Ibrance (Palbociclib)
Comments
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Tanya, thanks!!
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Thinking of you today Pat. Fabulous piece. Sending hugs
Lauren, you are awesome . What a great educational info session. Congrats for being so brave to share your story with the rest of the world
Just checking on you dancers. You are always in my prayers. Maire
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Lauren, wow....good for you!!
Pat, just seeing your Ferris wheel. Love it!! And SOLD already.....! It’s sure to be happy in Myrtle Beach
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SkyFly, there has never been any sign of anything in my breasts. They didn't know what had caused the horrendous pain (or rather what caused the lesions on my spine) until the biopsy came back. Initially the assumption was that I had ILC that they had just missed but nothing has ever turned up. My sense is that this is bizarrely rare but my amazingly wonderful MO (in every other possible way) doesn't like to talk about about it or speculate. I get the impression she thinks I don't believe I really have breast cancer ...
I've tolerated the I/L combo extermly well. A lot of fatigue and other odd side effects that come and go -- a little hair loss, buring scalp, watery eyes -- but I'll take it all. Most people assume I'm "cured" forever.
I hope your Mom gets the nauseau until control soon!
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Has anyone else on Ibrance/Letrozole had a sore throat and stuffy nose? I don't believe it is a cold because cold medicine doesn't help. My throat is just really sore on the left side. Also has anyone else done radiation for pain management? I was really hoping not to but my left hip has been a bugger at night lately and nothing helps.
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Penny and skyFly, I have never had anything show in either breast either. My original dx came because of an enlarged lymph node under my arm, but an MRI showed nothing in the breast. My MO has never hesitated labeling it BC because of the make-up of the tumors.
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IntoLight and Penny, that’s really wild
I suppose less disease burden is always a good thing but still probably unsettling for you guys. I wonder how common this is. 0 -
Thanks for the tip, Tanya!
Twinkle cat - I do get more nosebleeds since Ibrance but I chalk it up to the intense dryness caused by both Ibrance and Faslodex. I've never had anything like you describe and I’mso sorry you had that experience!
Grannax - what's going on with your heart? Didn't you update last week that you we're having an issue?
Love to all,
Lauren
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CrazeeJane, I often feel like my glands are swollen in my neck and that I’m on the verge of getting sick, but then it lessens, it’s been very bad the last few weeks. Am going to try adding some claritin
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Good Morning all: Sorry for everyone struggling with side effects or other issues. I go in for a 6 mo. scan Friday and the anxiety is starting to set in. I see my MO on monday for results and wont be able to bring myself to look at what it shows till Italk to her. I was dx with du nuovo bc stage 4 in Jan 2018, with a 16 cm tumor! No other symptoms though and the only effects Ive felt so far has been from I/L. My last scan showed no metastasis, initially I had it in the chest wall, pluera and lungs. Wonder when this treatment will fail for me and whats next and its so helpful to see how you all are dealing with your treatments.
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Correction on my last post. I was diagnosed in Jan. Of 2017
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IntoLight, glad to be in such fine company. :-)
skyfly, the stat I’ve seen is that about .5% of MBC patients present without a primary. There have been some hints on the Internet that it’s a positive prognostic factor — my DH says he found an article indicating that it can signal a very strong immune system —.but my MO hasn’t explicitly said that. Could be wishful thinking. Maybe IntoLight knows more? FYI I’ve never heard of another case where at the very least at least a lymph node hasn’t shown involvement. Not the way I,d choose to be one of a kind!
CrazeJane I often feel a cold is coming on but then it clears again. more importantly my bone pain did steadily diminish over the first few months on this combo. Hope you experience experience the same!
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Hey has anyone heard from PatG?!?
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Hello, friends, remember the me who was saying I'd take an Ibrance break regardless of what my PET/CT said? Well, that was another me. A braver, bolder me. Smartypants me! I had some spots with increased uptake this time. A spot on my sacrum and one at L10 and the internal mammary node that continued to have uptake. None have the high uptake shown in September, 2016 but I'm not feeling bold enough to take a break.
(For those who don't know my story, diagnosed with BC in 1994, I was first metastatic in March, 2012, then had widespread bone metastasis in September, 2016. I had a remarkable response to Ibrance/Arimidex/XGeva and that has continued. Until this scan I continued to have zero SUV except in the mammary node.)
Here's the new plan: Since I have a bottle of 100mg left from the break I took for pneumonia and the 75mg is on the way, Dr. Smith suggests that I alternate days with these...100 today, 75 tomorrow and back & forth. I'll also go back to 3 weeks on, 1 week off instead of the 2 weeks off I've done for 3 cycles. I still don't have any regrets about the way I did it. This is, after all, a grand experiment!
He also sent my reports to the radiologist to see if it's wise to hit these spots with a little radiation. I'm not in any pain so she may suggest that we hold off. If I do it, AFLAC will bequeath $300 a pop!!
So life goes on. I have paintings to finish and a December show to do. I also have the meeting about the new Memphis MBC group on Sunday. Many thanks to those of you who sent me suggestions. I'll share the name of the group with you: "Hope Up! Together we rise over MBC". You're all honorary members!
Much love and thanks for your sweet prayers.
PatGMc
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Penny, nope, I know nothing more. I searched for a long time to try to find someone else without a primary and didn't find anyone until I had been on this board for awhile. I am just watching the ride and learning as I go.
Pat, good to hear from you. Your mix of doses sounds interesting and adds another crazy wrinkle to the treatment dance. I am on a break due to pneumonia (this is the beginning of my second week off) and I feel worse today than the last couple of days, but tomorrow is a new day. I see my onc next week so I am assuming she will put me back on then. This is the first time ever for me to take a break, and I have always been on 125mg. We are all different! I am just happy to be off the second antibiotic I was on at the same time for aTI. The two of them messed up my system royally. Chris
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Chris, I'm so sorry your pneumonia is hanging on. My time with the flu and pneumonia was truly the sickest I've ever been. Antibiotics make me feel especially terrible and put me in a blue funk. I'll be praying tonight that you feel much better this week.
Love from PatG
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Oh, Pat...I'm so sorry that the scans didn't show what you wanted. But, you and your wonderful Dr. Smith have a plan. You got this, girl, even if not exactly the way you had originally intended it. Hugs to you-
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Chris....Hoping you feel better soon.
PatG....That is an interesting plan. You have lots to keep busy with your upcoming art show etc. I wish you the best.
Hope
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elena. What a shock it must have been to be DX de novo with a tumor so large. Sounds like you have had a remarkable response. We are on almost the same timeline. I was DX with MBC December 2016 and started IL January 2017. This is the time we all get anxious and ask/wonder what's next and when. I'm right there with you.
I had a big scare if progression in September and still not really resolved. It won't be until next scan in December. So, I wait and wonder.
My mets to lung, chest pleura have almost completely resolved. Yay IL. However the liver was a different story and needed two y90 to resolve. And the increased uptake was in the liver, then MRI didn't show it so we didn't change treatment.
It's a confusing life we live. Live is the key word. PatG lives. Love that lady. Sorry PatG for the need of plan B. But thank God we have a plan B. Keep on painting and laughing and traveling.
Meanwhile, while living, I developed a new heart murmur and had the echo yesterday. If I "read" the tech correctly, I have dodged another bullet. Yay. My SE from IL is sinus infections. So, Monday I started another round of antibiotics. Misery. The SI really mess with my energy level, of course IL does too. Double whammy.
I'm certainly glad for this "club" I unwillingly joined. LOL 💞
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Pat, I get where you are. I had that small increase in uptake in Oct. and decided to dispense with my week off Letrozole when I am in my week off Ibrance. Haven't done it yet but the off week is coming up. If my vag behaves (questionable), I will then decide. The weeks off L so far have really helped. I may not be ready to give that up.
The problem is now the foundation funding has dried up. The money person at MO's office says wait until the new year. I still have several bottles sitting on a shelf waiting for just such an emergency. For some reason, I am not panicking as I usually do. I check the two foundations' websites about once a week (when I remember) as I just did this morning. No new funds showed up. Interestingly, I have also started getting requests for donations from the PAN Foundation. I guess everything goes both ways.
My eyes are "stabilizing," I guess. I can see my phone and Kindle better and I had to ask DH if we got a new TV. The computer is still a problem. I've spent more time editing this post than writing it. I finally get to see my new eye doctor next Thurs. for a new rx. You have to wait a month after your second surgery to do that. I can't wait.
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Good afternoon Ladies
Pat I’m sorry to hear of your progression but I do admire your courage. You are truly a trailblazer.
Have a good day all.
Scans for me Saturday. I’ll take up the anxiety banner Friday.
Tanya
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Thanks, friends, for your kind words. I'm thankful for all of you. I have decided to create a new category for me and some of you: JALP (just a little progression)! I'm going to get a BR (Baskin Robbins) JALP hot fudge sundae and celebrate the fact that we're still here!
Love from PatG
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.Grannax2- Thank you so much for thinking of me, Cant help being anxious till Mon. I hope your scanin December brings some good news. You seem to be dealing with more than I am right now, and we're all here for you. PatgMc-Hopeyour new plan turns out to be the right one for you. I've benefited so much from you on these posts., you too jaycee49if the foundation funding has dried up, can you go to the drug co? I spoke to Pfizer about when I have to go on Medicare next year and they said they could help if grants were not available, with my Ibrance that is. I dont know how long Ill be on it of course. Tanya_Djamila: hope your scan brings you positive news and
Chris, feel better from that pneumonia
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Thanks, Elena. Pfizer has told me the same thing. That was maybe a year ago. With so many patients on Ibrance now, maybe they can't support them all. Wait. Of course, they can. They are Pfizer.
One thing I also got for my eye problems is a pair readers. They help a lot with close stuff. I just have to remember not to get up with them on and try to walk across the room. I learned that the first time I tried it.
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Good eveing! Hope everyone is doing well this evening. I am four months into the Ibrance/Letrozole combo, last week I started with hives on my lower back and of all other places my calves...odd. But I am super itchy. Anyone else have this as a side effect? I am assuming this is a side effect but it’s not bad enough where I am in pain, just uncomfortable. Today I decided to telework and slather cortisone ointment on my back, helped for about an hour.
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westiemom, I've had the wild itch off and on a few times with Ibrance, mostly on my lower legs. I now have one red spot on the top of my foot that can itch like crazy. My back itches at night so my husband gives it a good scratching when he tucks me in. It just occurred to me that it might be because I take the Ibrance in the evening. Hmmmm. I hope you feel better.
jaycee, Pfizer is providing my Ibrance through December since my grant ran out in September. Your oncologist can get the application for you or it may be on the Pfizer website.
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Hello
I'm fairly new here. Although I was managing quite well since my original Dx., tonight I'm sitting here totally brain dead. I'm 64 and I keep thinking how wonderful it would be to time travel back to the days when I could crawl into bed with my Mommy and everything would be all better. Smile. I feel like a fool cause I never knew/realized how fast cancer could spread. I had no clue. I found my lump in my right breast in July 2017 just one month after my Mom had died. I was the 4th cancer diagnosis of cancer in my family in 3yrs. I've suffered with depression, panic attacks, agoraphobia, OCD, amongst various other aliments for the last 45 years. My husband left 18 years ago, after being married for 30years. I can't blame him. Our marriage was far from normal. The reason I bring up my past is so you'd understand my original reaction when I found the lump. "No Lord," I cried. Please no. I cannot do this too. I have no more strength" I felt Jesus said, You don't have to do it that way. I'm here with you. Just follow me". So I saw the doctors had all the primarily tests, saw the surgeon, etc. But it was going too fast. I told my Onc that I needed time to get my emotional issues sorted. She said I had time and put me on an Al (almadriz sp) it worked great for first 6 mos. Also, during this time, I became a vegan, exercised took numerous supplements. My emotional life was far better than it had been in many, many years. I had somehow found the cure to extreme depression. I felt HAPPY. The feeling had long been unknown to me. My HP straighten itself out , thyroid issues went away. I felt on cloud nine. My Nurse Onc told me that I could go palliative and stay on this Al as long as it continued to work. Well, durning a CT scan just one year later, my world came crashing in, I went from stage 2 to stage 4. The primary tumor (which was never removed) had grown. Not by much, half cm. But cancer has come thru my breast (skin cancer) and there were nodules on my lungs. (not biopsied) I was immediately put on Fulver/Ibrance. My leg, in fermur area started hurting so bad that I could not walk. I had a bone test two days ago, results not good. The doctor has added a shot every 4 weeks Xgber (sp) for the bone mets? I do not know how to read the pathology report on the bone test. There is no talk of radiation therapy. I know that I've lost a lot of time by doing nothing. Is it too late? Can this time be made up for? My sincerest thank you for taking the time to read all of this. God Bless
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Hello
I'm fairly new here. Although I was managing quite well since my original Dx., tonight I'm sitting here totally brain dead. I'm 64 and I keep thinking how wonderful it would be to time travel back to the days when I could crawl into bed with my Mommy and everything would be all better. Smile. I feel like a fool cause I never knew/realized how fast cancer could spread. I had no clue. I found my lump in my right breast in July 2017 just one month after my Mom had died. I was the 4th cancer diagnosis of cancer in my family in 3yrs. I've suffered with depression, panic attacks, agoraphobia, OCD, amongst various other aliments for the last 45 years. My husband left 18 years ago, after being married for 30years. I can't blame him. Our marriage was far from normal. The reason I bring up my past is so you'd understand my original reaction when I found the lump. "No Lord," I cried. Please no. I cannot do this too. I have no more strength" I felt Jesus said, You don't have to do it that way. I'm here with you. Just follow me". So I saw the doctors had all the primarily tests, saw the surgeon, etc. But it was going too fast. I told my Onc that I needed time to get my emotional issues sorted. She said I had time and put me on an Al (almadriz sp) it worked great for first 6 mos. Also, during this time, I became a vegan, exercised took numerous supplements. My emotional life was far better than it had been in many, many years. I had somehow found the cure to extreme depression. I felt HAPPY. The feeling had long been unknown to me. My HP straighten itself out , thyroid issues went away. I felt on cloud nine. My Nurse Onc told me that I could go palliative and stay on this Al as long as it continued to work. Well, durning a CT scan just one year later, my world came crashing in, I went from stage 2 to stage 4. The primary tumor (which was never removed) had grown. Not by much, half cm. But cancer has come thru my breast (skin cancer) and there were nodules on my lungs. (not biopsied) I was immediately put on Fulver/Ibrance. My leg, in fermur area started hurting so bad that I could not walk. I had a bone test two days ago, results not good. The doctor has added a shot every 4 weeks Xgber (sp) for the bone mets? I do not know how to read the pathology report on the bone test. There is no talk of radiation therapy. I know that I've lost a lot of time by doing nothing. Is it too late? Can this time be made up for? My sincerest thank you for taking the time to read all of this. God Bless
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Snooky, I am so sorry to hear about all of your loss and your recent scare. I am not a doctor or a nurse so I can't answer all of your questions, but I know there are a lot of ladies on this site that can help you comb through the issues. It looks like your stage IV dx was recent enough so I suggest that you give the Ibrance time to do its work. It can't reverse time, but it can deactivate those nasty tumors for a time. There have been a lot of us here who have seen remarkable results. I had extensive mets throughout my bones and liver and now show no evidence of activity. My mets pain is gone too. Most of the time I can live a mostly normal life, and I pray that for you. Chris
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Snooky, tonight my prayers will be for you. It sounds like you went right to God when you were first diagnosed and he answered your prayers. The same one who said, "Follow me," is still right there, ready to be followed again. I experienced some of the emotional illnesses you did and I'm thankful to say God led me toward a good psychologist and some good techniques for healing. I studied Rational Emotive Behavior Therapy and have not had depression or panic attacks for 40 years. (I recommend A New Guide to Rational Living as a beginner text.)
I've had breast cancer off and on for almost 25 years and I can say depression was far worse than anything I've experienced with BC. Snooky, you found a way to feel happiness and that ability is still there. Stick with the changes you made and the skills you developed. Pray about all of it. Find some friends who will listen to you. I found writing Morning Pages helped a lot. I just wrote down everything I was thinking with no concern about punctuation or perfect sentence structure. The goal is just to dump all the thoughts on paper. You can analyze whether they're rational or not at another time if you choose to. I found it helpful to do this with a pen and paper as the arm movement came to seem almost like a meditation.
About having made the wrong decisions or waiting too late: Don't let that worry you. We all are doing the best we can each day. When you wake up tomorrow list all your options in a row across a sheet of paper. List the pros and cons of each underneath. Pray over the possibilities and go with what you have peace about in the morning. Remember that God has all this in His hands and you can't mess it up. He knew how much time you had before you ever got here and your life, however long it is, will be a complete one. You just have to get up and live it a day at a time...sometimes an hour at a time.
To help you with options, ask the oncologist to refer you to a breast surgeon and a radiation oncologist. They might have a different take on your options than the oncologist. It won't hurt to hear what they have to say and your insurance should cover it. I would think the surgeon would consider removing the breast tumor and the affected skin. He/she could also offer waterproof bandaging to improve your quality of life.
There is every reason to believe you have as much chance of these drugs working as any of us. I take Ibrance/Arimidex/XGeva and I achieved a very fast response to my widespread bone mets. Many people have had the same experience in various body parts.
Snooky, I just want you to know that you are here close to my heart right now. Close your eyes and imagine that each person who reads here is surrounding you with love. Many don't post regularly but they are here. When you feel a little hope squeak through we'll join you in the Ibrance Dance. Your joy is going to come back. It's just taking a little break.
Much love to you from
PatGMc (69 years old) (Mets first in 2012. On I/A/X for about 2 years.)
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