Ibrance (Palbociclib)
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BevJen - let us know how it goes and I am sending you all the best for the Keytruda treatment.
Jaycee - that is chilling AND my docs don't seem to communicate with each other, either .
Katrose - in your pocket for 1/20 scan!
RRabbit - hope your appt and zometa infusion were both painless and good.
Update on my petscan yesterday. I asked my "team" to call me with any results - petscan was at 9am (check in at 7am ). I got the call at 4:59pm from a nurse that the preliminary report was no uptake in FDG noted. She was reading notes to me and I am pretty sure she said "No evidence of active disease" but also said this is preliminary and my oncologist will review it at our appt on Monday. Of course, the report is "locked" and won't be in my online medical chart until after my oncologist meeting but I am relieved and so very thankful for Ibrance, Fulvestrant and science. I had my first NEAD pet in June, same in September and looks like i have NEAD still.
Sending you all good vibes for a great weekend!
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Aprilgirl- Sounding good!!!! Of course, you need to hear final report from MO, but WOOHOO.
Where is RK2020????? She had MO appt before Christmas and no word. Unless I missed it.
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aprilgirl, wooooo!! So happy for you. Day after the Zometa, feel like I got hit by a truck but I'll be better tomorrow, usually takes a day or 2 afterwards to bounce back.
Where is RK, Ciaci, Philly, etc? Checkin ladies if you can, your missed
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Bev Jen all the best on your new treatment plan. I am one of those rare girls that A/A works on. Shrinkage in first 3 months. But it's dropped my hemo to 10. Neve been under 11.5 in over 3 years. Only other side effect is extreme muscle aches, heating pad helps alot. The reason I'm telling you all about my treatment is cause there isn't a soul on A/A page
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Snooky- I am glad it is still working for you. so far my easiest therapy-
Cheers!!
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Hi All
Hope you are all ok
Any info on what to expect with Ibrance and Falsodex would be extremely welcome good or not so good
I will be starting these within a few days and I wonder if taking at night or morning is better just some things you have experienced and how you dealt with themI really am dreading this bunch of meds
Keep well
Ann
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Hi Ann,
These drugs are excellent, you might need to eventually reduce the dose of Ibrance due to low neutrophils, but in the beginning expect a lot of fatigue that will dissipate quite a bit as your body adjusts. Are your mets only in the mediastinal node? In this case radiation could be really effective also..
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Thankyou for the iinfo.
As far as I know it’s only in the mediastinal nodes but things get lost in translation . My report is in Greek but that’s what it appears to be. I am fairly confident that everything possible is being done because we have good doctors here but not so good nursing
He mentioned radiation but it’s too near the heart and big vessels for now- will see how it goes as he said ...
Drugs have been approved do now have to psych myself up to this fuckfest. Sorry if I offend
Warm hugs
Anna
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Annadou,
You should review as much of this thread as you can -- especially look at the beginning -- there are a lot of tips here from people who have bee on these drugs. They are very powerful and good for most people. For me (I've been on Ibrance and faslodex for about 18 months) the most common side effects I've had are fatigue (no predictability on that), stuffiness like a head cold some of the time, some bloody discharge some months from my nose, some nausea (again, no rhyme or reason to when) and some appetite changes. These are all manageable.
Good luck to you.
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Hi Ann,
I used to get bad mouth sores. There is a mouthwash you can get a prescription for which will help with those. Those will diminish as your body gets use to the meds. It's been 2 years on I\F for me now and the only SE that I have now is fatigue.
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Ann,
Welcome to our Ibrance dance although I'm sure you would rather not be here. I've been on Ibrance for over 4 years and love it! The first few months were hard, as others noted-my hair thinned, I was very tired and my skin was quite sensitive. Now I barely notice that I am taking a drug. I have been able to stay at 125 mg the entire time and feel very good.
My tips for new users:
1. Drink lots of water-try for 72 oz a day.
2. Exercise as vigorously as you are able-outdoors if possible. Also incorporate yoga/stretching.
3. Eat Greek Yoghurt to help protect your mouth from sores and keep your stomach healthy (this tip is stolen from our beloved PatMcG). You have an edge here living in Greece!
4. Try to get lots of sleep at night-consider giving up caffeine and alcohol to help with this. Take naps only on days when you are exhausted.
I was very worried about starting Ibrance too but it has been a life giving drug for me.
Best wishes!
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Annadou,
Welcome to the Ibrance thread, I am glad you found us. I was dx with stage IV breast cancer in my superclavical node(s), mediastinal nodes and a few other nodes in my chest. So far, no mets in bones/organs. I have been on Ibrance and Fulvestrant for a bit over a year (started in November 2019). Like Cureious mentioned, it is common to have the Ibrance dose reduced due to low neutrophils at the end of a cycle. I just started on 75 mg last night (cycle 14 or 15?) It seems that every couple of months I needed to take an additional week off between cycles to allow my neutrophils to come back up and start a new cycle.
I did consult with a Radiation Oncologist when I was dx and their opinion was that radiation was not a good option due to the locations of the nodes, similar to what you have heard. I have received a petscan every 3 months since starting (first pet was technically 4 months after starting Ibrance/Faslodex). My petscans have shown no evidence of active disease and no FDG uptake since my June of 2020 petscan. I know this won't last forever but I am extremely thankful that I am responding well.
Side effects: In my case, I have had minimal side effects and feel really good. Initially, I did have a couple of mouth sores (like canker sores) and mouth wash helped. I did have fatigue. I contribute some of the fatigue to symptoms from my cancer and I felt really, really sick. I had no voice (paralyzed vocal cord from lymph nodes, and a significant pressure on my windpipe that made it hard to sleep). As I started treatment, these symptoms started to go away which helped me sleep better and also helped me emotionally. On the 125 mg I had some constipation, which is unusual for me. It was less on 100mg, as was the fatigue. Every cycle is a bit different. I had constipation one month, but didn't have it again for 3 months. So it is hard to say if it is Ibrance, Faslodex or ? I have lost hair - not sure which med is to blame. Normally I have very thick hair. I can tell it is thinner due to seeing it all over my floors (ha) and when I put my hair in a pony tail I have to wrap the rubber band 3 or 4 times when normally I could barely wrap it twice. My hair stylist has also noticed. I don't think the average person would think my hair is thinning but I sure can tell.
I work full time. I am self employed (residential real estate broker) and I was initially concerned if I could continue to work, would I feel ok etc. I am happy that it has not been an issue and for me work is a good distraction. I can set my own hours but selling real estate is not a 9 to 5 job and I consistently worked more than 40 hours a week. I have been selling for 10 years and ironically, 2020 was my best/highest amount of sales to date.
Keep in touch, definitely read through this thread and don't hesitate to reach out. I have so much gratitude to all who have helped me as I started this treatment and continue to help me as we all navigate our cancer treatments and life.
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If you can find Colgate Peroxyl in a pharmacy that works real well on those mouth sores.
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Nkb, you are correct very easy therapy. I will find out Fri. if it's still working. Best to you
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Thankyou all for taking the time to reply
I get the first injections tomorrow after an ECG and triplex which I presume will be ok and will become an “Ibrancer “on Monday
All of your experiences and comments are helpful
SondraF
I too am a Brit but just changed to Irish nationality so that I can be an EU citizen here in Greece and avoid a whole bunch of admin that will be created with Brexit
I see that things are getting very serious in the Uk and USA with COVID-19 I do hope you are all coping and staying safe I asked my oncologist if I should have the vaccine and his reply was there is no protocol atm for my situation
Best wishes to you all
Anna
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Anna - ah, was wondering as your English was very good, although I know plenty of Greeks with excellent english. Actually I am an American in the UK, but here under EU rules (Swedish partner), so we can at least get out when its time to go. No faith at all in this goverment!
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Has anyone ever experienced a rash on chest that may or may not be related to the various drugs, or surgery? Maybe something going on with lymphedema on that side? Radiation was on left side (opposite side) 11 years ago, so it is probably not radiation. Have been taking Ibrance, on cycle 17, and Arimidex. Had bilateral in 2016 for cancer on left side, 2 nodes removed on left, negative. The left side healed a lot better than the right side. I am now fighting a "new" cancer in the R-axilla. The CT 12 days ago identified a "thickening" in R-axialla, but did not say anything about the tumor. There is definitely thickening shoulder area and neck with a loss in range of motion, but no pain. Oncologist had me see a dermitologist for punch biopsy last week, waiting for results. I am worried and scared. have been fighting this cancer for 11 years. It is BC 3. I have one of those "bucket list" trips, rafting the Colorado through the Grand Canyon planned for April and will not let cancer or any treatment plan interfere. Last year's trip was cancelled because of Covid.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
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. 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.
2019 ER+ R-axilla. This presented itself as swelling in right arm. Ultrasound found lost of fluid but no clot, referred to lymphaphic therapist who immediately recognized that something was very wrong since on opposite side of node removal. Cancer Dx'd after more imaging and biopsy. PET showed no metastasis. Started Ibrance and Arimidex. At first regular CTs suggested tumor shrinking, but it get very confusing. Seeing lymphatic therapist and using pump. Could pump spread cancer through lymph system?
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BlueGirl - is it an actual "rash"? The reason that I ask is that my recurrence of cancer was diagnosed with a punch biopsy of my collarbone on the side I had cancer the first time. I did not have a rash but rather a lot of swelling and some pain. I thought it was related to the lymphedema getting worse on that side and yes, I had radiation on the chest wall back in 2010 when I was IIB. I am trying to remember if it was discolored at all.
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Blue girl I did get rashes. I’ve been on Ibrance 44 cycles. I had rashes not with every cycle. Onc told me to take Benadryl and if it didn’t work we could try steroids. Thankfully the Benadryl worked.
Tanya
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Well ANC yesterday was 700 (after my 2 days off on the 5/2 scheduling). So holding Ibrance couple more days and rechecking lab. Maybe 5/2 schedule is not helping my counts. I have struggled with the counts the whole time, but more in the last 9 months. Sigh....
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Candy, that sucks. I'm sorry. I know you've struggled back and forth for a very long time. I hope this was something that will correct itself quickly.
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Candy, how is your water intake and exercise? I was told that taking the stairs before my bloods can usually crank out a few more points on the ANC scale, but also last month I took a very long walk of an hour and a half the day before bloods and was over 1, while it was. 7 the month before. I also pushed three big glasses of water about 4 hues before. Not sure if they helped but it can't hurt, and both times ive been low its because I've slacked on water.
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Sondra- My water intake overall needs to be more. I usually drink 1 liter or so each day, my doctors have said a person needs 2 liters a day. On Wednesday, the day of the blood test, I went to the lab earlier in the day before my day's worth of water. So, maybe not as hydrated for the test, but should have been somewhat hydrated from the days prior. I do not think about doing anything different before the lab draw-- to skew the results. Just my normal routine. Exercise is nil. Always has been. Maybe guzzle water and jog in place before the next blood draw?? Hahaha. No I will just do my normal routine.
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BlueGirl - I had a bad rash shortly after starting Ibrance/Xgeva. It began at the back of my neck and spread towards one side of my upper back/shoulder. I was already on a daily antihistamine, but had just missed a dose. I added Benadryl at night because it was itchy. It took several months for it to heal. I continue to take my daily antihistamine (desloratidine).
Just remembered that the rash did appear on my upper legs, lower back, and non- lymphedema arm. Fortunately those disappeared fast and weren't itchy. ???
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Candy, I felt better on the 5/2 schedule but it didn't help my low ANC levels. Now I'm starting to have trouble with them even on the 100mg dose (latest was 510), altho fatigue is much improved. I tried the walking up and down the stairs for an hour before the draw and that didn't help either. Have not tried hydration, and I definitely will because that is always an issue with me in blood draws. I may move to Verzenio over this
Now for first time I have developed a sensitive (raw) area on the roof of my mouth- is this a response to Ibrance also? I took the capsule for years never had this but now I take the tablets, could it be due to contact? Am stopping Ibrance for a few days to see if this improves- is regular mouthwash helpful?
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I have to say I had a lot of mouth sores in the beginning, but I hadn't had any for quite a while. This past weekend I had some strawberries and blueberries. Bam, I have one on each side of my cheek. I haven't had fruit in quite a while. It does make me think that could be the cause of mine. I will experiment now. Regular mouthwash did not work for me.
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Rash or inflammation? Is it casued by Ibrance? There is redness on the right side of chest and some swelling next to armpit. On cycle 17 of Ibrance. Lymphedema is on right. Still waiting results of punch biopsy. Tumor is in the R-axilla. Also loss of range of motion with right arm. I've noticed the loss in range for a couple of months, but attributed it to an injury to the right shoulder 40 years ago catching up with me, getting older, and not working out at the gym. The redness is new. I walk/hike/x-country ski winter almost daily. Usually stretch at home, but not as much as I was at the gym. Hoping biopsy comes clean. So if any of you did get a rash from Ibrance, where was it, how long did it last, were you taken off of Ibrance.
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Blue girl I had a rash some cycles. The rash was on my chest legs torso and some times back.
Cureious I used a prescription mouthwash. Many on here have suggested a particular brand. I hope you feel better.
Candy sorry to hear of your low numbers again. Sometimes I have taken an extra day or two off at the end of my cycle. It depends on how much fatigue I feel. Sometimes I feel ok and just slog through but it’s a real grind bc of the amount of months. I think we’ve both been on this regimen for about 3 years or so.
Tany
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Re Covid Vaccine. Another nuisance with scheduling. I was planning to obtain the Moderna vaccine at work on 1/21. This is my off week from Ibrance. Suppose to obtain lab work before the vaccine to review ANC. I receive a message that my MO wants me off ibrance for two weeks after receiving the vaccine. This will screw up the cycle for the 2nd dose. So basically I will only be on ibrance for one week each month for two months. This sounds crazy but I understand the reason behind it for she wants me to have the best response. However I'm not sure of my comfort level. So I decided to wait another month after my scans in February.
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Tinkerbell- I get it. Nervous with being off Ibrance for so long.
I have an opportunity to get my Covid vaccine later this month (thru a volunteering situation). My MO says OK. But I need to be off Ibrance 1 week before and 1 week after the vaccine. And with the Covid vaccine being in 2 shots a month apart, I will be off Ibrance more than on over the next couple of months. But... would I rather not be vaccinated against Covid? NO. So I pray that the AI alone will hold the cancer at bay.
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