Ibrance (Palbociclib)
Comments
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Hi ladies,
I see some of us have good news and others not so good news. I hope all us ladies find the right medicine.
I had my first s Pet/ct after 6 cycles of ibrance and the result were very good. Before I started ibrance I had spots/ mets on my clavicle, some lymph nodes in my chest, in my liverin my spine and in some ribs. Now all the spots are gone but the one in my spine. It didn't go away but got smaller.
I can't stop praising God
Cheers ladies
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KJones, unfortunately, no - Hope hasn't posted anything lately - She started this thread and later moved to Androgen Receptor thread - has really been suffering and has not checked in on the Androgen receptor thread for a couple of weeks, so everyone please keep her in your thoughts and prayers.
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theziz-that is good news! I am in my 5th cycle and I get my first MRI on the 19th. I have 4 mets to my spine and think for only your spine met to show and it seems smaller is fantastic.
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Awesome jjski62! I love stable. I hope to see stable one day. Meanwhile I cheer on stable in anyone who gets it.
I'd love to know what happened to Hope too. It is very concerning.
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Praise God ziz!!!!! That is fantastic news!
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My bottle was delivered today after some fighting with insurance company. ..will start tonight, hopefully I don't get to tired I next few weeks have a lot to accomplish.my dd also just started treatment for brain tumors..
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Wonderful news, ziz!! I'm so happy to hear your great result.
KJones. I'm also very worried about Hope. She was posting on the Androgen Receptor thread and said she wasn't feeling well. Last I checked, she hasn't checked in at all anywhere since Oct. 3. Some ladies keep posting on the Androgen thread, out of concern and to send good thoughts and prayers her way. Hoping we hear from her soon.
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Ziz, That's fantastic! So happy for you. I forgot what you have Ibrance paired with, letrezole or Faslodex?
jjski62, Glad to hear good news for you as well. Welcome back, hope you had a wonderful summer.
Ellen, Hope you get great results from your mri too. Do you have to wait long to hear results?
Welcome keetmom, hope the first cycle is gentle on you.
Dune, glad to read (somewhere) that you enjoyed your reunion and your backdrop was a hit. Hope being off tx for a short while agrees with you.
Has anyone tried to pm Hope? I don't know if she participated in any real world contact lists. Is there any such thing on bco? I'm very worried too.
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Ziz, great news! Very happy for you
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sent you a pm. whose your MO at MSkcc. I'm planning to switch from long island to city for more options.
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One week into Ibrance/Letrozole and I've had some wacky dreams. Today, I was running on the treadmill and kept having to reduce my speed because I thought I'd pass out. Headachy and nauseous, and my liver mets hurt. Sound familiar to anyone?
Also, FWIW, my onc never tests markers at all. The hospital feels they aren't always an accurate indicator of what is happening
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ziz ~ What great news that your mets are so significantly improved!!! I'm so happy for you!
jobur, I don't have Hope's contact info, but I did send her a FB friend request today. It doesn't look like she's been on there in awhile either, but I figured it was worth a try, since so many of us are very concerned about her.
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Ziz- that is fantastic news!! Keep praising God! I am praising HIM with you!!
Dancing Veggie- I had twinges of pain in my liver here and there. I chalked it up to the Ibrance doing it's job. It did something as my two lesions decreased by half the size on my 3 month scan. Welcome to our group! These ladies here are amazing!
I too was wondering about Hope! I am so glad she created this thread as I have learned soooo much. I pray she surfaces soon.
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Myra
My dr discontinued Ibrance due to the scan results. My rising TM were of little concern to her. It was the scans that were key
Dunesleeper
According to my MO when Ibrance failed me there were many more options out there but at present only 1 clinical trial that I was eligible for. She felt that I could always try a " traditional course of meds " but this could be my only chance for this particular clinical trial so I start on October 29 on GDC 0810.
Wishing everyone well
Bab
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Babs. So glad to hear you have made the decision to participate in the trial. I know you were weighing your options and were a little uncertain. I wish you the best for a very long success and that you find this treatment to be an easy one. Please keep us updated.
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Oh my. Good luck Bab! I'm so glad there was a trial open to you.
I think I should hook up with a naturopath and a nutritionist. Well, tomorrow we get the 3 year old so I will focus on the other stuff another day.
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Myra - Wow, those markers have had more ups and downs! Hope it is just a little deviation.
Dune - Hope you are feeling better. Docs sometimes don't realize how we replay in our heads every word that they say. I do believe also that based on available treatments, there are still many options available to you.
Theziz - Glad to hear such great results!
Ellelou - Good luck with your upcoming scan!
Babs - So glad to hear from you and that you have a good trial available!
To those who were discussing hair thinning/loss. I was on arimidex (another anti-estrogen hormonal similar to Femara) for 5 years during my early stage treatment several years ago. My hair thinned considerably during that period due to lack of estrogen. So it may be possible that the thinning is a Femara side effect as opposed to Ibrance specifically. (I'm not as familiar with Faslodex SE's if you are pairing Ibrance with that). I took Biotin for a brief period back in my early stage period, but discontinued after reading more about it. I felt like unless I had a true Biotin deficiency, which is rare, it wasn't really going to do much for my hair. You may have a different experience though. I really hope you do! Let us know!
Enjoy this beautiful fall season everyone!
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It's so good to hear that many of you are doing well on Ibrance. It didn't work for me, but I'm optimistic about my Xeloda treatments, and I'll scan tomorrow to find out.
I PM'd Hope last week but got no response. I'm very worried about her, too.
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oncologists very happy today , mms breast tumor is softer and has shrunk about half after 2cycles of ibrance. The tumors on my spine are very tender and sore, I have appointment with radiology oncologists tomorrow for hip and lower spine spots.
Ziz wonderful news, thank God. May we all find the right treatment for us.
Marilyn
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Thanks Moissey. I do know how to get myself in a tizzy. I wish I was as good at getting out of it.
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Dancing Veggie (and everyone, of course),
I thought of you often while I was on Xeloda (13 months) because I mess with my hands too. At the end, they were a mess!
I'm in my first week of Ibrance/Femara as well. Am looking forward to my hands healing up. How long did it take for you?
Plus, am I delusional - I think I'm in less pain already? In the two weeks I was off Xeloda, I really felt one of the bone mets gearing up.
Jennifer
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Hope posted on the Androgen Receptor thread earlier today.
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I was all ready to leave Ibranceland and my scans came back stable AGAIN, which contradicts my TMs.Standard protocol for stable is to hold the line. So ONC wants an MRI before he decides wether to move me off of Ibrance. Now he is thinking maybe not. So, I have both a bottle of Ibrance and a bottle of Xeloda waiting. Eeeny Meeny Miney Mo. In the meantime I get another week off of meds... Yay to feeling normal.
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Oh, my word, Stef! Well, we don't want you to leave, that's for sure! Very happy to hear STABLE, regardless of whether you choose Meeny or Miney!
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Wow, Stefanie, talk about a roller coaster ride. You seem amazingly calm. I'm curious to know what kind of MRI you will have. And is that to compare with a PET-CT? Just taking notes for the future. Enjoy your extra time off!
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Steph, so glad you got stable scans with rising TMs. I hope I get that news when I scan in November, my onc is very conservative and he is giving me the leeway. Are you feeling good? He looks at the whole picture. He even told me there are many MOs that have abandoned TMs because these new targeted tx are not showing up in the blood, instead they are "targeting" the tumors like they are supposed to.
Have a good day all.....Myra.
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My TM has doubled for the third time in the past 8 weeks. I am almost finished with the second cycle of IBRANCE. My oncologist also said that if in 2 weeks, the TM continues to rise, then we will do a CT scan and make a decision as to whether or not go back to chemotherapy. I am also doing an MRI of the Thoracic and Lumbar Spine because of back pain. Had radiation on 3 spots on the vertebrae a few weeks back. The pain was there before the radiation but has gotten worse. It gets worse as the day goes on. I'm nervous about the MRI. It's not an "open" MRI but it's got a larger opening than some and is in a bright room with windows. No idea what this is. Obviously, I'm concerned but trying to stay calm Looking forward to wine tasting in our wine room this weekend. Cheers!
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Florence2006--Good luck with the MRI. I get a lumbar and thoracic one next week. I just shut my eyes and never open them and stay calm-LOL. Is yours with and without contrast?
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Shetland, I have had two hot spots on my spine since last May. On the PET they haven't changed. But with the rising TMs, the MRI is to look at those two areas in more detail. You can actually see and measure the lesion on the MRI. The way my ONC puts it, the PET shows the hot spots so you know what kind of MRI to get. Why get an MRI of your skull, hip or thoracic spine if there is no activity there? My MRI will be of the cervical spine and of the lumbar spine. The only two places that the PET showed activity. I hope that makes sense.
I think Myra may be right. The TMs are not correlating with the scans. Its very weird though. My TMs are almost as high as they were when I was first diagnosed in 2011... After dropping to a low normal while I was NED. And higher than they were at first progression last May. It's a bit unnerving. This drug is still very new. I feel perfectly fine. No pain at all.
Florence, close your eyes and pretend you are on a beach, or pretend the ceiling is 18 feet above you. But don't open your eyes. Just relax, keep them closed, breath calmly and go somewhere else.
Stefanie
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Myra and Stef, I'm in the same situation with the stable scans despite the rising TM which are higher than first diagnosed. My onc does CT and bone scans. I was resolved to moving on to new treatment but scans showed stable. So we are staying the course now. I feel fine and have no pain too. It's unnerving as you said Stef but it's comforting to know I'm not the only one. I was trying to find any literature from the trials where this phenomenon was mentioned, but I can't find anything detailing the trial results. I guess I get now why they say TM aren't reliable.
Hi Florence, I see you are from my neck of the woods! I'm not far from Phoenixville. As far as your MRI, do they have the headphones that play music? Sometimes that helps. I keep my eyes closed the whole time.0
