Ibrance (Palbociclib)
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Intolight,
Wow, 40 months in I\L! Congrats! I hope I have a long run on it too.
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Thanks Philly. I will try GasX
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Intolight, I'm over here shouting For-ty! For-ty! For-ty!
Hooray for your sweet self!
Love from PatGMc
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Into the light you are such a light of HOPE for those of us on IBRANCE with liver mets!!! OH Lord Jesus please help my body respond like INTOTHELIGHT's body and continue to shrink these tumors on IBRANCE!!
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What is the role of surgery in MBC
https://www.medpagetoday.com/meetingcoverage/ascovideopearls/81526
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Muddling, sounds like a good sold plan ahead. I’d love to see you back on this thread posting about your dance again.
IntoLight, wow 40 months as a liver metster! I wanna be like you😊So enlightening! Are you taking any other supplements?
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Anewbreath, I only take Vita D, Magnesium/Calcium/D combo, and a probiotic. I also take Prilosec which I have tried multiple times to change, but I end up in excruciating pain with tons of GERD and no sleep, so I go back on with almost immediate relief. I see my GP Thursday and I suspect she will try to take me off again. If she has a good alternative I will try again since I have been having increased gut pain. We'll see. I have been afraid to change anything past my first good news scan so I keep things the same. I only take Tylenol for pain and sometimes a Benedryl when I can't sleep or have caffeine for dinner since I know it will keep me awake. I drink a lot of water, constantly. I take my I/L together with a good dinner. I don't think there is a magic bullet and "friends" have bombarded me with supplements ideas which I ignore since there is a lot of conflicting information on most of them. That's what works for me but I know everyone is different. I tend to want simple and I know I am fortunate that this is working for me. Hope this helps.
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IntoLight- The GERDs is awful on this regimen, I get by chewing a couple of tablets a day of the extra-strength Gaviscon tablets, which does not work as well as Prilosec, but at least I could get off of that stuff. I take it in the evening also but was wondering if taking Ibrance in the morning might help?
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Re: Prilosec:
When I took Femara I had a miserable time with heartburn, far worse than now. I took Prilosec for many months and every time I stopped, it was even worse. A friend went on the Leaky Gut Diet which was Gluten Free. I did that and had Apple Cider Vinegar (with the Mother) daily.
It worked!
After I quit the Femara and was not on any meds I had no heartburn so I know that was the cause. My current GI issues are different and I don't know if Arimidex or the Ibrance is the cause. I haven't gone back on the LG Diet because I'm too lazy! My husband and I are prone to eat food that Bite Squad delivers so my super-healthy eating days are on hiatus!
Love from PatGMc
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IntoLight- Thank you for your generous share and support! I'm happy you have found such a good treatment for yourself and I pray that we all fall into that situation. I'm grateful and blessed to be starting my15 month of ibrance/Femera. Praying this time on I/F continues to extend each month. I'm intrigued by many add on supplemental therapies but not wanting to jeopardize my treatment at this time. We are so different and we all responded differently so it's almost impossible to compare outcomes. Simplicity sound great at this point in life.
Curious- I also have some GERD issues that are starting to get worse and I'm going to give Gaviscon tablets a try. Can you get them at Walmart or Walgreens?
Pat- what is apple cider vinegar with the mother? Can you explain do I can replicate
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Anewbreath, this is it. Most grocery stores carry it now as it's being recommended to cure everything! Mine keeps a whole end cap of it.
https://www.amazon.com/Bragg-Organic-Apple-Cider-V...=sr_1_5?crid=1N5C6G41GF82I&keywords=braggs+apple+cider+vinegar+with+mother&qid=1568678934&s=gateway&sprefix=bragg%2Caps%2C165&sr=8-50 -
My sister's dear friend was just diagnosed with breast cancer - Stage II, HER+. She's facing "4-1/2 months of chemo, surgery, 33 rounds of radiation, and infusion drug therapy for another 12-18 months". I'm feeling a weird kind of guilt/jealousy mix. I feel bad that I don't have to do any of that, feel good most days, and look "normal". On the other hand, once her treatments are done, she's expecting a full recovery, and I'll still have my Stage IV hanging over my head. Has anyone else ever felt that?
I told my sister her friend can call me anytime; she made the offer and Laura politely said No, thanks. I think she's scared of me now. What a strange position to be in...0 -
Ciaci... yea that is a strange position to be in but I don't think she is scared of you. I do think she may be thinking "well thats not my situation so I don't need to talk to her".....
I was just telling my husband last night that I can't believe how naive I was when I was stage 0 ...ya know I actually never ever not once went on a Breast Cancer forum or site because I thought "well I am only a stage 0 thats like not really serious breast cancer I don't need to go there...that's for people with stage 3 or 4".... I was so stupid.
I wish I would have came here...I wish I would have gotten the crap scared out of me and did the double mastectomy then. Maybe I wouldn't be where I am now.
Ciaci I definitely DEFINITELY DO NOT think you should feel bad for feeling good...you are STAGE 4 you deserve to feel good!!!!
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Ciaci, I know exactly what you mean. To early stage survivors and early stage diagnosed, we are their worst nightmare. People literally back away from me at in-town cancer support group meetings when they find out I am stage IV. I rarely go. Guilt, jealousy, yup. A friend of mine on Facebook's mom was just dx. My friend wanted to talk to me. Her mom did not.
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Pat, thank you for the links! I’m going to see what I can do to help this GERD with dietary changes
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I had my Pet scan today. I am doing the happy ibranc e dance as I am NED! 💃
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Simone, Do-si-do! I'm dancing with you! Congratulations!!
Love from PatGMc
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Thanks Pat
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Congratulations Simone!!
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I'm not one of those "Just think positive and you'll be fine," people but I do think the words we say to ourselves matter. I have refused to speak of myself as Stage 4 since that day I got word in 2012 that the cancer was on my chest wall. I've refused to look at any piece of paper with my name on it that says Stage 4.
In 1994 when I first had BC, Stage 4 had death sentence written all over it. Actually, I was Stage 2 and already picking out funeral songs, so there's that!
I watched people at our support center ask another his/her stage and the answer came with a sad droop of the head. I made up my mind that staging would not be part of the conversation there. I watched people through the years with early stage cancers who died. I saw people die from things other than cancer. And I still know people from those days who are happy and well long past Stage 4 diagnoses.
So call me silly. Call me unrealistic. Call me in denial. Just don't call me Stage 4.
Love from PatGMcNotDeadYet
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OMG Ciaci. I know exactly what you mean. A friend of mine who I haven't seen in a while but who was diagnosed in 2004 with inflammatory bc at the same time as me has recently been diagnosed with a met to her bones....I can't remember where. I was talking to her and she is still seeing her radiation oncologist who is planning out radiation to begin this week but doesn't have a MO. I recommended mine and filled her in on my treatments. She was surprised no chemo and I said that I believed Ibrance/Letrozole were first line treatment for stage 4. Silence. She's a smart cookie but I think I shocked her. I haven't heard from her since. I don't want to be that person that other cancer patients are uncomfortable or scared of. I'm really worried about this.
Cathy
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Wonderful Simone
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Pat;
Yes I totally get it. I did tell my friend that I believe it’s a more chronic disease now and how easy Ibrance was vs chemo but....maybe too much info and I should have kept my mouth shut. Listening and not talking. So stupid.
Cathy
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That’s amazing, Simone!! Hope it’s contagious....I’d like to hear the same tomorrow!
Hope you’re celebrating!!
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Seaway, I remember back in '94 one of the first people I was referred to who was newly diagnosed. I called her on the phone and did way too much talking and hardly any listening. I never heard from her again and it was a great lesson for me! People really just need to grieve and talking is the way they do that.
None of us are on this earth to help everybody but I believe each of us is here to help somebody. God will sort 'em out and we just need to be ready, sometimes with just a touch of the hand or a listening ear......or a keyboard.
Love from PatGMc
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Simone - congratulations 🎈🎉🎊🍾 doing the happy dance 💃🏿 too over here for you!!! What wonderful news to receive! I wish I could be told that but so far my
MO is only saying “not better not worse”
I need to take lessons from PatgMc on forgetting this whole staging schmaging ordeal! Pat you are so right! I love the idea of letting that story go and not define us.
Ciaci it is a weird thing. My bff has been just diagnosed with stage 0 DCIS and she’s starting to plan her mastectomy.
When I was first diagnosed de novo, people expected me to lose my hair, lose a ton of weight, lose my breasts and possibly my uterus and ovaries and be very sickly,
Now here I am looking so normal and my bff is losing what she feels is an integral part of her.
I do feel weird that I haven’t had to do all that. Like why do they have to treat stages 0-3 so aggressively and we get these “gentler” more systemic treatments?
I have had the thought that there’s a part of me that is grateful I was diagnosed de novo so I wouldn’t have to go through all the chemo and surgeries. THIS feeling is what is the weirdness for me. If I’d been diagnosed earlier, I imagine I would have become metastatic anyway...and I maybe would have dropped out of school and never started my Chinese medicine practice that I love so much.
It is all a very big mind trip and I don’t really know how to reckon with it all
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LovefromPhilly, we are part of a trend and many more people in the future will take daily pills instead of IV chemo. Many of the chemos lots of us took in years past will one day just be bad memories in the oncology community. Herceptin pills are in trials and lots of women with HER2+ disease may not get the more toxic chemos much longer.
There will also continue to be a trend away from extensive surgery as procedures to destroy tumors without cutting continue to be approved. As for radiation, one of our local breast surgeons is doing a one-shot process during a lumpectomy so women with early stage tumors can bypass that 7 week ordeal.
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About the Stage 4 thing and learning to let it go: We sometimes had people write Stage 4 on toilet paper and flush it. Do that and every time the diagnosis comes up you can remember you already flushed that sucker and move on!
Love from PatGMc
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Congrats Simone!!! How long have you been on Ibrance and how long on the Fenben (you are on the fenben right?) or is it the COC, how long for each?
I am so happy for you!! WHOOO HOOO
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Simone,
Wonderful news! So happy for you!
Bev
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