Ibrance (Palbociclib)
Comments
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Jaylea, when are your scans this week? Had you on my mind! Hoping for great news! Am still kind of freaked out about my tumor markers. After three rounds I would think they would be going down
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Gracie, scans are tomorrow, and I meet with MO next Tuesday for results, thanks for remembering. I'm trying to stay zen, but I'm a worrier at heart. Now, what's this about your tumor markers up? I thought I just read that you had good news?
Elle, do you have to go off treatment for the cataract surgery? I'll be looking at that in the next year or so too.
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Gracie, this might make you feel better RE: TMs... My CA153 went up for the first time in 6 years after starting Ibrance. I had never had my CA153 go above 21 until we checked again after being on Ibrance for a few months.
Started Ibrance October and by January TMs went up to 37. February 42. And then after Cycle 5 they've gone down a bit to 35. My MO said she would only be worried if they had doubled or tripled within a month's time. My last scan January 30 showed resolved and shrinking spots. I'm gonna try not to fret and go with what others here have shared about dead cells.
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Jaylea: best of luck tomorrow!
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Yes scans look good but my CA 15-3 is at 135. Last month it was at 90. Month before that, 83. So definitely going up. Am hoping there’s a reason other than mets
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Thanks Ashlyn, I pray mine are doing the same and will go down. It’s the highest they have ever been
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Jaylea, good luck with the scans. Fingers crossed for excellent news for you next Tuesday
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Jaylea I am hoping for good news from your scans this week. I had 2 MRI’s the end of last week and a CT yesterday. I’m also trying to stay zen; see my doctor tomorrow to get my results.
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Thank you all for responding. This is a great place for info and support!
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Very good news: My CA15.3 finally decreased for the first time. It was 38 at dx in Sep 17, 149 in Nov 17, 162 in Jan 18, 174 in Feb 18, now it is 130! A great drop of 25%! Now the TM finally fits to the good response of my primary tumor. I will have a very happy skiing vacation which I am heading for tomorrow.
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Great news, NettaGer! Have fun! Just started my 15th cycle of Ibrance this morning....so far, so good!
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Joyner..a little ahead of you. Cycle #17 starts April 1st. Took Zumba class today..first time in 2 years. For one hour, I forgot I had cancer.
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WELL DONE, SandiBeach!!
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Hi there all!
I'm not yet on my Ibrance/Femara combo as I just learned this week that the chemo regimen I was on wasn't doing the trick. After having cancer ruled out last Fall, I was diagnosed Stage IV with liver and possible lung mets in January and went on chemo immediately. Nothing has changed with my liver enzymes or my CA values. They are extremely high, so that's never good. I had a follow up pet scan after my 9 weeks of chemo, and the area around my uterus that looked like just physiological activity is now suspected to be cancer in the abdominal cavity. UGH! I've decided to be optimistic about what an Ibrance/Femara combination can do for me, because the alternative is to look at the statistics which are grim. I have to get a bone scan today. My MO never said anything about that when we discussed my pet scan findings. I just got a call from his nurse saying I needed to do this before I started Ibrance tomorrow. My guess is that they want to make sure there's no more surprises as far as mets are concerned. Nothing has lit up in my bones in any of my previous scans (CT/MRI/PET) so I'm hoping that this bone scan is also clear.
It's helpful to read your stories about side effects, lab values, and good scan results. I'm still in the phase of shock, fear and sadness. It would be so much easier if I could get all the bad news over with at one time and just focus on treatment, instead of all this 2 steps forward 3 steps back that I've been dealing with since September. So, would this Ibrance/Femara combo be called my second-line treatment? I just want to get the lingo right, so I know where I fit. I'm thinking of trying to see someone at MD Anderson or Dana Farber to get a second opinion on all of this. I love my MO, but I seem to be an outlier for everything, which keeps him guessing.
Also, I still don't know how my insurance will cover the medication. I cannot pay for it on my own, so if it's not covered I don't know what I'll do. My MO was working on that this week.
Thanks for being here and for sharing your stories. When I was originally diagnosed back in 2009, this place was a refuge for me. I hate to be back, but am so thankful that this forum exists.
Missy
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Georgiabirdgirl, I am so sorry to read you are back with us. I will pray that the I/F treatment works well for you. But yes, I would get a second opinion if possible. Sounds like you could use some peace of mind.
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Liwi, lighting a candle that you received good news on your scans.
Netta, happy skiing, leave the cancer behind and have a wonderful holiday.
Georgiabirdgirl, you sound much more composed and with a much more thought out action plan than I was at stage IV diagnosis. I suspect that composure will serve you well as you navigate these waters. The bone scan is probably to get a baseline. You've had the procedure by now so you know there's nothing to it, just make sure to drink lots of water afterward. Yes, chemo would have been the first line of treatment and the I/F is the second line. Regarding insurance coverage, I can't comment, but have read several posts about drug company subsidies, so keep researching. We hate that you're here but will support you however we can.
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Georgiabirdgirl,
I am so sorry you are here and for what you are facing. I found out only 1 month before you in December 2017. I was still in shock from my original bilateral stage III diagnosis in 2014 when stage IV rolled around. Needless to say, I am still in shock and denial and anger and fear and pretty much every emotion one can imagine (except hapliness) in response to it.
BCO has helped me deal with it better than just about anything else. There are some really amazing warriors here who are generous enough to share their journies with us in the hopes it will help in some way.
I strongly recommend coming here to vent and to learn and to arm yourself with everything you can as you move through this extreme, life-altering challenge. Others will chime in to help you but my best suggestion is to learn how to FOCUS ON ONE STEP AT A TIME. Speaking for me only, this is the only way I can deal with any of it at all. Even then, one step at a time is too much sometimes and I have to look at half steps or baby steps or zero steps while I take a timeout...your goal right now has to be to figure out how YOU will best approach it, for you. Only you really know yourself. We will be here for you to help you do this, however we can.
Stop by often. Someone will be right here, electronically standing by your side to hold your hand or read your story or laugh at your joke or cry with you over news as needed. You can believe we "get it" when others can't because we r right next to you going thru the same thing...
Warmly, V
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Hi cchilders79--
My nostrils were driving me crazy last night. I see that you're taking gabapentin -- I just started that. It can make you dizzy. It helped me sleep for a few weeks and now it doesn't. Tuesday night I couldn't fall asleep -- I actually stayed up -- it felt horrible to still be trying to get to sleep when the sun was up. I reminded myself that there was nothing I needed to be doing and it was ok that I didn't sleep..I don't work anymore.
Wednesday night I had an edible early on (really helps with pain, mood, and relaxation) and a sleeping pill at bed time. It worked -- and the sleep felt amazing. I also remembered to put an ice pack in my pillow. I think the constant change in temperatures I'm experiencing makes it extra hard to get comfortable.
Also, I hate that every pill to help one thing has it's own set of side effects. I hope you find a balance!
Hi everyone --
I wish I was warned about the gas Ibrance causes! Gas X and probiotics are my friends but it has gotten pretty embarrassing. I'll be talking and a burp comes out. Although a burp is better than the other way!!
The worst is the stomach pain though-- the first night I experienced it, I didn't understand -- it felt like a my stomach was alive -- and I was up until 5 am.I'm also noticing pins and needles in my hands and feet that weren't there before. (just finished my first 21 days)
And I've been overeating -- and lots of sweets. I guess it is better than it was on Kisqali -- the liver stress meant I wasn't eating much at all.
Thanks for listening
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tinyturtle - your 'trials' with Ibrance sound very similar to mine, I am 2 weeks into my 2nd cycle. I have the gas but, unfortunately mine is from 'the other end'
, and my stomach makes all kinds of embarrassing noises like when you are in church, all is quiet, then grrr, churgle churgle...the joys of treatment! I also have mild pins and needles, more so in the evenings, I notice it when reading in bed AND I am definitely overeating on sweets!! Easter is my worst time of year for overindulging in chocolate. 0 -
Hello out there to all.
I just came home from traveling to Cancer Treatment Centers of America where I got another opinion on my case. I had wanted to go there since I was diagnosed, and finally got the chance. Very impressed.
I had Foundation One testing done in Sept. 2017 but never had a conversation with my MO about the results. I got the results for my own records but did not understand them. Cancer Treatment Centers explained them to me. I think I get it-----some of it was way above my education level. Anyway, I asked them if I should have the test repeated at any point. And they advised I "may" have it rechecked in "a year or two" just to see if the medical world has made more advancements that could help me.
What do you all think? Has anyone out there that had Foundation One done had it repeated at any time? I had read on these posts that a patient could call Foundation One and they would also explain your results. I have never called them. Has any one called and did they help and give advise on their test?
I also asked the MO at CTCA if I should re biopsy if I progress to check if ER/HER2 has changed and she said only if meds not working?????
I think it is good to have other opinions but also can get confusing since MO's don't all agree on the same course of treatment.
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Candy678 Yes, I had F1 test done. Basically all my MO has said about it is Theres nothing we can do with that. What?!?! I have been trying to get answers for two months from her. I did call F1 and they were very helpful but they cannot tell MO what to do. MO can call them for advice.
So, all I have learned about it is from here. I've learned alot. I started a thread called Genomic Alterations testing. If you could summarize your results there that would be very helpful to all of us. I did learn from F1 that I have an alteration not an amplification. And there is an actionable drug for my ESR1 alteration. And three AI's that my tumor is resistant to, one if which i am still on.
The key seems to be wait till progression to change TX. But, to what is the big question. Yes, my MO said we will probably get another BX to send to pathology to see if receptors have changed. They used my December 2016 liver BX to do F1. I am considered heavily treated from my three other bouts with BC and MBC. So I hope she will send new BX to F1 also.
I look forward to seeing your post on the Genomic Alterations Testing thread.💞
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Hi Ladies...
Just a quick check - in. As some of you know I was on the Ibrance/Letrozole train for about 4 months before being taken off, as my blood work was horrible. I had a bone marrow biopsy, showing cancer cells. Since then, I've been on weekly Taxol infusions...one every week for three weeks, then a week off. Yesterday was my 14th. I started getting neuropathy around the 11the infusion...gradually increasing to very painful/burning sensation. I was supposed to get 18 infusions, but my onco said "no more"...because Taxol can cause permanent neuropathy. Next Thursday is my "off day". I will see my onco on April 12th, and he hinted that I may be going back on the Ibrance/Letrozole. So, I will be glad to "see" all you gals again. I do peek in now and then and am so happy that most of you are doing great...with long term effect.
Hope to see you soon!
Hope
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Candy678. There are also local treatments for liver mets. There's a thread for that discussion too. Several of us have had radioembolization (y90) and sbrt done. My liver mets now show no uptake in liver. Although I still have active ones in lung and chest. 💞
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Tinyturtle and Janky, I think you will notice things will calm down after a few cycles. I no longer overeat and can control my sweets much better. I am even losing weight although very, very slowly. It is purposeful. I gained 15 pounds the first 18 months. I try to walk every day but I only get in about 15 minutes before I have to sit down. I live off the bay in San Diego so there are lots of level places for me to walk and sit along the way. I am on cycle 22.
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Hi everyone! I was finally diagnosed as stage 4 after several months of doctors not being able to communicate with one another. In August 2017 I went into the ER because I had sever pain in my right side below my rib cage. They told me that I was fine and that they couldn't tell me what the pain was from. Two days later the radiologist called and said that they noticed some nodules in my lungs that they had seen last December (which no one told me about). I went to my oncologist that treated me in 2012 for breast cancer and he told me not to worry that I didn't have lung cancer and that he wouldn't even really push for a PET scan. He did refer me to a lung doctor who did do a PET SCAN finally in November. Unfortunately at that time I switched jobs and had another insurance that did not cover that particular lung doctor. So in December I started with an oncologist from Kaiser Permanente and couldn't get a PET Scan until Jan. 20th. I finally got the PET scan and the oncologist called me at work (didn't even ask if anyone was around for support) and gave me the news. You know the usually you have stage 4 and it is not curable. Later in January I had to get my lung drained and they used the fluid to confirm the diagnosis and whether it was the same that I had before. the lung doctor through Kaiser Permanente did not wait for all of the results but also called me at work to tell me it is cancer. I didn't know until February 2nd what type. The oncologist called to give me the news about what type of cancer I had and asked how I was feeling. I told her physically I felt fine but mentally terrified and anxious. She didn't even say anything about my mental capacity she just went directly into what treatment we were going to do and that I would be on Chemo indefinitely. This is when I got away from Kaiser and got WV medicaid. I love my oncologist who seems to have a better outlook for me and instead of starting chemo right away like the kaiser doctor wanted to.
My new oncologist said that breast cancer is being treated as more of a chronic disease now then a "death sentence". i have been on Ibrance and Falsodex since Feb.26th and seem to be doing ok. I do however fear getting sick as my white blood cells have gone down some (before this was never a fear because I have worked in childcare for 26 years and had built up a tolerance for everything).
Congratulations Sandibeach! I hope you are NED for many years and you have given me hope for the future. May everyone become NED and have very long lives!
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Holmes, I am sorry you had such a bad experience with Kaiser. I have Kaiser now and am very pleased. My onc is proactive and very communicative. I also get my apts and scans quickly so I am unsure why you struggled. But I am glad you are happy with your care now. That is what is most important. I wish you a good outcome on the meds.
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lakewomanLake ~upstate, NYJoined: May 16 hours ago lakewoman wrote:
Got script for letrozole today --ibrance being mailed..Oncologist called me yesterday to tell me meds I will be taking...I see her Monday. She gave me brief summary .I knew from lung biopsy mets there. And PET showed mets to bone ..sternum..Will talk with her Mon. regarding area of concern where I had mastectomy 10 years ago. She mentioned biopsy might be needed but for now she focused on lungs and bone. Can you believe this began Feb 22nd.yes 2018!! with virus and chest xray. Serendipitous my cousin doctor said..Yes so blest Since then CT chest..bone scan.. CT of abdomen and pelvis..and above!! BC.org here for me for five years..TY for being here again!
SharleneDx 2/8/2008, IDC, 4cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+,HER 2 -
Stage IV mets to sternum and lungs
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Amazing news! Ibrance has been approved in BC by the BCCA starting April 1st 2018. Here is the link!
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has anyone tried just iron supplements for low rbc
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Wow this thread moves fast! Been off a few days and am way behind.
Jaylea, asked my oncologist about the cataract surgery and he said I could have it whenever I wanted. I don't have to stop any treatment as it's a very low risk and bloodless surgery.
I went today for a barium swallow test because I have been having increasing difficulty swallowing. Truth be told I should have gone months ago. Turns out I have a pretty severe narrowing of my esophagus, most likely scar tissue from radiation I had to my head and neck last June. BIG sigh. I really wish things would settle down for just a bit. I'll get the final report from my oncologist on Monday...the extremely kind radiologist just gave me some general info as I was a mess of nerves. I see an endoscopy in my very near future. Hopefully it's something that can be helped. I am REALLY sick of Ensure Plus! Anyone dealt with anything like this?
I did apologize to my bottle of Ibrance tonight...i've been trying to blame my issues on a side effect. It all started right when I started taking the pills....
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