Ibrance (Palbociclib)
Comments
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Z, I honestly don't know. Since she left if up to you, I would go with my gut feeling about the importance of one or both, and whether or not you want to endure both. I dread my biopsy, I nearly passed out with the first one of my liver.
I was totally shocked that I progressed. I'd had a PET scan last month and it had shrunk and was less active but that darn tumor marker rose again this month and so off for a CT with contrast that showed it had doubled in a months time. Crap. I hate cancer. I had been imaging ibrance as a bullet aimed directly at my tumor, destroying it on impact, but now that it and faslodex failed, I am send nuclear bombs into that sucker, obliterating it to kingdom come... My husband has told me to let it out (cry) many times since last week and the only thing I want to do is cuss and I'm not usually a cussing sort of person. Ok enough ranting. If I hear of anything else I'll be sure to let you know.
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Z, wow, talk about being blindsided! I actually had to read your post twice, I was so shocked. I can only imagine how you must feel. I'm so sorry. I have no specific advise to add, but I know you will figure out your next best option, and I'm glad you're not going to let this unexpected turn of events ruin your planned trip.
Claire, lovely photo, and I'm glad you loved your cruise. Today's tragedy in Berlin certainly puts a damper on European travel. I'm glad you're back safely.
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Z- I am so sorry. As someone who has had multiple progressions and treatments, I feel for you! You are a proactive patient and a doer. I know you and your team will come up the the perfect next step for you. It looks like the Ibrance/ letrozole was your first line of defense. You have many more to choose from.
Best of luck with your next treatment.
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>z< I am so sorry to hear of your progression. I will be looking forward to seeing what your next step will be.
cheers, dee
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Z, I'm so sorry for this news. It just plain sucks all around. I'll be eagerly waiting to hear your process for getting to what's next. Glad you have some hiking time planned
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Z, Read of your scan report just now. You are certainly one of the pillars of this forum, as seen by the overwhelming number of posts in your support. We all benefit from your vast fund of knowledge and firm conviction. I know it will be a big adjustment for me when progression comes, but that I will in fact adjust to the new "normal". You are right in the throws of that challenging process, and I know that you've got this....
Your next treatment plan is likely to blast the living daylights out of those mets. Holding you in the light, sending love and hugs. MJ
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Z - for what's it's worth I would biopsy everything. Why leave anything open to question when you can get the answer. I'm a "need to know" kind of person. This disease is insidious and sneaky. It can morph at any time. There are plenty of times when dealing with this disease that we have no choice but to fly blindly. This, imho, is not one of those times.
Hugs
Cathy
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Z, I agree with getting a biopsy done . I'm having one on Thursday of my thyroid. Scary as it is I want to know in order to take the next step sooner rather than later. You are an inspiration to me I read everyday but rarely post. You are all in my prayers
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Thank you all. Having a tough morning. I appreciate your posts.
>Z<
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You are in my thoughts and prayers Zarovka.
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Z - Very sorry to read your update today. For what it's worth, I agree with Animalcrackers and others; please get the biopsy done asap. It will be the best definitive info for your next decisions. I would not go on Fulvestrant alone given the current progression in your liver. I had a bc friend who did that, and her liver mass did not respond - she is now on Xeloda. You may be a good candidate for Madame X (Xeloda) too. I admire your strength so much. Keep us posted.
For those curious on how I handled a flight to Europe and an 8 day cruise on Uniworld; I bought the cruise insurance you can cancel for any reason (worth it) and I upgraded with miles to fly biz class. FYI I would go to Cuba in a heart beat - I hear it's fun and lively. Sadly I would not return to Africa, due to disease and unclean areas. Europe and Turkey are/were fine - I am planning "Castles on the Rhine" in June after my jaw rads (12 more after today). Head gear is awful, but rads will kill this met. Next PET is in Feb, since I will be glowing for 2 weeks after I finish rads. Going to Sundance Festival 1/21-1/25. Below is a picture of the Xmas toys in the Nuremberg Xmas market. Awful that Berlin Xmas market was under attack yesterday. Stay positive and exercise ladies!
(()) Claire
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So much love for you Z.
FWIW My view is you should get the biopsies. You're such an intellectual and motivated person that I think it will be a source of unease for you if you don't get the full facts upon which to make decisions.
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Z in the bag while you make a decision and for the biopsies. Have fun hiking! Perfect timing. You need to get away. Keep us posted.
LL love the pics.
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Z, I agree with MSL that you may feel unease if you don't go full tilt on the biopsies. Good for you for going through with your travel plans. It will help shake off some of the stress and clear your head. As usual I appreciate all the useful information I get from your constant research. We are all pulling for you and hope you have a nice Holiday time despite the crap-ola... Claire, I jut love that picture. You are so fortunate to travel so much! I live vicariously through you! Hopefully after we get moved at the end of January I will finally be able to see some of the world!
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Z - I am in shock and so saddened to hear of your progression. It seems even when you do everything right, the Big C rears its ugly head to remind us that he is still around. But, you've got this! Get the biopsies, gather your records, get a second opinion and knock Big C out of your solar planet! I believe you will find some peace and clarity during your upcoming trip and will come back and make the best decision for you. Please know that we are all here for you as you traverse this bump in the road. (Imagine a football field of cheering fans - that would be us-- cheering you on and giving you our strength when you need it most). You are in my prayers. Gentle hugs coming your way.
Jensgotthis - I hope you are having the best vacation ever in Hawaii with your son. It has been a trying year for you but you are strong and vibrant. Let nothing hold you down or push you back. You've got this!
LALady, thanks for the new photograph. It is amazing - the minute detail. I am in awe. You have now had to rad treatments. How are you? Can I do anything for you? Just ask.0 -
Thank you all. Not super talkative at the moment but reading everything. I am currently thinking that I will just start fulvestrant as soon as I can while I get my biopsy done and tested. I want to take my time and get the diagnostics right.
Swimming in emotions and facts and advice. Getting myself on fulvestrant seems like a good way to buy some time.
>Z<
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Zarovka, no! I log back on after a short break and read this. Damn. Well, here is my two cents. Regarding the biopsy, I think this decision has to be individualized and I would get a second opinion on it. In my case, the liver mets and breast met (yup, most likely met due to timing and how it felt) were diagnosed within a week of each other. My onc said she thought they were "part and parcel" and that a liver biopsy would be risky for me. So we biopsied the breast and it looks like she was right because both went away. As far as treatment, I think dual attack is generally a good thing. There was that phase III trial with faslodex plus afinitor, recently reported. Also, there are a lot of trials right now for PIK3CA mutations, so I would want to have the Foundation One or other genetic test of the tumor to see if you qualify. (Edit because I reconsidered my third idea.)
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Anesthesia promotes metastasis?
Good heavens, what?
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It's a theory, lulubee, and not a settled question. I'll look up some links for you...
Ok, I really don't want to stir up panic here. There is the idea that surgery can cause reactions such as inflammation that could promote metastasis, and that employing the drug ketorolac during surgery can counteract that. Remember, there is always a weighing of risk vs. benefit for any intervention.
"TORADOL (Ketorolac) linked to Recurrence Prevention"
https://community.breastcancer.org/forum/73/topics...
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Z, I know you do your research and gather the facts but I have a story to tell about how important it is to seek many opinions. A few years ago one of our daughters was diagnosed with an aggressive form of lymphoma. She sought several opinions at major cancer centers including the Un. Of Chicago and MD Anderson in Houston. One doctor wanted to do an immediate bone marrow transplant and another disagreed with the diagnosis. They sent the biopsy to the NCI and it came back negative! She did not have cancer but an immune system problem. she still has problems but has basically taken charge of her health using healthy diet, supplements and exercise and feels pretty good most of the time. She learned so much from all her research, she is now working full time for a major vitamin and supplement co. When I think of how close she came to an unnecessary and dangerous BMT I shudder.
I'm not telling you this because I don't think you have cancer but to emphasize just how important it is to seek many opinions. I would biopsy everything as others have advised. It really is a full time job taking care of yourself sometimes but you are strong and I'm sure you will make the right decision. Please keep us posted but in the meantime go on that vacation and just let that fresh air help clear your head and breathe. You WILL come back stronger and ready for battle.
You and everyone here are in my constant prayers.
Hugs, Faith (in the future
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Good call Z - that gives you time to sort the other stuff while doing active treatment recommended by your onc.
We're all with you xxx
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Z - really rooting for you! Hoping a biopsy can get your savvy engineer-brain aimed for best next steps to halt progression. Agree with Shetland that Phase III Faslodex +Affinitor may be a good plan. FYI I've been on Ibrance + faslodex for 13 rounds and know that fas is slow to respond (5 mos or so, like Ibrance) and often works better paired with another drug, so please consider that. But your biopsy will provide the best details. We need you here! You are much loved and admired.
Cheryl, Artist & Faith - I've had 2 rounds of rads to my left jaw, 11 more to go. It's awful being strapped down in that head and shoulder mask (anyone with claustrophobia would freak), plus the machine noise goes around my head like a Lionel train track. I focus on breathing and not getting too much saliva in the ill-fitting mouth piece since I can't swallow well strapped down. Not saying this to scare you, but I wouldn't do rads to head/neck again. This jaw met has to go now.
For a final Xmas pic from Germany, above is the gingerbread house that my sister and I wanted to eat. We did nibble on the cookies provided on the side, but we could have taken that roof down with some good coffee or cognac. lol Happy holidays ladies! Sending joy to all. (())
Claire
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Z - praying for you this morning as you continue to decide what is best andright for you. So happy for you to go hiking right now and get away from it all! Perfect to clear your head and come back focused. We are all rooting for you!
Sending loving thoughts your way,
Sheri
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Z, I am so, so sorry to hear about your progression. You are a thinking woman of action, and it's clear that you are researching all options to keep down the panic and find the best path. I hope you can still enjoy your hike in magical, majestic Utah. Take good care.
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Well folks, UNM hospital faxed me the wrong PET/CT report. They sent my report from when I was originally diagnosed in January 2016, not last week. I was too stressed to notice the date was wrong. So waiting for results...
OMG
>Z<
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OMG is right. How could that happen? Did your MO receive the right scan and report? OMG OMG OMG! Hoping and praying you get good news.
Lynne
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Oh that is so awful or could turn out to be the best present ever. Please let it be the latter. Let's us know as we are all in bits with you on this roller coaster. Love Chico x
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Z - wishing that all turns out well. What your hospital did was absolutely irresponsible and totally insensitive towards the mental trauma it caused you.
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Z - didn't you meet with your oncologist the day you got the report? Did the oncologist have the wrong report also? What a clusterfu**!
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Thank you all. Again.
One of my second opinion doctors noticed the scan report they got from UNM wasn't current and called me.
UNM hospital is disfunctional indeed. I've read so many articles about how mistakes effect treatment plans. I know to be alert for this but I am a wreck when it comes to anything medical that specifically involves me.
May my little drama remind you all to stay alert regarding your medical records.
Time for a cup of tea. Waiting for fax... Arrgh.
>Z<
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