Ibrance (Palbociclib)
Comments
-
As far as the drinking of something before Pet, my Pets are always called Pet/CT. As mentioned above, the drink is contrast for the CT part. I've had eight of these Pet/CT's and ONCE a radiologist said in the report that he couldn't see something well because there was no contrast. None of the other readers said anything about that. Concerning? I don't really know. May ask MO next time if I remember. I've never had the CT part "with contrast." Maybe it depends on where they are looking?
0 -
Hi, this is off subject but wanted to update you on my Ibrance situation. I don’t qualify for any grants, etc. but the medication navigato at my MO office was able to get me three months free from their samples. It was going to cost 5200$ for the first month.
Suzy ( Stllivin)
0 -
Suzy, I just PM'd you a bunch of info and numbers. I'll keep looking.
0 -
Just got my scan results back yesterday when I went to do my blood work. All nodules seen on last CT have totally resolved and no sign of original tumours!! I am sooooo happy. There are two larger nodular areas, one in each lung but they say they are mostly suggestive of inflammatory change and suggest follow up in 3 to 6 months to reevaluate. I am fine with that as I think I had a bad cold from my daughter which was causing me to cough like crazy (and driving me crazy too with worry). Also, my CA125 came back down a little after it had started going up last month. So for me all good news. No sign of more MBC or ovarian cancer. I am celebrating tonight with a glass or two of wine lol....and some cheese.
It really seemed worrisome last month and this has shown me how quickly things can resolve. I pray you all have similar success with your scans. January has always been a big month for scans as I remember even going back the 15 years since I started this journey (my daughter pointed that out to me this week).
Last night I had my grandson over as my DD and SIL went out. His smile gives me so much happiness. I tried to post a pic of him but can't figure out how lol.
Hugs and prayers to all,
Cathy
0 -
Snooky,
Take a deep breath. Breathe. You have been through much worse than waiting on a report before. This will pass and you will know what you need to know.
I need to know everything too. Now. Or yesterday!!!! Learning to wait keeps us healthier and calmer and able to enjoy what good surrounds us while we still can.
Sending you a cyber hug and a bucket of joyful patience.
Gumdoctor
0 -
Seaway,
So happy to read your elating news!!! I have no grandbabies but I sure get joy from my kitty babies, every time I get to be with them. I get it.
Gumdoctor
0 -
Finally, my nurse called me. The CTresults have not come in yet. The nuclear bone test shows slight progression to the original 4 areas. No new areas. My Onc wants to set up another biopsy for Foundation One testing. They'll call back today with date of it. So, stary on Ful/IBRANCE until this test comes back in a couple of weeks. Finally, I can breathe. Not knowing is the worse. (the nurse did apologize repeatedly for the way this week turned out) So, no immediate changes. THANKS ALL of you for holding me up today. GOD Bless
0 -
snooky - good work!!!
Jaycee49 - I realize that! Please watch what you write as your words do have a sting. I was trying to be supportive.
0 -
Snookie, well done, and Seaway, HALLELUJAH!!!
0 -
Hello again everyone,
Just dropping back in to report that I had my PET/CT scan on Thursday and by that evening my MO sent the report with the words, "Great Scan". The details were there but I didn't bother looking further. His words were enough for me. I go to a smaller but very good Cancer Center here in my hometown and I thank God often that I don't have to drive far or wait long for results like so many of you. While my MBC is probably not very exotic, if anything really unusual pops up, my MO will send me to a major cancer center not far away in Chicago. I feel very blessed with my results and my treatment center.
As for those of you drinking "pink stuff", my guess is they are looking at liver things. In my three years of MBC, with lung mets, I've never had to drink anything, thank goodness. It's always been an injection of the contrast. This time, the tech actually found a vein on the first try. It was a good day for me.
Sending prayers to all for great scans and reports.
Faith (in the future).
0 -
So happy to read news of good scans!😀❤️ Yippee to you Snooky, Seaway and Faith, you ladies are awesome It is interesting to read about different imaging for all of us and I don’t know enough about imaging to know why different types are used. I had a PET when I was first diagnosed but insurance will not approve another one unless there is a change - good I guess. Plus they told me the lung mets are now so small a PET will likely not pick them up. I get a CT chest/ pelvis scan every three months with contrast - this is injected I don’t drink anything. Next scans are beginning of February, I’m expecting good news after the awesome skate ski I had today - almost felt “normal”!
0 -
Great news Faith, Seaway and Snooky.
Sorry, Philly. You said "labs" so I thought you meant blood work. My bad. (I was surprised when my original biopsy results were posted on the portal but that was analysed in the lab, thus it was posted.)
Joyner, how is the radiation going? Halfway through today, right? Hope it's going ok.
Grannax, how's the AA going? Too soon to tell, I guess. Thinking of you guys.
0 -
Jaylea - nice to see you! I’ve been around just busy at work. How are your vocal cords?
Snooky - Curious if you got that call? Thinking of you..... waiting sucks.
Love to all,
Lauren
0 -
Faith, great news! HOORAY!!
Janet, I continue to be astonished at your recall of facts! Yes, today was day 3 of 6 of radiation. Piece of cake so far. Actual radiation is 60 seconds (I count it as it goes...one thousand one, one thousand two.....).
Quick update: I received the results of the recent PET today. It did work this time, showing that the cancer has "ramped up" a bit since October but only in a few places. On the good side, the PET should be a viable option for evaluation going forward. Even better is that the PET showed no sign of organ involvement so far. My onc continues to say that I am a very unusual case of a very slow growing cancer that has only recently made itself visible and so far only in the bones. Thank God.
I start Xeloda after I complete radiation and a course of antibiotics for a urinary infection brought on, apparently, by the kidney stent inserted during the hypercalcemia crisis. Set to start X on January 17th. Onward....and thanks so very much for everyone's interest and support.
Hugs to all-
0 -
Hi Lauren, thanks. Yes, scroll up a little bit and you'll see that I posted it. Not great news. Not horiffic. I finally had to call and harass the office. Thanks for caring.
0 -
Just thought I would post to say Hi to you all from snowy Illinois this evening.I have been off work the last few days (scheduled) and now with the snowfall I am due to go back to work tomorrow. Sigh.
Good news, I got my Ibrance refill by Fedex today. Woohoo.
Congrats to Faith, Snooky, and Seaway for the good scans and good news.
Hope all have a good weekend.
0 -
Sorry. Reread Snooky's post. Praying for good CT results and praying for the progression issue in the bones. Another F1? A bone biopsy?
0 -
Candy They want another biopsy on the original tumor (was never removed) to see if it's still E+ because two anti-hormonals have failed me. Then they said they'd sent a sample to Foundation One to see if I have mutations. Meanwhile, stay at least another month on Ful/Ibrance. While awaiting decisions. If this combo has failed, that means 17mos with no treatment. I was on Ameritrex (sp) for a year. No one caught that it wasn't working. So, I'm just praying that God has this covered.
another good thing is my ONC is retiring so I"ll be seeing someone different later this month.
0 -
WOW lots of information here today. Snooky glad you got a call, I wish for better news. I just had to change because of progression. I'm on AA.
The first 12 days have been interesting. Today I realized my already thin hair is falling out more than it did with Ibrance. I wasn't expecting that. Boo. My fatigue is sometimes worse but more of a random not as consistent. I don't have mouth sores and am not using the mouthwash until I do. It's my lack of appetite that is worrisome along with all food tastes completely weird. I know I'm losing weight but will know how much on Monday. I should also get my Pathology report on Monday, the genomic testing won't be back for awhile. So, all that to say I'm not liking this drug much. But, I'm still functioning. I don't have any symptoms of pneumonitis but I think that happens later on if it does. I just hope it's working.
I read my reports all the time. I don't think they are confusing, especially if you just read the summary/impression. Of course I've researched and read a lot in my 26 years. I don't get them until I have talked to the doctor, now. But, they are not hard to understand in my opinion.
Joyner glad your PET made sense this time. I'm glad your radiation is going ok. Next week will be your launch onto lady X. Praying for both of us.💞
0 -
Hi Snooky - I posted several hours ago but something happened and it didn’t show up until later in the day. Anyway - I did see your update and I’m so glad you didn’t have to wait through the weekend. Like you said - could be better New but not horrible. Hoping your biopsy and F1 testing are helpful.
Candy - YAY so glad your Ibrance arrived.
So happy to read the wonderful scan news from Faith, Seaway too!
Grannax and Joyner - thanks for keeping us posted on how thinkgs are going. I think about both of you all of the time and aim glad to see things moving forward. Bummer about the hair thinning and lack of appetite on your new cocktail. Joyner - glad your scan is finally catching up and I love it that your doctor tells you all the time that your cancer is so slow moving. That’s a good thing for sure. Hope your infection resolved quickly!
Love to all,
Lauren
0 -
Friends, I am popping in to read and keeping up with your news, good and not so good. My prayers are still going up even when I don't comment. I also ask for your prayers as someone I love very much is going through a very difficult time emotionally. I'm reminded of the hard times some of you have shared about relationship difficulties. They are often as hard, if not harder than physical illness.
Know that I love you,
PatGMc
0 -
Congrats to all those with good news. Praying for all of us....especially, those with not so good news. Hoping the new treatments work wonders for you.
My onco said it takes 4 months to see a change with Ibrance. As for results being released -- it's my understanding, from the information on my portal, results are released by the oncologist when he's read them. I usually get results on my portal within 2-3 days. I sort of panic if I don't see anything that soon, thinking things are not good.
When I have my CT/contrast. I've never heard it called a PET CT. I drink about 16 oz.of "stuff" prior to the CT. Then, I have an injection of contrast also. When I see my results, it's very descriptive of every organ etc. I worked in a radiology office for many years. I've typed many reports, so I can pretty much figure out what's going on, being able to read reports. Sometimes, it's better to just read the "impression" and be done.
Happy weekend to all.
Hope
0 -
Jaycee - my brain is foggy and I totally misinterpreted what you wrote! I’m sorry! I woke up with a cold today and I think I was just mentally scrambled yesterday and confused.
Sending everyone love today and hoping people are feeling okay!
Pat - will add your friend to my wish/love board of names.
Hugs
Brenda
0 -
Thanks Nanahope for your encouragement about it's too early for IBRANCE to start working. Many others on this thread have told me the same. I've mentioned this to my ONC and she said yes, that is correct BUT you can't have progression. I had noticed progression after two months (via my breast tumor) and now at three months, the bone scan reads small progression in original 4 areas. So, I don't know if I should push for more time on Ful/Ibrance or What? The progression part is what I do not understand. Thanks for sharing. Hugs
0 -
Snooky, with just four spots of cancer you are almost oligometastatic- Can you first look into getting those spots radiated into oblivion? And then consider if you need a faslodex combination of some kind?
0 -
Thank You Cure-ious, I will certainly talk with my Onc. about that. I appreciate your imput.
0 -
I finished my first cycle of Ibrance yesterday. My tumor markers went from 119 to 84 so I’m happy I’m trending in the right direction.
The radiation is causing pain in my ribs, spine and hips at night but I’m sure it’s short lived.
Congrats to everyone with good scans and prayers to those having progression. I hope the next treatment options work.
Thanks for all of the information on this thread, it has helped me so much
0 -
Novagirl: That is a spectacular decrease in your tumor marker number. Don't want to be a spoiled sport but don't get alarmed if your tumor markers fluctuate. Mine go down some and up some. As long as my oncologist is not concerned neither am I. I get mine done with every blood test (every 4 weeks). Previously I got nervous to get my tumor marker number but since I have been on this journey for 5+ years as have gotten a bit immune to the fluctuations. Good luck.
0 -
Wandering-thank you! You’re not a spoiled sport. I’m glad to know I can have an uptick in tumor markers and still have the chance thatmy medication is still working.
0 -
Scan this Friday....find out results on Tues. It has been a little over 21/2 yrs since I/L. A little nervous....maybe a lot nervous. At time of diagnosis in May 2016 was not sure how long I would make it, but I'm still here and thankful.0
