Ibrance (Palbociclib)
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Have a very happy birthday Lauren. Have a great time in Nashville.
I understand they're starting to use Ibrance/Letrozole for early bc's too to stop MBC developing.
love to all,
Cathy
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Prayers for good results IntoLight...Happy Birthday Lauren. NicoleRod....I started out with fluid in my lung and it was causing me to have a dry cough. Finally got to the bottom of what was going on and X-ray showed fluid in lung. When the fluid was removed I had cancer cells in it. That is when they found MBC. One small tumor close to the lining of the lung and it has taken 2 1/2 yrs to finally to go away. Also bone mets in the upper part of my spine and they are gone. I did have fluid removed one more time at the one year mark and still cancer cells in the fluid. The Onc says the lung and fluid area is just gray not lightening up at all now.0
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Airline wow I am encouraged that your tumor ultimately went away especially that the Ibrance has been working for you for so long!
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Happy 50th bday Lauren!!! Have a blast! I like your gameplan of changing your scan dates! Good move
Now you can relax and enjoy 
Love to all,
Philly
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Airlinegal;
I have lung Mets and the CA125 works very well for them. I was using it for the ovarian cancer but we discovered (and I have a report on it somewhere which I will find for you if you’re interested) that it also works for them. So good yours are gone.
I had a miserable day today. Went to the dentist with an abscess thinking root canal only to need to have the tooth removed. Ouch. I’m terrified of getting dry root (or whatever it’s called). I’m on antibiotics and this is my off week so that’s good. Back on my Ibrance Monday. I wonder how long it takes to heal.
Otherwise all good. I’m loving the weeks off.
Best wishes to all
Cathy
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Happy Birthday Lauren. Enjoy Nashville!
My onc emailed me today--said she reads the scan report as stable but she will want to do more frequent monitoring because there is new lymph node action that the PET/CT can't even measure, and subtle findings in my right breast and lung pleura...What? Stable? (she sent the summary but I am sure you all don't want to know it all.) I have lots of questions to ask on Friday. I am more shaken than I thought I would be so Friday may be tough. To me anything "new" is not good...
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IntoLight
Take the "stable" part to heart, after all you are a strong (3+ years!) I-F responder, and ain't nobody arguing that you need to switch. Ask if there are any spots that needs to be zapped with radiation, and also if now might be a good time to add in something extra, like faslodex shots on top of the I-F. I added Celebrex to slow down any PI3K-mutant cells. They will not recommend any change without clear evidence of progression, at least 20% increase overall. Good luck Friday!!
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Thanks Cure-ious. I was going to ask what the progression threshold is. And of course one of my questions is to recheck on any mutations. I never received any of that type of information before so i don't know what is going on. I appreciate your learned suggestions always!
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Chris - please keep us posted on your visit on Friday... Cure-ious raises good points. Stable is indeed good and the additional items may not be cancer related - but just cause to check in sooner. i am thinking of you. aim sure your head is spinning about any news of something new.
Also - my message was really unclear. My scans aren’t until Oct, which is the same month I am going to nashville (but scans were moved to the week after the trip). And my birthday is in Nov so I’m still currently “in my 40s” LOL. I’ll come back and read your sweet birthday wishes in Nov!
Love to all,
Lauren
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Lauren Lololololol!!! We can wish you happy 50th all over again in November!! Hahahaha that was funny!!!
Maybe I’ll stop being so neurotic about Earl Grey yea!!! I do love it with a little cream and honey! Yum!
I swear I am the biggest weirdo with a very highly defined sense of smell. Tonight I went to see my bro playing jazz at this restaurant. I knew the owner and he came over and we shook hands and kissed on the cheek. When we kissed hello, I could smell a smell that didn’t smell so good, like rancid oil and deep fried batter combined. Then, the smell was stuck on my hands (because we shook hands too) and I felt like I couldn’t stand the smell of my hands I had to go wash them.
The food came out and my dish was really gross in my opinion. I could barely eat my dish but everyone else seemed to relatively enjoy their meals.
Now I’m laying in bed and feel like I can smell the awful smell of the fried tofu tacos 🌮 yuck!
I took an anti nausea, cause I’m feeling a little queasy
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(no comment about whoever conceived a fried tofu taco...)
The link below considers what to do upon progression from I-F, they say you want to know what cancer mutations have changed because Faslodex with Abemaciclib (or similar) is a reasonable choice unless the cancer has acquired ESR1 and/or PI3K mutations in which case there is less benefit. And they bring up again the old data showing that CDK4,6 inhibitors boost the immune system and synergize with immunotherapy in the lab, and mention that the PACE trial is looking at that and is scheduled to finish in a year or so. PACE has truly gone radio-silent, so its hard to expect much, but will we even hear anything new at ESMO (end of Sept) or San Antonio?! It's really been very quiet on the clinical trials front all year. They don't mention if there is any statistic updates from the Piqray trials (for PI3K) nor the SERDs that supposedly work exceptionally well for ESR1 mutations.
https://www.targetedonc.com/publications/targeted-...
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I am on cycle 22 on Ibrance... and feel «swollen» of water in my face..... AND the day 22 and 23 (first days off) I feel really bad with headache and painful spots in my spine/shoulder... This scares me so much...
I try to work and so on.. but I am in early 30’ies and have two kids under 5 years
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Slightly off topic, but posting in case it helps anyone -
On August 20, Pat posted about a trial of Opdivo and Yervoy taking place at Southwestern in Dallas. I posted that it's also starting at Dana Farber. The doc in charge at Dana Farber said it's also going to start up at U of Pittsburgh (and she said some other places but didn't name them.)
This is an immunotherapy trial combining the two named drugs. It requires a recent genomic report (think F1 and others like it) and you need to have 10 or more mutations showing up on that report.
Hope this helps someone.
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Bev - thanks! I am treated at the University of Pittsburgh so Iwill inquire. I’ve not been foundation tested... my MO said we would do that with any new mets or progression but no need to do while I am NED. I will look at the trial design to see what the eligibility requirements are though.
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This post is for people who like reading my stories. There is no valuable scientific or other information herein.
You've heard of the Keystone Cops, right? If not, think bumbling. Well, yesterday, I had a Keystone Pet scan. I got a better than usual parking spot so I thought, this has started out well. Not a bad walk to the hospital building with one rest on a bench by the front door. I got a nice ride in a wheelchair to radiology (it's really far from the lobby) and went up to the check in window. Have I registered at admitting? No, they tell me not to, that you will do it here. I go through this every time. They do it and I fill out forms and things are moving along nicely. My scan is scheduled for 2 PM. I start getting antsy at about 2:15. (They are usually right on time.) Then I guy in a suit and tie comes to get me. Not normal at all. He takes me to a different room (away from other patients in radiology waiting room) and explains that an earlier patient was 45 minutes late so their schedule has been thrown off. What? Well, whatever. Not normal for medical stuff (they usually act pretty nasty when you are late and "you may have to reschedule" etc.) but I say, "I just want to know what tech is here and if they will use my port." This guy is very defensive from the get go but once I convince him that I'm ok with the 45 minute delay, he says the tech is James, a fill in for Chris, my regular tech. Me: Will he use my port? Him: We're not supposed to. Me: I know that but I always get them to use it since it is already accessed. Him: I'll be right back. True to his word, he comes back in about five minutes and takes me to the Pet scan trailer. (This is the trailer that is driven around Southern New Mexico so everyone out in the boonies has access to a Pet scanner without driving for hours.) I meet James (Jim). He is an old-time professional radiology tech and is all too happy to use my port. Phew. He is about to inject the radioactive stuff so I ask don't they usually do a blood sugar check before? What possessed me to ask, I have no idea. I hate that finger stick. Jim asks suit and tie where the gizmos they use for finger sticks are kept. Remember, he is a sub/fill in tech. They both riffle threw some draws and find two different ones, neither usable by Jim. He finally gets a drop of blood from my port, injects the stuff and I wait. After the usual wait, the scan is fairly uneventful, although I can tell that Jim is unfamiliar with this machine. Suit and tie did mention the "learning curve" for Jim since he has not used this machine "in a while." I did feel like the order of my body positions in the machine was different from times in the past. I left with my little piece of paper about the radioactive stuff for the border patrol who are back on duty in New Mexico after months of being gone. I don't do politics here so I'll leave it at that. Believe it or not, I have left out a substantial amount of the story for brevity's sake.
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Anna, have you ever had these SE's before in the 22 cycles you've completed? If not, these SE's might warrant a call to your doctor. If you've been having them all along and telling your doctor and been ignored, call anyway.
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Chris, I get where you are. I'll be there in about a week. Wait for me.
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Anna, my first couple of days off are always my worse with more aches and gut issues so maybe this is typical? Not sure about the swollen though so it is a good idea to ask.
Jaycee, too funny! I get scanned in a trailer in a parking lot too although it is always there. The hospital is older so I always thought it was an addition and it is in the parking lot to be safe for radioactivity. I go to a bathroom that is labeled for PET scan patients only in another building after my 45 minute wait. So I have to walk there and back. (I can request a wheelchair if needed.) So much for no activity! I always thought waiting 45 minutes alone in a tiny room surrounded by all the radioactive tubes a bit scary. My DH always teases me about my special glow! I am a little less shaky this morning. Not enjoying this ride at all!
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Jaycee- Love your stories. Always fun (not) when it is someone new. Praying for good results and that they got a good reading even with a sub tech and a slightly different routine.
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Jaycee49 .... It has been something there, but definitly gotten worse... But what I think is weird is that it comes imediately when I have the week off...after just one day off... (I am on 100mg
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Jaycee,
Loved the story about the PET scan. It's not like getting scanned is not already tense and anxiety provoking at all! Especially loved the story about how they couldn't find the stuff to take your blood sugar before the test. Ohmigosh! Glad that you were able to get the test done and didn't have to go back, though.
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Hello all,
Anna 33 you should definitely tell the nurse and or doctor about the swelling. Take a picture and email it. The days off are the hardest for may of us the first few anyway. Are you stage IV? I just read about them giving Ibrance to other patients who aren't stage IV. I don't know what state that you're in but is it possible to get leave from your job or disability? This journey is tough and some can work throughout which you have done already but its possible that you need more rest so that you can heal and recover from the treatment? Everyone tells me that this ibrance doesn't have cumulative effects but sometimes I feel like it does. like I'm tired of being tired type of thing.
Into the light we all dread anything new. If the DR says you're stable then they don't seem that concerned and they see these results all the time. I would be scared to death too. I pray all goes well for you today or is it Friday when you have an appt.
For the millionth time what do you guys do for mouth sores. I had small ones over the past 2 years but this cycle I have a painful one that I can't see. I remember greek yogurt and magic mouthwash. Is that it? Do I need prescription for the mouthwash?
Take Care All
Tanya
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Jaycee thanks for the keystone pet scan story. I get the sugar test, and then they access the vein and then I drink the stuff. It's only three steps. I hope the test results are fantastic. Good thing you know what to do.
Tanya
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Tanya, what type of scan do you get? A PET does not require me to drink anything--they just insert the radioactive stuff in the vein after a sugar test. They have learned to take a drop of blood from the tube after they insert the needle before the drug so they don't have to prick my finger. I would hate to drink that horrible stuff every time!
Mouth sores: yes, Greek yogurt (daily) and I rinse with baking soda if needed. I have never needed the magic mouthwash but I know several here swear by it. I have also used Biotene when needed (you can get it anywhere).
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Tanya, are yoy sure your mouth sores are from your meds? I was getting them too then realized they were fron a B vitamin. I was taking. Sometimes we forget we can get side effects from vitamins or herbs. Ive had all kinds of them.
Diarrhea from valerian root i took for sleep.
Stomach cramps from too much magnesium
Restless legs and wakefullness from melatonin. To name a few.
GAILMARY
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Anna, could it be stress-related? You sound like you don't like the idea if being off the med. Believe me, I am the LAST person to blame SE's on stress but something to think about. It just seems like one day off couldn't cause all that. Maybe it is the 21 days on.
Tanya, I was going to say the same thing as Chris. I don't drink anything before Pet/CT. If they want to use contrast for the CT part, it can be injected. I had a reader radiologist complaining about the fact that I had no contrast for the CT part. No reaction from MO.
For mouths ores, I was Anbesol. It's OTC.
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I will tell my oncologist / nurse. I was pregnant when I got diagnosed and had to be a lot off work because I felt sick constantly and ... BAM breast cancer. Now I need to work for my economy... But I like work ad well... it is just though. All my friends seem to live on while I feel stucked in cancer. Sorry for venting!!!! I am impressed by all of you!
I have some lesions in my liver which lie «hard to reach» so they can not take biopsi. So stage 3, but told may be 4... But now two years out in this «game»..... I get Ibrance. That is why i follow this forum... and the PALLAS trial forum.
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Uh oh. I just got a survey from the company that owns and operates the traveling Pet scanner I used yesterday. I filled it out truthfully. Y'all got a preview. No, I did not mention them using my port. And I did not get Jim in trouble in any other way. Suit and tie? Maybe.
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Comparison details of 3 cdk4/6 inhibitors
https://www.sciencedaily.com/releases/2019/08/190822113352.htm
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