queasiness early on, which snacks and more water seemed to help.
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Sondra. I drink 2 cups of coffee with light cream every morning. My DH makes it and brings it to me while I am still in bed. So..not giving up on that special QOL for me.
I have cut way down on my wine drinking, just on special occasions or when we have guests over for dinner, maybe 2-4 glasses/month. My DH does not drink, so that makes it much easier. My MO suggested no more than one glass of wine per day. I find it interesting that one MO recommended alcohol during the Ibrance off week. That is when I feel the crappiest and most fatigued.
In saying that, just recently, I had 4 adult house guests for 5 days and I did indulge in one Moscow Mule, one Kahlua in coffee, sake tastings, one Mimosa and two glasses of red wine (very small pours) during those 5 days. I have not done that in 3 years!!! Lordy. It was fun and I felt normal with no cancer grim reaper sitting on my shoulder judging me.
So, just consult with your MO as we are all different with our meds/supplements that we take in addition to our treatments.
No interest in desserts, but I can eat Doritoes and salsa at every meal. Ha.
S
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Whoa - thanks everyone! We ordered some decaf tonight as I mostly miss the 'heaviness' of coffee compared to the mint tea I've been having as replacement. Its such a ritual, though,to enjoy a cup of coffee in the morning, particularly on weekends. I'll see how this month goes and then consider if I can reintroduce quarter or half caf (or maybe full even). It perks me up and keeps the works flowing and just sets me up for the day.
Alcohol I am far less worried about as I stopped drinking beer a few years ago and was never a big wine drinker. Cocktails were my game but I had phased a lot of them out pre-diagnosis due to sugar levels. But at Christmas a little splotch of Baileys in the coffee or a brunch mimosa has always been on the menu - Ill check with the MO.
We did go to the pub today so I could get back to interacting with society (and see this years crazy Christmas decorations), and it was no big deal to sit there with my lemonade while partner had a Guinness (I may have had a sip). Most people are respectful of the 'can't drink due to meds' statement, and its unlikely they will remember just how long you've been saying that line!
Otherwise doing ok so far other than some diarrhea, but suspect that is mostly due to side effects from the pelvic rads.
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jaycee49, thank you for the reply to my question. I will read through the topics on the link you attached. I’m hoping I will be able to switch over to the generic femera and not notice more SE and still be as effective. I don’t know the company that my mail order pharmacy uses. I’ll have to look into that as it sounds like that can also make a difference in quality. Wishing you many more months on I/L!
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I also drink 1 -2 cups coffee, I was never told not to. When dx stage 2, I stopped alcohol - (I was a light drinker, surely I am not the only one?!) exercised, ate well - did all the right stuff and within 6 months was stage 4 (2 years ago end of November). I asked my MO about alcohol and he said his first priority is my longevity, then quality of life is important so, alcohol is permitted (the cancer is going nowhere fast anyway). I do have a few beer during the week if I feel like it, though not recently. I am off to Mexico Monday for a week long All Inclusive holiday, so will probably imbibe there, and hopefully sweat it out. I have been stable since November 2017. Go with your body and do what feels right for you, and listen to your MO!
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GinnyO2 - In answer to your question I have bone mets (spine, ribs, and arm). I take Femara for the Letrozole. I had side effects from the generic Letrozole.
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I drink 1 to 3 cups of coffee or capuccino every day and continue to enjoy a drink on mostly a weekly basis. When I drink it's either compari and seltzer, wine, or one margarita in the warmer months. My MO was okay with alcohol, but definitely discourages hard alcohol on the regular, for as long as the beast is still only in my bones. I worry about the alcohol every now and then but I really only drink 1 to 2 x a week at most so I think I'm okay. My counts have always been very good.
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jensgotthis - I am glad I am not the only 'tippler', and I am a beer drinker, here and there
though as stated above, I may over indulge in Mexico this week. I too am bones only, and will do everything I can to keep it that way. Here's to health, happiness, and years of stability to all! Adios for the next week or so...0 -
Have fun in Mexico janky!
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SondraF - With rare exceptions, for the past 40 years I've drunk coffee/espresso. Probably not as much now as in years past, but mostly becauseI usually do not want any more after 2 mugs. I pretty much stopped the foofoo coffee drinks several years ago, because I found I was enjoying them less and less, and did not want all that sugar. I stopped alcohol several months ago, and I think I sleep better. I do miss my wine with dinner. It is usually too cold for beer. But I do find myself opting out of going for pizza, because beer tastes so good with it - also don't need all that cheese and carbs. Just finished cycle 2 and am on days off. Start cycle 3 in a couple of days.
Ibrance users - what kinds of monitoring/imaging does your DR do to guage the effectiveness Ibrance as well as how it is affecting your health? In another month or so ( so sometime after cycle 3?) mine wants to do another PET scan if insurance will approve/pay, if not, than I think an Ultra sound. The hope is to shrink the tumor so that surgery is easier and maybe even shrink it into oblivion. She has also talked about radiation depending on the results of the Ibrance. Blood tests are done to monitor WBC/RBC, they are down, but not alarmingly to the DR. The tumor is causing lymphedema on the opposite side from where surgery was done a couple of years ago. I was seeing a therapist, but she felt it would not help until the tumor was dealt with. Swelling has not gone down, so I'm wondering if the Ibrance is working. I do daily lymphatic massage, as well as wearing sleeve/glove.
Lots of supplements, Exercise regularly
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
Swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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I'm enjoying a half cup of coffee this morning and already feel much perkier//productive than the last few days.
BlueGirl - for me they are doing the blood monitoring and Ill get thrown into some scanners (MRI and CT as well I imagine) in three months and every three months afterwards until it becomes feasible to go to a longer interval.
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Anewbreath, Jaycee is correct - active ingredients in Femara and its generic (Letrozole) are the same. Fillers, binders, dyes - they can all be different, so the drug will work the same, but side effects may be different, and will vary depending on the patient. I had terrible flatulence on the Breckenridge brand, and Accord is the only brand I'll use (my pharmacy now knows not to switch me again!). I have a dear friend, though, who swears by the Breckenridge, and that's the only brand she'll take, because she was getting terrible headaches with Accord and one other that I can't remember... so go ahead and get the generic, but keep an eye on any new side effects!
I had mentioned in the earlier threads that I remembered reading a discussion somewhere about experiences with different brands, but couldn't find it. Well, in between, I located it - it's just personal anecdotes about what people liked and didn't like about their brands, but it's an interesting read (just note it's ordered most recent first, so start at the bottom of the second page, LOL):
https://forum.breastcancernow.org/t5/Hormone-therapy/Brand-of-Letrozole/td-p/1129877
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Sondra...I have a cup of caffeinated coffee every morning and sometimes another throughout the day. I don't drink much alcohol now, but I still have an occasional glass of wine or an occasional cocktail. Sometimes I wish I could just relax and get a good ol' buzz on, but we do what we gotta do.
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hi everyone!
been a little while since I’ve posted (for me!).
Just checking in and saying hi. Stomachs been a little funky since yesterday for some reason. Not much of an appetite and weird BMs.
I drink one cup of coffee with half n half every morning, unless I am sick then I drink tea with no dairy.
I also drink a cocktail or wine maybe once or twice a week. I used to drink more but now I stop after 1 drink. I just hate the way I feel the next day, even after 2! Plus I don’t like mixing alcohol and MM, it just really makes me wonky.
I think when I feel not great like the past couple days it brings my mental moral down a bit.
Pat thanks for pointing out the posted with 76 Ibrance cycles under their belt! That is so moral boosting!!
Hugs to all,
Phill
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Hi everyone. I cut out coffee when I started on Letrozole because the drug seemed to make me extremely sensitive to caffeine. I hate having insomnia but if it doesn't affect you that way I would continue having a cup or two a day. I've switched to decaf which took some getting used to. Today I'm going to try making my own pour-over. As far as alcohol-I used to have 5-7 drinks a week. I quit cold turkey once I was diagnosed because I don't think I have the discipline to just have an occasional beer, glass of wine or champagne. I used to have at least two drinks when I went out-I admire those of you who can cut yourself off after one! But now after 3 years, I've gotten used to not drinking and have to admit that for me, I feel better.
I had a wonderful Thanksgiving weekend. I cooked dinner for my brother and his girlfriend. I did feel "blessed" because when I was working I usually felt too stressed to host one of the holidays. Then I snagged some great Black Friday deals, read a mystery, had coffee with a friend, worshiped on Sunday and then enjoyed a really nice Christmas lunch with a new group of ladies. So even though cancer itself is certainly not a blessing-I feel blessed with being able to be retired and having time to enjoy life. Wishing everyone some joy this week. Also-I did start an MSM supplement and the pain in my feet has disappeared! Worth a try-see the MSM thread for Philly's research on its impact.
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Chicagoan, I am allergic to sulfa drugs so I need to avoid MSM. I am making this note in case someone else is allergic and doesn't catch it.
My Letrozole is also from the Accord brand and I am doing ok on it.
Today I am meeting my half-brother for the first time. He discovered me on the ancestry.com site. Won't go into it, but there is no doubt. Should be interesting as he also has breast cancer...
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into the light exciting ancestry find! My mom found a half sibling but they wouldn’t acknowledge through email messages etc. sad for mom 86 only chance to find out anything about her father. Moms had a wonderful life and we respect the relatives privacy. Have met a nephew and hidden grandson and slews of disconnected family.
Tanya
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Intolight-Good catch about the sulfa issue. I didn't even think about that.
I hope things go well as you meet your half-brother. I have also discovered two half-brothers on Ancestry. We have talked on the phone and emailed but haven't met in person. They are full brothers and each live quite a distance from me. I feel a little ambivalent about meeting them-especially after one (who has no filter) said to me that he and a cousin were wondering if I had money! Kind of a turn-off so I have more or less ghosted them.
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A belated — but no less exuberant— YIPPEE for Karen!
Rabbit, my scalp burned like the dickens off and on starting a few months after my companion drug was changed from anastrozole to Letrozole. (That's when many of my weird side effects kicked in.). The burning did mostly subside after enduring the sporadic episodes for about 3 months.
Just an FYI hair thinning was also one of those side effects. However that did slow down and mostly reverse too. Except for my eyebrows I'm almost back to my normal thivkness
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Ciaci and others that chimed in😊. Thank you for all the information you shared on femera! Just a wealth of information here that you can’t find anywhere else. I’m so happy to read that the potency of femera is the same in generic brands. Since the femera(AI) allows the ibrance to work longer/better that could be an issue if the purity of femera was different in different brands. I then wonder why they even have to put in fillers in the drugs? Doesn’t that just cost more money and side effects? Interesting.... today I called my mail order and they allowed me to have a 90 day fill before the year ends of branded femera. I was so excited I forgot to ask who the generic brand is that they carry and does it change frequently? If I can request a certain one? For now, I will just be thankful to stay one ibrance long enough to ask those questions. Prayers for all of us
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Saw the Onc today to receive results from last Fri Pet Scan. Everything was good except for my lung issue. I have fluid in lung but it has increased. She is going to wait and see what happens with the next scan before changing medication from Letrosol (?) to Faslodex. She said tumor markers had not significantly changed and that is why the wait and see. Also my immune counts were low and I have to wait one more week before resuming Ibrance. This is the first time in 3 1/2 yrs that has happen.0
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Hello, it has been quite some time that I have posted anything but have been reading and trying to keep up with this thread. I am going on 10 years as a breast cancer survivor. I was at first considered NED after 3 years. Then I felt a lump on the top part of my sternum and ct scans, pet scan and a biopsy the breast cancer had returned to the lump (lymph node) a small soft tissue nodule beside the removed biopsy and then one node behind the chest wall. I was then started on Faslodex and had great success with this for almost 6 years, however the one lump still on top of my sternum began increasing in size so I did 16 treatments of radiation, I did not have radiation on the original diagnosis as i actually had 3 primary cancers at the same time (breast, lung, and kidney, very rare to have 3 primaries but I am I guess the rare bird.) As I had to have so many surgeries back to back and also do 4 cycles of IV Chemo the doctors did not think I would be able to go thru radiation also. Anyway, the radiation I am happy to say has made the mass shrink almost completely. I was also put on Ibrance, and Xgeva about 4 months after radiation. In between the radiation and starting the Ibrance, Xgeva, I had to have my bottom teeth removed and got dentures. After a year of taking these meds and 5 months after radiation I developed a couple of mouth sores. I thought it was because of the dentures and so I decided to only wear them on a limited basis. I was using baking soda and salt water to rinse my mouth but that did not seem to help heal the sores. I have an appointment with my MO on Friday and I think I may have ONJ (osteonecrosis of the jaw). Has anyone on this thread had this problem. I was very careful to make sure that my dentures was clean but have been reading that when you have a soft liner denture( which is what they do for the first year, (was suppose to get the hard liner two weeks ago but was afraid to go back to have this fitted due to the sores in my mouth) anyway no one tells you that soft liners will get bacterial underneath them. At this point the spots are not very big but do see bone and if that is the case I will be referred to an oral surgeon. I also understand if this is ONJ it is difficult to treat. Does anyone have this and what were the outcome of your treatment? I know this quite long and I appreciate any feed back. Thanks
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Hey all, 5 days until my week off on Cycle 2. My pain level in my upper and lower spine where some of my Mets are have been on steady rise upwards since diagnosis. It’s now to the point However walking, is slow, hard and painful. I have a high pain threshold, took nothing for mastectomy or oophorectomy. But it’s awful now. Just trekking through mild snow to get to the car yesterday to get my MO appt had me in tears and yelping. Once I was in the car I had a mini meltdown. I thought of that scene in Dune where Kyle Maclachlan’s character had to put his hand in a box to experience different levels of pain and at one point he screamed “The pain!!”, I almost did that, it frightened me what I’m in for pain wise. I told my MO I was worried Ibrance was failing. We are doing MRI of the spine today at 2 and then I see her the following day. Radiation is being talked about possibly to give things more time to work and give me relief depending on how many are giving me issue, I know I’m pretty loaded in thoracic and lumbar spine, wonder how much can be done or what’s happened.
MO is instructing me to stay with Ibrance combo for now until I see her again. I know she wants to get me to 3 or 4 months on and then make the call, I’d like to do that, it’s a tolerable drug for me. Hope my body cooperates with that pain wise. In the tube today for quite some time at 2. Ativan will be on board and I’m hoping for good music in the headphones today.
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RadagastRab....hang in there....my pain level in the beginning was pretty bad. I know some of the people here use acupuncture to help.0
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Airlinegal-That sounds kind of unnerving to have your lung fluid increase-let's hope it is some fluke and drops back down since your tumor markers are stable.
Tigerfan-Maybe post on the Xgeva thread too if no one responds here. Your mouth issues sound painful and it must be hard to eat.
RRabbit-Good luck with your MRI today-your pain sounds excrutiating and I hope you can get relief soon through radiation or something else.
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Radagasrabbit I'm praying for an easy time in MRI and relief from pain.
Tiger there was a lot of info in this thread a few people were talking about ONJ on this thread. I think you can search for it and find the exact conversation.
Airlinegal I hope your lung issues are easily resolved. I take faslodex with my ibrance. It's a long needle and some soreness afterwards but also is manageable.
take care allTanya
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Arlinegal...praying your lung issue resolves. Keep us posted.
Tiger...I too think it would be helpful to check out the Xgeva thread. There is an active convo regarding your issue now.
Miss Rabbit...my thoughts and prayers will be with you today.
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RRabbit, I too have been praying for you today. I can’t fathom your pain! 😢
Arlinegal, praying for you too and that the docs have wisdom in their decisions. Hope this little break will help bring the blood numbers up far enough to fight off the issue.Pray we all experience peace, comfort, energy and love today.
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Hey all.
What is the mouth sores with Ibrance like??
I have been on Ibrance for 2 years. The past month I have had a couple of fluid filled blisters on the inside of my bottom lip that were sore. And today I have a sore on the side of my tongue-painful. I do not remember biting my tongue. I could have and just don't remember it. Is the mouth sores with Ibrance use like this? Just 1 here or there and not often.
Maybe just bites or burns with food and nothing to do with the cancer treatment. Our minds always go to the cancer when we have issues. LOL.
Thanks.
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Hi candy-678, oh the weirdness of Ibrance! When I started on Ibrance I had awful sores on the side of my tongue which I got each month for 15 months , they are not as bad now and I don't get them every month! Then this morning I woke up with a blister on inner ,lower lip and I am currently on my 'week off'. Magic mouthwash available from your medical team has been recommended, this link may help.
I now have increased hair loss, which started after 17 months!! Regularly reading this site and hearing of other people's experiences of side effects has helped me cope with what Ibrance has thrown at me.
airlinegal, three and half years on Ibrance, wow, long may it continue to work for you and us all.
I have been on Faslodex since beginning Ibrance. I don't suffer any pain ,just a little tenderness if I touch the injection site. If you do change over , the nurses who give the injections need to be well trained: you may need to remind them to warm the fluid to room temperature and to take a long time and inject as slowly as they can. If you feel any pain as they inject you, keep telling them to slow down. Nobody needs any additional unnecessary suffering.
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