Ibrance (Palbociclib)

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.

Thanks chocomousse. I've been taking it for several years. Perhaps it has helped me stay stable.

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.

Good to hear your news Aprilgirl1 and Greatly Blessed. Let's keep going!

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.

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.

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:)

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.

@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.

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.

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 .

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.

@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.

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 !

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.