Ibrance (Palbociclib)
Comments
-
Snooky take care of yourself and great that you are feeling better...prayers for you0
-
sending hugs and positive thoughts to Jaycee and Snooky!!! 🦋🦋🦋🦋
0 -
sending hugs and positive thoughts to Jaycee Jaylea and Snooky!!! 🦋🦋🦋🦋
You’ve got this!! We are all with you and surrounding you 💕💕💕💕💕
0 -
Hello all. Wow, I caught up on 4 pages of posts. Great that we are here for eachother.
I have a wig from when I lost my hair before. It is packed up and ready for the next time I need it. ( hopefully not for a long time ). I bought it at a wig shop in my town. I didn't know about the American Cancer Society giving away free wigs- no one told me until I had already bought mine. I bought a "special" brush and shampoo from the shop also--what they recommended for preserving the life of the wig. I never used an adhesive. I don't like wigs---to me they are hot and itchy.
Pat I LOVE your stories. Your gift is making us laugh. I got so tickled about the heartburn story- taking additional dose of Ibrance and feeling like " swallowing a meteor".
My thoughts and prayers are with you all esp Jaylea.
Alert. Dark thoughts coming....
My next CT is due in April- not scheduled yet. Starting to get a little scan anxiety. My last CT 3 months ago showed an area of concern on the liver---"artifact", or shadow, as a possible new lesion. We will recheck that area this time. Seems we have CT's, or what ever scan your MO orders, and then we relax when they are done for another 3 months. But I got to thinking, just because a scan is stable we are not out of the woods. Look at Jaylea, trouble with swallowing and BAM mets to esophagus. And what about brain mets. Most MO's don't do routine Brain scans unless we develop symptoms. So could we have brain mets and not realize it until they get large enough to cause symptoms. So my question is, why don't we have head to toe scans routinely?? I wouldn't think it is all financial---my CT of chest, abdomen, and pelvis is not cheap but the insurance approves it every 3 months, so why can they not approve a brain scan also?? And why did Jaylea's scans not see the esophageal mets before it got so bad she needed a feeding tube.
Sorry for the depressive thoughts. Especially for the newbees. Sometimes I just get depressed and angry with the cancer.
Alert. Another dark thought coming...
I know we say we are "living with the cancer, not dying from it". But are we just kidding ourselves.
Sorry, I guess I am just in one of those moods today----angry with the cancer and angry it has hurt all of you and taken so many wonderful women.
0 -
Jaylea, Jaycee, and Snooky, praying for all of you today that your infusions, tests, ses, hurts, and worries will all turn out well.
Pat, thank you for your consistent humor and suggestions. I love the poster. I have shied away from attending such groups as I have not found a MBC group here in San Diego, but I haven't tried hard. My MO said the one at the hospital is mostly BC ladies and doesn't really apply. You encourage me to look again.
Candy, thank you for your honesty. I have had similar thoughts and hate to just sit around waiting for the next met to pop up--not a way to live! So I am anxiously waiting for warmer weather so I can walk the beach and let the waves beat the blues out of me...sans wig!
0 -
Thanks for all your thoughts. I'm really feeling ok. All the phone calls, phone messages, emails and texts about the accident are keeping me busy and distracted. Spent the morning on the phone with insurance people, body shop, car rental place, etc.
Candy, I get it. I try to remember Z saying that denial is a good place to be mental health-wise. I have a lot more practice than most because I have been in denial over my MS for YEARS. I'm good at it. I also try to remember that worrying about it doesn't fix anything. It doesn't help. It just makes you crazy. I try not to be crazy too much. Hard but I try. For instance, I haven't told anyone (except you guys) that the kid who hit my car was watching me at the library and followed me out the door. That sounds crazy, right? If I told anyone else that, they would just say, "another crazy old lady." And his car was all dented on the back and the side. Same place he hit me with. (The bump we had in NO WAY caused all that damage.) Was this a PLAN on his part?
Crazy old lady.
0 -
Jaycee- I think of myself as a realist. I go on with life--work, family, friends. But might as well call it as it is. No I cannot fix things by obsessing about them, but I don't want say it is good when it really is not.
I am the crazy cat lady. HaHaHa.
0 -
Hello everyone, I just got back from seeing my MO and my tumor markers went up on Ibrance. I've had an interesting trend of CA-27.29. When I started Ibrance I was at 42.5. The readings one month after ibrance were 47.2 (which I assumed was a tumor flare) because the next few readings were 39, 38.16, 37.99, 37.65, 37.65, 38.16 and now 44.07. Not sure this is another flare or genuine progression. I know were supposed to wait for another reading, but wanted to checkin with y'all to see s what your experiences have been with tumor markers on Ibrance.Starting to get alittle worried now
. Could really use some advice now0 -
Ann, my MO does not do tumor markers. She had a professor in med school who went "ballistic" when a student asked about doing them. The professor, who she respected a lot, said they mean nothing in MBC. Just one MO's opinion.
0 -
Thanks Jaycee, absolutely agree they’re more trouble than they are worth sometimes. My progression and response has always correlated well with markers though so my MO definitely uses them for me. He is still going to wait for another reading and a pet scan, so I’m still hoping I can stay on Ibrance for a bit. I did want to checkin to see if anyone’s had this experience on ibrance.
0 -
I’ve only been on ibrance for a little over a week, but if my tumor markers hadn’t been climbing I might have had to wait much longer to catch my stage 4 dx. Hopefully they’ll continue to give us some good info as we heal these bone mets.
0 -
Jaycee, thanks for explaining. I was just about to ask how and when tumor markers are done because I have hdeard nothing from my onc. I assume she's not a believer either.
Candy, interesting thought on head to toe scans. Being a newbie I've had tons of tests in the last few months, with all unfavorable results, which is what got me here. At my first month appt I mentioned feeling foggy and fuzzy in my head along with some dizziness. I assumed it was a side effect of the drugs. So I'm scheduled for a brain mri 2 hours later, “just to be sure we're not missing anything." I honestly didn't want to know. I was sure it would be bad news. (This one wasn't bad.) Overall, it would make sense to do complete scans at least some of the time.
As Jaycee (and Z, who I wish I'd met) mentioned, I sometimes need to be in denial for my own good. My mind can't yet accept the diagnosis fully, especially the terminal aspect of it. Reading here has helped me feel better, knowing that lots of you are here to share and support and be supported. Thanks all for being here and taking in the newbies!
0 -
Rosie, sometimes tumor markers don't work. Mine do not. They just don't provide any valuable information.
We are so glad to be supportive but sorry that you have to be here among us. We all get it.
0 -
Thanks for all of your input. Now I wish mine didn’t do markers especially on Ibrance. I know ibrance causes flares and then markers go down after. I’m just wondering if those who do markers that are typically reliable show this trend of going up, down and back up again like mine.
I’d love to stay on ibrance longer. It’s been relatively easy on me so really hoping here that I can continue at least a few months if possible before the search for the next drug begins. Sigh. I hate this disease
0 -
Ann, your CA 27/29 numbers are great! My onc says up or down 10 points are considered stable. Mine has gone from the 40s to now 209 in the last year and a half. I’ve had an abdominal MRI, a bone scan and at least 6-8 ct scans and all is stable . Scans always trump tumor markers. They are notoriously unreliable for many.
0 -
KitKit, I just wanted to echo what IntoLight said. My history is also similar that I had no personal history of breast cancer and no tumor. I went into a quick, dramatic, and unexplained decline in the fall of 2016. I finally collapsed in excruciating pain, and ended up in the emergency room. A tumor was found on my spine, and had hit my spinal cord. I was hospitalized and underwent endless tests and scans showing nothing, but the biopsy finally came back as positive for beast cancer. I never even had lymph node involvement. Nearly 2.5 years later I actually feel better than I had for years before my collapse (when my stealth cancer was likely spreading.) Ibrance, Arimadex/Letrozole, and Xgeva have healed my lesions. Side effects have been often annoying but never debilitating. It sounds like your "tumor burden" is very low, and you have every reason to be optimistic. I think the AIDS analogy is apt. Take heart. You will find amazing support here.
Speaking of amazing, PatG, you've outdone yourself. I didn't think it was possible! :-)
Jaylea, I am thinking of you and praying for you.
0 -
Candy, I don't recommend this, but last summer/fall I got into a frenzied exercise mode, and during one of my fast walks, tripped and went flying, and banged my head on the sidewalk. After five hours in the emergency room, they decided to do a CT. All clear -- yay -- but what a way to find out!!!
Ann, my tumor markers have never, ever, ever, ever, been outside of the normal range. Needless to say, I seem to support the camp that has no use for them. Where is your progression? Is it bone or elsewhere?
0 -
Lots of chat going on! Jaycee, Jayleaand Snooky hope all at least manageable re next steps. As Pat says SEs do flare up and recede. Mine come and go but are luckily doable so far, although still working FT in a full on job is pretty hard going. Most colleagues now know what's going on with me ( a long slow process spread over a year, not a big announcement) and I have great support. I do think this is such a scary thing whichmost folk do not understand, that it's good for them to see me turn up, carry on as normally as possible and look fine. Maybe the next time they hear of someone (or themselves sadly) with this diagnosis, they won't just assume you look terrible, go off sick and then die very quickly. If I had a british pound £ for every time someone told me I “look so well", I could fly first class anywhere....or at least toLondon from Glasgow!
I will be ‘retiring’ hopefully well before I get to the stage of looking like a poor sick soul. And then I’ll party and do all the things I have never had time for - within reason with SEs/ progression factored in. Need to be matter of fact and also hopeful
We don't seem to do tumour ( we spell it differently)markers here in Scotland.
0 -
Karen... I am so with you on this. So many people tell me how good I look and I wonder what they were expecting they were going to see instead...and I know I don't look very "pretty" as I am. It is difficult to know how much to tell them.
As far as tumor markers go, mine have been unreliable from the start, even with active multiple mets. Go by how you feel and let the scans show progress.
0 -
Good evening Ali hope your treatment went well Jaylee.
Pat your humorous take on all of this is fantastic.
Prayers for all of us. Our scanxiety tests and treatments need prayer
Tanya
0 -
Ann,
10 yrs ago my MO said that under 24 is normal without cancer. Mine were that low then. And most test scores deviate a little from test to test.
Now I see 0 to 40 is a good range. Hmmm. A different lab maybe?Fast forward 10 yrs and i started at 43. It goes up and down between 13.5 and 33. Scans are clear. No aches and pains. I dont trust my tumor markers. Time will tell.
And for everyone else, thank you. I wish we could meet and i could hug you. Often i feel like im eavesdropping. Past message boards I've been on did not allow repeating what others said. So i dont chime in with all the well wishing etc. Please know I wish you all the best.
Gailmary
0 -
popping in to report that my swollen hip/glute is cellulitis. Currently at the ER getting IV anti-biotics. Likely from Fulvestrant. Anyone else have this while on Ibrance? I have to stop mid cycle now
0 -
thanks Lynnwood, Penny, Karen, Tanya, IntoLight and gailmary! You all are amazing and I don’t know what I’d do without this safe place.
Penny, I have had Mets to lymph nodes in my chest for the past 4 years now. These are different from the intramammary nodes and classify me as Stage 4. I’ve been went on Affinitor/Aromasin during which i was NED for 3 years and then had a recurrence to another two different lymph nodes. My MO ordered a pet scan and we’ll wait for the results before making a call
0 -
Ann, never any primary breast tumor either?
0 -
Ashlyn....I am having awful pain in my hip. In the am can't even walk so not sure if it is hip or back. No mets in lower back. MRI Monday will hopefully give the dr info on what is going on. I haven't told my Onc yet. If call her nurse will just tell me to go another to find out. I do feel this is related to Meds...maybe not Ibrance but Letrosole. Hope you are doing better.0
-
Treatment day went off without a hitch - thanks for being there with me. The woman next to me was on the same treatment and she looked fabulous - full on makeup, fancy headdress, etc. I looked like a shlub in yoga pants and baseball jersey. Next time I may have to up my game.
Candy and Karen, yours are the sort of yin and yang thoughts I have all the time. I had planned on working my one day a week for at least another year. This turnaround was so BAM out of the blue. The tumor had buried itself in the esophageal wall and went undetected on CTs. And I had two medical facilities review them. Maybe a PET would have picked up the metabolic activity. The reality is the doctors use their best informed hunches while trying not to irradiate us into fossils.
Let's be honest - mine is the sort of outlier development that gets thrown out when calculating averages. At the same time, my MO gives me HOPE and I have a GOAL to work toward. So I thank each and every twinge and discomfort as proof that this cocktail is working. My goal is to get back to working that one day a week, and wearing that baseball jersey that my nephew gave me for a few more seasons.
Jaycee, I think people say about me "She's batty - but funny"
0 -
Jaylea, I'm so glad you have this treatment behind you and the medicine is doing its work.
Welcome to "Schlubs 'R' Us"! I rarely get out of pajama pants any more. Yoga pants would be an upgrade. But when I go to the cancer center once a month I wear a skirt, sweater, shoes and makeup.....keeps 'em guessing! After I die they can say, "But she was looking so good!" And what is it they say about everybody who dies these days (even the grumpy ones)?......"She could light up a room!"
Love to you as you begin again!
PatGMc
0 -
Good afternoon all
Pat I laughed at your daily outfit description of pjpants, as I sit here in a very faded yellow nightie with 3 kittens on the front. It’s almost 1:00.
Jaylee so glad you got that treatment under your belt and that the doctors found the hidden tumor.
My treatment outfits usually are based on how easily the sleeve can roll up and the port can be accessed.
Have a good day all
Tanya
0 -
Jaylea---Bless you and you are in my prayers every day. I am sure you are just as beautiful in the yoga pants and jersey---and comfortable. You fight this, girl. We are fighting with you. Team Jaylea!!!!! I hope I did not upset you with my words.
I hope I did not upset anyone with my words. Sometimes I don't have a filter. I just feel that pure, unadulterated honesty is what we can be here. That this is a "safe place" for us to say what we truly feel. And some days I just want to be honest about my situation. I can go out and talk with co-workers and say "I am fine" when they ask/if they ask. And I can be strong around my family--because I have always been "the strong one". But here, with you all, that really KNOW what is going on I can be truthful and voice my fears. Friday I got my 3 month Xgeva injection. Usually they don't bother me. But this time...WHOA !!!!! I worked yesterday. I felt like I had been hit by a truck!!! Do my co-workers care? No. They don't know what we go through. They don't understand about the shots, the treatments, the side effects. You all do.
I am spending today in a Tshirt and sweatpants. Comfortable. And my treatment outfit on Friday for the injections and port flush was, as Tanya said, something easy to access the port and my arm and butt for the shots!!!!!
Hugs to all.
0 -
Hi all;
My ONC doesn't do the BC tumour markers as he doesn't think they are helpful. I do have the CA125 done monthly as we are still on the lookout for ovarian cancer and it is useful for breast cancer mets to the lungs....or plura of the lungs which I had. Otherwise just CT's every 3 months or so. Years ago I was advised by another bc patient that if I was concerned, for instance brain mets (I was Her2+ then and as my bc had spread to my supraclavicular node in that direction, a big risk for me) to say I had headaches or whatever and get the MRI done. As it happened I did have dizziness and had the MRI but it was a lacunar stroke......for heavens sake what else could go wrong. I remember my onc telling me this news and I looked at him and said that when I was diagnosed with BC I thought, well at least it isn't a stroke. We both had a good laugh. Luckily for me I have been on medication with no se's so far after many years.
Well spring is coming and I have been thinking about how I can get some exercise. Walking is tough for me for any distance as I don't think I ever really recovered from the ovarian treatments and now this so I'm pretty unsteady. I really didn't want to use a walker and have just seen a pretty nifty thing that looks to be just the ticket for me. I want to be able to go distances but if I get tired sit for a while. Just to see what you all think. Its expensive but I'll work that out and I'm getting information on a plan they have to crowd source funding.
love you all,
Cathy
0
