Ibrance (Palbociclib)
Comments
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Welcome, MarianeElizabeth! We're glad to have you among us, if sorry that you need to be. This is a lovely, caring, knowledgeable group who are ready to jump in with answers and help.
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Marianelizabeth, you are wise to walk away from any group or message that does anything other than lift you up. It takes a lot of hopeful words to push away the fear that comes from a new diagnosis of MBC. I've had friends who attended in-person support groups where people launched into blaming doctors and/or themselves for what did or didn't happen years ago. Some people also blamed their husbands, their parents, their bosses....anybody! That's always the time to pick up your purse and go home!
Everyone I've met on this thread realizes we just have to start right where we are. If we can help you with advice about managing side effects, we will. If you're bummed about fatigue, we're here (though we may be napping!). You can count on us praying for you, encouraging you and pulling for you to respond well to our fancy little drug!
We're always posting links to new research trials, even some that are just in the "mice stage". Just as cures have been developed for other cancers, that day will come for ours. There are people who have been on Ibrance for more than 4 years, some from the trials. Can you imagine what will be available in 4 more years? God is still in the healing business, isn't he, ladies?!
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Mods,
I hope you will consider removing the note that Romansma died. When someone comes here seeking hope, I don't think a death is the first thing they should read about.
Thanks,
Pat
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Patg - as always, you said it best!
Mods - I agree with her view on death. People looking for comfort and support don't need to see that.
Hugs and prayers everyone
Claudia
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Joyner- Thank you for posting that interesting clinical trial about to get started. This seems like something that MomATT might want to consider for Dani, if her trial is working partially but not completely. In essence, the plan is to combine a chemotherapy drug that is targeted only to HER2-positive cells (it is a different drug but the same strategy Dani is taking at the moment, targeting cancer killing drug to HER2-expressing cells) but then combining it with a conventional immunotherapy. One question is whether the cancer has to express PDL1 or if that does not matter, because the reports I have read indicate that PDL1 expression might not be a great biomarker for whether or not one will respond to immunotherapy.
There are a freaking large number of clinical trials for MBC, which is always a good thing, but it makes it hard to keep up. Thanks for posting that one- they will start enrolling for the trial next January!!
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Speaking for myself, it is a mistake to not mention that the person who started the post has now died- in reading the blog carefully I would come to be aware of this, and it would annoy me that I had to dig that information out, especially because I probably would want to know because I was hoping to communicate with that person. I think it is better not to associate a blog with a specific individual, or make the person at the top of an active blog be someone who posted a question sometime that week, and maybe change the top person on the blog on a weekly or monthly basis, rotating among currently active participants. Hiding someone's death feels like you had resorted to cheating in order to make me feel safe.
When I was first diagnosed, I freaked out for a very long time. Following advice from people on these blogs, I tried anti-depressants and anti-anxiety medications. This freaked me out even more, because I could tell that the drugs were only partially masking my fear, and so I worried that nothing would ever really work. Then something worked great, and I was back to my real self without any drugs, or then for awhile I took anti-depressants as a protection in case I got a bad scan, but in the end gave them all up. The difference for me was going back to reading the science literature about MBC, which was something I could not do for a long time.
When I read the literature I realized how many potential blockbuster treatments are being developed and/or entering clinical trials, and that my doctors were wrong- yes, MBC does not currently respond to immunotherapy alone, but there is no scientific reason that immunotherapy should not work on breast cancer, and there are many different combinatorial approaches being tried or on their way. Nobody has given up on us. Realizing that reality calmed me down immensely and immediately, just like it flipped a switch and I went back to my normal self. So for me, hope had to be authentic and genuine, and something I could really believe in, and not a drug to mask my anxiety symptoms.
Of course virtually everyone on this site has been helped enormously by anti-anxiety and anti-depressants , and I won't hesitate to use them again when I stop being stable because they do work and they are literal life-savers. But I did want to weigh in and say that real genuine hope does also exist in treatments that are moving along the clinical paths, and reading and researching is one way we can get some control over this cancer. We live in a time where some cancer patients are having miraculous responses to incredible powerful targeted drugs with few side effects, so there are authentic reasons to believe that a good quality of life is possible for all of us, unless and until we are forced to face a different reality. Regardless of what my future holds, I want to face reality.
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Pat thanks. Looks like they found the active metabolite of tamoxifen ... so if you just take that metabolite you avoid the uncertainties involved in metabolizing the drug ... some women do metabolize tamoxifen into the active metabolite and some do not. Here's the relative bit...
Researchers studied 41 patients with estrogen positive metastatic breast cancer who had progressed on standard anti-estrogen treatments. They concluded that, in patients with metastatic breast cancer who had progressed on standard anti-estrogen treatments, Z-endoxifen provides substantial drug exposure unaffected by CYP2D6 metabolism, acceptable toxicity, and promising anti-tumor activity.
Dr. Goetz and investigators with the Alliance for Clinical Trials in Oncology and the National Cancer Institute recently completed a randomized trial comparing tamoxifen with Z-endoxifen. Results from this trial, A011203, are expected in 2018.
I was post menopausal when diagnosed so never offered tamoxifen ... seems like it is for pre-menopausal women only. I've always wondered why ....
>Z<
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I agree with Cure-ios about the note that Hope has passed away. I've been thinking about the women who actually direct a post to her only to find out much later that she passed away. That would make me feel awful if I had done that. I also think for some of us who were here when Hope was still alive, it brings up painful memories when someone addresses her. I never read the top note so that doesn't bother me.
I guess there are no easy answers to this which is why there's never been a decision made about how to handle this problem.
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Welcome Marianelizabeth. I'm also fairly new to my diagnosis, a bit over a month and just took my last pill for my first cycle of Ibrance. So far doing ok other than fatigue last couple of days and a bit of soreness in my mouth though no actual mouthsores.
This site had been really helpful to me since I found it. I feel like I still have so much to learn but comfortable that I've found great support and knowledge from these discussion boards.0 -
Marianelizabeth, I'm sorry you find yourself in this place, but a big welcome to you. As others have said, there's so much wisdom shared between us. We all have a different story but, speaking for myself, we learn as we go along and I find that hopping on here teaches me something new every day. Some members have been through so much yet we are all hopeful and optimistic. With so much research happening and new treatments coming on stream all the time, if we had to find ourselves in this territory, there's a lot to be optimistic about!
Bigbhome I'm glad you like my pictures. I love flowers so much and I like to share them......I think they decorate the page haha if you know what I mean.
Hugs
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Hi Z. Interesting observation on Tamoxifen. I was thrown into menopause by chemo and was then on Tamoxifen for five years. I always joked about menopause that there was one big flash and then it was over about half way through chemo.
Pat2.
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Hi Liwi, Welcome. I'm on my seventh cycle of Ibrance and I know what you mean about the fatigue and mouth soreness. It's as if you're going to get full blown mouth ulcers and cold sores but they don't fully develop. I have trouble with very sore gums but I've found that if, after brushing my teeth (carefully and with a soft brush with a small head) I rinse my mouth with bi carb soda (I think you call it baking soda in the US) in warm water, followed by warm salty water, followed by no alcohol mouth wash and then finish it off with a product called Gelclair, my mouth is comfortable enough for it not to trouble me too much and it enables me to eat better. It sounds like a lot of trouble to go to but for me it's worth it. I wasn't eating enough because of the sore mouth and that's just crazy when you have cancer as a good diet is vital. I hope this helps you if the mouth soreness becomes a real problem.
Cure-ious, thanks for your very encouraging post. There's a lot to be encouraged about, with the results of research developing into more treatment options for us. It's certain that we're not forgotten and that a lot is being thrown at helping us to live a longer life with a good quality of life....the latter being incredibly important for us.
I do believe that it's also up to up to us to meet this challenge and be ready to try anything we're offered by way of improving our chances and quality of life. I like this meme.....I can relate to it because so many people have said to me, "If it happened to me I couldn't be as brave as you are". I don't believe that's true. I see it the way it's expressed in the meme.
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I would keep the note from the moderators. I don't think anyone who comes here is surprised to find out that people die from MBC. It's what they expect. Coming to terms with that and living with it, and sometimes even living well, is what we do here. I like to remember Hope. She's our fearless leader.
>Z<
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I am so new to this thread but one of the first sites ever was for women in British Columbia and we are still going. The woman who started it in 2011 first went on BCO in 2005. I am not sure when she died but I remember at some point those before me told us when they were asked. Her first post starting the thread is still there and we all see her lovey face when we sign in. I agree with zarovka that we do not know what is going to happen someday but meanwhile we love with it and do the best we can. Thank you zarovka for your words.
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Z, like Sadie, my initial chemo in 1991 put me into menopause (at age 44). After treatment, I was on Tamoxifen for 11 years and was then switched to Evista. I don't know whether that means that I'm no longer a candidate for the "active metabolite of Tamoxifen" or not. Scans on Wednesday...it's so very odd how the results can change your life overnight. Hoping for improvement or at least no change!
Headed to VT and New Hampshire for the engagement party the day after the reading of the scans on the 12th, though my "stealth radiologist" friend may read right away. And then I have to pretend that I don't know the results so that my friend doesn't get into hot water with my MO. Whew. It will either be a great trip or a grim one.
Hugs to all, and exultation with Cure-ious that hope does exist for us! I don't know what I think about Hope and the heading; I'm one of those who inadvertently replied directly to her and was gently steered in the right direction by a kind participant.
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Z, wish we had a like button here!
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Faith and Cure-ious I agree with you. I knew Hope when she started this thread and we often pm'd one another. I was very sad when she died. I'm grateful I had the chance to get to know her and grateful that she was one of the first to start Ibrance when it was newly FDA approved. Fast forward to today and we have the privilege of sharing our experiences and making this thread the informative, sharing and supporting site it has become.
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Welcome Liwi! I'm fairly new to this board, as well. I'm about to begin my 3rd round. I haven't had any issues with mouth sores, but I can sure relate to the fatigue -- especially with the 1st round. Of late, that issue has resolved immensely. I hope your side effects will fade away soon.
Hope
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Leapfrog: Those are butterflies on flowers aren't they? I wonder if they are chameleon butterflies since they so match the flowers. Beautiful in any case.
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I didn't think tamoxifen was just for pre-menopausal women, I have known post-menopausal women treated with it for 5 years. But I had read that AIs were supposed to work better post-menopausal - although I was told by my Onc who treated me for my original cancer that 3 years of tamoxifen followed by 2 years of AIs was the best treatment if your menopausal status allowed it - this seems to be standard in a lot of European countries. Tamoxifen for post menopausal I have heard is given a lot in England. Z-endoxifen may hopefully be of benefit to some of us - if it lowers estrogen, that is the important thing isn't it?
Just on my second cycle of Ibrance, hoping it is working because the side effects are minimal, mainly hot flashes from the letrozole! I really need to get in better shape now and exercise more, my fitness has gone downhill way too much since dx
Leapfrog I am totally in love with your butterfly and flower photo, its stunning!
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Leapfrog. That's exactly what I think! I've even tried to explain it people but they don't get it.
Lynnwood Me, too.
Joynert. My first DX of B.C. was in 92, age 44. I was already having symptoms of menopause so my MO thought CAF would do it, but it did not. For reasons still unclear to me, he did not put me on Tamoxifen. At age 50, I was still having serious problems so i had a hysterectomy.
Today I will receive my 9th bottle of Ibrance. I've come such a long way mentally and physically since my DX last November. Shear panic, hardly able to breath, distraught, so sad, this is the end and the worst was i was absolutely sure I only had about 6 months to live......
Why didn't I get online and read about the new treatments? I dont know why. Maybe I was too overwhelmed and unable to read. But, I sure wish I had. December was a whirlwind, including disbelief when MDA MO told me all i needed to do was "Take these 2 little pills".
So, the rest is history. When I was finally able to read and found this forum, I began the process of healing....mentally and physically (yay).
Z and all the other super brainiacs on here, l only understand about half of what you post but its enough. Thank you for your research.
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Regarding Tamoxifen - I was post menopause when I was diagnosed de novo and my first line of treatment was Tamoxifen.
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From Joyner's recent post, "Hugs to all, and exultation with Cure-ious that hope does exist for us! I don't know what I think about Hope and the heading;" I want Hope in the heading so I remember to have hope. You people are dragging me kicking and screaming into the optimistic camp. I am a natural pessimist, a realist actually. Not a bad thing but you can be afraid to hope when you see the possibility of disappointment. You all seem so strong in that regard and I'm trying to be. Not there yet.
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Janet...like you, I am not a strong person by any means. When I read these posts, I see so much strength coming from these ladies. I strive and "hope" to be there someday.
Hope
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Thanks, Hope. (Like the name.) I am a strong person and so are you. No one gets to this point being weak. I just worry about being overly optimistic to the point of being delusional. But do we have a choice? Maybe not.
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Blume~ I noticed the mention of your heat flashes. I was having horrible heat flashes to the point to where I had to carry a small hand towel with me and layer my neck and back area with them because it would be so intense and I would end up soaked. I'd say at least 10 times a day if not more. Some nights, I would Change my night clothing twice. I told my oncologist about it and that besides fatigue, that was my other big problem! He gave me a prescription for Effexor. I started to take it on a Friday and by Monday I was down to seriously, 3 heat flashes a day and I haven't changed my night clothing since! I was amazed at how on target he was with it and I am no longer toting around a clean up towel. I am no longer embarrassed in public. If anyone is having this problem. I seriously advise trying this for yourself! I don't post too much here these days.But wanted to share this trick that I just learned. You all may have already known this and I am late to practice, but could not resist. Hope everyone is well! ~M~
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Micmel thankyou so much for that, I never heard of Effexor before! My hot flashes aren't so bad yet and go really quick but if they get worse I'll certainly ask my onc about this.
Hope you are feeling well, everyone else too, enjoy the weekend!
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Not an expert in tamoxifen .. I've ignored it because it seems like it is never on the table for my post-menopause strategy. But I think it is a SERD, like fasolodex/fulvestrant but oral. It is used for women who are not in menopause and blocks the body from using estrogen rather than blocking the body from making estrogen. But faslodex is used for women in menopause, so I don't know get why it is not more widely used in place of faslodex in post-menopausal women.
Putting this out there in the hopes my vague understanding will be corrected and expanded...
>Z<
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I'm not completely clear on the nuances either Z but I understood (and others can correct me if I am wrong) that Tamoxifen blocks the estrogen receptors but Faslodex destroys the receptors. They are related but have different actions.
When I was initially diagnosed in January my MO laid out a plan which included Taxol or Xeloda to start (to get the tumor load down) and then hormone treatments - Anastrozole first, fulvestrant if the AI failed and then Tamoxifen if that failed. Of course, it appears the strategy is shifting. I'm off Ibrance at the moment and anticipate that he is going to steer me to Xeloda when I see him next week as there is some evidence that the AI is not doing the job (possible bone progression and loculated fluid in my lung). I have a bone scan on Tuesday but apparently it's a bit challenging to know what is going on with my bones as I have sclerotic lesions. This was a surprise to me as I thought it was pretty easy to tell if you had bone mets!
I'll likely lurk on the Ibrance thread regardless as I find this a great place to keep up to speed on upcoming treatments and recent research. Thank you all for keeping us informed.
Pat2
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nonahope, I agree with jaycee that you are a strong person and getting here has made many of us either strong or stronger. I now know that I am strong and probably was before but did not recognize it.
Micemel, I am assuming that your MO did tell you that Effexor (called Venlafaxine here in Canada) is an antidepressant. It was prescribed at my cancer agency for depression but my MO also said it helps for hot flashes in about 50 % of women on AI's. I was on Anastrozole up until my new diagnosis last week and will continue on Effexor though I plan to discuss it with my new MO, soon to be assigned. What dosage are you on? I started at 37.5 and have been on 150 mg for two years other than a brief foray at 112.5 mg for about a week and my hot flashes came back with a vengeance. I have not looked back at depression or hot flashes.
Sadie, I bet we passed each other at BCCA as was there every day except today!
Marian
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