Ibrance (Palbociclib)
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i am thinking many of us low neutrophil sisters would love to know this as well, thanks for any information!
Happy weekend to all
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Gumdoctor. Thank you. I have not been able to find a Theory or data.
Hobbes
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I thought this was an interesting article on immunotherapy.....
https://www.nytimes.com/2018/04/26/health/doctors-cancer-immunotherapy.html
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Joyner, yes very interesting article. I wonder if anyone is doing this with MBC patients.
Warmly, V
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Janky, congrats on the stable scan and fingers crossed the cyst is just that. Surely even us mets ladies can have things pop up that are not cancer.
V, happy to hear about your stable scans. And being numb is a perfectly normal reaction. It’s hard to reconcile feeling relatively normal with the enormity of the diagnosis and the knowledge of what is likely to com and there’s no need to go there a moment before you need to.
Leapfrog, good luck with your scans. We’ll be thinking of you
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Leapfrog, will be keeping you in my thoughts and prayers
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Thanks for the article, Joyner. I'm thankful for every person who tries a research drug knowing that each experience advances the knowledge that leads to curative drugs. I'm not sorry about those stem cell transplants with high dose chemotherapy back in the Nineties. I have two friends who did that for bone mets and they're alive two decades later having had no further treatment. The woman who took the immunotherapy for MBC at Duke in 2017 was still doing well with no evidence of disease last time I checked. I followed her on Facebook and she was participating in boat races!
Have a happy Saturday and be sure to pray for the researchers!
Love from PatG
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Feeling a little better about my mixed scan results after receiving a few PMs. Thank you for those who commented about CT measurement accuracy. I asked for a PET but my MO said maybe later on. (In Canada - PETs are less common because of the cost - at least that's what I've been told)
PatgMc - Appreciate hearing about the lung surgery option and great news about your friend! I look forward to reading your posts because you always have some amazing story or uplifting message to share. Thanks for being a beacon of hope and light for everyone here!
Gumdoctor - Numb sums it up! Hugs to you.
Leapfrog - Wishing you good scan results this week!
Janky - I had a pelvic cyst in my first CT and it was gone by the next.
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Ashlyn - Thank you so much for that!!! I feel better for sure
I was told that the cost of PET scans was too expensive, so not done routinely in Alberta, unless deemed 'necessary'. I wasn't even offered a CT scan, never mind the bone scan 
Thank goodness for pneumonia! 0 -
Joyner & Janky - Congrats! Great news on NED!
Jaycee49 - LOL about you looking up NED and NEAD. That made me chuckle.
Cure-ious - thanks for all the good info on genes. I'm always interested in reading and learning.
Leapfrog-- thanks for answering about the rash. I still can't get that one spot to go away. I'll keep trying....
I would also like to see anything related to cruciferous veggies, or anything else, that affects nutriphils.
It's so great to see all the positive news! I have just started Ibrance and am HOPEFUL!
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MountainLady, forgive me if I told you this already. I had a rash and itched from mid-calf to my ankles for several months after starting the meds. I can't remember how many months but then it stopped. Now it happens from time to time. One thing you'll see about this Ibrance Dance > nothing really stays the same! Variety is the spice of life, right? You're going to do just great!
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Glad to see all the good news and welcome any opportunity to celebrate! Good luck with your upcoming scans, Leapfrog.
I had to delay the start of my 10th I/F cycle for the first time last week. Question: is it just the neutrophil auto count that dictates yes or no, or is it the full spectrum of results? My neutrophils rebounded (if you can call it that) from .9 to 1.2k, but neutrophil %, at 39, is lowest ever. Other counts are in the tank too, and at complete rest I feel sort of a body hum.
Janky, I haven't had a PET since original mbc dx. MO says they are unreliable once treatment starts, as healing activity lights up same as disease.
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PatgMc--I don't think you had told me, but if you did I missed it! Thanks for the info. I just keep putting benadryl or cortisone on it. Hopefully it will clear up. Thanks for the good thoughts. An Ibrance Dance! I like it...
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MoutainLady - Wishing you a long and NEAD dance with Ibrance! As PatgMc stated above 'variety is the spice of life'!
Jaylea - Thank you for that info!
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Thank you Janky!
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Jaylea, about the PET/CT: My mets have not lit up the same with subsequent scans. Each one has shown diminished FDG uptake with the last one almost none. We'll see what happens in June! It's all an adventure with docs saying different things, isn't it?!
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OH, my gosh....now there's a picture of JULIE on our site (advertisement!)! We can't get away from her. She needs a haircut, I think.
LakeWoman, is this the week you meet with a surgeon? If so, good luck!! Leapfrog, good luck with your scans tomorrow.
And yes, it would be so much easier if all of our oncs used the same terms and looked at things the same way.
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Jaylea...My mo says the same thing about PET - unreliable. I've never had one...only CT's and nuclear bone scans.
Wishing all who are having tests and surgery a great outcome.
Hope
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Good afternoon all
Last ONC appt he scheduled PET scan for August the last one was in Feb, unless I feel new pain or something. I hate the scanxiety so I’m just going to go with the plan.
Happy to see all this good news of NEDs really makes me feel hopeful.
Did anyone see a new MBC commercial? Verenzio is the drug.
Tanya
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Jaylea and Nonahope, I have only had PET scans after my initial MRI and PET done 2 days apart. My last PET after 6 months between scans, showed no uptake anywhere, and only diminished FDG along the way until I was NEAD after 9 months (I am almost 2 years out now). Perhaps consistency with the same dx tool is what is important? So yes it would be easier if all the oncs agreed with how they looked at things. I am in a quiet holding pattern right now with only monthly labs and 3-month Zometa until August. Hoping this continues!
Praying for all of you sweet ladies who are going through appts and scans this week. Remember to breathe and enjoy Spring. My mantra right now is to Celebrate the Joy.
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TY JoynerL..meet with surgeon in OR TOMORROW..at 12:15!!!! Sentinel node biopsy first.then mastectomy..My guy..son and brother with me!!.What was Benadryl and cortisone for ??? Hives?? Thanks
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Lakewoman -
Thinking of you. I had bilateral mastectomies with sent lymph node biopsies in 2014. I did not think I could get through it but I did. We are here for you.
Warmly, V
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i did see the new Verzenio commercial.
Alot of direct to patient karketing going on...
V
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Sharlene, best of luck with the surgery today and a speedy recovery
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Sharlene...Thoughts and prayers that all goes well today....wishing you a speedy recovery.
Hope
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Sharlene- Hoping things go well today
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I wonder if it matters where the mets are when MO's are deciding which kind of scans to do. Just a thought.
Thinking of you LakeWoman. I hate that feeling when you first wake up from anesthesia. By the time you read these posts, that will be over. Then come the lovely drains. We forget about all the details until it happens again to someone. I really hated those drains. Mine came out pretty quickly. I hope yours do, too. Sounds like you will have some good help. Take it slow and lean on them.
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Hello Ladies. Popping in with news.. I didn't manage the 2nd round of Ibrance @ 75mg as my counts were too low on day 10, so that's 3 aborted tries at 125, 100 and 75 and one successful one at 75. I've been on 4 weekly Faslodex and Xgeva with every 12 weeks Zoladex. I stopped on the Sunday and got a fever the next day 39.4 ..must have been brewing something.. probably brought home from school with either my 3 or 5 year old! I ended up in isolation in the hospital for 4 days on antibiotics and then 2x neupogen to bring up the white counts as they fell quite low (ANC 0.2).. I felt fine though! I had my diagnosis in Dec, extensive bone mets - too many to count... had 10 x radiation to my hip as that's where the pain was - radiation fixed that :-) I had a PET scan this week and my oncologist and everyone that has looked at the scan are amazed - about 90% of my bone mets have cleared up - just disappeared. I can't say that I have done anything different - everything in moderation but I do drink alkaline water most of the time.. So I wanted to share this with you as I know I like to read good news and positive outcomes. Long may it continue! My onco suggests Ibrance on one week off the next to see how my white counts cope... sending hugs and positive vibes to you all as we soldier on through this bumpy journey xx
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JoT, it is great to hear you are getting good results, but lousy about the neutropenia. There is currently a clinical trial underway testing an alternative dosing regimen for palbo that is 5 days on 2 days off. They theorize it will reduce neutropenia, but give you the same dosage over the 28 day average. Maybe something to discuss with your oncologist.
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JoT. That is amazing news. Especially since it usually takes awhile to see results.💞
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