Ibrance (Palbociclib)
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For all of you with great scans- the happiest dance!!!!
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Ginny, happy news, indeed! We celebrate with you and your family!
Love from PatGMc
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Ginny - great news! Happy Ibrance Dance!
Simone - sweeeet! Love that the dance is paying off.
Jaycee - so happy your cancer is getting lazier.
Pat - love your take on things. Don’t change.
As for me, I think of myself as a MBC-er. For some reason, it sounds nicer and not so terminal. I’ve always offered my take to newly diagnosed women. Whether they take up the offer, it is up to them.
I met Cokie Roberts about a year before she was diagnosed. She was a wonderful woman and very sincere. Passionate. Regarding dying from BC complications - perhaps she had a low blood count from treatment and got pneumonia or something. Would that count as a complication?
BLMike - hoping for good scan results in the morning.
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Happy for friends with good scans! Hooray!
I’m having a PET this Friday and am feeling quite nervous. It’s only my second one (first was upon dx). And, I’ve had increased and sometimes terrible pain where my bone met is, but it’s also possible I’ve totally made that happen due to extensive home purging and loving of heavy items plus I did a BC research walk this weekend that involved one hell of an ascent in the final mile. My TMs also jumped about 40% from last month - hoping that’s I its just due to inflammation and because they took blood from my arm rather than my port. Crazy how I'm trying to rationalize everything. I’m just so sore and tired.
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Good morning to everyone! I miss talking to so many of you on a regular basis. I just checked in to take a peek and read the last two pages of posts. It's great to see so many familiar names and to know that all of those folks are continuing to do well. For those who don't know me, I had a recurrence, in the bone only, so far, in February of 2017 after 26 years in remission. I was on ibrance and Faslodex for 23 months before developing hypercalcemia and apparent progression. I moved on in February of this year to Xeloda. All good here, so far, except for the expected hand and foot syndrome.
For those who know me, we're about to sell the boat on which we did the great adventure from Wisconsin to the Chesapeake Bay and buy another, 2 feet longer, and without a fly bridge but with more space generally on one level. We decided that fly bridges are not the best possible choice for old people who hope to stay healthy, vertical, and in one piece. Huge hugs and best wishes to all of my old friends and to those of you whom I have never met. I miss you guys and your wonderful camaraderie !
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woo hoo -nice one Jaycee and Ginny!
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Morning all.
So yesterday was my check in with my MO. She is still concerned with my ANC levels. Preliminary lab results showed ANC of 800, but final showed 1000 after week off Ibrance. She was spooked with prelim numbers and wanted me to hold Ibrance, but then said I could start next cycle after she saw final number. I told her I feared holding the Ibrance and she said she feared it too. We also discussed the creeping up of the TM's (haven't seen this months results yet). Next CT will be scheduled for mid Oct. I talked to her about my pain issues and she gave a script for Tramadol to use sparingly with the Tylenol Arthritis. The office was very busy and I heard her nurse tell her they were running behind as I was leaving (she spent 20 minutes with me). I hate that I, the patient, have to keep such close tabs on things. I go to the lab the day before restarting the Ibrance and have my labs drawn (standing orders in the lab's computer). I watch for the results to come to the patient portal and know if I should start the Ibrance based on the numbers. I monitor when the CT's are due, when the monthly injections are due, etc. This morning I received a call from the nurse that the doc wants another CBC in 4 weeks to monitor the ANC count. I told the nurse " Yes. The lab is due then because I will be on my off week then and I always do the labs then". Also the onc asked me "Now is your Lupron monthly?" Duh, yes it is monthly. I think she is just so busy she cannot keep everyone straight. Also we are changing my Xgeva from every 3 months to monthly. I think it is because of the rising TM's and the increased pain, but she doesn't really explain herself. Just says she is changing the timing. If I was not so involved in my own care, by reading here and learning from here, she is not the type of doc to sit down and explain things. I think she is planning things in her mind-- the TM's, the labs, etc but doesn't communicate well with the patient those plans. Sigh.
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Folks,
I live in Montgomery County Maryland, not too far from where Cokie Roberts lived. She was originally diagnosed a year before my BC diagnosis in 2003. So of course I am on a tear to find out who her oncologist was. No luck on that so far, but I did find one or two articles online in which the family thanked the National Institutes of Health (NIH) for their care of her. That makes me wonder what treatment she was on with NIH. Of course, my mind immediately went to the immunotherapy trials there but I'm not familiar with what else they had going on regarding breast cancer. In any event, to me, at least, it sounds like she was undergoing some type of experimental treatment if she was being treated at NIH. NIH is not like a hospital-based clinic where you just go to have "regular" treatment. Otherwise, I would suspect that she would either have been treated in this area at either Georgetown Lombardi Cancer Center or Hopkins up in Baltimore -- they are both NCI/NCCN facilities.
Just my thoughts on this.
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Joyner, so wonderful to see you. I can truthfully say that I was just thinking of you yesterday. Really. Yes, I still stalk you but not as often. You always seem to stop by when we have lots of good news. Keep coming back always. So glad Xeloda is still going well.
Ginny, yay for you, too. I sometimes forget to congratulate others on their good news, especially when I'm excited about my own. Simone, too, wow NED. I've always thought it takes more then three months to see Ibrance working. I didn't see it until after six months. I always forget that my pleural effusion and bone lesion on my shoulder disappeared at that point, never to return. I search my pet reports carefully but can't find them. I hope MO's know to wait before jumping to the conclusion that Ibrance is not working.
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After 3 cycles of Ibrance (in combo with Letrozole), my wife has apparently seen shrinkage in the tumors in her lungs. I say "apparently" because the radiologist didn't do a direct comparison of her first scan with the one she did Monday, but indications are that the tumors have generally shrunk from 1mm to 3mm. They were previously anywhere from 4mm to 17mm and are now appear to almost all be smaller. Wahoo!! We'll get confirmation of that with a direct comparison by the radiologist, but her MO read the report and based on sizes and locations of the tumors, the I/L appear to be working.
I check this thread daily, and it's been so helpful because bad news helps ground us about the reality of stage 4 MBC, and the good news is so encouraging. Thank you all for the support and your willingness to share the good with the bad. Thankfully, I'm able to share a little bit of good......for now.
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That's great news Mike!
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Congrats Mike !!!!!! So So happy for you and your wife!!!
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Hi, Joyner! It's great to see you and know you're doing well. I hate it about the hand & foot syndrome. So happy about the new boat and look forward to hearing about your first trip on it.
Mike, my Mike and I congratulate you and your wife! I was fortunate enough to have good results after just 3 months too though I've known so many who had Ibrance work its magic a bit later. I pray that hers continues to work well.
So much recent good news on the thread lifts us all!
Love from PatGMc
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Fab news Mike! Joyner delighted you feel able to drop in here and we very much appreciate your updates and positivity Boat sounds exciting!
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Joyner....so glad you posted. I know Jaycee said she had been thinking about you and I have also. How exciting about your new boat...keep adding feet and it will be a ship. Candy hang in there. Mike glad about the good news. All those having scans wishing the best results.0
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I'm jumping on the reunion bandwagon, too. Hello friends new and old. I keep an eye on you all and celebrate good news with you and send prayers for those in need of comfort.
I wanted to share my good news. After 18 months on Ibrance, I moved to Taxol/Gemzar which helped my lung, liver, and esophageal mets but my bone mets progressed. So on to Halaven. I'm happy to report I'm back to stable, with even a little improvement in my spine mets.
Wishing all you wonderful folks many, many replacements for worn out dancing shoes!
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Jaylea- WooHoo for stable. Good to hear from you.
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Good news Jaylea0
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Jaylea, great news on stable/improvements!
Mike, Congrats to your wife (and you 😊)
Jaycee, very slow growing —yay 😀
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Jaylea, I'm so happy for you! I keep hearing good things about Halaven. I won't be surprised if you also revisit Ibrance some day or maybe the magic immunotherapy will be around soon. I'm counting on that for all of us!
Love from PatGMc
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Hey, Jaylea....it's so nice to hear your voice and see your face! Now I'm headed back to my own site. Will pop back in to see you all....assuming we don't drown first. Hmmm...could be like Pat's bus.......:)
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Missed a couple of days of posts because I was on an Auto Train without my laptop... Seems things have settled down, so I won't rehash, but wanted to add two quick thoughts:
1) My sister confirmed that her friend didn't want to speak to me because "I'm taking care of it, and I have no intention of getting to stage 4, so I don't need her". I understand where her head is at, and am in no way offended!
2) I haven't been a fan of Met Up since reading on their page a while back: "Women with MBC will die of their disease." No, thank you. I will die WITH it, since there is no cure, but I don't plan to die OF it.
On to happier news: I was on that Auto Train because husband and I traveled back and forth from New Jersey to the site of our new winter home in Fort Myers, FL, for our closing a couple of weeks ago. How's that for optimism? It's a 2-bedroom ranch-style house with an open floor plan, and felt like home as soon as we took possession (my shore house here in NJ always felt like a vacation rental, never a home). We already booked a return trip for after Christmas. Loved having our own car there, and the auto train was an interesting experience. Met a lot of fun people, but couldn't sleep at all (normally I can sleep anywhere). My husband, who is usually a horrible sleeper, slept like a baby. Go figure. He says he'll have to rig up something so our bed here at home rocks and shakes all night!
Happy for everyone's good scan news!
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My wife wants to get a flu shot. Did anyone else consider where they were in the Ibrance cycle in determining the best time to get a flu shot? My wife is thinking to get the flu shot right after she starts an Ibrance cycle when her immune system is relatively strong. We're going to ask her MO but thought we'd get an opinion here.
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I actually just got both a Shingrix shot and a flu shot, within a couple of days of getting my faslodex shot. I spoke with the pharmacist, and she told me that neither would interfere with my cancer treatment (Ibrance and faslodex). Seemed okay to me, and I had no reaction to either.
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congrats to everyone who’s gotten good news!
Jaylea
Jaycee
Mike and wife!
Re flu shot: interesting idea! I have never even considered the right time to get my flu shot except the earlier in the flu season the better. I got mine two weeks ago. I guess I was mid cycle then. I barely even got sore. I always take Tylenol afterwards just in case.
In my mind, it doesn’t matter when to get it, because it takes a few weeks for the body’s immune system to kick into gear and start to acknowledge there’s some sort of pathogen floating around in the body and then start to build the antibodies.
My question for you and your wife would be is there something different happening for you that makes you concerned about choosing “the right time” to get the vaccination?
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LovefromPhilly -- Thanks for the response. No, nothing different going on. My wife is just sensitive that the effectiveness of her immune system now changes significantly as a result of Ibrance. She just thought it might make more sense to get a flu shot when her immune system was at it's peak rather than at it's bottom. This may not make any difference but it was something I thought I'd throw out here to the more experienced dancers.
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I got my Shingrix and flu vaccine same day, different arms the first week of new cycle of Ibrance.
Shingrix is not a live vaccine. It is a 2 part series.
Also got tetanus shot due to Hurricane Dorian disaster work.
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Mike, I got my flu shot at my appointment with the MO, which always coincides with day 1 of a new cycle. Sounds like what you are thinking of doing. I wasn’t trying to time it, it was just convenient that way and the doctor was very much on board
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I'm the same as Piggy99. My next visit with my MO is Monday so I'll be getting it then.
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Celebrations to all with good news!
BLMike - I am on my 74th cycle of I/L and get my flu shot when my counts are highest. I also only get the preservative free shot. I haven’t had an issue
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