Faslodex + Pablociclib(Ibrance) treatment combination -
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Does anyone know if losing some of your hair, is more Faslodex or Ibrance specific? My hair is thinning; I get small clumps coming out when I wash my hair. It's taken a while, I'm on cycle 9, but it seems to have accelerated.
Thanks
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Thinning hair is a known side effect for Ibrance, but I think faslodex not so much. Most of the people that get it have been on Ibrance for awhile.
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Nina - since I was part of the hair loss group (lol) I can assure you it's from Ibrance. Sorry you are experiencing this.
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For the love of God will these hot flashes ever end. It's been over five years! I have 30-40 a day. Makes me feel like I'm going insane 😜
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Gabapentin 300 mg worked for me
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THANKS, I'll blame Ibrance for the thinning hair but I'll appreciate what I still have.
Dianarose- Sorry about your hot flashes. I was part of a study about15 years ago about hot flashes. They were looking into the drug "megace". This was an early chemo drug, and now in high doses is used to increase someone's appetite, and also may be used as a chemo drug. It was reported, as an aside, that patients who took megace had reduced hot flashes so they decided to do a study (with a placebo group) AND it worked!! When I took megace my hot flashes were very reduced. I have never seen this published or pushed by any Onc (probably no profit since it is an old drug) anywhere but it is something you can ask about? It was a very low dose so it did not lead to gaining any weight.
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Is there anyone here who progressed on Letrozole + Ibrance but moved on to Faslodex + Ibrance as a subsequent line of treatment ?
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nope because it is not covered by insurance. there are no trials showing efficacy but i think that there should be trials. I think we will see improvements in outcome in women who switch estrogen suppression methods but stay on ibrance. ibrance failed to work as a single agent ... so if letrozol fails the ibrance will stop working. when the ibrance/letrozol treatment protocol fails, we really don't know if it was the ibrance, the letrozol or both that failed.
another question on my mind is whether abemeciclib will be shown to work after ibrance fails ... its not out yet but in your shoes, LMWL, i would find some other treatment strategy and come back to CDK 4/6 inhibitors after abemaciclib is out. it appears to be better and may also be sufficiently different to really overcome resistance to palbociclib.
>Z<
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Letmywife - I was on Ibrance and letrozole with very good results. When a few of my mets became active again, onc added in faslodex, so I was on all three for some time. Idea being that ibrance and letrozole were still suppressing most of my mets, so why abandon it, and instead they added on the faslodex. My insurance covered.
After adding in the fas, I had an initial drop in markers, then slow rising. At that point, onc switched letrozole out for tamoxifen (while still on Ibrance). Markers dropped more for awhile. So I definitely agree w Z that more research needed -- they just don't know yet on some of these head to head comparisons. I think my onc does not want to abandon Ibrance too soon since there's not any way to know which quit working --Ibrance or let. We're all unique, so I think some of it depends on extent/location of our disease and how we have responded. Hope that helps.
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LMWL, actually I am an example of going from Ibrance/ Letrozole, then progression, then switching to Ibrance/Faslodex. After progression with the Ibrance/Letrozole, my oncologist was ready to abandon Ibrance altogether and switch to chemo. But, before that happened, I took the Guardant360 blood test, which showed that I should respond to both Ibrance and Faslodex, but not Letrozole. My TMs increased my first 2 months on the Ibrance/Fas combo but then decreased 18% this past month. So, who knows at this point if this new combo will work or not, but I'm thankful for at least a few more months of Ibrance as this has been the most gentle treatment for me so far.
I'll update as I know more on this thread. Take care all!0 -
Fascinating Moissy. Fascinating Southernsurvivor. My oncologist has already advised me that I can't stay on Ibrance if ibrance/letrozol fails, certainly insurance won't pay. After reading your notes I will push back. It seems like a no brainer to me that one should stay on ibrance even if progression drives one to change hormone suppression strategies. But it is not the standard of care at the moment.
>Z<
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Z - just to add to my previous comment about my Ibrance/Fas combo, wanted to let you know insurance has paid with no issues. 😀0
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I have had pain on my left side since Tuesday. Just below my ribs. Not sure what's going on. I have been going to the bathroom ok so that's not it I honestly can't handle much more. First three months on Ibrance were great. Now increase in tumor marker and new pain. The thought of going back on chemo makes me want to curl in a ball and die.
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Z - My mo has already said if we see progression, he will switch me from letrozole to Faslodax, and staying on the Ibrance. Initially, insurance companies were following the study literally, which is not how it was intended. They now realize Ibrance can be paired with different hormone inhibitors.
Dianarose - I am so sorry to hear about your pain. Maybe, just maybe it is something else. I was having pain and swelling close to rib with mets and immediately, thought oh no. As my primary likes to point out, not everything is about cancer. Turned out it was a reaction to a new sports bra I had worn. It had since gotten a lot better except for the pain. He said that will take time. Who knew! So I am going to pray that is the case for you.
Hugs and prayers
C
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Bigbhome-the pain is like a contraction and is moving lower. My gut feeling is something is having difficulty passing. I have some Reglan and will see if that helps. I am in no hurry to go have it checked out yet as the first thing they want to do is pump my stomach. Been there, done that already. I am going to stick to soft
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Well, I'm disappointed again. Lab work this week showed very high liver enzymes and increase of TMs by 39%. Not sure what is going on after great results last month after 3 months on this combo. I did have a 101.5 fever last Thursday and a 99.5 fever on Friday with no other symptoms and then it went away. I took a few doses of Tylenol total, but none after Friday. I went in and did lab work on Monday and I wanted to see if I had a UTI or signs of any other infection. (Didn't have a UTI but they did give me a 7 day antibiotic to ensure if there was any infection, it would be taken care of.) I got the lab results from Monday back today at my doctor appointment. What the heck!!?? Liver enzymes were completely normal last time so I have no idea what's up with that.
So, at this point, I'll be doing a CT scan next week and repeat all lab work, including TMs, in 2 weeks. I haven't done a scan in 4 months, so I guess it's time anyway. All I can say is that I'm really tired of being on a constant roller coaster!0 -
Hello,
First time posting or writing. I just finished 1st 21 days of IBRANCE and 2 sets of Faslodex shots.... my question is about the HEART PALPITATIONS. I take IBRANCE at 8PM..since I thought it might avoid drowsiness or nausea...(never had nausea on ChemO IN 2014 Act combo). BY 10 PM my heart is racing @ 129-135 bpm. I do get rapid heart beats from too much Starbucks and take a beta blocker as needed. Calms it right down
It has happened nights 16 -21...I hope it will not happen on off week, so I can tell my DR. Has anyone had this SE? I do sweat at night but so far no other reactions.
Is it too soon for other side effects?
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Hi ! I've been off Ibrance for nearly a month. My white and red blood cells tanked after my first 10 days. I've had blood transfusions but still feel quite weak. I am still on Falsodex and Zometa. I may restart Ibrance this week. Anyone in this group have trouble with anemia at the start ? If so, how did you deal with it ? Has it improved?
Gardener, just a thought. Thanks to anemia my heart races at times. Normal activity like taking a shower or climbing the stairs can get my heart going. Next time you take Ibrance just do nothing afterwards and see if your heart pounds. It's possible you do something after taking Ibrance that brings up your heart rate.
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Z- It is possible that a good secondline treatment after Ibrance-Femara will be Abemaciclib-Faslodex. The thing missing in that equation is some PI3K/Akt inhibitor, and it's just not clear any good ones are out there- perhaps a very low dose of Affinitor (yuck).
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In case anyone else missed this, I was sad to realize that Noreen Fraser, the woman who co-founded StandUp2Cancer, died last March:
https://www.nytimes.com/2017/03/30/arts/television...
She created an incredible organization that puts together 'dream teams' of cancer researchers from different institutions and funds them to go after specific cancers- it's been a very successful program. She was only 63.
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Hello,
I'm feeling a bit down tonight and wondered if you could help. I just started my second round of Ibrance 125mg and completed the first month of 4 shots of Faslodex. The first 21 days of Ibrance I was able to manage the side effects, but 7 days into the second cycle I had to quit taking it for 3 nights to manage the out-of-control nausea, diarrhea, heart palpitations, fatigue, body ache and weakness. Ibrance is my last-ditch med. It's been 14+ years at stage 4 and 21 years fighting cancer altogether.
A few have posted that with time and perseverance the SE's subside. Would you agree? I'm pretty tough, but an onslaught of SE's like these all at once make giving up look preferable.
I had high hopes for this combo because I did so well on Faslodex years ago.
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Hello, I'm sorry to hear you are so down and feeling so many side effects starting Ibrance. I have no experience with Faslodex since I'm on femara but the first few months on Ibrance were tough for me. Nausea and alternating diarrhea and constipation, fatigue and lots of mouth sores among some things. I can say that most things have disappeared or become fairly mild including the fatigue which I think is helped by exercise.
I can certainly understand why you feel like giving up after fighting stage 4 cancer for 14 years but I'd like to encourage you to hang in there as I believe it will get better. That's amazing really, fighting it this long. Have you called your MO's office about this? If not, I would certainly give them a call, they may have a few ideas for you.
Good luck, you will be in my prayers. Let us know how you are doing.
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faith 840. Did you continue on the same amount of Ibrance? Or did you drop the mgs. ? Did you have anemia
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JFV, I have stayed on 125mg since the beginning, am now finishing #19 on Wednesday. I have some anemia but not enough to warrant changing my dosage according to my MO. I'll know more next week when I have my blood work done but I think things are ok. We are retired and I have the luxury of sitting down to rest if necessary, rarely do I lay down. I'm just not one who can nap. Can't turn off my mind long enough to relax. I'm not sure how I would feel if I was working full time. That's a whole different ballgame.
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Faith-840, thank you for your prayers and encouragement. I so needed it. Very glad to hear the SE's may subside. My oncologist is retiring, but I'll see him one last time this Thursday. I've been in contact with him via the online patient portal. I'll go back on Ibrance tonight and pray the diarrhea does not come back.
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Hi survivorlori, I had trouble with the 125 mg dose of Ibrance. My onc cut it down to 100 mg, and I'm doing much better. I still need about a month off between Ibrance cycles, because of low blood counts, but my last scan showed my cancer is "stable".
There is even a lower dose, 75 mg, which has also been shown to be effective, or it wouldn't be out there as an option. You and your doctor will find a treatment that works. Sometimes it just takes a little time.
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Nine Twelve, thank you. I will talk to my oncologist about modifying the mgs and/or the cycle. I'm feeling like there are still options, thanks in part to you all!
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I had to drop down to the 100 after the first month with all the SEs. Also dropped Femera and switched to arimidex. Did good for almost a year but then ... Thankfully my mo did the blood test and I have the P3K whatever mutation. So started on faslodex in April. Will have a pet in August. Fingers crossed it works. I feel better. Haven't lost any weight.
Ins has paid for everything so far and I receive help with my Ibrance and faslodex copays. No issues except with the cancer center billing. Same ol stuff.
I find my SEs did lessen over time especially after I dropped to 100 and got off Femera.I drink lemon in my water and that prevents mouth sores for me. I know it's counterintuitive but really pushing myself to walk especially the week off helps my fatigue. My mo also said to eat the rainbow. He really isn't comfortable with a bunch of supplements.
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survivor - dose change is an option, but the first thing to look for is some other layer of infection or something other than Ibrance that might be causing those symptoms, some of which are not common on this protocol. Diarhea for example ...
In my case, I had severe fatigue and other symptoms when I started Ibrance. I soldiered through it confident it was a sign the drug was working, proud of my resolve ... until a wise generalist checked me for a UTI and ... I had a rip roaring UTI. UTI's are common on this protocol.
I starting feeling intense fatigue about 6 weeks ago. Dropped all supplements looking for the cause, ready to drop hormone suppression ... until I stumbled on some kind of parasite in my stool. Still trying to figure out exactly what I have, but initial efforts to treat the parasite have improved my energy.
All that said, the protocol has side effects. However, I think the main source of side effects on this protocol is the hormone suppression. Faith and I are both contemplating changing our hormone suppression strategy to manage side effects. Neither of us have pulled the trigger but that is where I personally am looking to reduce SE's.
Hang in there. The hardest thing is fighting for your wellbeing when you feel like crap, and throwing in the towel
>Z<
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Dear ladies - With a heavy heart I am confirming that my dear Louisiana friend Steph/aka Naturegirl2 who started this thread passed away on July 12th. She was suffering from liver mets after so many meds including this combo which failed her. We started Ibrance on the same day. She was a lovely angel. Here is her obit.
Service Information
Visitation
Saturday, July 15, 201711:00 AM - 01:00 PM
Lake Lawn Metairie Funeral Home
5100 PONTCHARTRAIN BLVD
NEW ORLEANS, LA 70124
5044866331
Funeral Service
Saturday, July 15, 201701:00 PM - 02:00 PM
Lake Lawn Metairie Funeral Home
5100 PONTCHARTRAIN BLVD
NEW ORLEANS, LA 70124
5044866331
Stephanie Brown O'Neil
January 18, 1951 - July 12, 2017
Obituary
Stephanie Brown O'Neil of Metairie, Louisiana, age 66, left this beautiful earth on Wednesday, July 12 2017 to join her parents, Esther Quartano Brown, and Perry Henry Brown in eternal life with the Lord. She leaves on earth her lifetime companion, Millie Tizzard, a sister, Perrilyn Hutcherson (Bo), two nieces, Lindsey Neal (Justin), and Kyle Coste (Micah) along with three grand nephews, Alexander, Asher and Augustine Neal. Stephanie was a graduate of Archbishop Blenk High School in 1969. She was employed by DHHR, Office of Family Support as an Administrative Secretary and retired in 1995 with over 26 years of service. She was...0
