Ibrance (Palbociclib)
Comments
-
Irshize, I think I could tell after three or four months, from scans and bloodwork, that it was starting to work. Many people here will probably tell you to give it six months. I've gotten 16 months on it but I might be changing soon. Will know more at my next doctor visit. I hope I can stay on it!
0 -
Irshize - I had a contrast ct scan and nuclear bone scan done 3 months after starting Ibrance, I had been on Letrozole for about 9 months prior to adding the Ibrance. They showed stable and have ever since. I do think it is a 3 - 6 month window before you know for sure. I have now been stable for 18 months on this combo with Xgeva shots every 3 months - best of luck! There will be lots of knowlegable people here
0 -
Irshize, I'm sitting here in Memphis believing that your Ibrance is already working! I had a scan at 3 months and it had worked remarkably for me so there's no reason to believe it isn't doing the same for you!
That's my prayer. And in 33 months I hope you are still doing well, just like me and so many others here, doing the Ibrance Dance!
Love from PatGMc
0 -
Denny-I am taking vitamin D3. I just started about 6 weeks ago based on the advice of another thread here. My base level was 35 so I am supplementing with 4000 iu/day and am also trying to spend a lot of time in the sun without sunscreen. My oncologist will recheck my levels next month. I'd like to get to around 60.
0 -
Okay, folks, I need the collective wisdom of the group. I am about to start Ibrance. I am also about to embark on a trip to the beach for two weeks. I've had melanoma so I don't sit in the sun for long periods, but I would like to be able to walk in the sunshine, sit outside, get into the pool a bit, etc. I do use sunblock regularly when I am outside.
I just read on the Chemocare website that one should avoid sun exposure while on this drug.
Have others had an okay experience while using sunblock and this drug? Or should I be afraid to even be outside?
Thanks much.
0 -
BevJen, I live at the beach (literally--my condo overlooks the beach) and have never had trouble in 3 years. However, I do wear sunblock everyday. I take walks along the bay shore almost everyday. My onc told me as long as I wear sunblock I am fine. I have very light skin and have had some skin pre-cancer but otherwise I am fine that way. Just be diligent and don't ever-expose. I also always wear a hat and do not purposefully tan.
RE D3: I take 2000mg vita D3 everyday as I have a history of low D3. I have been stable doing this although I do not know my level: Just that my onc is content with where it is. Just ask and do what the Dr says. I think D3 is important on this drug regimen.
Irshize, yes to the above. Ibrance works differently for each of us. You may find results at 3 months or not until 9 months. Give it time.
Can you tell I am not feeling great today? Sorry if I sound short. Some days I just struggle a bit, but I have steaks and corn on the grill so things should improve shortly.
Chris
0 -
Hi when you all say you have been "stable" on Ibrance what does that mean...the cancer is still there same size just not growing? If so, does Ibrance ever get rid of the cancer does it every shrink it to the point of nothing?
0 -
BevJen,
I just went on a long trip to the south during my first cycle of ibrance and spent lots of time in the sun golfing, etc. I didn't have any issues, and I burn relatively easily (I still have an absurd tan line from a day I spent 45 minutes in the sun shortly after finishing AC). I used sunblock regularly and if I was out in the sun for a significant period of time, I tried to cover up for some interval of time.
Best of luck!
0 -
NicoleRod, My onc will not use NEAD (no evidence of active disease) because different scans don't always show everything, so she uses stable. For me that means all tumors have shrunk and no longer show on the scans and are not growing or changing. However, my scan four months ago (after two years of stable) showed two small tumors that were not present before, and my scan last month showed those two either disappeared or shrunk (yay Ibrance) but two others popped up somewhere else. That is the nature of this medicine and cancer for me. Hope this helps and is not confusing. Chris
0 -
Into the Light..yes thanks for clearing that up. I pray I can get to NEAD/ Stable
LETS GO IBRANCE
LETS GO IBRANCE!!!
0 -
Irshize, I really had no idea if It was working until my first scan after cycle 4. The scan showed improvement and I hope that continues
0 -
Hi, everyone! Is there a point where you stop doing scans every 3 months and go to longer with Ibrance or is it standard to stay on 3
0 -
Txgatata, I did my first scan after 3 months. The news was so good I decided to wait 6 months before the next one to make that wonderful feeling last. Since then I've been the one deciding and my oncologist doesn't mention scans unless I do. We agreed to do my next one at 3 months due to a tiny something that he and I both think is nothing. (But I may change my mind...who knows?!)
All that to say: You get to decide what works best for you. I also decided years ago not to do tumor markers when I saw friends stressed out for years over them.
Do this your way, the way that lets you have the most joy.
Love from PatGMc
0 -
BevJen, I specifically asked about light sensitivity prior to the start of taking Ibrance & was told there were no restrictions.
The reason I made a point of asking is because dh and I get a pool pass every summer and spend hours and hours there. I began Ibrance at the end of March, started swimming in June and have had zero issues being in the sun. As others mention, I also use sunblock, always have, usually spf 50. And I often wear a hat—when we go to adult swim, lots of women do.
We had our grandkids around the 4th of July and spent one day at the pool from noon till 8. I was fine. Most of that time is spent in the water, I'm not one for sitting out to sunbathe.
Enjoy your beach vay-cay! Pace yourself. Take it leisurely. Soak it all in!
0 -
Txgatata, I never did the 3-month scan; My first scan after starting Ibrance was at the 6-month mark, and we've done them every 6 months since then (I'm just about at two years now).
My scan reports say "No evidence of active disease" because there's nothing there to see. My primary tumor was removed completely during the surgical biopsy, and the one met they saw, on my spine, disappeared by the first scan. My oncologist is always careful to point out that there is no cure for cancer, that there may still be cells and/or tumors that just aren't big enough to detect yet, yada, yada, yada. I'm just grateful the Ibrance is still working, and looking forward to many, many, more, successful scans down the road!
0 -
Pat I am with you I said earlier I have no desire to follow tumor markers too much stress to me I will leave that one for the doctor.
0 -
-
42young's link in clickable form:
I gotta be good for something besides annoying people.
0 -
Thanks Jaycee. I'm on my phone & just copied & pasted it. How did you make it clickable?
0 -
42young. thanks for that article that looks so promising!!!!! Only bad part what they mention about how long FDA approval can take
0 -
42young, you use the 10th item on the menu at the top of the compose post box. Looks like a paper clip? Or a link in a chain? Paste the URL in there. You can have a more descriptive name appear by putting it in the second text field, but that's not necessary. The check box to have the link open in a new tab doesn't work so no use checking that. I've talked to the mods about it but got no where. So if you click the link, you have to click the back button to get back to where you were in BCO. I'd like to look at the BCO post about the link and the link itself at the same time but that's not possible.
0 -
Thanks again Jaycee. I tried to repost on the bone mets thread & it worked.
0 -
Morning all. Timely discussion on scan schedules and TM's. I have my CT's of chest, abdomen, and pelvis done every 3 months and TM's every month. We do not do bone scans and my insurance has denied another PET unless there is a change on the CT ( I have only had 1 PET at diagnosis ).
So I had my CT done on Wed morning. Last evening (Thurs) a little before 5pm I received a call from the onc office. My heart dropped to my shoes. Usually they are not that quick with giving me the results. Usually I see them from Medical Records BEFORE I hear from the office. The nurse relayed the message from the MO---- scans "stable"- their words. They did mention that my monthly TM's were still elevated this month. Last month highest they have ever been and this month the same as last. I see the onc next Wed for my appt. I know TM's are notoriously inaccurate. But I wonder if something is amiss since they are rising. Like activity, just not where CT can see it. I don't want to put a damper on good news, just wonder. Don't want to let my guard down. I AM thankful for the 'stable' scans. I am going to ask onc her opinion on the TM's next week. I then looked at the patient portal this morning at the results. The liver mets says in part "similar appearance to prior study" and "no new hepatic metastasis". And mentions the bone mets areas but says "no new skeletal metastasis identified".
0 -
I'm wondering about surgery for anyone who was diagnosed de novo. My first scan & mammo after starting treatment showed my primary tumor was “almost completely resolved". I spoke to the radiologist (who did my original biopsies too) on the phone the day of the mammo. she asked me what my surgical plan was. I told her I didn't have one since I was stage 4, and she said that I should still ask. I also have one node that is abnormal but two others that were suspicious are now normal. Is there a reason to push for surgery?
0 -
Rosie, i had lumpectomy before bone mets was found, but the margin was not clean. Initial plan was to do another surgery to clean the margin & then chemo & radiation. With stage 4 diagnosis, i went straight to Ibrance. I had good scan after 4 months & discussed re-excision with MO, but she said it's not neccessary. I'm interested to hear what your MO will say since your lump is now not detectable by scan.
0 -
Hello everyone! I don't post much, but reading everyday.
Congrats to those with good scans & praying for those with not too good scans & those who have to change treatment!!
Hugs!!
0 -
42young, I will bring it up next week at my visit with my NP. MO originally said no surgery to start because it's not been found to be beneficial and she was more focused on quality of life. I only see the actual MO every other visit now so nurse practitioner may not be very enlightening but she did spend lots of time answering and explaining things last time. ( I was wondering if radiologist had some knowledge from other oncologists she works with that would be worth pursuing. I’m kind of glad to hear you had a similar response from your doctor.
0 -
I had my tumor removed during the surgical biopsy - we had discussed it beforehand, and the surgeon asked if I wanted it taken out. He told me he would take it, and "a few nodes" until he could see clear margins. While the incision was open, he'd send it down to pathology, where they could determine right away if it was cancer. So I told him to take out "anything that looks bad"! He took the tumor and three nodes, it obviously turned out to be cancer, and he got clear margins all around. I know they don't do that if they know it's Stage 4, but I'm really glad I did. The tumor on my spine was in a precarious position - they couldn't remove it and they couldn't radiate it. Luckily, it's now undetectable...
0 -
Rosie, my MO mentioned that i will need to be off Ibrance for at least a month in order to do any surgery. She thinks it's best to stay on treatment that is working instead of putting your body through stress of unneccesary surgery that may not be benificial.
0 -
Hi All,
Ciaci...yaay big time for you!
Jaycee...you are never annoying, just precise and I for one appreciate that.
Gumdoctor sounds like things are hard for you just now...one foot in front of the other and we are here if you need us.
Joyner, great to hear from you!
Candy...I get you ..stable scans are all good but TMs are a thing. We do not do these here, I’m with Patmc too much stress already!
To everyone in here, especially our newbies... this is terrifying, but I personally find this thread reassuring and hopeful, despite our diagnosis....and don’t do Dr Google!
0
