Ibrance (Palbociclib)
Comments
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Sunshine99 it sounds like you are going through a lot right now. The 21st will be a busy day. I hope they soon figure out what the next treatment should be and get things under control again. Hope the biopsy will give you some answers.
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@chicagoan and @cure-ious, MSM can also help with breast cancer. Google "MSM and Breast Cancer" to see the articles. I found a company that sells flavored MSM powder that's not bitter, which I'm taking now because I hate swallowing pills, here: Twigandleafwellness.com
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Thanks chocomousse. I've been taking it for several years. Perhaps it has helped me stay stable.
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Chocomousse, Thanks for the reminder, I got a bag of the crystals but haven't been using it daily, so I will start now..
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Hi Ibrancers - checking in before Labor Day Weekend!
Just had my faslodex injections and blood work today. Since I have been having my end of cycle blood draws in the afternoon vs early am, my neutrophils have been pretty good for someone on Ibrance- today they are 1.28. Shots seemed to go fine. I have quarterly pet/ct scans on Tuesday 9/3 and am hoping they are stable. Fingers crossed and will report back when I have results.
Will start Ibrance cycle 57 or 58 tomorrow. Hope everyone is doing ok and enjoying the end of summer.
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Aprilgirl1,
Great going with the Ibrance. I just finished my 43rd cycle of Ibrance.
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Good to hear your news Aprilgirl1 and Greatly Blessed. Let's keep going!
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I will be in your pocket on the 3rd, Aprilgirl! Hoping your scans go smoothly with great techs, and results are stable mabel. ❤️
I'm on cycle 44, right there with you, Greatlyblessed! 😊
Had a sweet conversation with the Oncology pharmacy tech this morning, since my next labs are due Sunday, and of course Monday is a holiday. Let them know I am entirely comfortable calculating my own ANC from my WBC and neutrophil %, so I'll know whether to start the next cycle on Monday or not. They chuckled, said, of course you are, you've been doing this a while now, but we'll still follow up with you Tuesday.
Have always liked Labor Day, both for what it represents and also that it indicates Fall is coming!
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Hi @aprilgirl1 , @sf-cakes , @chicagoan so good to hear my fellow Ibrance girls doing well. I'm on my nth Ibrance cycle...... nth meaning I can't remember exact number, but having started around the same time as y'all.... Dec 2020, its so encouraging to hear your stories. I am now firmly on 2 weeks on/2 weeks off on 100mg coz we still don't have access to the 75mg out here in Kenya. I'm due my next PET-SCAN after this cycle. Wishingeveryone on this waall a wonderful Labour day weekend.
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Do any of y'all have social anxiety since your diagnosis? I am trying to be more social but it's hard. I find myself not being able to relax and enjoy because I'm so anxious around people. Any advice?
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Glad to see so many people doing well. Can't believe summer is winding done. I love warm weather but this year the heat definitely got to me so I am kinda glad. Shh please don't tell my husband or he will want to move further north. I am on my 19th cycle and doing well. I have scans at the end of September. Unless something changes, I had decided to switch to foslodex to see if I can get some relief from the Letrozole side effects.
Greatly blessed. Sorry you are struggling with social anxiety. I am the exact opposite. I don't really care what people think anymore. I used to be more that way when I was younger. I really lacked confidence.
Hope everyone has a nice weekend.
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I think other people are also anxious and trying not to show it. I tend to say something first to ease their anxiety which also helps mine. A lot of people are having a harder time because of Covid keeping us apart.
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Hi All, Ibrance dancers:)
I had my petscan/ctscan with and without contrast on 9/3 and met with my oncologist on Monday, 9/9.
I got the scans in mychart of course a few days in between the scans and the appt so had some questions for my oncologist:) Overall, she considers the scans stable. Ive had clear scans for a few years and am approaching 5 years on Ibrance/fulvestrant (first line) which I acknowledge is really fortunate. However, this scan is the third in a row where my right adrenal gland is showing something and the SUV is higher:
-redemonstration of thickened right adrenal gland with increased FDG uptake, measures .9cm with SUV max 8.3, previously .9 cm with SUV max 6.5 (06/052024) and prior to that measured .9cm and scans 03/13/2024 show same size .9cm and SUV max of 4.8.
My oncologist ordered a blood biopsy/tempus test which will take a couple of weeks to get back. Otherwise, she recommends stay on current treatment and rescan in 3 months. She considers this 'asymptomatic lesions" . I spoke with a friend of mine who is an oncologist and just retired and he said "SUV 8 is cancer, why wait?" . He also recommended I get a consult with a radiation oncologist to see about SBRT and pursue a second opinion at UCSF (I am in Seattle at Fred Hutch but am happy to travel to SF ). My oncologist is also pregnant, due in early November. Of course she will have coverage and will take maternity leave but I don't want this blowing up while her covering onc is spread thin and I don't have a relationship with that oncologist.
Since I have good medical insurance and have met my deductibles, I decided to pursue the second opinion and also ask for a local referral within Fred Hutch to a radiation oncologist. I was met with resistance on the radiation oncologist referral but will keep at it:)
Cancer, full time job! Blood tests were all good and nothing else shows up in the scans. I have never had elevated tumor markers so they don't seem to register my cancer, at least not in the past 5 years. I have tolerated Ibrance and Fulvestrant really well and don't want to switch but also…..can't just sit back and wait without at least trying to get more info.
@Rosebessie glad to hear you are doing well on the 2 weeks on/off!
@Greatly blessed I agree with wren44 - I think a lot of people have developed some social anxiety just as we age and with covid. I am pretty social but have found myself still limiting some outings and preferring to stay in at times. Part of it is fatigue and needing to really watch my energy expenditure.
@chicagoan wow! I saw somewhere on the boards that you have seen some great shows this summer at your part-time gig! Awesome!
Hope everyone is doing ok. Has anyone else sought a second opinion? Just curious:)
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Aprilgirl-I haven't gotten a second opinion yet but giving the circumstances you are describing, I would. Why wait as your friend asks. I hope it turns out to be nothing but at least you'll have peace of mind by exploring this option. Are you settled into your new place yet? If so, how do you like it?
Hope that everyone in the northern hemisphere is enjoying the beautiful days of the end of summer.
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After talking with my counselor, we're thinking the social anxiety is coming in part from the energy that it takes to be social. I'm trying to do better. I've even been doing some socializing. The more I do, the less uncomfortable it becomes.
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Aprilgirl- I still keep up with this thread, as I am an Ibrance alumni. I had a PET in 2021 that showed an SUV of 7 for a thyroid nodule I had since 2015. I had a biopsy of the nodule in 2015 and 2016, both benign. After the 2021 PET we did another one- benign again. I don't understand the technical aspects, but there can be an elevated SUV and still be benign. But, a second opinion doesn't hurt, nor doing the blood biopsy. Better safe than sorry.
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@candy-678 so wonderful to hear from you ! Thanks for this info , makes me feel better that it could just be something "asymptomatic". The adrenal is in a tough place to biopsy per my oncologist and I can see why as it's buried in there near the kidney and it's pretty small. I'll keep everyone posted on the 2nd opinion , I have no idea how this will work out . Hope you are doing well on Lynparza (spelling? ). @Greatly blessed good for you ! It's good that you are working with a counselor.
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Aprilgirl- I am coasting along on Lynparza. 3 years now on this treatment. Next scans are mid-November; praying they will continue to be good.
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Hi all. I have been following along and noticed you are all very quiet. Late August, September, and October have been very busy. In September I had scans and everything is good. My Dr. Is impressed how well I have responded to meds given my original diagnosis. When I switch cancer centers, one of my better decisions, she was concerned about my mets diagnosis but has become more positive. She recommended I switch to Fulvestrant because of my sever neuropsychological response to letrozole and my high dose of effexor. I stopped letrozole 48 hours ago and the knee I had replaced as if today is less stiff and my pain spot is so much better. Hope it keeps improving. I also haven't been sleeping well another side effect that comes and goes. I am hoping that ends soon.
As for other things, my husband decided to retir
e at the end of August due to the way his boss has been treating him. I was a little surprised but I have been after him for quite some time to leave their. We had to put our hospice dog down a couple of weeks ago. His kidneys suddenly failed. My cats are back to owning the house and being less cautious. Work has been busy as well. I listed and sold 2 houses. The last one settles tomorrow. Hoping to get my energy back and get some things done I have failed to accomplish this summer.
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Brutersmom-Thanks for the update. Sounds like things are going well. Interesting to hear how much better you feel off of letrozole. Congrats to your husband on retiring and to you for your successful sales.
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Brutersmom - it has been quiet on here :) I've had a fun end of summer and start of fall. I am so sorry about your dog :/ that is hard . I tolerate fulvestrant really well , 5 years now ! I had more joint pain on femara when I was on that back in 2009-2016. Hope you have less side effects on fulvestrant . I am continuing on ibrance and fulvestrant - with a second opinion next month at UCSF.
Congratulations to your husband on his retirement and to you on your sales :) Hope everyone is doing well and stays safe from the hurricane .0 -
@brutersmom lovely to hear your knee is less painful so fast after stopping the Letrozole. Gping by @aprilgirl1 experience, Fulvestrant seems to be a lot more gentle on joints. Anastrazole and Letrozole seems to have very similar side effects of joint pain. I'm still tolerating Anastrazole with a lot of help from Loratadine. Following this thread has opened my eyes to a good alternative when the time comes.
Wishing all on this thread a good pain free week with love and hugs 💕❤🫂
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Rosebessie yes all around I think people find Fulvestrant easier to tolerate. For me aromatase inhibitors cause neurological side effects. My knee was the only joint giving me issues fortunately. Today is day 7 when the meds are now at therapeutic level. I feel human again. I have energy and desire to do things. I don't feel like I have to force myself to do what I want to do. I am hoping it continues. I am glad that me new Dr. encouraged me to make the change and hoping it continues.
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About a year ago Nov. 2023, I posted about an eye Dr. appointment that I had and my Dr. wanting to start meds and my refusing. Changes keep happening. I had an appointment with my retina specialist yesterday. He has referred me to a general ophthalmologist who also treats high eye pressure and glaucoma although I had no evidence of damage the optometrist had wanted to start me on drops. I refused medication because last year everything was just so stressful, Cancer diagnosis my husband being sick the having a stroke in his hear, upcoming knee surgery, and I was taking a lot of advil because of knee pain. I explained this to the specialist and he looked at me and said I don't think I could have handle all that and you should have a few more test before determining if they are really needed. So now I go on Monday for another evaluation who know what else. Tuesday I have a meeting and my second fulvesterant shots. Today was labs for neutrophil count. Wednesday is another meeting. Does it ever end?
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@brutersmom your knee surgery, husband's stroke and all of that plus stage IV cancer treatments and I think you switched oncologist - all of that is a lot of appts.
I've been on Ibrance / Fulvestrant for about 5 years. I have my blood tests (for neutrophil counts and the basic stuff ) and my injection at the same appt , once a month . I have scans every 3 months and they try to schedule those for the same day as a blood test and fulvestrant shots so I really only have had one appt / month once we settled on an ibrance dose and didn't need to repeat bloodwork due to low neutrophils. I see my oncologist via telemed to review scans - maybe see her once a year in person.I did see my primary care doctor last week , see her once a year . I was impressed that she had taken the time to catch up on my cancer stuff via MyChart , referencing my request to have an appt with a radiologist and my second opinion appts at UCSF - she is supportive of both . The radiologist appt was via telemed. She reiterated what my onc has said. My cancer is slow growing and "weird" - the only spot that has shown up after 4 years of clear scans is on my rt adrenal gland and hasn't grown in size, just in SUV level. They don't know for sure if it's cancer but it seems logical that it is. No pain or discomfort. Her opinion and my oncologists opinion is that SBRT radiation of my adrenal gland could create bigger issues as could a biopsy (to spread or seed cancer ). She is looking forward to hearing what UCSF recommends . I have that appt on 11/22.
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Aprilgirl. The knee surgery required pt and that was a lot of extra time. I think a lot off it is I have had a bad run with drs. I switch Oncologist. I really like my new facility and Dr. It was a great decision. She is very focused on both good care and quality of life which lead to a chance from letrozole to fuvesterant. The drive is about 15 minutes longer. I have had issues with my PCP these past two years. He just doesn't seem to care about things like he used to so I am switching to a new PCP soon. My eye Dr. got upset when didn't agree to starting meds and asked to wait because of the pain I was in and my BP issue and want him to test me again in about 4 months. He toldmy husband this September he really only wanted to treat dry eyes. I decided to call my retina specialist to see him for an eye exam only to find out he left the practice. He would provide regular eye car to his retina patients. Now I need to see 2 drs. Instead of one because the new specialist only provides specialty care. I did learn a lot from him. But now I have to see someone else Monday. I will get a lot of this worked out. It has just been a lot of change. So far it has been for the better.
I hope your second opinion confirms that it is just some thing to monitor or not cancer. Fingers crossed you get a good report.
I know my last scan showed thing that weren't identified before but unless there is a change they are just going to be watch. There is no indication it is cancer at this time. If the start to grow, then the oncologist said they would investigate them but for now the indications are that they are benign.
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Brutersmom- I can relate ! At 60 my docs are all retiring and the newer ones that I started with are having babies. Total happy for all but it makes for unexpected changes. My pcp just came back from maternity leave and my current oncologist is due to deliver a baby early November . I've only been seeing this onc for 2 years as my former stage IV onc went on family medical leave and came back research only . Will keep you posted on my second opinion. I'm glad you switched oncology offices .
I hope everyone is doing ok and has a good Sunday !1 -
Hi all,
How is everyone doing?
I pray you're all getting on fine with treatment despite the unavoidable side effects.This past week has been a bit tricky for me. I finished my treatment cycle on 5th November and went for my bloodworks 7th. All was well, as in no need to panic coz 1.15 Neutrophils is manageable. Especially coz I was starting my 2 week Ibrance break.
One week went by and I went back for the second bloodworks on 13th. OMG, my Neutrophils had dropped to 0.7. Mind you up to that point I was feeling relatively fine, just a mild cough, bit of stomach and headache. But when I saw the bloodworks, my symptoms suddenly upped. I think my brain got the message and passed it on to the rest of my internal organs, who went into full defensive mode. I went straight for the Neutas injection which was supplemented by some antibiotics. But within that hour I felt so weak I could barely feel myself.
So, I've been on bed rest (plus a bit of chair yoga), since then.
I feel a lot better but such episodes remind me that Chemotherapy induced Neutropenia is terribly dangerous coz infections are always hovering around, waiting to strike. And sometimes it manifests as something else before you can nip it in the bud.Having said that, I'm going for a Thyroid function test tomorrow because my Thyroid lit up on the PET-SCAN last month. This is the third year running that it's lit up. I had an Utrasound guided Biopsy on my Thyroid last year May, and all was well. I'm praying the Thyroid function test is OK so I don't have to go through that uncomfortable Biopsy again.
Question: Has anyone experienced this Thyroid lighting up on the PET-SCAN despite an overall report of No Evidence of Active Disease? I'd really like to know how you've dealt with that. 🙏🙏
Take care of yourselves, dear friends. Sending love and hugs to everyone 🤗🫂💕🙏
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Rosebessie. Sorry you have had a challenging week. I am glad thing are going better. My oncologist does not do pet scans unless my cancer numbers don't match my scans. She feels they give to many false positives. Let's pray that you have a false positive.
I am 6 weeks into fuvesterant. I feel like a different person in so many ways. Last week I was very tired but today was much better. Not sure if it was the med or if because I feel so much better I did more than my body could handle. I guess time will tell. At least now, I can do things I enjoy again or until cancer returns an rears it ugly head.
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It has been very quiet here. How is everyone doing. I am doing well on Fulvestrant. So glad I made the change. I am able to enjoy things again. Still have fatigue but my energy level is better even during the ibrance weeks.
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