Ibrance (Palbociclib)
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Holly thank you - what helpful information that the prednisone worked for the allergy to the CT stuff...I think it's called Iohexol or something. I'm feeling a little less anxious thanks to you.
Baby, I'm just finishing cycle 2 of ibrance and it has not been bad. For me there is a little bit of intermittent nausea but it's helped immensely by eating something. I have a little heartburn here and there. I had diarrhea the first cycle but not really on the second so far. Fatigue is a factor for me on the last week of the cycle, but I haven't missed anything because of it (well...I had to give my Hamilton tickets away which was a huge disappointment, but at the time I was just too tired to stay up that late)
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Thanks for info on Ibrance. I have a lot of health problems besides cancer. Digestion problems come from having GERD and IBS since I was 26 yrs. old. As I said been in a "flare" for 9 months. Can't leave house after eat until have gut ache or bowl movement. Hasn't been this bad in yrs. Also take blood thinner, have had 2 clots. One in lung and other in leg. Trying to go to a natural diet to see if can slow down problems. Hard to eat with this going on. Have lost 55# since last June I do not get hungry or feel the need to drink any thing. Dehidrated myself last week, went to ER to get a bottle of "juice" put in. Kidney function is down to 44, doctor wants it 60 or more. So pushing water but gut does not like it and stomach ache worse. Want me to drink 8, 8oz glasses a day, I force down 4. Have blood work next Tues. to see what function is.
My first cancer was in 2007. I chose bilateral mast. because Dr. said would come back in other breast. Had chemo, 5 treatments, before they had to stop because the chemo invaded my left lung and kidneys shut down. Had to go on o2 for 9 months, kidney function came back but was low. Did do all of radiation, 1 month, 5 days a week. I had lymph nodes on left removed because the sentinal nodes showed positive for cancer cells. Had 12 years, numbers stayed in 30's. saw more grandbabies come into world and 2 greatgrandkids also. Shocked when last March I had just a twinge in right side of upper chest. Scan showed spots in breast bone and one rib on right side. Also showed a pocket of liquid in left lung. # was 185. It was back and I have not handled it well at all. Was on Femara for 5 yrs. after first treatment with no problems, so put on that first then Kisqial? Took for one month. As said this is when stomach went bad. So stopped Kisqial. My daughter and grand daughter wanted me to try marijuana RSO, strongest out there. Took it for 10 months, never could increase to dose they recomended, got so high could only take at bed time and some days still woke up with a high in am. Numbers drop in half first month on Marijuana, next month went down to 40 and stayed there for one year. In April 2019 #'s climbed 5 points, still there. Stopped marijuana the end of April to see if stomach would get better, it did not. Doctors have said it is stress causing it. Put on Bentyal last week to see if calm down gut. Hopeful. Also take probitics Found out last week Femara has caused osteopenia in hips and lower back. Chance of breaking bones there has gone up. Have lost 1 3/4inch in 2 years. I feel so overwhelmed as one thing after another goes wrong. This is why have decided for now, no new treatments.
I should also tell you that I am care giver to my husband who is down to 38% lung function because of COPD from smoking. He still smokes a little and, of course, we clash about that. He can do very little. So lots on me and my body is telling me it is in trouble. I just had my 76th birthday. What a day, we decided to go for long ride in country and eat out, made it about 40 miles from home when gut started, hubby found a gas station for me. End of birthday, went home.
So, my life is pretty bad right now. Am making gut top priority right now. If can not eat cannot get better. Know my fibromyalgia is a lot of it because if side effect to meds I get, if side effect for 1 in a million, I GET IT.
Glad I found this site, helps to see what others are doing or have done. Thanks
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Moomala--- Praying that you get approved for SSD quickly. And that you get through to them on the phone on Monday. Frustrating that you got disconnected after being on hold---I hate when that happens. I haven't decided yet if I will apply online or in person. I guess I will just report the MBC even though I have autoimmune issues also, rheumatoid arthritis and Sjogrens. And I had TIA last month. Some say to list everything you are diagnosed with and that they will get your medical records so give all your docs contact info---rheumatologist, primary, and onc. But others say to keep it simple and just give info on the cancer. I don't know what to do. Yes the cancer is the most important and the effects of the treatment is my problem and the Compassionate Allowance is for the terminal illness, but the other health problems also play a part. Not just black and white.
Baby99-- Wow. You have had it tough. Sorry you have so much to deal with.
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Hi when I blow my nose...I have a little blood not like bloody nose dripping or anything but I was wondering if this could be from Ibrance?
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it can. Happens to me every once in a while. Gets worse with when I have an upper respiratory infection, and am very dry and clogged up and blowing my nose a lot. It is a normal side effect of Ibrance. Always good to let your MO know any side effects so they can help keep track of it. Hopefully it will go away soon!
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Hi everyone!! Is low hemoglobin & RBC a normal side effect of Ibrance? I know low WBC & ANC is well known, but not sure about RBC.
Before IBrance my Hgb was 13 & kept dropping to 10.5 now. How low should be a concern?
Thanks in advance?
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Hi all,
Just saying hi because I'm finally joining the club and starting my first cycle of ibrance today. I finished AC chemo at the end of January and have been on letrozole since the end of Feb., but a few random, persistent chemo side effects have forced me to wait on ibrance. Thanks for the tips you all continually post here! They're helping me feel as prepared as possible.
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Mshar - Welcome to our club, the one none of us ever wanted to join. Many amazing people here will help guide you through this new minefield you find yourself in.
It does get a bit easier with some time. I started Ibrance cycle 19, just 33 minutes ago...
Gumdoctor
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baby99, I’m so sorry to hear they put you on Kisquali with your known IBS. It’s known for having a big impact on the GI system and being prescribed along with a bottle of stuff for the diarrhea. Hopefully ibrance will be much easier on your
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Exactly, jensgotthis. Diarrhea is such a common side effect of these treatments. You'd think they'd pay attention. Ibrance should be easier in this regard. And if it does crop up, lowering the dose can clear it up totally.
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Hello all,
I have a question that I really could really use some help with. My recent MRI showed the number of Mets to to my spine had increased. I finish radiation tomorrow and had my mo appointment today. He is recommending i stay on the ibrance/femera. My question is wouldn't I be better off switching treatments since there was an increase in the number of Mets, which I would consider progression? The MO stated that since the Mets are contained to bone he is comfortable staying on this combo. If I restart the ibrance this would be my 44th cycle. If anyone has any knowledge on this I would be very grateful some guidance
Thank you
Melissa
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Melissa - it sounds odd to me, but I haven’t had progression “yet” so I haven’t faced your situation.
Personally I would seek a second opinion probably with any progression UNLESS I feel 100% confident in my MOs choice.
It doesn’t sound like you are feeling that confidence in yours. It sounds off to me, but perhaps others who’ve had progression in the bone can chime in!
Please let us know what happens!
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Hopeful first timelurker here! Amazed by all the ibrance dancers. Primary dia - 2/08.....bone/organs-1/18. carbo/taxol/xgeva - 5 months. Started ibrance/ letrozole / xgeva June/18. Thankful for a year of regressing tumor markers and a manageable lifestyle. My doctor relies on TM/blood test and symptoms. Scans only as needed or requested after initial scans. I have read on here lots of different approaches to this. Should I ask for scans or trust the blood test and tumor markers? Such a hopeful time for advancing medicine!
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Melissa. This really surprises me, but I'm no doctor. I would have thought a switch from letrezole to faslodex at least. I also noticed no mention of bone meds. I hope your taking something for them! Maybe it is time for another opinion.
Best of luck to you
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Melissa, I had some progression when I chose to back up on the Ibrance dose and time on/off Ibrance last year. (Sorry I can't remember exact dates.) I returned to 100mg at standard schedule and have had regression of bone mets again. (Started Ibrance/Arimidex/XGeva October 2, 2016.)
My oncologist said we will continue these drugs as long as there is regression or minimal progression. He also has stressed in the past that the amount of uptake can vary without there being a real change in disease. (I get PET/CTs.)
I don't think it could hurt you to go another 3 months and scan again. I might even go 6 months and make it to 50 cycles! It looks like with 44 cycles Ibrance is a good drug for you but you have to do what gives you peace.
Love from PatGMc
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Thank you to all who posted. I guess i will try this until my next scans. I trust my mo, he is the head of the oncology department, very knowledgeable and a really nice person. However, if there is progression anywhere I will insist on a new treatment. Now I guess I just worry until then.
Melissa
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Clickable link from 42young's post above:
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Melissa - I wrote you a long post and lost it...
Reader's digest version:
1. You are not alone. For me, more lesions show up on EVERY image since MBC dx in DEC 2017.
2. Apathetic/unsympathetic MO laughed it all off, scolded me and walked out on me over several visits. He claimed lesions are more detectable once they are healing and that they were there all along, we just couldn't see them...that MO was arrested for attempting to strangle his wife...some of you may remember that DEC 2018 story...
3. "Dr Strangler's" angelic replacement MO is monitoring but not concerned about progression from these previous images. We are doing a new bone scan and earlier than planned CT because of tumor markers moving into the "high" range for the first time.
4. I read about this quite a bit while it was happening, to calm myself down...bone mets imaging is NOT an exact science. Most of it is wide open to interpretation. I had to convince myself to loosen the reins of my worry because it was not helping to support me. I had to trust my MO more and that became much easier after Dr Strangler went to jail and was replaced by Dr Angel. Names were changed to protect the innocent and not-so-innocent.
I hope this can help you a bit, to know you are not the only one with unclear results. It happens to many of us here over time.
Best wishes while you wait for clarity,
Gumdoctor
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lissa, I am going to be really pleased if my MO wants to leave me on I/L. Ibrance is such an easy med and the others seem to be more difficult. I'm staying on I/L as long as she will allow.
Gumdoctor, I will never tire of your Dr Stangler and Dr. Angel stories. Never.
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Jaycee - HAHAHAHAHA!!!!! I am so pleased I can provide a humor break for you. I can even laugh about it a little bit now...time is a great medicine for many ills
Gumdoctor
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Jaycee - I just read an update on Dr Strangler...
In May, all 3 charges were dropped because his wife failed to appear in court. Her credibility was severely questioned.
This means he might get his job back...I will NOT go back to him. I hope they do not try to force me.
Gumdoctor
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He's a doctor. Maybe he paid her off. Unfortunately, it is still common for wives not to prosecute abusive husbands. I would REFUSE to go back to him.
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Gumdoctor, I've been anxiously awaiting word on your Dr. Strangler! I'm sad to see that he got off and especially sad that his wife was discredited.....yet another example of the powerful coming out on top. I can't imagine that he was charged and jailed without her having marks on her neck. The fact that she didn't show makes me especially sad. She will probably end up losing her life as that's how these things usually end.
Anyway, on that happy note....I'm glad you got away from him and that you now have the doctor everyone here deserves! Never go back!
Love from PatGMc
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Melissa I'm astounded when I read my scan reports and see so many old Mets are cited. As someone else commented I think they are more visible as or when they are healing. I'm sure you know that bone Mets are notoriously hard to get and keep a handle on. If you do trust your MO should you just ask for clarification. Don't line with these worries!
Pat I'm just getting caught up after a long pause Saw you had good scan results i couldn't be happier!
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My deep thanks to those of you who are adept and able to post these studies.
I have just a week on Ibrance/Fulvestrant, but this is so much more tolerable than any of the AI's. Only some wicked hot flashes and dizziness thereafter. Fingers crossed.
All the best
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PatMcG -
Thank you for your interest. There are extenuating circumstances to the story if you or anyone are interested...
They have been going through a contentious divorce for awhile. Wife was a heroine addict and went to prison for felony child abuse. She was out on parole and went to their house (pretty sure she was not supposed to do that). He was drinking and he snapped.
I believe he lost it trying to protect their 4 young kids (all under 10 yo) from his wife and it went very badly.
Her past is the reason for her questionable credibility in court.
We will never really know what happened or what is happening now in the aftermath. I just hope, if they retain him @ Washington University (where I go for treatment), they assign him to a different clinic and have him work with people with zero history with him.
There was quite a bit of info on him previously on Facebook and that appears to be gone now.
Whole story is tragic but hopefully things will turn around for all of them.
Gumdoctor
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Gumdoctor - thanks for the update on Dr. Strangler. Wow, interesting saga. I don't think he will work at the facility again. Too embarrassing. Perhaps he will move to a different hospital or something. Keep us posted.
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Gumdoctor, I guess only the people who were present know but when I googled the case, the early police reports say the children were upstairs and came down to stop him from strangling her and he took her into the kitchen, threatening to stick a knife down her throat. It seems that if he could get her to the kitchen, he could get her out the front door and call the police. This hits close to home as fifteen-year-old me had to get a knife to save my mother from my father with a knife at her throat. She never reported it to the police. If you like, I'll private message you the article or you can just google and find it on ksdk.com.
The other thing I'd question is his fitness as a father home with 4 children under 10 and he decides to get drunk.
You didn't ask for advice but I can't help myself.....I would write a letter to the hospital's management and express my concerns about him coming back. When it comes to violence, past behavior is a reliable predictor of future behavior.
Love from PatGMc
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Pat thank you for looking out for me and others. I have read that and every piece of info on the net. I already wrote Dr Angel today and asked who I need to write to officially to express my concerns and position about not going back to him.
I read today he was arrested for DUI in 2017 so there have been issues over a period of time with him...
This too shall pass.
Gumdoctor
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