Ibrance (Palbociclib)
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Pat and Leigh, thank you for the positive posts. It is uplifting to read good news and that God is still on the throne.
Hope, I will be praying for your meeting today today and that you will receive good news.
I met with my MO yesterday about the results of my latest scan. There are 2 new tiny spots (one is 5 mm) that we need to watch in a new location. She discussed all of the complications of reading a PET scan and the many interpretations of the results which is her job, but basically she just wants to put me back on a 3-month scan cycle (instead of 6-months) since I have no additional symptoms. Overall she is still pleased. It has been almost 3 years since my original dx and placement on IL. I am one of the older ones here (66 on Sunday) but I am excited to hear how well this treatment is working for younger ladies with the potential of long-lived NED. I had many metastases plus liver mets so my fight is a little harder. I have mixed emotions on receiving this news, but overall I am happy. My goal is to reach my 50th wedding anniversary in 3 more years. I was not able to celebrate Valentine's Day because I had to rush home after my appt to care for my sick granddaughter so my daughter could go to work, but i hope it was good for others.
Chris
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That's good news, Chris, but I understand the mixed emotions. We are about together at almost three years with a tiny bit of progression. I scan at every four months, talking my MO down from three. You have to wonder what such a small amount of whatever (size or uptake) means. My largest lung nodule went from 7 mm to 8 mm. Can they really SEE that? And then the next treatment looms. It's so hard being in this limbo state, living in three or four month chunks of time. But I guess it's better than some other states we could be in. I'm trying to enjoy the current chuck. Hope you can, too. I wish it didn't take so much effort.
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Nonahope, you back yet? I can't believe you have a doctor who works on Friday afternoon. None of mine do. Keep us posted.
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Pat I love your inspiring posts!!!! Please don’t ever stop being such beautiful star light for all of us. You are so loved and adored, by me especially!!
Isn’t it amazing how much a little bit of hope and positive language can uplift us all so much?? I gotta remember this in my every day life!!
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Hope to hear your results soon nanahope.And yes eyedrops I get OTC..
I had abdomen/pelvic scans all clear..Lungs were a mess last year. Any objections from anyone if I post results this time?
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Happy Birthday to Intolight! (I've got you by 3 years.) I had a tiny bit of uptake in a new spot last time and my doctor felt it wasn't even worth mentioning (so he didn't mention it!). These scans we have are good but they're not perfect and he recognizes that.
I figure if you, Jaycee, Joyner and I (among others) keep progressing a millimeter or 5 at a time it'll take a thousand years for MBC to swallow us up!! None of us are going without a fight, right?
I'm pretty sure a cherry-flavored chewable cure is on the horizon so let's enjoy the week-end celebrating that and Intolight's big day! (Name that cure and win a free PET!)
Thanks for the sweet compliments, friends. I'm so thankful for the hope shared by all of you here. I'm especially encouraged by those of you who are raising children and grandchildren and/or going to work. I'm retired and sometimes feel sorry for myself when I'm nauseous and fatigued. How dare I!
I've missed responding personally to many of your posts and I'm sorry. I may never catch up but I'm still praying for all of you. I do that when I'm in the bathtub....it's a beautiful sight!
Love from PatGMc
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Happy Birthday IntoLight.enjoy many more..I had mine on Feb 1...maybe I am oldest 79!! Have my mom's genes..she died 3 weeks ago, 3 hours after she turned 102..She's up there rooting for all of us as she now knows I have MBC. She had dementia last few yrs ..but was so there for me in 2008 for my first mastectomy.
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Good evening to all -
Leigh68 - what your Doctor told you is true. I am also around your age and I will be starting cycle 48 in a couple weeks. I feel like my immune system has definitely decided to work along with the Ibrance and Letrozole combo. I still work full time and have a very demanding job requiring an average of 50 plus hours a week. So please stay Hopeful !!!!!!! The day has to be coming where our Doctors can no longer tell us that there is no cure for MBC and we finally get to be granted the official title of "survivors".
Good luck to all on your upcoming scans!
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Sorry about your mom, lakewoman. Even though she was 102, it still must be hard, or harder maybe. Sounds like she had a good run. And please post any results you want. As you know, we love to dance. We're pretty good at commiserating, too.
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south Jersey congrats on cycle 48💕
Into the light 47 years anniversary is amazing.
Nonahope I hope you hear from DR soon
Pat GMC I appreciate the encouragement that you always give. Positivity is a tonic. Bathtub prayers are cracking me up.
Love Philly I cherish being around kind positive people so many negative toxic people in the world. I choose hope please and thank you with love all over.
Lakewoman sorry about the end of time to spend with your mom. 103 years is amazing. Post anything you want.
Joyner I hope all is well with you and you're mentally getting ready for sailing.
Jaycee thanks for sharing your success too. It's always good to remember that I'm not struggling alone.
Tanya
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Good afternoon...
I saw my onco yesterday. Scans were all good except the whole body scan showed possible necrosis in my mandible. I have to make an appointment with my dentist to have x-rays etc. to confirm. He took me off the Xgeva for now. Apparently, nothing in my organs yet...just bones. I'll still be on the Ibrance/Letrozole.
Hope
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Hope, sounds like you have mixed results too. I am glad there is no organ progression. I keep putting off going to the dentist but I just need to do it. I have a phobia because of a past experience, but know it needs to be done. Will be thinking of you!
Chris
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Hello All, new to the community, but have been lurking for a while. Dx'd stage 4 in April 2018, 11 years after initial treatment and everything thrown at the cancer including surgery, chemo and 5 years tamoxifen. Devastated when recurrence with tumour on chest wall and Mets cells in pleura found. Same pathology, so was never really clear it seems. A few rogue cells is all it took.
Experiencing the highs and lows of this scary situation - As are you all! I'm in Scotland and well cared for by our NHS, although have private cover too which I used for last treatment. Might drop back into that later.
Still working full time in a full on job but getting great support ( which I expect after 30+ years service as a teacher and now at authority level). I see too many of you do not have that support. Appalling. Will retire soon though, I'm 54 and want to make the best of the time I have left however long that may be. My team says we keep going until we don't basically. No timescale or prognosis. Coping OK with the SE's but pretty tired!
Last scan in Dec (CT) showed NED after 6 months on Letrozole and Ibrance - only licenced here since Nov 2017. I'm incredibly grateful for all of your inspiring stories and hope.
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Karenfizedbo, welcome to our little dance! We're happy to see you add a bit of Scottish flair to it though we wish you didn't have to be here.
I'm 25 years out from the initial diagnosis with mastectomy and kick-your-behind chemo. That cancer was ER-PR Negative at Stage II in 1994. Seven years later I had a very early non-aggressive Stage I in the other breast and had another mastectomy. (No more mamms to gram!!)
Then in 2012 I had a metastatic tumor on my chest wall. I did chemo again and achieved remission. I opted out of Femara after months because of side effects. (I tell you this to point out you can stay in remission for a long time without treatment of any kind.) My bone mets didn't show up until near the end of 2016!
I've been on 100mg Ibrance/Arimidex/XGeva since October 2, 2016. I was close to NED and then decided to lower my dose to 75 mg and go to 2 weeks on, 2 weeks off. My next scan showed a little progression so I'm back on 100 mg with 3 weeks on and 1 week off. I'm one of those who is not prepared to say I'll be on treatment forever so I will always be looking for a way out. (We each have to do it our way.)
I look forward to hearing more great news from you in the future!
Love from PatGMc
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Welcome Karenfizedbo - While we all hate it when newcomers find the need to join us, we are so glad you found us. So much great compassion, empathy and wisdom here.
Let's help eqch other through this journey.
Gumdoctor
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Lakewoman, so sorry about your mum. Wishing comfort and strength for you and your family.
Hope, I'll be praying for good news from your dentist. I talked to my dentist early on about ONJ and she said it can be very manageable. It's amazing what we incorporate into our new normal, isn't it?
Karen, I was exactly like you, 11 years out after throwing everything and the kitchen sink at this darn disease. Glad to hear you're NED, and happier still to hear you're looking forward to retirement and enjoying some quality family time.
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Thank you for the welcome ladies! I know we can’t compare as everyone different ( that’s my mantra when family and friends tell me other people’s cancer stories), but it does definitely help when you hear how folk are doing and the different paths they take.
I am having issues with low blood counts on Ibrance, only once made it on the 3 week on 1 week off cycle... need another week to recover. Now on 75mg and they’re talking changing to 2 weeks on 2 off as PatgMc. I’ve been told I will always be in treatment now, so I’m interested to note the growing number of us who take breaks when NED. Next scan in June... moved to 6 months from 3, which I was anxious about, but they said if I had symptoms (breathlessness for me), they’d scan right away.
My Onc and nurse team do a lot of shrugging shoulders, they are very up front about there being no clear understanding as to why some folk respond the way they do.
I don’t have children ( but I have taught thousands of wee people!) so there’s not that worry. My husband of 31 years is very stressed and working very hard not to show it. I discovered the first time round that I’m actually quite a positive person most of the time - you never really know yourself until in this kind of position. Us Scots have the rep of being a bit ‘dour’ (pronounced dower). Means grumpy, sad and negative. I’m aiming to keep to keep myself happy as that helps me and those around me. Need them on my side!
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When did you tell your kids? Mine are only 1 and 5 years old... I am so sad ... I am NED right now, but feels like just waiting on bad results. I feel like a bad mum because my youngest one never got a chance to have a healthy mum... And my oldest one...he will get so sad ...
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Karen, welcome to out little group and hope you feel safe enough to ask any question or post and respond as you need.
Anna, my DD and 3-year-old DGD live with us. My DGD knows I sit a lot and there are lots of times I need for her not to climb on me because i don't feel well. I hate it, but it is her reality. I know someday she will learn why, but I worry about her reaction when I become worse because we are very close and she is very sensitive. But for now, we laugh and play and cuddle as much as we can. She is my joy and one of the reasons I push on. I am stage IV de novo and older so it is a little rougher on me although my blood tolerates 125mg well. As Karen says, we are all different.
Chris
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Sorry you are in such a bad place, Anna, it might help to try not to "project" too much about what could lie ahead in the future, and risk missing out on the happiness life has to offer you today. The drugs available now are very strong and allow for a good quality of life. and amazing approaches are being tested some of which could could end up being total game-changers for us. Anti-depressants/anti-anxiety meds might help until you get your balance back..
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My oncologist always tells me if what we are doing stops working - we have lots of bullets left in our guns (he leaves the exam room by looking like Wyatt Earp with his hands in the air and only the trigger finger opened up like a gun). Sweet guy and always very positive.
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My Onc says the same thing.....more bullets to use0
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Hello all from Illinois on this Sunday afternoon. I am catching up on your posts. Welcome, Karen. Sorry you find yourself here, but this is a great bunch of women to learn from and get help and laughter from. I started on the 125mg dose but soon changed to 75mg due to the low white count. We played around with the dosing at first-- on 5 days off 2 days and delaying the next cycle a week or so. Then, I think my MO just decided the low counts were my 'normal' and now we do the 75mg on 3 week off 1 week cycle and just accept the low counts as my 'new normal'. I am on cycle 14. Weird that my new normal is walking around with moderate-severe neutropenia. I am a germaphobe and wash my hands often, clean the shopping cart with bleach wipes, and stay away from crowds when I can with cold and flu season.
Happy Birthday IntoLight !!!!
Thanks for the bathtub prayers, PatgMc.
I pray for you all also, though not in the tub.
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Nonahope,
Was it a bone scan that detected the possible necrosis in the jaw, or some other type of scan?
I was on Actonel for 20 years (which I know now was ill-advised, but my docs apparently didn't know!) , and now on Prolia, and I have jaw pain and toothaches. I went to the dentist, and have a bunch of new cavities because even though I am very vigilant with dental care, my mouth dries out completely over-night, despite Biotin spray and mouthwash. Now I'm wondering if I too might have necrosis of the jaw. I had regular dental x-rays, I think those are not the same as an X-ray of the jaw though.
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Nice to hear from you all and that my crappy bloods are not actually that unusual!
Anna, I did this first with my friend who the hospital asked me to help out a wee bit as she was struggling and I was doing fine on the same treatment and pathology. We were a small group... All in at the same time and the nurses connected us.
Her boys were 3 and 6 at the time and she was really very down. We just took one day at a time together, helpingeach other and focussed on making things as normal for them as possible, which made things normal for her as far as possible. She had very sad moments and I think we are all allowed that! If meds might help short term go for it and maybe try and find someone to really talk to - a counsellor? I always poo pooed that idea until in this position and I now pull in everything support wise. Some things help, some don’t ....but talking def does!
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Anna, in all my years running the cancer support center (and from my personal experience as a mother) what caused the most tears and anguish was the thought of our children being without us. It's just such an unthinkable possibility. Many of my friends who had little ones like yours have lived to see them graduate from high school and college, marry and have children of their own. And this was from the days when there was nothing but straight-up chemo and radiation, before there was the catchy name of MBC and new drugs like Ibrance.
I will be praying for your little ones and for you. Listen to Cure-ious. She understands better than the rest of us what's on the horizon and does a great job explaining it here. (We carry her around on our shoulders!) As with so many seemingly incurable diseases, MBC will one day be spoken of in the past tense.
Let's just join Anna in a Dour-Day, (makes me think of Mr. Snuffleupagus on Sesame Street!) then get on with making a daily decision to find joy in the moment!
Much love from PatGMc
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I don't think it was an accident that I read this today. Please forgive me if part of it makes you sad but there is so much good advice within.
https://www.theatlantic.com/family/archive/2019/02...
Love from PatGMc (25 years from the week I thought I would die within 2 months)
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Amica, I was just at the endodontist for a root canal and they did a CT of my jaw. It was fascinating and helpful because it’s possible to see different layers (teeth, bone, sinus). Doc was looking to see if we were dealing with a run of the mill root canal or is there some beginning ONJ
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Hi Everyone. If you remember, Ful/I worked for me than failed me after 4 months. So, I am on 9 Taxol treatments. I feel like a big baby! ha. My fear of chemo was way worse than the treatment. I've only had 1 treatment last Wed. So far no real SE's except for my enormous appetite. I followed all advice on laxatives/ pain control etc. Sleep is real good. Have to say, this is so doable. But I'm praying that the effects will stay the same for 8 more rounds. One day at a time.
I've been reading all your comments since I started, but what is working for me right now is to not think about cancer too much, so I haven't posted. But I am so fond of all of you. And will be on the board off and on. Prayers are welcomed and they are returned for all of you. Sue
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Snooky - This is so fantastic!!! What a huge relief to hear!!!
I get the wanting to take a break from it...we are here for you when you decide to visit
Gumdoctor
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