Ibrance (Palbociclib)
Comments
-
Candy, sorry to hear that there could be some growth on the liver tumors. My first thought is the same as the others advice - I would want to pursue Ibrance Faslodex. For what it is worth, my joint pain is much less on faslodex compared to my joint pain on 7 years of Femara. Getting the injection is kind of a nuisance compared to taking a pill BUT it has been easy for me to tolerate.
0 -
Hi Candy. So sorry your progression was confirmed. As you know, I am dealing with something similar.
Last night I got a callback from my doctor with some 'good' news. The progression is minimal and in just T2 (new), clavicle (new), both elbows (but that is still questionable), the three lymph nodes that were always affected enlarged minimally and there is a new hilar lymph node. No organ involvement at this time. It's weird because the IMPRESSION only mentions the medastinal lymph nodes and hilar lymph node and the elbows which could be from movement. Maybe the other areas are too small? Anyway, my MO is still doing the Foundation One testing on my biopsy from 2018 to see if there are any mutations and that will help with determining the next line of treatment. I'll keep you posted on where I am off to next.
Thank you all for your support, thoughts and prayers. I truly appreciate it.
Jackie
0 -
Jackie, as far as I understand F1 is suggested fornew Mets mutation not primary, how tissues from 3 years ago can give accurate information?
0 -
Snow-drop...I don't know, I'm just going by what my doctor told me. It's not the primary tumor that is being tested (that is from 2009), it's the metastatic tumor from 2018 that is being tested. Maybe he is doing a liquid biopsy as well? Someone said I need to give approval for that though.
Maybe it's a genetic panel?
Genetic Panels
A slide of your tumour tissue (from a previous biopsy) is tested for a large panel of genetic mutations.- Provides a far more detailed panel than a liquid biopsy test
- Shows us the key mutations involved in your cancer
- Presents options for targeted therapies
- Turnaround time is slower than a liquid biopsy, typically taking about 3 weeks, once the lab has received a sample of your tumour tissue
0 -
First time on in quite a while..But I know you're all there for each of us. Had a chest,abdomen, and pelvic CT scan last week..with oral ..I choose (cranberry) and IV contrast..One other time I had diarrhea once while in radiology so wore my BIG girl panties.Will not go into many details like car ride home when it began.."Explosive" describes it when I got home..and regular diarrhea next day..Did anyone ever have take something else ?? This scan shows so much and I appreciate the results..Dr. did mention taking immodium possibly prior to IF I have test again.BUT I would hate to be allergic in other ways ..Open to any comments...course it will hopefully be another year Away..
Bless you all..Three years for me this April on Ibrance and Letrozole.Mets to lungs 2018 (from left breast had mastectomy 2008) and Triple Node BC found when they found my lung METS .leftover breast removed then..But at age 81 happy to share I am still hunting..and looking forward to hopping on my jet ski..Oops forgot just made appt today with ortho guy..to fix a sore left knee..maybe I won't hop on it. Peace to all.
0 -
Hi, lakewoman! I have scans done every 3 months with IV contrast but I have never had to drink anything. I have an iodine allergy so have to take a pill 12 hrs. and 2 hrs. before each one. You are really lucky if you only have scans once a year. My first breast cancer was in 2010 and I had a left mastectomy with chemo and radiation and then anastrozole for 6 or 7 yrs. I was diagnosed with MBC in 2019 with mets to spine.
Glad to hear you're still able to enjoy hunting!
0 -
Thanks so much Lee64 for all your information. I noted you are ER+ I am ER- maybe reason for less CTs for me..also I had no node involvement ..I did have a PET in July of last year.TY for being happy to hear I am still hunting..Shot a doe this year..and a 10 point and two doe.(yes had two tags😄 ) year before..I write occasionally about hunting ..PM me if you'd like to read one online.Thanks again..Hope you are not experiencing pain.
0 -
I don't have anything brilliant to add, other than just sending out love and virtual hugs to everyone, managing this illness can be beastly! Wish we could all enjoy delicious baked goods together.
0 -
Candy, Jackie, I'm thinking of you both dealing with slight progression. I'm hoping things work out that you get to dance here a bit longer
Bone scan #8 in the books today....took a hr and a half, longest yet, lots of extra pictures and a very rough tech ie: puling and yanking known areas with cancer with not even a hint of gentleness. At one point I gasped behind my mask as she was shoving my arms and pulling them above my head to get a tight picture. I gasped because it hurt...alot. She had looked me in the eyes at one point earlier asking how I was. To which I replied "fine". She said "You don't look fine". I said "I'm just scared". "Scared of what? The test or?". I said "I'm scared of the results"...now back to the yanking bit....she's puling my arms...I gasp and she replies with "This is standard, calm down, no one is doing anything bad to you" as she snaps the bands binding my feet together before jumping behind the glass. Meanwhile the mets in my shoulders are singing and I'm trying not to cry. I didn't have the guts to yell at her, I was trying not to cough because my throat was dry from having to wear a mask the whole time and my mask kept sliding up and at one point was covering half my eyes, I tried to blow it down or wiggle it with my chin...didn't work. I kept thinking the whole time I should of popped a mint like I normally do when I have to wear a mask thanks to Ibrance mouth dryness. Just wasn't thinking clearly today. I did put in to have my bone scan report emailed to me when it comes in. CT on Wednesday next week.
Anywho, that was a rant, and its done and overwith and with the turnover rate in oncology and techs in radiology I probably will have a different tech so screw crying over spilt milk, I'll just whine over it a little. I'm really not emotionally cut out for this disease, I don't know how to look at the disease itself as anything but an empty glass.
On a side note. I did have a few visits with nostalgia recently. Why it is with Ibrance in terms of bathroom activities either your recollecting the Dippin Dots cubicle at the mall with a cup full of tiny frosty rocks or your gazing at the chocolate waterfall willy wonka style before cream and sugaring time. I'm starting cleanout early, last thing I need is to see "artifact" on my CT report and then know that some radiologist somewhere knows way too much about my bowels.
Hugs ladies
0 -
Oh Miss Rabbit...I hear you loud and clear!
Wishing you the best results possible! (((hugs)))
0 -
Rabbit, oh my god, what a dreadful technician! Um, yes, someone WAS doing something bad to you, as in treating you with no compassion or care, minimizing your fears and then actually physically hurting you. That's really, really awful, I'm so sorry you had to go through that.
Also, Dippin Dots...hilarious! In an ironic dark comedy kind of hilarious way.
0 -
Rabbit - Sorry that you did not get compassionate care from that tech. I understand that they want to get the best images of our body parts, but we are not a bunch of Stretch Armstrong dolls that can bend in any direction. Geez! Hope all goes well with the CT scan and hoping for all good results.
0 -
Rabbit,
So sorry for your experience. I've had issues as well in one of my nuclear bone scans -- not fun. And I think it set off issues with my back as well, bc I couldn't get up off the table and the tech just stood there. That was second only to the CT tech who must have been off schedule, and pretty urged me to almost jump on the table, had to ask for the cushion for under my knees, and again, offered no help in getting up.
Let's start a movement for kind, gentle techs!
0 -
Good morning! I just want to report back on the uptake on my belly. MO also believes it's injection sites inflammation & should not be worried.
For those who on Lupron, can you tell me what dose are you on? I used to be on 22.5mg. However my new MO just gave 11.25mg this time. I asked why & he told me 22.5 is on used for prostate cancer. Women only need 3.75mg monthly or 11.25mg everyone 3 months. I appreciate your inputs on this. Hugs!!
0 -
Oh Rabbit I am so sorry the tech was so unkind. Nothing about this cancer is fair. But, I did get a laugh about the Dippin Dots versus the Chocolate waterfall. Haha.
42young-- I am on Lupron--- monthly at 3.75mg.
0 -
Rabbit - in your pocked while you wait for results. OHHHHH i am mad about the tech. As if we don't have enough to deal with. Hope you are having an ok weekend and some nice spring weather I will be thinking about you on Wednesday and will look for an update!
My birthday is April 1st. For my birthday this year I decided that we would take a family vacation to the Oregon Coast, so we leave tomorrow . We are bringing our young adult kids, daughter is bringing her best friend and we are bringing her dog and our family dog. I am really looking forward to this trip - it will not be a warm weather beach trip but the Oregon coast is beautiful.
Lakewoman, my onc orders petscans and they inject me with contrast so I don't need to drink it - so sorry it made you sick! My next Petscan is April 5th.
0 -
Aprilgirl- the Oregon coast is so beautiful, I am jealous of your trip!
We've been to a lot of different beaches around the world, and the Oregon coast is one that remember with the greatest fondness and where we would like to travel again one day. Have a wonderful trip!0 -
Pocket duty this week for:
Rabbit- CT on Wednesday--- when results?
Snow-drop--- Spine MRI on Tuesday--- when results?
Anyone else this week?
0 -
Candy thank you so much, I appreciate your kindness while you have a lot in your plate. I am sure you have done a deep research and ready to educate your MO about best options, all the best on your way. I really hope this small increase is not serious.
I requested for mri without contrast this time, because I am tired of different injections and their possible se. I just want this time mri will show NED in my cord 🤞🤞🤞 so then I’ll continue dealing with the rest of MBC!Rabbit, sorry about your not so good experience with the tech, they must be sensitive with patients, and must know that they don’t serve a healthy dude- just for fun.
Happy birthday April (in advance!) sounds like a nice trip, enjoy it!
0 -
Snow-drop--- I care for each of you and can truly empathize. I have read at least a basic description of the various local liver treatments. Not an expert by any means, but just want to kind of understand what the liver tumor board may suggest. At least say I have heard about it. I did meet with my Palliative Care Team (per Zoom) on Thursday. I told them "small, steady increases", the wording my MO used. I said "she did not say the progression word". The Palliative Care Team does have my reports on their computer too. The Palliative Care doc did verify what I knew, that this is progression. Albeit small progression.
0 -
Rabbit - sorry you were badly treated by the tech. There is one image center I will NOT go back to because they would not listen. I explained I wanted IV in left,even though 4 nodes had been removed, because of the lymphedeme in R-arm do to the new cancer. They refused and they refused to call my Oncologist. 3 techs with 3 or 4 pokes each could not get an IV to stay. So, they did an ultra sound guided IV, which I was told I would not need to pay for. When billed, I called the center and told them why I would not pay, they did not argue. At another center, they have nevr had a problem using the left arm for IV. At my last DR, I mentioned that future CT would be difficult because of lymphedema in R-arm. She said it would be in the orders, and they would have to find a way to make it comfortable. Never the less, when it comes time, I will call the center first. I just had an Angio-Thorax Ct because of fluid in chest. That tech said it would be better if my arm was out of the way, and we tested how much I could lift it out of the way. When it was obvious that I could not, he took CT with arm at side.
0 -
aprilgirl1 Thanks for your reply regarding CT scan and oral contrast I drank and gave me diarrhea SE..you said they inject contrast..I had IV contrast also but that was iodine med contrast..??? Were you speaking of that one.??..Help me out bit confused...
0 -
aprilgirl1
Oops now I see confusion..I had CT not PET
Oral and IV for my CT scan
0 -
Again, thinking of everyone with upcoming scans, waiting for results, and results of scans that are hard to hear about.
I read an article that said neutropenia during the first couple of ibrance cycles could be a good sign? I'm definitely having it, have chills and 99.4 temp, will be keeping my eye on the temp if it goes higher. Am in my week off, hoping my body gets it together by the end of the week.
0 -
Waiting Waiting Waiting...I hate it btw.
Candy, I requested the report be emailed to me for bone scan..scan done on friday, probably won't be read/available til monday, so hopefully monday/tuesday i will know- if not i can get a copy printed after my CT on wednesday at medical records. So I will know bone scan for sure by Wednesday. Hoping to know CT scan by friday, will sign medical release for it to be sent to me after its read right after I finish my CT . As long as i get both before I see MO on the 9th, I'll be ok..just want time to digest before i see her...I just need to know first. Thank you for keeping track of us on top of your own stuff
BevJen, I'd join the movement for kind, gentle, techs! I hope i get this young tech with a unique name that I had 2 scans ago for my CT, he was great, he was the one to give me my barium for this upcoming one so, I have a shot it will be him, truth is you really never know what your in for when it comes to techs. So sorry about your back issues following a tech incident that underscores why a movement is needed. Centers run these machines til they smoke to get their money back and then some for purchasing them, don't book and double book and shove people off cuz your in a hurry...geez.
Irritates me as much as the chatty techs, ie Jackie's rude tech.
Happy early birthday April, enjoy your trip, it sounds wonderful! Oregon I have heard many times is beautiful, enjoy enjoy enjoy! I vote for pictures!
BlueState - I've had that problem too about techs or nurses not respecting not using an arm. I can only use my left/I only want to use my left because I had 16 lymphnodes taken out at my mastectomy on the right. I have had nurses argue with me about not using my right arm because they mess up with too many pokes on my left and say something like "Oh it's okay if you use your right arm, you won't get lymphedema" I said yeah, uh right. Not taking my chances. I was bullied into using my right arm one time, and ever since then, I've had to do fist pumps every once in awhile. No swelling, just pain in the arm that goes away once I stretch it really good.
Cakes, remind me, is this cycle 1 for you? Yep, keep an eye on your temp 100.5 and above definitely let your MO know.
Going back into my head for a bit. Hopefully I can get reports in my hands fast. They don't let you just walk in to get stuff anymore you need a password to get in and you only get it by having an appt/scan/etc so I need to coordinate stuff when I am in the building for the above. All part of self advocacy...get's really tiring after awhile, but we do it nonetheless so we have hair left at the end of scanxiety.
0 -
Rats. Ended up in the hospital, temp got up to 102, febrile neutropenia, they want me stay here at least overnight if not for a couple of days. I really hope this doesn't absolutely prevent me from the ibrance dance. Will talk with my oncologist tomorrow about options. Rats, cats, and bats!
0 -
SF cakes sorry about the hospital stay. Lakewoman nice to see you.
Take care all
Tany
0 -
One of the things I have learned from this blog is how great the people are at the cancer clinic and hospital. I have always appreciated them and their attitude towards me, whether I am getting scans and/or treatments. Reading some of the posts on this website reinforces this.
0 -
SF-Cakes - sorry that you ended up in the hospital. Hope they release you sooner than later because it’s so hard getting any kind of rest when nurses and PCTs keep walking in and out of your room.
0 -
Shoot, boot, toots! Emphasis on the toots! Cakes, Sorry to hear you ended up in the hospital due to neutropenia. Its possible they may try you at lowest dose @ 75mg and check blood mid cycle to see how your body is handling it to prevent further issues. Hoping you get to keep dancing with us. Hope your back home soon too away from hospital noise in your own bed enjoying freedom from hospital food. Thinking of you
0
