Ibrance (Palbociclib)
Comments
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SondraF, I still have my breasts, but I have not had any discharge while on Ibrance. I hope you can get it figured out.
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Cure-ious thanks so much. I hope too that there are more PIK3 drugs in the future. I know 40% of us mutate to PIK3. I really haven't talked to my doctor about the platelets but I know he looks at my blood results. I see him on June 1st (if not before) so I will talk about it then with him. Thanks again.
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Hi to all,
I have posted in the past but for the most part am a lurker. I read the posts and feel sad at those who are having issues in their treatments and in personal life. Words don't come for all one has to deal
with having this a terrible disease.
And I cheer and feel thrilled when good news is posted! I am quiet by nature and don't feel I have too much to add .
I have been recovering from a colon by-pass. Breast mets scattered in colon, intestine. Extensive bone mets isn't enough I guess. (My DX and history is listed below) The surgeon who did my procedure said I could block up again in 3-6 months and then he wasn't sure what he could do...
In 2019 I was briefly (2 weeks) on Ibrance 125mg. Ended in hospital with severe infection. Stopped Ibrance. Have been on anastrozole until April this year.
I am suppose to start Ibrance 100mg and Falsodex injections.I want to start 75mg as I already have a challenged intestine and still trying to recover. It has been rough. My blood counts drop quick and my body doesn't seem to handle it well
I am told I should do fine on 100MG.? Hmmm why not start low see how I do and then move up if I am doing well? That is what my gut keeps telling me.
Is there some documentation anyone is aware of the compares the 3 strengths of Ibrance and the effectiveness of them. I have read their isn't much difference in 100-125?
Drugs and me don't agree much. I have had issues with the initial chemo in 2018 (infection & found was found Denovo ) and the Ibrance as stated above. Just found out in April hospital stay I am allergic to Morphine.Also, allergic to Sulfa
Not an up beat text...sorry. But I am so tired trying to recover and last 8 days my back has been painful. Will see about x-ray or scan (Bone mets active??)
Or did I just move wrong? sigh!Any input would be so appreciated. I know there is a Falsodex site so I will ask some questions there.
Thank you and I hope the best for everyone.
Bootsie
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Hello Bootsie, sorry for what you're going through - this MBC is a crazypants experience, no doubt. Here's my take on the Ibrance dosing question:
I started Ibrance at 125mg, and then during the week off after my first full cycle, I developed a fever, and was ultimately admitted to the hospital for two nights with febrile neutropenia. After I completed a course of antibiotics, my MO and I talked about trying 100mg next, and I told her I was more comfortable with 75mg, given my rare reaction (literature says about 2% of patients develop febrile neutropenia). I asked her directly if the efficacy of Ibrance depends on the dose, and she said no, it just depends on how one's body responds to it. So she agreed to have me restart at 75mg, and I'm now on my third cycle at that dose. My ANC has been low but then it recovered more and currently looks good (so far, fingers crossed!)
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Bootsie7, I started Ibrance at 125mg in June of 2019. My counts were very low the next month. My oncologist skipped right down to 75mg. I’ve had to take a week extra besides the regular week off around three times due to low counts, but I’m still on my first line two years later, and I have mets to all of my bones.
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SF-Cakes
Thank you very much for your response. Interesting response from your MO.
I hope continued success on your treatment.
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Hi KBL,
I have followed your posts as we are both ILC De Novo mets to bones and you have stomach...I have colon, intestine. I do know my primary though.
Thank you for responding.
Will hope only the best for you.
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Thank you. I’m sorry it’s in your colon and intestine. As yours can cause blockage, I can’t imagine what that would be like. Mine makes me nauseous and unable to eat a lot, but I haven’t had any blockage.
I hope you can get on a tolerable dose. I wish the best for you as well.
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Yes mine did cause blockage and now that I have had colon surgery in April (and it has not been an easy recovery) I have to have the added concern of it blocking again and the surgeon said there might not be any thing they could do.
However, My MO says he is the surgeon and has done his job. The Ibrance and Falsodex can break up the cancer through out the intestine and colon. She has seen it work with many of her patients.
We will see.
Thanks again.
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Stable scans with slight shrinkage in axillary lymph node and breast. I asked about the discharge and so long as its not bloody or a lot then it is OK.
Even better I'm cleared to do more vigorous sports so I can now get my rollerskis out of the shed and hit the fabulously paved area near my house.
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Sondra- Woohoo on stable with shrinkage !!!!!
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So I messaged my MO nurse today with some questions I wrote down. She said she will forward them to my MO to prepare for my June 28 office visit. But she as the nurse did comment on a couple of them.
She said my PR+ was "weakly" positive. That with ER- and weak PR+ we would not treat with hormonals anymore. MO said on the phone last week that maybe we could keep the Letrozole with a PARP in case some of the tumors were still fed with estrogen. So... treat or not. To be determined.
She said "possible" that the cancer could change back to ER+ but not likely.
That is the 2 she addressed as the nurse. The rest of the questions she is forwarding on to the MO.
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Bootsie7, I’m glad you were able to have surgery. I’m sorry you’re having a rough time with the after effects. I will be thinking of you and hope it keeps you pain free and blockage free.
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Thank you KBL!
I saw MO today and she ordered a back X-ray for the pain I have had past 8 days. To early for a Scan and the pain could be from my Piriformis or sciatica.
She agreed to 75mg Ibrance! Then my CBC came back very low in in just about everything! Thankful I followed my gut instinct
in requesting to lower the Ibrance dosage. Not sure I will be starting right away with my already low CBC.
But I did Start Falsodex today which she was happy about.
The responses from you and SF-cakes helped me today....grateful is my heart.
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Candy, wish I could be more helpful. I hear your struggle on wanting to know what's going on and wanting answers on whats next in line. Remind me, when is scan for you? Beginning of June? Will they tell you shortly afterwards once they see where your at? Targeted PARP sounds good. Maybe take a couple months or so with just the PARP to reset the hormone therapy and then add that back too?
Jackie, thinking of you as you move to Piqray. In your pocket always.
Aprilgirl- how's it going?
Cakes - glad to hear your body is agreeing much better with 75mg!
Cure-ious - still curious about your garden
MO visit for me isn't until the 18th of June this next go around so i'm going to TRY TRY TRY to not dwell in cancerland the whole time. Fat chance, but its the thought that counts. Besides a mostly shitty weekend (see steam room) - I did have some positive moments too to counter the splatter. Ladies where my mother in law lives planted purple irises throughout the grounds in honor of me last spring and they've come up to bloom again this spring. Gorgeous! I got to meet my nephews twin 10 mo old girls and hold them for the first time. UPS lost the 2nd part of my new lift recliner. It's been nice looking at the bottom seat of it. Wish the missing arm rest and back rest would show up. MIL can't order replacement until after 27th, so wait wait wait, everything was supposed to be here on 19th. It's going to be mid summer by the time i get to sit in it, lol. Ah well, something to look forward to as whats here feels nice and comfy.
Thinking of you all lately. I just finished cycle 18 at 100mg ( 12 cycles at 125mg, dropped to 100mg at my request due to SE for 6 going on 7 cycles) 1 week from now cycle 19. I get a bit more nervous as each cycle goes up. What is the median PFS on Ibrance? I can't seem to find it anywhere or I just can't read studies correctly. MO wants to set up scans after next appointment. I've already delayed/pushed them out an extra month. Y'all are gonna have to drag me mentally to do them this time around because I'm already sick of them 2 yrs into this.
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Bootsie7, that pain is awful. After my car accident in 2013, I almost had to stop working because putting my foot on the gas pedal to get to work was excruciating. I would get into my office and collapse in tears. I hope they can figure it out for you. I have a lot of joint pain on Letrozole. My doc has suggested Faslodex. I'd love to hear what you think after a few months.
Rabbit, I'm so sorry about your lift chair. That really sucks. What is it about these delivery companies anymore? You either don't get the package or the box is beat to shit. Ugh.
I don't know about progression-free survival, but I've been on Ibrance/Letrozole for two years and have been stable, and my cancer is in every bone, bone marrow, and stomach. I'm grateful. I think Candy has been on it for three years, if I'm not mistaken.
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Rabbit- Median PFS for Ibrance is 24 months or so. I have been on it 42 cycles now. My next scan is June 25th/see MO the 28th. I do not know about PARP "resetting" hormone therapy--- still have not gotten that answered.
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Rabbit - this link is probably the breakdown of study results that comes closest to your story since it mentions Zoladex - https://www.breastcancer.org/research-news/ibrance-w-faslodex-helps-advanced-hr-pos-survival
If my recollection is correct, study results were slightly different depending on if you took Letrozole vs Faslodex but not wildly different. I also looked at rwPFS results but in my opinion, those results have so many variables in various percentages, that I find it hard to apply the results to my exact case. From the rwPFS, my take away is good news and I’m leaving it at that. I’m just going to ride this wave as long as I can and try not to dwell on the noise in the back of my head which wonders how long my ride will be.0 -
Rabbit - After reading my link again, I realized that the stats were for OS and not PFS. Sorry for the confusion.
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Rabbit - Take 2...
This came from an analysis of the FLIPPER study. The primary goal of the study was to measure PFS at one year. From February 2016 to January 2019, 189 patients were enrolled in the study; 94 received Ibrance with Faslodex and 95 received placebo with Faslodex. Their average age was 64 years; 45.5% had newly diagnosed metastatic disease and 60.3% had visceral involvement.
“Average PFS was 31.8 months with Ibrance versus 22 months with placebo. Overall response rates, including all partial and/or complete tumor responses, were 68.3% in the Ibrance group compared with 42.2% in the placebo group. The one-year PFS rate was significantly superior for the Ibrance versus the placebo group in those with visceral and newly diagnosed metastatic disease, but not in those with non-visceral or recurrent disease."
I'll say it again, it can be hard to correlate my particular journey with these studies and we know so many who have beat these odds (and unfortunately those that have not). I like to read up on the stats and then go about my life. I want to spend my time living more and worrying less (as much as possible anyway)
Hugs
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Thanks to everyone talking about PFS on Ibrance, those conversations always help me so much.
Rabbit, the purple irises sound beautiful! Sorry you had to deal with ridiculousness on that visit. I will help drag you to your scans, mine are next Friday and I do NOT want to do it. But I shall. Again. I'm trying to be in a place of gratitude about it, and will keep working on that, moment by moment.
My yard and my flowering plants have helped keep me sane, I recently found this little outdoor bear and bunny and they are now happily reading away outside.
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KBL - I will keep you posted on Falsodex. Joint pain is no picnic.
Had my x-ray today. Hoping it is not the cancer. Like you it is extensive in my bones & bone marrow and intestine. Hopefully I just tweaked it and maybe some PT might help.
SF-cakes Love your bear & bunny! Going to try to find some for my "never stops reading" daughter. So cute.
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Bootsie7, I’m thinking of you as you wait. Not many that I know of with it in their bone marrow as well.
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I have a couple questions. I was supposed to start the 3rd cycle of Ibrance yesterday, but the Neutraphil level was too low. I read online that Tramodol and/or Alleve (both of which I have been taking 1 each per day) can cause Neutraphil level to decrease. So I haven't taken either one today. I need something for pain, but I can get by right now. Has anyone been able to do anything holistically to improve the Neutraphil level? I put in a call to the MO to ask about whether stopping pain med would help, and I am waiting to hear back. I am scheduled to be retested next week with another blood draw.
Now this is trivial, and I am hesitant to bring up this topic, but I have thin hair and have started shedding a good bit during the 2nd round of Ibrance. I'm also on Letrozole which also causes shedding. Has any one been on these two long term and kept a reasonable amount of hair on their head, particularly if your hair is thin to begin with? Did you purchase a hair topper or wig? And at what point? Did the shedding slow down at some point before you developed balding areas?
Thanks!
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Hi Gokale,
I have found that diet impacts my Neutrophils. I changed to a whole foods diet. I also was on 125 mg and was reduced to 100 mg. I think doing both did the trick because I haven't had to delay my cycle since.
Regarding thin hair.: My hair is very fine and when I first started ibrance I lost a lot of hair. I started taking 10000 mcg of biotin and started using a biotin shampoo. My hair has grown back since the dose reduction and adding biotin.
Ladies,
Has anyone had any issues with ringing in the ears since taking I\L? I've had my hearing checked and that is normal. I haven't found that SE listed for ibrance or letrozole. I see my MO next Wednesday so I'll mention this. I had a brain MRI awhile ago, maybe I need to ask for another?
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SF-Cakes I LOVE your bear and bunny!. Too adorable!
GoKale, are you on the 125 dose of Ibrance? I started on that dose, but was lowered to 100 after 4 cycles. Neutrophils were too low on 125. They're still low on 100, but not as bad. I do take Tylenol PM at night, but my MO has never mentioned that as being a contributor to a low ANC.
Regarding the hair loss, maybe I've had some. It seems like there is a bit more in my comb, but I don't get any big handfuls. I haven't had or noticed any ringing in my ears. That would be annoying, like when I used to hear my pulse beating in my ears. That was a long time ago.
Carol
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Hi GoKale - I started my second cycle of Ibrance (125mg) last Monday. I had to take two weeks off after first cycle because absolute neutrophil count was low after first week off - 0.7. After Second week off, I was up to 1.7 and able to restart. I put myself on a strict diet after receiving my Dx. No processed foods, no added sugar, lots of fruits, vegetables, nuts. Only whole grains. No dairy. A little chicken and turkey. After my counts were low, I upped chicken and turkey and made sure to walk daily and get some sunshine. I also am being better about taking my calcium and vit D tablets (3x daily). I had bloodwork on Monday (at Day 8), which is unusual, but aligned with other bloodwork I needed to have done before meeting with my MO, and my ANC was 2.9! I was surprised it had gone up since the week before. My MO also said wbc production is cyclical, so, not sure if I should read into anything too much. I asked about dose reduction and she said if my counts drop below 1.0 again, we can consider it.
Regarding hair loss, I have noticed a lot of hair loss. Similar to postpartum hair loss. I have been loosely braiding my hair before bed in the hopes that will keep some strands from falling out. I also don’t brush or wash it too often (every few days).I have thick hair, so I don’t think anyone else has noticed yet.
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I lost a lot of hair the first three months but then it seemed to stop. I added 10000 of biotin to my supplements and that helped a lot. My hair isn't as thick as it was but it looks fine.
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Hi GoKale4320,
I've been on Ibrance for 3.5 years now, and I swear by Nioxin - it's a shampoo for thinning hair. My hair is also naturally thin, but using this shampoo has really saved it. It's long!
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Hi, GoKale, I will be starting my 18th cycle of Ibrance and have experienced hair thinning and a receding hairline shortly after starting. I always had very thick hair but lost it all while on chemo in 2010. When it grew back it was thinner but still looked nice. Now I have resorted to wearing a wig and I really don't mind it; never a bad hair day! I am too chicken to try the hair thickening shampoos and other stuff.
Hi to everyone else. You are all so helpful and appreciated.
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