Ibrance (Palbociclib)
Comments
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Ruthie3,
Congrats on the 10 years
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Ruthie, way to go on the 10 years!! Warrior Woman, for sure!
Love from PatGMc
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Congratulations on 10 years Ruthie!
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Ruthie wow 10 years!!! Congrats. Do you have bone mets only?
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Yes Ruthie congrats! We wanna hear the details!!
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WELL! It all started in 2008...Breast cancer ! operation ,took out tumor.not in lymph nodes,clear margins..Did Pet scan ,and found hole in my femur. Operation! took off 6 inches of bone and put in pin,partial hip replacement. Then put me on Aromasin for 5 years...Pet scan showed no cancer..so onc took me off treatment ,but monitored me closely..But apparently not close enough,,,..Tumor markers were going up,so another Pet scan,which showed Cancer in spine ribs and Sacrum. .ONC was upset...So now Radiation ,and put me on Ibrance Faslodex since april 2017....Since than I am Stable.last Pet scan AUG.2019....SO HAPPY DANCE FOR ME.
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That is great news Ruthie3, congratulations!
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That's great for you. When I heard 10 years I figured it was bone mets not organ. Hope you stay NED!
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Great news about your mouth sores Nicole...I did not like my first MO either and definitely concerned for the one she appointed me too. She was leaving to go to the main hospital to take care of the sick patients...I wanted to say "what do you think we are". But my now MO is great. I know yours will be too. Ruthie3 WOW. IntoLight I am with you on the prayers. Candy always thinking about you....you are so upbeat no matter what...I love that about you.0
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Nicole, one of these days I want you to meet my precious friend, Julie, whose liver and bone mets showed up more than twenty.....
Did you see that? 20 years ago!! She's been in and out of treatment. She's also been in and out of running marathons.
Life can go on for a really long time no matter where MBC decides to nest!! Organ-Shmorgan!
Love from PatGMc
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pat as I sit here with IV in my arm getting my first time of zometa I read your post and smiled. Thanks for that. My husband said "SEE!!!" Lol and btw I loved organ shamorgan..
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Popping in to say Hi to all.
Airlinegal- Thanks for saying that about me. Last few days not so true. Sometimes hard to be upbeat. But thank you.
Pat- I too needed to hear that about your friend Julie. I pray that will be the case with me.
Question for the group---- for those with neuropathy issues. Was your neuropathy in the hands and feet or elsewhere? I have been having numbness to the Left side of my face. Neuro doc thinking TIA, but I am wondering if it could be neuropathy from the Ibrance. Always in the face, and no other issues- no weakness of extremities, no vision issues, no speech issues. Just the Left side of the face. I Googled, I know not good to Google, but that is how I came up with the neuropathy idea. And with the Ibrance use, doesn't seem too farfetched. I see MO next week and I have a call into the neuro doc with my thoughts.
Hoping all is having a good day.
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Hi all;
Pat, you thought we had all the treatments for mouth sores. I spoke to a nurse friend of mine who many years ago worked with cancer patients. She said they used to give patients club soda to gargle for canker sores. She also said when her daughter was young she got a lot of cankers and she used a coffee cup of water to which she added about a tsp of hydrogen peroxide. She's gargle a couple of times as it can effect the tissue and was careful not to swallow but it cleared up her mouth sores. I was going to try this but in the meantime my sore tongue cleared up. Yahoo.
Back when I was diagnosed the first time I subscribed (free) to the Artemis newsletter which comes out once a month from hopkinsbreastcancer.org. I have been forgetting to read it for the last while as the ovarian kind of defocused me. Here is a link in case anyone is interested.
http://www.hopkinsbreastcenter.org/artemis/
God bless you all and wishing you great scans.
Cathy
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Hi all! I got behind on posts and I’ve been trying for days to get caught up before I posted but alas, it’s just not possible! 😊 I will eventually read all but I just wanted to thank Ruthie for sharing your 10 year journey with MBC - so encouraging!
Love and miss you all,
Lauren
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Thanks, Faith-840 ! That’s so encouraging that you’ve gone on for so long with mets to the lungs!! I’m going a day early, tomorrow, for my CT. I won’t see my onc until next Tuesday but I’m praying that he’ll call me with the results before then. I’m guessing that that’s a long short but I also know God can move hearts...if it can be beneficial. 😉
Praying you continue to do do so well!
BLK , I thank you too for your response ! I’m certainly praying for your results too! Do you know your wife’s grade?
Seems many do t know their grade.
Ruthie, WOW ! What great news! Happy for you!
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Great news Ruthie10 amazing years.
Thanks Pat for sharing Julies 20 year story.
Nicole and Seaway nice to hear that your mouth sores are OK now!
Tanya
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Ginny, I pray that you get good results. Try not to read anything into not getting a call with news of your scans. I tried that and found I usually guessed wrong! I'll have a week between my next scans and the doctor's appointment so I'm going to try to take my own advice!
Love from PatGMc
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Okay, all you Liver Ladies dancing here, my friend, Julie, whom I spoke about earlier had fourteen tumors in her liver and a bunch of bone mets.
She was pregnant when they discovered her MBC and did big chemo during her third trimester. We had a rocking chair for that sweet baby at the Flying Colors Center and took turns holding her. They eventually moved from Memphis to San Antonio and that baby, Alis, just got her Senior Ring at the University of Texas!
I plan to hang around here and tell all your 20+ year stories so make lots of notes for me!
Love from PatGMc
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Pat,
What a neat story. Has she been doing treatments the whole time?
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Simone, here's a story from back in 2012 about Julie. She has had periods of remission and was able to run marathons. She's kept a very active life going with her husband, two daughters and now a grandson. I was wrong about the 14 liver tumors. I shorted her as I think this article says it was 17!
https://www.mysanantonio.com/life/article/Mother-d...
Love from PatGMc
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Wow, Pat, that's a wonderful story and so uplifting! Thank you so much for sharing!
Bev
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Pat,
What a wonderful story. Thank you for sharing that.😊
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Bump to my question about neuropathy. I called neuro doc to voice my idea about my symptoms being neuropathy and they called back---appt to see neuro doc on Friday.
Pat- Good to hear stories like Julie's. Wish we could bottle her reason for success and pass it around. So many losses here just since I have joined the group. Nice to hear a good story for once.
Lauren--- Good to hear from ya.
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Wow all these stories of long term survival with MBC are very inspirational. Thank you Pat for telling us about Julie and thank you Ruthie and Faith. I too have lung mets, stage 3 and I often hear that mets to the organs are far worse than mets to the bones. It's discouraging but these stories are so empowering. Good luck all with your scans.
God bless
Cathy
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I have been contacted by the Ibrance mentoring program. Just wondering if anyone else has been and if so what if any are the benefits. It is my understanding that someone in the group will call me to talk one on one.
Also have had recurring jaw pain - pretty intense which makes it difficult to eat or chew or sleep. My oncologist has prescribed different meds but nothing seems to be helping. Please share your experience and solution.
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Hi Wandering,
They called me once a month up to 6 months. They will ask you a bunch of questions: how are you doing, any SEs, did you miss any pills, etc. Then you get the opportunity to ask questions. My nurse was very helpful, giving me tips on how to improve SE s and what to avoid. Others found them annoying.
I can't answer your question about the jaw pain. I've never had that SE.
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Pat - what a great story about your friend Julie. It makes me so happy to hear stories like these.
Thanks all for your support. I got my scan results this week: no evidence of hypermetabolic disease (which is how my radiologists put it). So grateful for all the positivity and encouragement on this thread that helps me (and the other lurkers) hold ourselves together.
Candy - I wish I had something to add - I haven't experienced neuropathy myself but I really hope someone has an answer for you!
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mshar YAY NED!!!!! WHOOO HOOOO!!!!! So happy for you!!!!
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Candy, your face issue might be stress related neuralgia... Which I've had on one side of my face a few years ago... very painful indeed. Feels like pins and needles or bad toothache, but it's actually nerve related. Only thing is the treatment is carbamazepine (used for epilepsy and schizophrenia weirdly) which works well, but is NOT recommended when on Ibrance. Hope you get to the bottom of it!
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mshar, you keep on keepin' on with that non-hypermetabolic lurking, girlfriend!
(Your radiologists bought almost all the vowels!)
Huge congratulations!!
Love from PatGMc
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