Ibrance (Palbociclib)
Comments
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Z, we are all waiting with you for fax. Fingers and toes all crossed.
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Ohmygosh, Z! You know, that actually flashed through my head when I first read your progression post, because it was so out of character in view of everything you're doing, and just seemed to come out of left field. But it didn't seem right to even raise the possibility at the time. WoW! Holding my breath as we all wait with you!
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OMG!!!!! UNBELIEVABLE!!!!
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Z - I'm still reeling from the news that you and your team were sent the wrong report!
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Good grief!!
Do they have a study on how panic attacks impact survival rates? Fingers crossed that it was just a bad dream and you can REALLY enjoy the hiking without worry!!
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Someone should be fired! Unnecessary stress. Here's hoping for great results this tim
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Oh my goodness Z, that's so effed up. That said, let's hope your correct report is good news. What a rollercoaster of emotions
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sometimes i just don't think people including medical "professionals" really get the amount of anxiety we experience on a regular day let alone when they screw up. . then it makes you suspicious of everything for awhile. Claire, i am one of those people who would be a bit freaked out by the mask experience. How utterly suffocating that must feel. Do you take any anti-anxiety meds for that? You will need another trip when it's over to just breath! Crossing my fingers Z...
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Lady Z it sounds like you were being treated at a veterans hospital.
Mike W.
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Wow Z... went through a host of emotions catching up! My fingers and toes are crossed and praying for good news
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Z, OMG! I cannot believe it! Kudos to the MO that noticed the date on the report. Talk about a roller coaster; your poor adrenals must be all out of cortisol! You must not know if you are coming or going! I'm betting on a completely different report this time, and they better get it to you minutes after it is released-you deserve it! MJ
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I finally received the current, correct report. I am stable. YAAAAAAHOOOOO! Thank you for your support as I go through this emotional whiplash. In the end, I am doing well. I wanted NED, but stable is fine.
One paratracheal lymph node may have increased in size: it was .9cm x .6cm and is now 1x1cm. Not really actually bigger given the error in these scans... but it is also the only thing that is measurably hypermetabolic at 3.6 SUV. I am wondering if anyone else has these lymph nodes around the throat and lungs lighting up occasionally? They have been popping up and disappearing in these reports all along. I want to call them inflammation and ignore them.
I alternate between PET/CT scans and regular CT scans. My last CT scan showed no evidence of metastatic disease. The PET/CT from last week finds a bunch of little stuff in my liver, lymphatic system and bones. But my MO and I agree that these findings only demonstrate the difference in sensitivity between the PET/CT and the regular CT, or perhaps the imagination of the reviewing radiologist. It is interesting to alternate scan types and facilities just to get a sense of the variability in sensitivity and reporting.
Merry Xmas. Wishing everyone waiting for results awesome scans.
>Z<
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Talk about highs and lows, Z. So thankful to see the word STABLE. This would take me a bit to recover from though. About the lymph nodes, I have some cervical ones that light up but my MO told me everyone has those
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Great Christmas present, Z! No words for the goofs who initially sent you the wrong report, but I'm glad it's all been corrected and stable is wonderful news!
Enjoy Utah!
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Z- what a Rollercoaster! I am so glad to hear the updated news!!!!!!
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Z, Thanks to the powers that be! Awesome news! MJ
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Lalady, you are in my prayers as you go thru those jaw met rads. Sounds terrible. I had three teeth bonded yesterday and I didn't like that at all. I can't imagine going thru radiation with that awful headgear. I think they would have to knock me out.
I love your Germany pictures and I'm so happy that your trip was a good one but I'm glad you are back home bcause I would have really been concerned if I thought you might be anywhere near that awful stuff in Berlin.
Have a blessed Christmas season everyone.
Hugs, Faith (in the future )
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Seriously?!! How is that even possible, aren't they always comparing to most recent to the previous scans?- wow, what a happy turn of events!!! Keep Ibrance and Carry On..
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Z - best news I've heard all month. Go to Utah and live it up! New lesson for all of us, look at the date on the report first thing. I just had my scans about ten days ago. My trachobronchial lymph nodes lit up like a Christmas tree three months ago but on my last scan it had shrunk. Still there but smaller. New scan shows an FDG uptake to the head, neck and other areas but am choosing not to freak out about it since I have only been on Ibrance/Letrozole for three months.0
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<Z>. O WOW,, I just read the rest of the thread after I replied to Lalady's post. I can't believe what a nightmare this has been for you. Thank God you finally got the right report and as someone else said, somebody should be fired over this. It's kinda like my daughter being told she had lymphoma and them wanting to do a BMT and there was no cancer. No wonder it's hard to trust your doctors.
I am so happy for you and in some ways for all of us as none of us want to hear of anyone failing Ibrance. Stable is good! Have a wonderful trip and try to forget this nightmare.
Merry Christmas everyone!
Hugs, Faith (in the future
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YAY Z!!!
Well done you - enjoy your holiday!!!!
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Lalady - question related to your trip (which, I'm sure, was wonderful...I've been on the Viking Danube cruise several years ago and soooo gorgeous). Question: I have a cruise to Cuba lined up for May/2017. I am needing to get add'l trip insurance in case of last minute cancellation. Did you get add'l coverage for your trip and, if so, can you share info? THANKS MUCH!!!!
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Thank you, all. I am suddenly so tired and relaxed I can hardly move. I can feel now how wound up I was. Healing and peace to everyone going through treatment adjustments. Having just experienced stress of a bad scan, I have (even) more empathy.
>Z<
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Awesome Z, now go enjoy your hike. So happy for you!!!!
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Z - What a relief. Enjoy your holiday. If its an option, why not have your second opinion MO be your primary ? At least she did all the right checks.
My wife's scans are scheduled for first week of January. She has no symptoms and all blood work looks good. However TM is rising for last 3 months (from 151 to 200 over 3 months). So we are a little nervous but hoping for the best.
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Oh, what worry that mistake put you through, Zarovka! We sometimes wish bad news could be a dream or a mistake and it actually was this time. But omg, your onc have changed your treatment if nobody had caught this.
To address your question about nodes, here is what my PET/CT report said when I had a cold: "PET CT scan with imaging of the face and neck shows mild activity in the bilateral cervical lymph nodes with a maximal SUV of 2.8 on the right and 3.0 on the left. Most of these nodes are seen in level 2A....prominent level 2 a lymph nodes bilaterally slightly increased when compared with the prior examination..." I don't know if this relates to your question. It does show a temporary change in lymph node activity and size due to a cold. The next scan showed none of this, of course.
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Lalalady, the jaw rads do sound difficult. When you are lying there, think of us holding hands in a circle of support around you. Not being able to swallow well sounds awful. Can they find or order for you a better-fitting mouthpiece? If the techs say no, ask the nurse or doctor.
I have been enjoying your photos. The gingerbread house is charming.
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Thank you Shetland Pony. I had a feeling that lymph nodes can light up due to inflammation rather than cancer. Your experience directly supports this.
Lalalady - Sending you light and healing as you deal with the Rads. Maybe re-run your trip to Germany or plan your next 10 trips while you wait. I am in the circle of support, right next to Shetland.
Letmywifelive - I think you guys are in good shape. There is a long list of things other than cancer that can make tumor markers rise.
>Z<
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Kept checking to find out if you had received the fax Z (middle of the night in UK). So thrilled with your result. May everyone else with scans coming in January (me included) get as good results. Enjoy your holiday Z you have helped to make mine and I am sure many others Christmas even Merrier. Chico xx
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Z, talk about a roller coaster ride! What an ordeal! Stable is one of the best words ever! Enjoy your holiday, nobody deserves it more then you!
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