Ibrance (Palbociclib)
Comments
-
I find this whole discussion about tamoxifen fascinating. When I completed surgery, chemo and rads for Stage II BC, I was offered tamofixen or anestrole in follow up. I chose tamoxifen as it tended to lower blood lipids. I was coming up for five years when the data came out that 10 years was better. I was living in the Canadian province of Saskatchewan then. Every woman in the province who had a Rx for tamoxifen was sent a letter from the provincial pharmacy program that provides the drug free of charge. We were required to meet with our family doctor, discuss our options, and if we chose to go off tamoxifen, we had to sign a waiver stating that this was out informed choice. I chose to stay on it. I remember staying to my family doctor that I expected that after 10 years, we would be encouraged to stay on it indefinitely. I had dizzy spell at the gym which triggered a long series of investigations. When my first liver biopsy was negative for MBC and suggested a drug induced hepatitis, I was taken off tamoxifen as it can cause hepatitis. A few weeks later the liver and bone lesions on a PET scan lit up, and a bone biopsy was positive for ER+ MBC. I did 22 months of Xeloda but had progression in bone but not liver. I had extensive rads and then switched to tetrazole and Ibrance. My liver mets are continuing to shrink and there is no activity in bone. I have scans next week so my anxiety is very high but I have no SE apart from fatigue and dry skin. I have had to drop to 75mg due to low neutrophils. Just completing cycle 14.
0 -
You've GOT it, Jaylea! Prayers flying!
0 -
And Hobbes, best of luck to you, too, and to all facing scans coming up. I'm sitting in the airport thinking of all of you and sending up prayers!
0 -
Prayers on the way, Jaylea! Hold tight.... it sucks but you’ve got this. We are with you
0 -
Sending prayers for peace and good results!
0 -
Thanks for some good feedback ladies. I'll talk to my MO about xgeva but maybe I'll try taking the Claritin before the infusion. I was just at the Huntsman Cancer Institute in SLC and the MO ther suggested that, the center here never did. So hard to know what to do at times! I have few SE with Ibrance (have been on 125 for a year) and letrozole but my body does not like zometa! I dread when I have an infusion coming up☹️ And hugs and love and peace to all of you with upcoming scans. And may they all be good results
0 -
just wanted to check in here,,letting all know that im doing great on ibrance/letrozole...one week into my second cycle,,seeing dr tomorrow for a checkup...the sore scalp has let up thank goodness..praying to our wonderful God that this is the answer to my cancer!..praise his holy name!
0 -
First diagnosed at 46 (2003) with stage 3 lobular BC. Originally treated in NY. I had surgery and then started treatment with the "red devil" (adriyomicin) 4 doses, followed by taxol, which caused me to go into anaphylactic shock. I only had one dose of that and was hospitalized for a week. This was followed by taxotere 3 doses and then radiation. Five years of arimidex and then follow ups of mammograms bloodwork etc. A bout with the flu in Jan. 2017 left me with a terrible back ache. Xray revealed a fractured disc from coughing and of course osteopsorosis. An MRI revealed cancer in my spine. A biopsy during khyphoplasty confirmed MBC. Further tests revealed cancer in ovaries, ribs, hip, abdomen. I had a hysterectomy June 2017 and began Ibrance/faslodex 125 mg. to start, with Zometa infusion monthly. 4 months later reduced uptake on hip, none in spine or on rib or abdomen.
Recently my MRI revealed some uptake in the spine again and the other side of the disc collapsed. So, I had another biopsy and khyphoplasty. Biopsy revealed cancer in bone marrow and now I will have another MRI tomorrow. Still on 100mg Ibrance/faslodex.
In comparison to the heavy duty SE of the chemo above, the SE are much better on Ibrance. However this cycle (14) I was depleted and exhausted by week 3. I also had a cold in June, July and August. I told my ONC I don't want to do 100mg anymore, but he insisted that we wait until the MRI and PET results are completed this month.
I've been with the same ONC for 11 years in FL. One thing I have to say about BC treatment and care. I was having mammo< MRI and sonograms on my breasts and I know that BC usually goes to the bones also so why wasn't I being tested in that area? Is there now some protocol to scan BC survivors and not only do the other tests?
Thanks ladies. It took a great emotional toll to write this brief history today.
Happy to see so many doing so well. I consider myself doing well traveling, retired, and spending time with family. I'm often breathless, have some back pain, insomnia, and flashes.
Tanya
0 -
I am heartened to hear the stories from those of you who are surviving and thriving on Ibrance. And I also sympathize with your suffering and side effects, and appreciate how hard a road this all is. I was diagnosed with Stage IV a few weeks ago, with mets to a couple of infraclavicular lymph nodes only. I am still questioning why it is Stage IV since it is (so far) limited to a regional recurrence, and I'm waiting on a PET-CT scan. However I am told it is Stage IV because it is a new metastases, a recurrence, and maybe because of the location of the lymph nodes. I need for my onc to give me a more thorough explanation.
I was on Tamoxifen for 5 years, followed by 5 years of Aromasin, and it is my onc's opinion, and mine, that the cancer cells started growing again when the endocrine therapy was stopped in 2010. I too can see an era when one simply stays on the endocrine therapy as long as it is tolerated. I had no significant side effects and wish I had stayed on forever instead of facing what I am facing now.
I've started the Letrozole, received the Ibrance starter kit in the mail (but no medication yet), and will see my onc next week as to when I'll be starting. The side effects in the handout from the starter kit sound awful, I am hoping to not experience most of them. I had few side effects from chemo or endocrine therapy but that was when I was a lot younger and stronger. Although I see in my records that my ANC dropped to 211 on my first round of chemo, and then 600 on my next round, so I'm a bit worried about neutropenia.
Anyway you seem like a great group, and I am encouraged by your strength and resilience. I'm not happy to join the club, but at least I'll be in good company
0 -
Wow -- I have about a hundred things to say in response to all of these amazing posts today. But my daughter is waiting to tell me about her first day of 10th grade. So alas I need to try to be brief ...
ITDoesntFeelReal -- Boy do I know what you mean by thinking you were "done." When I collapsed and was hospitalized, and then finally got the MBC diagnosis, we assumed I'd go into quick and horrible decline like my Mom and sister had. My DH and I cried and grieved for days. He was all set to tell our kids that they would soon need to say goodbye. It was the darkest time of our lives. And here I am today. :-)
Ciaci -- I love your MO too!
KatyK -- I've done well with Xgeva -- very little in the way of SEs.
Leapfrog -- Keep sharing with us. We all love you.
Grannax -- I'm so glad you are still posting here. It's always wonderful to hear from you.
Jayleahand Hobbes -- you'll be in my thoughts and prayers! (I never think I'll have scanxiety -- until it's time for my scans!
Joyner -- Don't apologize -- you didn't share too much at all! I appreciate it and am touched. Some day I'll tell you about my own experiences on this journey with "celebrated" MOs. :-) Also DON'T feel like you missed out on a first line. Like others have said my guess is that you will have Letrozole or Arimidex in your pocket as a second line. (Just as my MO has told me that Falsodex -- perhaps with another CDK4 inhibator as part of a trial -- will be my next line). It does seem to make sense to me to start there since you were already treated with an AI. It really did sound like you could have tossed a coin.
Several of you have commented on being given timelines. I'm honestly glad my current MO hasn't. She has talked in general, and very optimistic terms, and I'll take that. (Though Ciaci gets the prize for her timeline!!!) On the other hand, my "celebrated" MO, in a consult at Sloane Kettering here in NYC *did* give me one. The thing is that I can't remember what she said. I was dizzy and throwing up and didn't hear a thing she said as she prattled on. But she refused to talk to me in front of my beloved DH, who had been by my side and holding my hand for over a month. She said, in so many words, that "BC is a topic to be discussed between women."
My *former* MO.
My plan too is to hang on for a cure. Or, as a friend who works at MD Anderson (though in a different field) predicted, I will simply die of old age!
0 -
Jaylea- Wishing you all the best news about your scans. Thinking of you as I made a casserole for my husband & I
0 -
Well, I'm thinking whatever happens on our scans, as long as the husbands don't run off with baton twirlers from Baton Rouge, it's all good!
Good luck, my friends. Let's get some more Ibrance NEADs up in here!
I had a big prayer answered today. My port stopped giving blood in early June and I'm a tough stick so it was a real bummer. My nurse thought they could make it produce again if I came in for a few hours of "work". I didn't do it but when I went in for labs today, I let them flush my port and what do you know? It shot blood right into those tubes. Praise God!
Love from PatG
0 -
Thanks for sharing your experiences! I love how warm and positive yet real this thread is. I think I am NEAD with the help of Ibrance.
I was given one of those dreaded life expectancy timelines, and it sticks in my head all the time. I was diagnosed with one small liver met in February. Since it happened so soon after being treated in 2016 for stage 2 breast cancer and since it's in my liver and grade 3, my oncologist said it was very aggressive and I have an average of 2 years to live. I expected to become sick very quickly. I also expected treatment would be very harsh since the bi-lateral mastectomy and taxotere chemo had been tough on me in 2016.
My experience is going much better than expected! I started Ibrance in February at 125mg. I get very fatigued at times and have some minor side effects, but mainly I am very pleased with how easy Ibrance is compared to my original chemo treatments. I've never needed to delay starting my next cycle, so I am still continuing the 125mg. I am also on Letrozole.
I am single so I need to work full-time to support myself. I am self-employed. I am a nice boss to myself allowing me the flexibility to nap or have an easy schedule when needed. I have an active dog, and she takes me on an hour long hike everyday. I am very happy to be able to do so much. My social life suffers the most because I am too tired after a full day of work and my hike to do anything other than read a book, watch tv or go to bed early. I need to have more fun and fix that!
In February when I was first diagnosed, I had the one small liver met ablated. My scans have shown no mets since then. I think Ibrance is keeping new mets from growing. I'll do an Ibrance happy dance for all of us!
~Kar
0 -
would folks who have had their MO give them a timeline for how long they would live ever bring it up to your MO?
I am considering saying something - like, it seems like a good possible learning experience? I don’t know if my MO realized at the time the emotional impact it had and how much I still hear those numbers in my head, even with how rationally I know that it’s not the truth.
Since we have seen how well the I/L treatments are working and that I basically have NEAD at this time, he ended up being MUCH more optimistic and telling me that I am not a statistic - which was absolutely wonderful to hear him say.
0 -
my MO never has discussed life expectancy with me and I guess I don’t want to have that conversation. I have mets in lungs and bones but I am doing very well on Ibrance and letrozole. I can do most things I used to do, the only difference is that I can’t do the same level of intense exercise, the anerobetic type. I still have good endurance. And while I am happy with results thus far I am told it is very unlikely for me to ever be NED, not really sure why. Happy for others of course but a bit discouraged about that. So for folks who are NED are your tumor markers below 35? Mine hover in the upper 90’s to low 100’s. Latest CT scans are stable, happy about that
0 -
My MO did give me a life expectancy range, and I would rather have heard one than not, otherwise my imagination would come up with much worse scenarios. No matter what, as it has been noted, none of us is a statistic,
0 -
Wishing all the best and praying for great scans! The stories are amazing and so encouraging. I was diagnosed in 2004 after finding a lump in my breast....lumpectomy and negative nodes under my arms. After being told I didn't need chemo (although lump was 3 cm so I was not comfortable with that) on examination a tumour was found in my supraclavicular node. So A/C then taxol and arimidex for 7 years, was tested for her2 and was positive so herceptin. I also had actonel by pill for my bones with the arimidex but I had read somewhere that it protected spread to the bones so I had pushed for it. After 7 years I was taken off all treatment and told that if it was coming back it would have by now as it was grade 3 and aggressive. Asked about having a hysterectomy and was told I didn't need one as my type of cancer didn't travel there. In 2015 I was diagnosed with ovarian cancer and indeed it was a different, new cancer. I was fortunate that a small bit of bleeding took me to my doctor who immediately ran some tests so was diagnosed early at stage 1c. Total hysterectomy (the big one lol) followed by carboplatin and more taxol. I am monitored by the TM CA125 for recurrence of the ovarian cancer and last summer it started to rise. Of course I noticed long before it went above normal range and asked for scans and had an abdominal CT with no evidence of spread. Finally an experience onc actually looked at my records and noticed that I had had breast cancer so requested a chest CT and tumours in my lungs were found. So biopsy with results indicating spread of breast cancer. I was then transferred to a great MO who recommended Ibrance and Letrozole. He asked if I wanted to know my prognosis and I said yes. He said he was hopeful with a good response I would get 5 years, that there could be bumps along the way but he had other options if needed and there are new exciting treatments coming all the time. He's a very positive fellow. He has had my ovarian and lung tumour tested genetically and will be alerted to all drugs that respond to my mutations. I have a VUS on the BRCA1. I am doing well on Ibrance (just in my 5th cycle) and my TM is down from almost 400 to 12, within the normal range. It is really this wonderful site and you fabulous group that gives me hope, lots of laughs and companionship along this difficult journey. God bless you all.
Cathy
0 -
After I was first diagnosed, I TRIED to have a life expectancy discussion with my oncologist. He shook his head, got up to leave the room, turned back and looked at me. He put both his hands on his hips, made a motion like he was drawing a gun, and said "we have lots of bullets". He smiled and left the room. I LOVE that guy.
0 -
Oh, no, it's time for me to hop back up on my soapbox! No one but the God of Heaven knows how long you or I have to live. Since I started hanging out with cancer survivors in 1994, I've heard the whole gamut (sp?) of life-limits from oncologists. They're always in 6 month increments. If they really knew wouldn't they tell at least one of us 5 months or 7 months and 6 days? Friends, they don't know!
I've asked doctors why they say those things to people and some say, "Well, it helps them to get their affairs in order." But mostly they do it because patients or their families push them up against the wall and demand to know. In all the years I had the support center I never met a person who was glad to have received a time limit on life. One woman came to Flying Colors the day we opened. She fell into my arms crying and when she calmed down, this was the story: "My doctor told me I had a tumor in my brain and that I wouldn't live a day past 3 months." I was afraid she was going to tell me her 3 months was almost up but actually, she was crying because it had now been 6 months and she hadn't died! Guess what....Theresa lived for 8 years after that and died from a fall.
Want to join me in a little exercise? Take off your clothes and examine your body. Look on the bottoms of your feet, under those arms, inside your ears. Did you find an Expiration Date? No? Then you don't have one!
Love from PatG (Hopping off the soapbox, hoping not to fall and die.)
0 -
Your stories are awe inspiring! Thank you for sharing them. Love you all!
Prayers and hugs to everyone.
Lauren
0 -
Look on the bottoms of your feet, under those arms, inside your ears. Did you find an Expiration Date? No? Then you don't have one!
PatgMc, I love this, thank you!!
0 -
PatgMc, I just got strange looks from my coworkers because I was laughing so loud!! I LOVE it!! I was born in Japan, and used to flirt with my boyfriends - "hey baby, want to look for my made in Japan sticker?"
At my initial diagnosis, the breast surgeon drew me a cute, happy picture of what she planned to do, and wrote the survival rate on the picture. AFTER the surgery (which was WAY more involved than she thought it would be), I asked her for another picture and survival rate. She asked if I was sure I wanted to know - I said yes, and I wish I hadn't. It wasn't so happy.
I haven't seen her again (she moved) and my MO is a very positive, upbeat rose colored glasses kind of guy. A friend of mine used to work for hospice, and she says he always tells people they're doing great, even when they're in hospice care and close to end of life.
I'd rather be happy and wrong than count the months or years until the doctor's deadline.........
Faslodex shots this afternoon - yippee!!
Kathy
0 -
I am just wondering why so many of us have faslidex injections (or other similar) where it’s never been mentioned to me.
Cathy
0 -
Seaway, Letrozole and Faslodex are not used at the same time. It seems to me to be an either/or, with most starting with Ibrance and Letrozole (Femara). Is that accurate, others more knowledgeable?
Amica, you'll find yourself in great company here. Ibrance can be very tolerable with few SE. Wishing you the very best!
0 -
Seaway: I asked my MO, if I should switch to Faslodex. She said no. First, she currently does not see a reason for me to do so. And second, she told me that the SEs of Faslodex are stronger than for Letrozole. I cannot tell if it is true, but I have no reason not to believe her. I think that Faslodex is like the next level of endocrine therapy. I think that others get it as first line therapy after their mets diagnosis, if the mets occurred during adjuvant therapy (after surgery of earlier stage bc) with Letrozole or Anastrozole, which would mean that the AIs have failed.
0 -
Love hearing your stories....especially of hope....courage to change dr's when necessary. I was first diagnosed in 2000 with stage I bc. I had lumpectomy, chemo, radiation. My Onc spoke all over the world about bc. So, when he said if you make it to ten years you should be good. What a shock in 2016 when diagnosed with MBC to bones and lung. The good thing about the first diagnosis in 2000 I met my husband who loved me with bald head and all that went with the diagnosis. Before meeting for the first time with the Onc in 2016 I did a lot of reaearch on alternative treatments and was ready to go that route. Let me back track...I had a dry cough and over 4 month to the dr...they finally took an X-ray and found fluid in the lung. There were cancer cells in the fluid. Back to the meeting for the first time with Onc...I was a wreck waiting to hear the outcome...she took 45 min to finally come in the room. She told me what was going on and never once was negative. Started I/L immediately May 2016. Later in some appointments she said we have a lot of treatments if this doesn't work. Never negative. She ended up leaving and now have a new Onc for the last year or so. I really like her more than the other but both are great. Back track again..sorry...after meeting the Onc first time I wanted to try the alternative route...my husband said let's give the I/L a chance and I am so glad we did. Sometimes the Meds are harder at times than other meaning more tired, etc. but I am so glad we at least have these and others to take.0
-
Just received PET scan results: "a couple of subtle changes which are indeterminate but need closer monitoring": mainly one vertebrae and rib which showed on initial PET 2 years ago have changed slightly but are still way below initial findings. Everything else from original still looks great including the liver. The onc take on this is she does not want to change anything yet except for more frequent visits as other treatments do not offer any advantage at this point. Perhaps in the future we could go off the norm recommendation and switch to Faslodex, but she is leaning towards a new medicine if and when needed. I was not put on Faslodex because I had no prior surgery, chemo or radiation so Letrozole is first-line treatment for someone like me who had total hysterectomy 30 years ago, and have no noted gene mutation. This is the first negative news I have received since starting treatment, which is pretty good all things considering...
My onc is always positive and research-based. She told me Ibrance has a mean effectiveness of 2 years and I am just past this. She did not give me a life-span prognosis telling me there are new treatments coming all the time and her goal was to find a way to help me manage the disease and live a long time.
Just adding to my story...maybe I will go to the beach!
0 -
I am currently on Ibrance, Letrozole AND Faslodex. I went on Faslodex after getting ONJ after being on for 18 months from Xgeva. Interestingly, my lung tumor had continuously gotten larger over the previous 18 months but bone cancer was stable. My last scan after being on the new protocol if I/L plus Faslodex for three months my lung tumor has gotten smaller. Not a lot but at least it is going in the right direction.0
-
Thanks Cheryl. I will keep this in mind when I go in for my next appt...She did mention Xgeva as a next possibility, but was hesitant.
0 -
To quote Wandering quoting her MO:
"He put both his hands on his hips, made a motion like he was drawing a gun, and said "we have lots of bullets".
I LOVE that guy too!!!!!
0
