Ibrance (Palbociclib)

Leapfrog

Hi Romansma and all, I live in Australia where Ibrance has only recently become available to buy but I was fortunate enough to procure a place on a trial of Ibrance and Letrozole (Femara). I have Stage IV with mets to the bones and have just finished my sixth cycle of Ibrance. I experience Grade 3 neutropenia every cycle (low white cell count) and so far have needed to have a two week break rather than the usual one week before I can start a new cycle. The protocol for the trial is that the neutrophil count needs to be close to 2 but mine drops to .6 by the end of the cycle and during the second week's break it climbs laboriously up to about 1.6. They allow me to start a new cycle because it's just within the limit of the protocol. How it translates into daily life for me is that by the end of the three weeks of taking Ibrance I feel very run down, tired and weak but there's no way this is going to stop me from continuing. There's also the usual side effect of mouth ulcers and cold sores but my onc has suggested I rinse my mouth with Gelclair which works wonders by reducing the soreness and strengthening the mucous membranes in my mouth. It's difficult for me to assess how much joint and muscle pain I experience because I also have pain from the bone mets. As for hot flushes, I haven't found them to be any worse or more frequent than they were when I was taking Letrozole alone. I have experienced some hair loss but it's not at all noticeable. I find more hair in my hair brush than I used to and my hair does look dry and less healthy but it's not causing me any real problems and according to my onc that side effect has been overstated. I take my tablets at lunch time, simply because that's more convenient for me and I have to take other medications for pain in the morning so I try not to take too many meds at one time. Nausea isn't a big problem, just sometimes for the first few days after starting a new cycle. My biggest problem is fatigue!! Wow, I never knew you could feel so tired. Sometimes by the end of a cycle just getting out of bed is too much effort. Please don't let any of this put you off as I've been told this is the drug that's going to give me the longest life span. I've had to accept a much slower pace of life but at this stage I think it's worth it.

bigbhome

Z - Thank you for the information! I am going to request that test on my next appointment. I would like it for informational use also. In regards to your friend, I am terribly sorry for your friend and for you. I'm not so sure that I understand her husband side. There is going to be a door for him when she passes. I am grateful everyday for my dh and I know he would not do that. We have had many discussions about it and he feels like "for better or worse" are not just words, they are a commitment. I have offered him the for twice and he said no and if I offer it again, he is going to assume it's me that wants out. I thank God for him everyday! We had a lovely afternoon together yesterday but I think I will make his favorite dinner tonight! I know everyone is wired differently but I have to wonder how you can live with yourself after abandoning your life partner when they need you the most? Not judging, just wondering.

Wonderful news Grannax!

Hugs and prayers

Claudia

zarovka

Yes. I felt that this experience with my friend was a little reminder from the universe to appreciate my husband and my family. And all of you. I try to keep my rambling thoughts on cancer treatment and diagnostics and my worries here as much as possible ... and keep it out of my family life. We have very little cancer in our family time. I would not be able to do that without all of you. I think it helps reduce the stress on them, which is already quite enough, and will help keep us together long term.

Welcome Leapfrog - You will find a very wide range of experiences here ... from people who have no side effects to people who cant take this sh#t. And people for whom it works for years to people who, as far as I can tell, received no benefit. So far I have been responding and having a similar experience as you. I will say that early on I had a lot of "side effects" that turned out to be a raging UTI. They are very common on this protocol. In general, be wary not to assume symptoms are side effects. If it weren't for a very sharp and thorough complementary physician, I would have been fighting a raging UTI for months, all the while thing this drug was very very hard.

>Z<

IntoLight

Thank you all for the reminder to give my DH an extra hug tonight. I received my diagnosis the day of my 44th anniversary and at that time my DH told me he was looking forward to spending our 50th anniversary together. That was his non-romantic way of stating his commitment. Driving me to the doctor or waiting for me during an appointment is another way of expressing his commitment. We have not discussed this in words, but I see the grief in his eyes often. I cannot imagine the emotions of losing him voluntarily.

SandiBeach57

My DH said he was "lonely in advance". I gave him a Martin guitar..it was on his bucket list. Plus he gets many back rubs. He is everything to me and I realize with these recent posts, I need to do more for him. He deserves it.

S3K5

Z, I am one of those guilty ones who takes my DH for granted! Our 37th anniversary is coming up and I'll do something nice for him! Your friend must be devastated by this added stress in her life. Could you ask her to join this community forum?

I get so much support here and knowing that I am not alone in this journey definitely helps. I totally agree with you and I too do the same, "I try to keep my rambling thoughts on cancer treatment and diagnostics and my worries here as much as possible ... and keep it out of my family life. We have very little cancer in our family time."

Leapfrog, welcome! My experiences have been very similar to yours but it is not going to stop me from continuing this treatment, since my tumor markers are dropping. I have multiple spine mets. Since last month my MO dropped my Ibrance dose to 100 mg (from 125 mg) and my fatigue is bearable now. The efficacy data for 125 mg and 100 mg is almost similar. Is this an option for you? Please check with your MO.

Hugs to all!

Sandy.

Dianarose

Not a good day. My immune system is self destructing again . Hemoglobin even lower after the transfusion. Just had an electrocardiogram and back to the dreaded A/C chemo at 2:30. If this doesn't work I have maybe three months to live but when this happened last year it went downhill fast. I'm so sad. I'm 56 and never thought I would not be here for my 18 year old and my DH. Hate this f'n cancer!!

50sgirl

Dianarose, I wish I had the superhuman ability to rid you (and all of us) of this cruel disease. I have been praying for you and will continue to do so. I pray that your treatment will work and you will be around to see your son and DH for many more years. You deserve some relief from the pain, suffering, and stress you have had. I will be holding you in my heart as you have your chemo this afternoon.

Hugs from, Lynne

AnimalCrackers

Dianarose - you are in my thoughts.  I hope you find some relief soon and the chemo today knocks the crap out of the cancer!  Hang in there.  ((HUGS))

btw - where in Maine do you live?  Are you in Southern Maine closer to Mass?  Just wondering where you are being treated.  I go to MGH in Boston.

Dianarose

I go to the New England cancer center in Ma

zarovka

DianaRose - You are in my thoughts. I have seen as many astonishing turn arounds as I have quick declines. I know your situation is precarious, but take it as it comes. Praying that what's next is that the A/C works really well.

>Z<

JoynerL

Dianarose, my heart hurts for you and your precious family. I'm praying for you as you start chemo again. Hugs-

Chicagoan

Hang in there Dianarose-praying for you.

PatgMc

Dianarose, I'm praying that the A/C kicks the cancer to the curb until something better is found for you. I also pray that you have good meds for the nausea. Zofran worked well for me on Adriamyacin and it's available in instant dissolve. God bless you, friend.

cooperak

hi everyone,

My mother has bone mets 4 years. She was 3 years in xeloda but last year the CA 15/3 was increasing from 100 to 900. Then started Ibrance and flasodex 2 months go the CA 15/3 went to 500 in only 2 months, which is a great sign and the white cells are increasing. However the hematocirte decreased quite a lot to 25 then took 2 bed blood bottles went up to 30 but after a month and a half went again to 27.

The onc suggested to decrease the dose a bit since the TM is decreased 45% in 2 months and this should fix the HMC.

I read somewhere that Ibrance needs some time to stabilise the HMC. Any similar stories ?

Any suggestions?

Any similar stories ?

PatgMc

cooperak, my oncologist doesn't use the 125mg Ibrance at all. He gives everyone 100mg and every single one is doing well. I pray that your mother does well!

bigbhome

Dianarose - let's hope a/c kicks butt! I am praying for you! Sending gentle hugs!

Claudia

ShetlandPony

Dianarose, I feel the sadness. It's just so wrong. I am joining the circle of love and hope around you at this uncertain time. I hope the chemo works super fast for you!

SP

Cure-ious

DianaRose- You are a remarkable woman. I marvel at your ability to cope with everything being thrown at you right now. Just focus on getting through this part now, maybe you can feel all of us standing beside you right now, the room is crowded!!

And when you get through this crisis, we will help you to fight for better times ahead.

SandiBeach57

Dianarose, I am also standing with our met sisters to give you strength while you undergo AC. In Oct 2016, I was dying as the tumor cells traveled from my liver to my lung arterioles and could not breathe. I was started on emergency AC and was hospitalized 21 days. I survived. The AC almost killed me but it DID kill the tumor cells in my lungs. Visualize yourself surviving this treatment. Don't give up. You are loved from afar and all over the world.

auroaya200882

Dianarose, ditto what others have said. I've got you in my prayers.

Aurora

Faith-840

Dianarose, I'm so sorry to hear your news, please know you are in my prayers. As Z has said, there have been remarkable turnarounds with the Chemo. Just remember, God is the final doctor and only He knows when we will die. When I was first diagnosed 26 years ago, I read a book that said there is no cancer that someone hasn't survived and I believe that. Just imagine that Chemo killing all those rotten cancer cells.

Hugs and lots of prayers,

Faith (in the future).

cooperak

thanks a lot

Any other stories of Ibrance and low Hematocrite, and what did you do to mitigate that ?

Thanks in advance

Blume

Dianarose so sorry to hear your news, praying for the AC to work for you and get you feeling better again and to give you many more years with your son and DH

Iwrite

Welcome Leapfrog-Sorry you are joining us, but it's a great place for information and support.

Dianarose-Thinking of you and all you've gone through recently. Sending healing prayers for a good response and mid SEs to get you to a better QOL for a longtime.

Dianarose

Thanks for all the prayers and kind words. I really appreciate and love all of you.

The heart medication has brought my heart rate down to 97 which is good but BP up a bit.

I'm not going to lie, I'm terrified. If this doesn't work they really don't have a plan B.

Grannax2

Dianarose I am praying for you and your family. I imagine your biggest concern is for them. You are bravely facing this and I admire and respect you for your determination. And for admitting how terrified you are. We all would be. So glad that you feel free to share your feelings here. I'm sure there is no one here who hasn't imagined what it would be like to be in your shoes. 😢

50sgirl

Dianarose, We will continue to pray for you and your family. You are not alone. We are with you in spirit. My hope is that you will soon be able to look back on this dark time and realize that you have lived through it.

Hugs and prayers, Lynne

Bens_Mama

Hi ladies, I'm new to this thread. I've read through some of the latest posts and am sending out prayers and healing to Dianarose and to the rest of you!

I will be starting Ibrance next week and was just looking for some tips, tricks, suggestions on how to best manage this drug. I know we're all different but would love to hear from you.

I've already been on taxol, xeloda, a parp inhibitor through a clinical trial and this is my next drug. It's been 2 years and 4 months since diagnosis and goin strong other than this recent setback.

Warm hugs,

Mari

PatgMc

It's good to know about research even when it's just in the mouse stage! This one is about to start Phase I trials.

https://news.uthscsa.edu/new-agent-blocks-growth-r...