Ibrance (Palbociclib)
Comments
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Oh Dianarose I am so sorry you are going through this nightmare. My only advice for handling stupid hospital staff is CRY or threaten to check yourself out. I was hospitalized in June with a fever and had to use both strategies to get staff to pay attention to me. Of course you are in miserable pain and shouldn't have to strategize for attention. But, keep it in the back of your mind. I am so angry you aren't getting relief.
Faith, feel better as I mentioned above I did a few days in the hospital with a fever and digestive trouble. IV antibiotics, time and two blood transfusions brought me around. I too had a long break from Ibrance while sick. Restarted Ibrance at a lower dose and have just started antibiotic for a UTI. It's working !
Joyner L. Glad to find someone else with bone marrow mets.
Cisco I am struggling with taking Ibrance. I also cry a lot. Just signed up for phone counseling with an Oncology social worker. I'm hoping it helps
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Hi....I have only posted a few times, so forgive me if this has been covered. I have been on Letrozole and iBrance for 5 rounds. Has anyone else experienced their bio-marker numbers dropping but their tumor size increasing? My recent PET scan shows disease progression, but my bio-markers dropped to 51. I was doing pretty well on this drug comboand was hopeful I could stay on them for awhile. But the PET showed a different story. Would love to hear from others who have changed drug therapies and what you changed to.
Many thanks to all of you who share your wisdom and experiences here.
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sadiesservant, thanks for the advice but blood tests at the hospital showed no signs of infection. I'm beginning to think it has to do with my blood pressure meds and my generally not feeling well. I'm going to see my cardiologist tomorrow at DH's insistence. I called the MO's office to let them know (they already did) and ask about any pain meds to take for my sinuses and sore feet and told them I just feel awful. The nurse talked to the MO and he said I should just stop the Ibrance for a couple of months until after our trip to Italy and give my body a chance to recover. This won't apply to most of you, since I'm now 10 days into rd. #20 and so many of you are still in your first year of this drug but he did feel that taking a break can be good as long as I keep taking the letrozole. So, I guess the point I'm making here is that if you're sick and have to stop Ibrance for awhile, don't worry too much. Letrozole is a powerful drug too.
Keeping you all in my prayers especially those waiting for scans this week and Dianarose that you are beginning to feel some relief from pain. Nonahope, glad to hear you got the Zofran. Enjoy that wedding this weekend. Hope the weather in Cincy is good then.
Faith
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Faith, I'm sorry you're feeling so terrible and I'm glad your doctor is wise enough to know you need a break. I hope he will also consider letting you switch AIs. Femara made my feet hurt every time they touched the floor. Less than 2 months after stopping it, they were completely fine. My onc had been so sure I had Plantar F. but I knew better. I know the Arimidex may one day cause the foot problem but after 11 months on it, I'm still good. Take good care of yourself, my friend. I'm looking forward to 2 weeks off again soon.
Welcome, new friends! We'll all make it through this together.
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Interested in how the break goes, Faith. I may do the same for different reasons. Seems like a very good idea for you to try a few months with Ibrance and see how that effects this constellations of symptoms. Hang in there.
Z
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Ciaci - first ten days on Ibrance no side effects whatsoever. Then I started to get fatigue, cramps in legs (lots of magnesium helped) and soon just felt horrible. I stopped taking it because I felt so bad, and after a chat with my onc we lowered the dose to 100mg for the next round - which was better. Hope it works out for you.
Joyner and JFV: Am also in the mets to bone marrow club.
Faith and Zarovka - I'm currently on a one round break from Ibrance and am enjoying all my energy. Have only done two rounds, but I'm headed for a cruise on Friday with my 14 year old son - am sooooo excited - and wanted to enjoy it. And my onc thought that getting infections while out of the country probably wasn't a good thing - uuuh - yeah - no kidding! So I'll just be taking letrozole for a few weeks. I'm a bit on the stubborn side - have taken approved and non-approved breaks from Xeloda - and the breaks so far haven't affected my tumour markers or symptoms (I'm going hard with the alternative stuff, too - no idea if that's making a difference or not) and keep me in good spirits. Did everything I was told with Stage 3 but now....dunno.....
Faith, I hope you enjoy your trip to Italy - how wonderful!!
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vancouverdeb enjoy your trip. Curious if you MO feels bone marrow mets are in anyway different from other mets.
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Faith...when is your trip to Italy? How exciting. Like you, I just feel "blah" all the time. I thought I would have a bit more energy on my week off of Ibrance...but, can't tell any difference. I see the onco tomorrow. Lots of questions for him.
Hope
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Booboo1 My MO doesn't do TM because she says they are not reliable. I guess that's what happened in your case. Sorry you have progression. I have a PET tomorrow, I'm worrying and wondering what it will show. At 3months on IF I only had progression in liver. So, I had two y90 procedures for the liver mets. Now, at 7 months on IF we will see how well the lung and chest mets are responding. And, that will determine if I will stay on IF.
This crazy rollercoaster ride we MBC ladies are on turns my stomach upside down. Hoping for the best for you. Let us know what TX you will be on.
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Vanouverdeb, thanks for the info - I'm taking 100mg, so hopefully won't get too much leg pain.
Enjoy your cruise - I love cruising!!
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I'm on the 100 mg and my legs just ache. Wishing it would go away already
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Hi All,
Have any of you experienced decreasing RBC and hemoglobin on Ibrance? One thing I have noticed is that my RBC and Hb have been dropping ever since I started on Ibrance and never seem to recover. As a result, they are going lower and lower. It's been almost three weeks since I had Ibrance due to the infection I'm fighting but blood work today showed hemoglobin is now down to 8.1, a drop from 9.9 three weeks ago. RBC are now down to 2.63 10*12/L. I'm completely puzzled by this but surely this has to be contributing to my SOB.
Anyone have experience with this?
Pat2
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JFV - Thank-you! Regarding mets to bone marrow - dunno where yours are but mine are in my spine. That's how I was diagnosed - I literally could not move. The MRI showed not only mets in the bone of the spine, but mets that had basically taken over the bone marrow in three of my vertebrae. I guess when the bone marrow mets push up against nerves it can impact movement. They were pretty happy that I didn't have any numb spots (I guess this is the danger), and after some radiation and Xelora, the tumours shrunk enough that I could walk again. I guess it's a bit of an unknown - exactly how the tumour will impact the limbs. I've become a regular at the gym (great to feel strong after a couple of months of bed rest) - but there are certain exercises I can't do (I'll get weird sensations in my hand) - no aggravating the mets!
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Pat2- my numbers are like yours. They never rebound to normal.
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looking for some advice here. I thought maybe I had a blockage going on as I am always nauseous and can't eat more then a few bites st a time then I feel like throwing up. I have had diarrhea for at least three weeks with the exception of today which was more normal. I am nervous that I am not getting enough food. I have tried frappes etc... I started a probiotic but I know that can take months. Does anyone else have issues with eating and nausea on Ibrance
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Sadieservant....my RBC and Hemoglobin have also steadily dropped during my 25 cycles of Ibrance. When my hemoglobin reached 8.8 my MO gave me 2 units of blood and I truly felt like a new person. No more SOB, low blood pressure, etc. It is amazing how much difference a blood transfusion can make!!
Hope everyone has a blessed weekend
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ok, what does SOB stand for??0 -
Pat2, my red blood count is also down, although not as low as yours, but hemoglobin is within range. There are a couple people (lalady for 1) who've had blood transfusions because their hemoglobin was too low. Another thing to discuss with your mo.
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Thanks everyone,
I have flagged the ever diminishing red blood cells and hemoglobin with my MO but the last time I spoke to him about it I was at 9.9. Now at 8.1 I am knocking on the door of a transfusion. We'll see if he flags this. What I find peculiar is that I would have thought after a three week break my counts would go up. My neutrophils certainly have. Odd.
DianaRose, SOB is shortness of breath.
Hope today is a good day for everyone. I'm off to the hospital for the pleural tap to see what nasty bug I'm harbouring.
Pat2
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Dianarose - SOB stands for shortness of breath
Sadiesservant - my SIL has been on 4 rounds of Ibrance, but is also showing a small drop in hemoglobin & RBC lately. 8.1 is quite low and many MO'smight consider that in the transfusion range. I think you should discuss with your MO. SOB is a known side effect of very low hemoglobin levels & shouldn't be ignored. Wishing you the best!
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My hemoglobin is low too which would explain my SOB just walking. Learn so much from you ladies
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vancoverdeb glad you are doing well. I have lower back pain. But, I cannot tell how much is mechanical and how much is cancer. I am waiting for the next set of scans to help. My mets are also in my arm and leg and pelvis bone marrow.
Ladies who are dealing with low WBC. I have had two attempts at Ibrance and had my RBC as low as 7.7. I had two infusions and a long wait until my second attempt at Ibrance. I can tell my RBC is low again. I had a blood test yesterday and will find out if I get a transfution this week. The SOB does not seem to improve on their own. I also have a fair amout of bone marrow mets. So, my body really doesn't want to make RBC.
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Pat (Sadieservant) - As Cive correctly recalled (memory kudos) I had 2 units of RBC during second round of Ibrance when hemoglobin dropped to 6.8. Onc asked how I was driving to work - no kidding I was taking Uber! His advice is if it drops to 8 or below get a transfusion. I felt so much better and it has lasted. I'd welcome another one. lol Met my new onc yesterday, no need for a port, we will start Abraxane 8/15 - not sure how many rounds. She made me feel so much better because I said after chemo are we going to Xeloda? She replied we have about 10 choices! Bravo medical research! I will keep Team Ibrance posted. I made it 18 rounds - wishing you all a long run. Z - how are you doing after your fall? JFV - keep up the good work, my sternum mets healed and I don't make RBC very well now either. Dianarose - sending you kind thoughts. One last point - after full check up yesterday - Ibrance KILLED my lung mets. They were gone after 12 mos - do not give up. I have bone and some liver progression, and will take 6-8 weeks off work for chemo and cold caps. Take that cancer! Here is a pic of Omaha beach D Day memorial. (()) Claire
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Thank you lalady. Just found out my RBC is in the 9s. Very excited that they have improved while on 100 mgs Ibrance. I may actually make the 21 day cycle this time. Best wishes as you start chemo
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Dear Grannax2,
Thank you so much for your reply. My OC did tell me in the beginning that she does not rely on TMs but still used them to track progress. I must be one of those patients who TM tracking does not work. I am not sure yet what my next move is. I will post once I know what's next.
I agree with you about MBC. Rollercoaster is a good analogy. I try to focus on something positive whenever I have a letdown, but sometimes it's really hard. Keep the faith as ai will.
Thanks again
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Hi LALady. I am in Whistler for the week. Not in pain, mostly not on pain meds, but not biking either. But a huge number of steps providing mountain biking valet services for my family. Fun. 6 weeks of chemo will knock the socks off those liver and bone mets. You and I will be dancing with NED by the end of the year and discussing more trips to far flung places.
>Z<
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Welcome to my part of the world Z. Hope you have a fantastic time in Whistler (but next time you need to hop the pond to the island - great cycling)
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Nonahope, thinking of you and praying you feel good for the wedding tomorrow, the weather looks great there for Saturday. Hope your MO visit went well yesterday.
Dianarose, you are always in my prayers as is everyone here. I also have a lot of nausea and I think it's from the letrozole as I'm off the Ibrance for now. I know you're worried about getting enough to eat. I have been trying to drink a protein shake everyday. The one I use is from BioCem 100% whey protein, it has 20 gr. of protein in every scoop. I use it in almond milk but you can use water or regular milk also. They have vanilla and chocolate flavor. Maybe you can get that down. One other thing, I'm using probiotics twice a day and I really believe in them.
LaLady, thanks for the pictures and good news to hear that Ibrance killed the lung mets. Praying the Chemo will knock out your other mets and as Z says, we'll be dancing with NED by the end of the year. Keep us updated, you are in my thoughts and prayers too.
Z, enjoy your trip to Whistler, but sorry no biking for now. That's a bummer, I know as I really miss biking but I'm always so dizzy I was afraid to get back on the bike. Maybe now that I'm off the Ibrance for awhile, that will get better. I do think I'm starting to have a little more energy. I had been feeling really awful, even though my numbers weren't bad.
Hello and prayers to everyone else, more later, off to an appointment right now.
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Faith- I started a probiotic last week. I did read it can take months to be a benefit though. I don't take Letrozole. I get the butt shots, unfortunately. I am going to try to make some shakes. The nurse said to use powdered milk as it had protein and less expensive then protein mixes and no bad taste . Belly mets suck! Never imagined how much we take something as simple as eating for granted.
My friend is here cleaning my house. Really thankful for her.
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I never had any side effects to speak of except my hair thinning. And it still is. I've been on ibrance and femara since Jan and just started exgeva in June.....I feel good and try and do as much a I can to continue as normal as I can .good luck hopefully you will have no side effects either
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