Ibrance (Palbociclib)
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RosieRed - Don’t let your short dance on Ibrance get you down. I know several woman who had to try a few drugs before they found the magic bullet to stop their progression. Chin up my dear. Your magic bullet may be the second one in the chamber. I have no experience yet on Exemestane/Everolimus but when I discussed it with my onc, he was going to have me use the mouthwash BEFORE the mouth sores showed up, not just after. Good luck and hugs.
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I started getting mouth sores with Ibrance, and found that Orajel brand rinse for mouth sores keeps the sores away. I use it every morning after I brush & floss. I did have another rinse that I used when I was getting IV chemo the first time around. I don't remember what that was, but i recall that it had a red label. It wasn't prescription, but I did have my MO's office write a prescription for it, so that I could travel with the larger bottle in my carry-on luggage when we were flying somewhere.
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Sunshine, thank you for the information. I know what triggers mine, usually, certain wines, definitely bing cherries (they did it before I was on Ibrance), and now Zquill. Alcohol in Zquill? I honestly don’t know. I know there is in NyQuil. Fruit in general seems to bring them up, so I don’t eat very much. I just had four on the same side of the inside of my cheek and tongue at one time. Ouchie.
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Rosie - nothing was said to me either about scalp sores. So if you find out anything and how to care for please share. New habits are hard to make, but I am trying to remember to apply a little calundula oil. So for they are not bad.
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Speaking of mouth sores may I recommend Peroxyl Rinse by Colgate? Comes in a little bottle by the regular mouthwashes. I used it during AC chemo to keep mouth sores away and Used it again with Ibrance when I was at 125mg. It really works well for over the counter. BTW, dropping to Ibrance 100mg made the mouth sores virtually go away. I was 12 cycles on 125mg and dropped to 100mg at my request - I've been on 100mg since and I just started cycle 22.
Those new on Ibrance. I find that the first 3 or 4 cycles in will give you a pretty good idea how you'll do symptom wise cycle to cycle. Some cycles are slightly different but you'll get a general idea. I felt the first 1 or 2 kinda felt like my body was getting used to it and it did feel like pain revved up a bit in the first few months while I was on it, then it went away, then came back, then went away then back. Haven't been able to quite grasp why, but also remember the AI we take with it can also too cause achy bones.
You ladies made me smile
I've been in funkytown a lot lately. My only brief exit the the other day was when I entered the livingroom after waking up to serenade my beloved with "There she is, Miss's Uni-tat, there she is, doesn't she look fine!". The word Uni-tat used in reference to the fact I'm lopsided. I don't know what else I'm supposed to call it. Just a inkling of what my beloved puts up with around these parts if the mood hits me right. I'm glad things timed themselves okay because beloved was eating when i randomly broke out into song and wasn't expecting it in the middle of bites of breakfast. I'm glad I didn't have to reinact a ER tv drama heimlich maneuver scene or something.Speaking of the TV series ER today I'm binging on the TV drama. I'm about 2 decades late beginning to watch this. I'm on Season 5. Greene and Carter are my favorites thus far. When I started watching a little while back and they started calling out various blood screenings i found myself saying "Hey! I understand what their saying!"....Paging Dr. Rabbit!
RK is right you know, we basically have become amateur doctors in the way we have to learn to read complicated things, access symptoms, and keep on everybody's butt about things going on with us. "I want that CT scan report STAT!" "Where are those metabolic panel results?!"....We are own ER episode, I swear. When one of us is missing too long, we should page one another. "Paging Dr...."
I'm noshing on celery, carrots and garlic hummus hiding under covers and watching various episodes between naps. I haven't been able to mow but a couple times this spring/summer when I was gangbusters mowing AND weedwhacking last yr almost half an acre entirely myself. Pile in ladies to wagon behind - but please - do and don't hold onto your butts
"Hold onto your Butts!"
Edited to add: Welcome to Lemon, how is Ibrance going?
Rosiered - hoping next line treats you well. Its all about finding the right drug, sometimes it takes moving a different direction once or twice til you find what works.
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Thank you all for the encouragement. Very much appreciated.
Lately I’ve been complaining of shortness of breath and my pulse racing whenever I do anything “normal” like walk up the stairs in my house or walk through a parking lot to get to the store. So today I went in for a chest X-ray and a CBC. Found out my X-rays were fine, but my platelets have dived to only 15 even though I haven’t been on Ibrance since last Wednesday. They are going to recheck my platelets this Wednesday. If they don’t start going back up, they are going to do a bone marrow biopsy to see if the cancer spread there. So my new line of treatment may not end up being the right treatment for me after all. I’ll keep you posted.
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RosieRed,
I hope your platelets start heading back up for the next check. It’s really something how our new symptoms can be tied back to something in blood labs, if not our meds themselves. Thinking of you. 🌸
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Well, now they think something may be brewing with my thyroid. I have had a thyroid nodule since 2015. 2 biopsies in 2015 and 2016 benign. PET in 2019 said SUV 3.8. We didn't really think much about it. Now, this PET says SUV 7.8 and "suspicious for malignancy". MO wants me to see an endocrinologist.
My Lynparza is being delivered Friday. So starting it this weekend. Off Letrozole/ Ibrance, but continuing Lupron since we do not know if I am post menopausal yet. I will update my profile.
On to the Lynparza Lindy.
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Candy, best wishes for you starting new treatment, I hope you get good results from Lynparza. about thyroid, please see endocrinologist as soon as you can, you’ve been under stress a lot recently maybe the uptake is about. Big hug sweet lady.
D37 see this thread, I found this on bco: https://community.breastcancer.org/forum/8/topics/873305?page=1#idx_30
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Oh, Candy, haven't you been through enough already??? Thinking of you...
(((hugs)))
Carol
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Candy - in the midst of everything that is going on with you, if you have any chance to document a little bit how Lynparza is going, it would be much appreciated. Its on my list and while I know we had Pat on it for a very few cycles last year, it would be great to get a sense of the dosing and side effects.
Best wishes that the SE are minimal and your thyroid turns out to be a false alarm!
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Sondra- There is a Lynparza Thread, but not very active. I can post here too so more can see my posts about Lynparza. Here is the Lynparza Thread link.
https://community.breastcancer.org/forum/8/topics/...
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Candy, sending you lots of love, I'm so sorry about the loss of your sister. Hoping too that your thyroid nodule isn't more damn cancer. ❤
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Candy, sorry to hear of the loss of your sister.
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Hey Rosiered, Ibrance might need more time to get out of the system. Ibrance can cause SOB. I know myself and some others on here experience that a bit with activity. Low platelets probably didn't help either. Definitely keep an eye on the SOB if you end up moving onto Afinitor as pneumonitis is one of the possible side effects of it (Ibrance too). So if SOB gets worse and not better especially moving onto next treatment definitely let your MO know for sure. Hoping you can get answers soon to see if further investigation is needed. Definitely keep us posted!
Candy, I wish the rains would stop downpouring on you. I'm so sorry another thing is yet again being added to the plate. You've definitely been on my mind a lot lately. You have exhibited incredible perseverance and strength in the face is some very heavy burdens and losses. I am in awe of you, sincerely.
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Candy, I'm sending you a big hug and saying many prayers for you. You're made of tough stuff, my friend, and I expect you to come out the other side of all this dancing.
Love from PatGMc
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So hmmm, CT scan results reveal two very small lung nodules >3mm, my MO said it's possible we just haven't seen them on previous scans because they're so small, but I think that's unlikely, given how many scans I've had! Plan is to wait and watch, and start next cycle of Ibrance. I keep hoping for a scan that shows nothing new, but argh. The reality of my MBC is slapping me upside the head today.
Rats, cats, and bats. I think tonight is a good night for hamburgers...and going outside to my yard, check in on the flowers and hummingbirds, take many deep breaths, and be both grateful and sad. Then watch Lego Masters.
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Checking in, love our Rabbit's humor and how we keep each others spirits up! This stage IV living is not for the faint of heart, that is for sure.
Candy, I am sorry you have the added worry about your thyroid - hang in there! Please keep us posted!
RosieRed, I am also sorry to hear that you have the added worry of SOB and your platelets. Hope these both resolve, keep us posted!
SFCakes, I am sorry that you had these two small lung nodules show up on recent scans. I understand the mixed emotions of grateful and sad
Sounds like your MO has a good plan "steady as she goes" and will make a move when it's time. I am heading out of town for 10 days on vacation with my husband (planned it around my Fulvestrant injections/Ibrance and scans on 9/16). I am looking forward to the break from work. I leave on 9/3 so most likely wont be posting much until I get back. I want you all to know you are in my thoughts and prayers for good treatment results, on Ibrance or the next medical miracle you are prescribed.
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Candy, I know I’ve posted elsewhere, but I’m still thinking of you.
SF-Cakes, I’m sorry for your scan results. I hope the nodules stay small and stabilize.Aprilgirl1, have a great vacation.
I have a question. I’ve been on Ibrance for two years. They come every month. My doc sent a new prescription, and when the box came this month, I thought, wow, it’s heavier than usual. There were three boxes in there. I was shocked. I will be talking to my doc about switching meds, so the timing of getting three is not great. Has anyoneelse gotten a three-month supply before?
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KBL, I got three boxes once. I call each month to schedule delivery and the rep I got read off the dosage and quantity and said 3 refills. I told her I usually just get one but she kept repeating the 3 refills. I was thinking I heard it wrong but got 3 in the shipment. I could never manage it again when I tried.
If you do switch treatments you might ask your MO if the office could use the unopened extras for new patients as a starter. I got my first bottle that way at my diagnosis. Stilll sealed but someone's label was torn off. I think it eliminates the wait for insurance approval but it may not be on the level to do this.
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Rosie24, thank you. I will definitely give the two boxes to the office if they’ll accept them. They are still sealed. I will be using one, as it probably will take a month to switch. Much appreciated
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Cakes - hang in there! I had .67cm nodule appear in right lower lung in scan reports last February that was new from previous ones. It hasn't reappeared on a scan report since. MO said under 5mm isn't reported where I am. I noticed that some who read my scans can be more detailed than others, others leave stuff off. I've noticed too depending on who reads my scans its more wordy or more pithy. One scan noted hazing in my mesentery (abdomen lining, basically) and enlarged mediastinal nodes (chest nodes near lungs) and both where called re-demontration even tho I looked back and neither was mentioned in any previous report. Basically what I'm saying is I've had things come and go from my report. It's frustrating. MO looked at my images and even tho my reported noted that nodule we decided to stick with Ibrance and boo yah, still on it, so hang in there. If tiny things appear I think what being looked for is if they are a fluke, remain stable and are not growing/getting worse, know what I mean? Unfortunately that means watch and wait. And all we've got it feels like is Barry Manilow elevator music to comfort us. Ugh.
Candy, thinking of you.
Kestrel, Lee, Spookie, Blue, how goes it?
Aprilgirl, enjoy vacation. We demand pictures! Sept 16th scans noted. Not sure how I'll mark my pocket duty for your scans, but just be prepared for anything
On another note, I was just discussing the whole idea of a legacy with my beloved. I dunno, I tend to think of these things sometimes, I'm sure you all do too. What I'll leave behind one day. I told my beloved. "People on that board I go to are reminded of or remember people based on pretty flowers, animals, geographical locations, a pretty sunset, everyone is going connect me with farting, maybe i should rethink this whole gas thing"
"Gasman, how the hell do they know I've got gas?"
"They've gotta be pro's"
Aren't we all?All joking aside. I know I can be very emotional about all this, sensitive, scared maybe even depressing...so I try to balance both halves of me by showing both halves. I can get pretty darn depressive speaking about this disease and my goal is to try not to scare the poop out of newcomers nor burden already heavy backs but also not make an entire joke out of something that is devastating and very hard some days. Sometimes all you can just do is sit there and shake your head and laugh, everything just feels unreal, like its happening to someone else, except the someone else is you.
Hugs Ladies.
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Thanks Rabbit. Been busy, getting stuff done!! The leaky roof is FINALLY fixed, the ceiling is fixed and painted. Had the kitchen painted too.
I probably have a torn rotator cuff, mri Monday. Of course it’s my right, dominant arm. So if surgery is necessary , got myself a new recliner. It’s a lift, with heat and massage.
The critters and I are trying not to melt in the heat.
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Rabbit- Good movie.
Well I talked to my Palliative Care team yesterday (Zoom appointment). The doc prescribed Zofran in case I need it with starting Lynparza. I am to get the shipment of Lynparza tomorrow (Friday) and start it Saturday morning. I did a CBC today (Thursday) for a baseline reading. WBC 2.5 and ANC 1370 (1.3), being off Ibrance for 16 days now. Do they look at WBC's or ANC with Lynparza? I will have to read up on it. Will have to watch RBC's and platelets too with Lynparza I guess. RBC's 3.55 today and platelets today 270. On to the new med.
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Good evening ladies. I was recently diagnosed with mets to my bones. Had a sit down with my MO today to discuss my treatment plan. Looks like I will be starting Ibrance, Arimidex, Lupron, and Zometa next week. I’m nervous about… well everything. Any words of wisdom would be greatly appreciated!
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Katyblu, you're so welcome here, I've found some wonderful support and advice and specific knowledge being part of this thread.
Candy, very best of luck with the new med, please do let us know how it goes for you, and hope the nausea is minimal to non-existent. When I took zofran during chemo I learned very quickly to also take miralax...whew, that zofran can induce wicked constipation.
I second the great vacation wishes for April! Enjoy, eat delicious foods, have a great break from work, even though it sounds like you really like your work, it's always nice to get a break.
Thank you KBL - I've said it before and I'll say it again that I really appreciate you sharing your knowledge regarding ILC, too.
RosieRed, are your platelets improved? When mine got to 34, they were considering an infusion, but we didn't end up doing that.
Sending a cool breeze your way, Spookiesmom. It's cool and foggy here today.
I've messaged back and forth with my MO several times, she's really great and responsive to all my questions. That helps me a lot, even if we don't have answers yet. It's possible I have some lung damage from the radiation, but I don't really feel badly so it may just be something that will show up on scans. These scans! I hope to be unperturbed about them in the future. Someday. Yeah. Probably not.
Rabbit, your legacy will be so much more than farts! Your kindness and genuineness is apparent in all your posts. And I find that I do censor myself from sharing the worst of this experience, but I feel much less alone when someone else shares they're having a hard day/week/time. Thank you for talking about the difficult stuff, too. AND - I saw my bone scan - MY JAW IS OPEN AND I'M CLEARLY LAUGHING!! That's because of you! "Never gonna give you up/never gonna let you down" 🎶🐕
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Rabbit, I know what you mean about the scan readings, it drives me nuts sometimes. One of mine actually noted a cholecystectomy and I still have my gallbladder!
Spookiesmom, you've been busy! I've been getting my DH to do some carpet shampooing and other things I can no longer do. Sorry to hear about your right arm.You will surely enjoy your new chair, sounds delightful!
Candy, hope things are looking better for you and that your new treatment is gentle on you.
Mel, I saw the pictures from out East; the damage is just horrendous and so many people lost their lives. Glad you're safe and hope it stays that way.
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SF-Cakes - my platelets have dipped to 15 along with red blood cells and hemoglobin going low. They said they wouldn’t do a transfusion unless my platelets went down to 10. Tomorrow morning I’m set to have a bone marrow biopsy.
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SF-Cakes, thank you. I appreciate it.
Katyblu, with Ibrance, they usually start you on the highest dose, 125 mg. I was only on it for a month and dropped immediately down to 75 mg due to the ANC numbers. They are supposed to be above 1.0. Be kind to yourself, and if you have a lot of fatigue from it, I hope you're able to rest. I think it's well tolerated, other than the ANC numbers and fatigue.
I don't know about Armidex or Lupron.
With Zometa, my first time I was in bed for three days with flu-like symptoms, but that's not.always what happens to everyone, and it usually only happens with the first infusion. We're all different. The slower they can let it drip, the better. Also, people recommend taking a Claritin for a few days before and after, and also Tylenol. At my office, before they start it, they offer me Tylenol, but I usually take it before I get there.
Anyone can correct me if I've misstated anything.
I know how scary this is. Oh, and stay well hydrated.
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I was on generic aramidex for about 3 years, had some pretty bad foot/ankle pain with it. Some say NON drowsy claratin helps, didn’t for me.
Oh my, that zofran. BE SURE to use miralax. Compazine works much better for me, no miralax needed.
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