Ibrance (Palbociclib)
Comments
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maryanp-I don't know if it is official hand/foot syndrome but the Ibrance/Letrozole combination has affected my feet. They blister, turn red, and get sore if I'm on them for any length of time. I've taken to wearing slightly larger shoes and if I am doing any kind of long walk or hike, I need to make sure that I have good support from the soles of the shoes. My hands occasionally will turn a bit red-the main problem is that my finger nails break off very low no matter how much creme I use. Hope this is helpful.
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Joyner- I see you are looking to MSK for 2nd opinion but they are saying 2 weeks. I am not sure where you live but just for further information I went to Dana Farber in Boston to the MBC center and they were able to see me pretty quick. I think within a few days. Dr. Eric Weiner is top there but not sure if seeing new people. But really all the MOs are considered excellent. Either way I totally support you getting a 2nd if not 3rd opinion!
Thank you mio,jaylea and lovefrom Philly. I agree emotionally the MBC takes so much from you but it is feeling like fatigue is getting worse and I think my emotional acceptance of MBC is getting better. I do exercise a little and see a therapist but am really starting to think the physical fatigue daily is impacting my ability to socially connect. It just feels like too much energy which in turns causes me to feel more isolated. My naturpath told me my RBC count is slowly getting worse over the last couple of years. It was just 2.3 I think. This is the lowest it has been. Has anyone had to break from ibrance due to RBC? If yes do u remember your numbers?
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Marynp, patience on our part is most definitely not required! We are happy to have you among us (even if we wish you didn't have to be)! I don't have the answers to your questions but wanted to say hello and welcome.
HOORAY... I have a confirmed appointment with a Dr. Rachael Sanford at Memorial Sloan Kettering (in NYC, Penny) on December 26th! I have sent (and had receipt confirmed for) all of my scans, both reports and actual CDs (well, the CDs will be delivered to the doc tomorrow by 10 AM). I am told to expect around an 80 min visit with Dr. Sanford on the 26th and that she'll be prepared to propose a treatment for me. You all have given me such peace about not being on treatment. However, I do want a direction and a plan. Now I need to Google her!
Pat, I loved your story about the woman whose new medicine after Ibrance wasn't approved, so she took it as a sign that she wasn't supposed to have it and is doing great anyway. Obviously, I'm not counting on that, but it's great to hear!
Candy, is it remotely possible that your neck and upper back pain is pure stress and tension?? I had a horrible pain running up the back of my neck to the base of my skull, just to the right of my spine, and it has gone away now, as has some of the stress. It appeared when I was in the hospital and stuck around for a couple of weeks, causing great consternation and additional worry. On the MRI, do you put a towel or something over your eyes so that you don't have to see the proximity of the machine. Two hours is rough.....
WHEW....and thanks to all. This is going to be one heck of a Christmas!
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Big relief, Joyner! Tell Dr. Rachael you are treasured on these boards and we are all watching carefully to see what she will recommend!!
(PS She looks adorable!)
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marynp. We were all horrible at it when we first started. It gets easier with time. I haven't been on xeloda. Maybe the SE of xeloda are just taking awhile to resolve. I have not heard of those SE with Ibrance. I was on Ibrance almost two years. My most consistent SE was sinus infections, so weird but several of us have experienced it. Of course the joint muscle pain from AI is universal. Mood changes were bad for me. I had to take a higher dose of antidepressants.
Keep posting, you will get answers. Where are your mets? Over four years is good.💞
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Thank you, Cure-ious...I haven't peeked at her yet. And what a very nice thing for you to say. I am just so blasted grateful that they made this appointment at MSK so quickly. Very impressive process, too. They moved quickly!! Johns-Hopkins hadn't even called me back by the time I was scheduled at MSK. J-H said that they didn't blame me for leaping on the appt at MSK. Onward.
Marynp, four years seems really great!
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Oh Joyner I'm so glad you got in there so quickly! I got my second opinion there two years (and 19 days ago but who's counting?
and it seems like yesterday. I live close by ... walking distance actually ... I so wish we were going to be in town so I could be there to support you in person. Drats! Well I'm sure you'll be relieved and impressed. And I know you'll keep us posted as we eagerly await your next steps! :-)CrazeeJane hooray for your silver lining and news that the treatment is working! I just knew it would come through for you! :-) FYI they found sub-centimeter lesions in my liver from the start with the same description. Those are very common! The even grew a little bit over time and I was terrified. But after months of my worrying they turned out to be benign cysts.
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Candy, having MS, I've had many MRI's of my spine. First, they always tell you some ridiculously long time for the test so you are pleasantly surprised when it it shorter. They break it into small sections and tell you (or should) how long each small time period will be. Like, this will last 12 minutes. This will last 5 minutes. Between sections, you get to rest and move around a little. For a really long one like yours, they should let you get up and walk around about half way through. "Should" being the operative word. If you need to rest, just ASK. The worst part for me is the noise, a constant VERY loud banging noise. Most places have headphones and you can take advantage of that if you want. I am uncomfortable in headphones when prone so usually don't take them. I always get one of those wedge shaped pillows under my knees. This is weird but I get through it by counting. If they say "5 minutes" for a section, I count to sixty 5 times. I usually lose track of the minutes I've done and have to start over. Then it is over way before I finish counting. Maybe it is best that I waited so long to answer you. Depending on where you live, you may not see this. The counting thing might drive some people crazy. I use it like a game, to see how close I can come to being lined up with when they stop.
Good luck. You will get through it. Then you will have an excuse to give yourself a big reward.
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Janet, so funny...I count the seconds, too! And then try to remember, was I at 5 min or 6.....:)
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Thanks all for the "tricks" I can use during the long MRI.
JoynerL- I have thought of that same thing -- what if this is just tension and not really a physical problem ( arthritis or cancer worsening ). It definitely could be. The emotional aspect of this disease is almost worse than the physical. I don't take anything for emotional issues, and have tried a counselor in the past but the counselor wasn't much help. She said she doesn't usually treat cancer patients and was trying to find where I would fit---grief counseling, depression, etc. I think in our area most counseling is for marriage issues, substance abuse issues and depression. I stopped seeing her as she wasn't much help for what we MBCers are going through. And as I posted when I see my MO in the office we talk clinical--scans, labs, etc not how I am emotionally. I don't want anything to be bad on the MRI such as progression of bone mets, but if the MRI is clear and it is tension what will my MO think. It will be like I am crying wolf--office visit and expensive test all for just tension and stress. I like the towel over the eyes trick. I think I will do that.
Jaycee- I called the MRI dept and asked if the test was really 2 hours like I was told by the scheduling person. They confirmed it is a 2 hour scan. I asked if there was a break during the scan and was told no. If they stop the scan during the test is just lengthens the test. The woman told me they deal with anxious patients all the time and would " talk me down from the ledge" to help me through it. I think they can play music thru the speaker for the patient. I don't know about the timed sections.
I plan on praying through it. Thinking of others on my prayer list and using the time to pray for them.
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Candy, exactly. It makes the test longer FOR THEM. They can't go to lunch when they want. They can't go home when they want. It messes up their schedule. I have had this exact test. I took a break about half way through. The tech said those exact words to me, "it will make the test longer." I insisted. (The break took about four minutes.) It's not your job to accommodate them but theirs to accommodate you. Torture is not part of their description.
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yassssss Jaycee!!!! Love what you wrote!! 🙌🏽 woooohoooo!!!!
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Jaycee-
Thank you. I will see how it goes and if I need a break I will ask for one. If only 4 minutes, like yours, that would be good to get up and walk around the room. Or visit the restroom. They make it sound like it would mess up the scan to take a break. And of course the patient doesn't want to mess up the pictures and make the scan incomplete. I will give them a heads up at the beginning that I want a break mid way thru to at least walk the parameter of the room. Thank you for reminding me that the patient ( me ) has rights and they are working for me.
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Another thing---
What if it is just tension/stress and not physical issues causing the pain?? What do I do if the MRI is clear?? Am I in the wrong, crying wolf, if I have symptoms in the future and tell the MO and want tests done?? Am I creating a monster where the MO thinks " It is her nerves, she is a hyperchondriac , and there is nothing wrong. She is stable. She thinks every ache is the cancer." And at some point it is progression and we miss it thinking it is just nerves??
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Candy, stop blaming yourself. This is NOT your fault. Anyway, scans at this point are usually based on time passing, not symptoms. So progression should not be missed. It is NORMAL to have stress with an MBC diagnosis. Totally normal. We all think every ache is cancer.
If the MRI is clear, you celebrate.
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On ibrance 125 mg. for 8 months..The pooping and puking worse last four weeks. Saw ONC.Mon. reg monthly checkup..She lowered dosage to 100mg..Lost a crown few days ago..out living my teeth good sign!!! Always a positive..oh and lost 5#'s..now to keep it off ..On my week off that be tough when I start tasting a bit...!!
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Joyner I can't believe you already have an appointment. That is really good news. My BX is the 27th so we will both have to report our news.💞
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Grannax, for sure on the 27th. SO glad you're doing the biopsy.
And Candy, this is their JOB. I'd be right there with you in a twit that they thought I was a hypochondriac, but this needs to be studied and results confirmed (Janet, are you available to go with Candy and kick a little fanny?). I'm betting that it's fully understandable stress and that you can move on from the blasted [2-hour] test with some peace of mind.
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Thank you Joyner and Jaycee for you both having my back. My MO does every 3 month CT's for our routine scans. When I complained about the neck and back pain we discussed that the cervical spine cannot be seen in a CT so the MO ordered the MRI to check the cervical spine with my new complaints of pain. That is what I meant about crying wolf. If the symptoms I am having are from stress/tension and not worsening cancer I don't want the MO thinking I am a nervous nilly and not want to order additional tests next time I have pain and it be nothing again.
Love you all and thanks for understanding.
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Candy; Please remember that your onc will be very relieved too if this turns out to be stress related. It is his judgement ultimately that decides if you should have the scan. The hospital I go to here in Ottawa has two campus's. I discovered that there is a large MRI machine at one centre and whenever I need an MRI I arrange to have it there. It makes such a difference. Who knew. Also, for the long ones I take a pill to relax....can't remember what but it also makes a difference. All the best of luck to you.
Joyner and Grannax; I'll be waiting to hear your news and wishing you all the best. I am amazed that you're able to get appointments so quickly. Fantastic.
I'm racing out the door but I'm watching and reading and starting to get scanexity myself lol (mine on Jan.4th) Love and virtual hugs to you all.
Cathy
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Joyner and Grannax- I'm glad that you were able to get appointments scheduled so fast; although I know that it doesn't seem fast to you. I pray that you get the concrete answers that you need so you can start your new treatment and start kicking cancer's butt again!
Candy- Like everyone said the radiologists work for you and if you are having a hard time laying there for two hours then they need to make accommodations. I have a really hard time with the pet scan when I have to hold my hands over my head that long. I went to one center and they had something for me to rest my hands on but the last PET scans that i have gotten they don't give my anything. The next time I am going to have them put something back there for my hands to rest on. Don't worry if it show nothing instead CELEBRATE!!!! The MOs are use to us being worried over every little pain.
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My son is a doctor, remember they are just highly paid servants!!! He is an an anesthesiologist, did you know they bill by the minute?!?!? I was flabbergasted when I heard that. They are not Gods! Fortunately, my son is very humble and does not flaunt his position. He doesn't even like to be called doctor. Of course, I do. Ha. I brag on him every chance I get. That's what mother's do, no matter how old our children are. LOL💞
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Thank you, LovefromPhilly. You should see what I DON'T say. The person saying, "they are used to anxious patients and they will talk you down off the ledge" is classic blaming the victim behavior. So patronizing. I'd like to get her at the edge of that ledge. Oh, I only say the more snarky things inside my head. Usually.
Holmes, I've never been able to hold my arms up during Pets. Too painful. They don't seem to think it is a big deal. I just keep them by my sides.
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Granna and Joyner, fingers crossed over here that your appointments bring you good answers and put you on a path that leads to many, many years of stability or better.
Candy, I would think any doctor worth going to would be willing to take your pain seriously and order necessary tests and celebrate with you if those tests don't show anything cancer related. Hoping we all get to celebrate with you.
I've been reading along and cheering for all who got good news and wishing for better days for those who didn't, but I've been crazy busy and not had much time to post. However, I know that people need to hear positive stories, especially when starting out, so I wanted to let you all know that my scans after 10 months of Ibrance and letrozole do not show any FDG avid lesions anywhere (I had multiple bone mets that are now all looking sclerotic and non-FDG avid, a 6+ cm breast tumor that cannot be felt and is not lighting up anymore and numerous lymph nodes that have shrunk substantially are also non-FDG avid anymore). I think these results count as NEAD, but I was too much of a chicken to ask the doctor - he said that the scans look "excellent" and I don't need to be scanned again until the end of April, unless symptoms pop up or blood tests look suspicious.
Back in January when I was diagnosed I couldn't have imagined that I would enter 2019 with so much gratitude and hope. I am grateful for an amazing year made possible by this treatment. Although I lost quite a bit of hair, gained quite a few pounds and trying to run feels like trying to break through a rubber wall, I've been fortunate to have no pain and no serious side effects from the treatment. Even the fatigue got substantially better after my Ibrance dose was lowered to 100mg. I was able to continue working full time until September, when I switched to part time work because I started full time law school. On Wednesday, this 43 year old mom finished her first semester at Harvard right beside hundreds of bright eyed and bushy tailed twenty-somethings. I apologize for the brag, but I'm so happy I didn't give up on my dreams back in the darkness of early 2018. I don't know what the future holds, and I'm painfully aware that my luck can change in a heartbeat, but no matter what, nobody will be able to take away the joy of the last three months - being in class once more, surrounded by people who treated me as a classmate and not as a sick friend, thinking about so many exciting new things that cancer faded in the back of my mind, feeling so very alive...
May the holidays bring you all joy and health, and may 2019 be the year our one common burning hope becomes reality.
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Wow, Piggy. Fantastic news, both NEAD (I'll say it, I don't think doctors use the term) and law school! How exciting and how brave and smart you are. What a way to move forward with your life and it seems like you are really relishing in it all. I hope you enjoy every minute and are extremely proud of yourself. Harvard? Brag away.
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And HARVARD law, no less! Well done, Piggy! You go for it, girl. What a great record of success you have with your treatments. Wishing you endless years of the same and a brilliant career in the law!
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If one of us is at Harvard Law, we're ALL at Harvard Law!!
Love and Merry Christmas from PatGMc
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Piggy wrote: "I don't know what the future holds, and I'm painfully aware that my luck can change in a heartbeat..." Hey, everyone's luck can change in a heartbeat, even the healthiest people on the planet! So proud of your semester at Harvard Law, please brag away!!
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Piggy99 Thank you so much for the update info. CONGRATULATIONS. You are one of my "hero's' since our disease is similar. You give me courage to face the future. I Thank You. I also, still have a breast tumor (6cm) and bone mets. As I watch F/I work miracles for others on this board, I get very emotional. Both for your good news and hope that I have for myself. I'm on my 3 cycle of this combo. And I have hope that it's working. I'll find out sometime after Christmas, when the scans start. My Lord and Hope, that's all I need. Wishing you a Wonderful Christmas Season.
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Piggy FABULOUS news!
Snooky Ibet you are next!
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