Ibrance (Palbociclib)
Comments
-
Great message; we can't give up on a cure! I was on Ibrance 125 mg and Letrozole for 16 months with Stage IV Breast Cancer and my PET Scans kept getting better and finally showed no sign of cancer till July 2017 when an original spot in my bone reappeared along with 2 small spots in the bone. My oncologist offered me a LSZ102 trial and I just started it. Keep the faith
0 -
On a positive note I took 2nd place out of 14 entries in a local King Arthur muffin contest this week . Hadn't baked in so long so was a pleasant surprise.
Off to cancer center this morning for my shot. Might as well ask for some hydration and nausea Med's while I'm there.
Hope everyone has a great day
0 -
Just stopping in to check on everyone. Sending gentle hugs to all. Im still off ibrance for maybe a month more hoping jaw sores heal up.
0 -
Hi All,
It's looking lessand less likely that I will l be able to continue on Ibrance. We've hit the pause button on day 12 of my fourth round (after a month off due to an infection). It seems it is too toxic for my system. While my neutrophils recover each round now that I am on 100 mg, my RBC has been steadily declining and my hemoglobin with it. After that long break, my hemoglobin barely went up and dropped even lower once I started again.
I'll know for sure when I see my oncologist on September 6th. He's also ordered a bone scan as an earlier CT showed possible bone progression. However, it's very disappointing given the good results that I read about on this thread. If I do get pulled however, my hope is it will put me in a good position for abemaciclib down the road.
Stay tuned. I hope you all have an SE free weekend!
Pat2
0 -
Cure-ious - Thank you for the clarification on the City of Hope Trial. I was confused by the criteria and now I see why. Yes, I agree that is a setup for failure. So many trials are setup that way. I do understand the logic behind it but .... they are setup to fail. Also I see why many people might not be referred to the trial ... pretty narrow group. I would not get in myself. I guess I'll just load up on bifdo bacterium. Not all probiotics have them but not hard to find in the probiotic section. I make bulgarian yogurt from bifdo bacterium yogurt starter kits. Tasty stuff loaded with live cancer fighting bacteria. The bacteria don't directly fight cancer, but they produce chemicals which interact with your immune system in your gut ... somehow the parts of your immune system that fight cancer need these bacteria to do what they do. Dag nabit .. help me out here Cure-ious. The immune system is just so hard to grasp.
>Z<
0 -
Happy Saturday....
Wow...I am so impressed with our "artists" on this site!!! Pat, I loved your work and the others, as well. Thanks for sharing.
Marian....I have always desired to make a quilt. I have several that my grandma made and gave to me and I cherish every one. None of hers ever saw a sewing machine...all totally handmade.
Dianarose...Congrats! I've never liked to "bake", but I sure admire those who do. My daughter loves to bake and makes awesome cakes...just for fun, though!
Off to the grocery...fun, fun...NOT!
Hope
0 -
Faith I didn't know that Ibrance has SE of SOB. I'll tell my PCP about that. Thanks
I had A/red devil 25 years ago, too. But it did not damage my heart function. I remember having the ejection fraction test done prior to starting CAF. I don't remember the numbers. I guess I'll find out next week what they are now.
Z YOU are a trailblazer! Whether on a bike or on the computer! Japan? World traveler, you go girl.
0 -
Pat, my wonderful and amazing Physio has kept me going for years but this one has him stumped so we are hoping that the radiation blasts will help and then continue with Physio.
Pat2 where in BC are you? We moved to Victoria from Vancouver 2 months ago and my team up to now have been in Vancouver but all the upcoming tests and rads will be in Victoria and my MO is calling next week to discuss moving me over totally.
Diana, 2nd in a muffin contest with how you feel and and what you are going through is outstanding and I bet your family are often the beneficiaries.
0 -
Hi Marian,
I'm also in Victoria. I've lived here for almost 21 years. The Victoria Cancer Centre has some excellent physicians and staff so you will be in good hands. I routinely post that my MO is the best - he just is. I've been very fortunate.
All this to say that, while a change in care can be daunting, I'm sure you will be happy
Cheers. Pat2
0 -
Pat2, I expect the change to be fine and in fact my MO of 5 years just went on sabbatical so her repayment for 6 months was new to me just at start of diagnosing early August. I like her but I know I will like a new one here too. Head of rads Van is amazing and he wa the one who did core biopsy and broke the news andsaid the 6 centres work as a team so feel good about it all. But would you suggest I ask for your MO or anyone else you know of? Where in Victoria are you
0 -
Hi Marion. I'll PM you
0 -
Wow, can't keep up with you all!
Dianarose, congratulations on your muffin win. It means more than the general public could ever know. I am lucky if I get the muffins out of the box to turn out right at this point!
Next week is my week off. I never know if it will be a good or a bad week. My DH, DD, and DGD all have been very sick. So far I have kept away from it and I don't know how since the condo is not that large. Maybe it is the new kitchen without all of the old germs. It is also easier to clean...
0 -
I could use a muffin ...
>Z<
0 -
Hi, I have been pulled from Ibrance and was offered a LSZ102 trial which I started on Aug. 17, 2017. You may be eligible for a trial if you are interested. I hope all goes well for you
0 -
For those who suffer with occasional Shingle episodes while on Ibrance and Letrozole, my MO approved for me to receive the live virus Shingles vaccine. My total white cell counts had to be at their highest, especially the lymphocytes (wbc count on day 3 of Ibrance was acceptable at 2.75, neuts 1.0, lymphs 1.3). I also took the pneumonia vaccine at same time, different arm.Site of Shingles vaccine became red and swollen and continued to look increasingly inflamed up to 6" area by day 4 of vaccine. Took claritin and now much better. (Hope this vaccine indirectly helps my fever blisters, too..)
0 -
I take my meds with a muffin every day. Keeps the nausea away.
0 -
SandiBeach, Thank you for the info on shingles vaccine. It is now on my list of questions for my MO. Getting my WBC high enough could be a challenge. It was 1.69 last week, but maybe I can have the shotduring an extended break.
Lynne
0 -
Sandi, are there more than one shingles vaccine? I had mine a couple of years ago but don't know if live or not. I also go the pneumonia then and turns out that was a good thing. I did get a cold sore week before last snd chalk that up to stress while waiting for final tests
0 -
Hello Marianelizabeth. I am only aware of one Shingles vaccine: Zostavax. Shingles is from Herpes Zoster. This virus remains in the body from chicken pox. Stress on my body from treatments has allowed Shingles to appear. Fever Blisters are from Herpes Simplex; although a different virus, stress can also be a trigger. In previous years, there was a theory that this Shingles vaccine could also help oral herpes, but was never proven.
0 -
Thanks Sandi, and glad I have had the vaccine. I do suffer infrequent genital herpes and while doing chemo (A/C part) in 2012 I ended up with insane herpes and was on Acyclovir for many weeks. Hoping not to to repeat but having the Shingles vaccine can only be a positive. For you, may the vaccine prove its worth.
For me just at the beginning, I am not looking for potential S/E but do like knowing as much as I can
0 -
Thanks for the reminder about vaccines. I sent an email to my onc's nurse to get them before I start Ibrance again.
Dianarose, you are our Muffin Queen! Good for you, after all you've been through lately. You can't keep a good survivor down!
I appreciate all the prayers and good wishes for my speech at the Komen Survivor Luncheon. It came off without a hitch! Such a relief! I ended up adding an impromptu song at the end, one I used to do at the laughter workshops. I invited a couple of bald-from-chemo survivors up, yanked off my wig and we sang this Sonny & Cher parody:
"Don't let them say your hair's too gone,
I don't care, your eyebrows are well-drawn,
Babe, I got you, Babe....
You'll have white cells in the Spring,
They'll yank out that Port-a-Cath thing,
And all your scans, they'll be clear;
You'll be shaving your legs
For Christmas next ye-e-ear...
Babe, we got you Babe!"
Thanks again for having my back!
Pat
0 -
The above needs audio. I would love to hear that.
0 -
OMG Pat. You have some guts. That is very funny.
>Z<
0 -
That's awesome Pat. Slightly irreverent. I love it
0 -
PatG, you are one very brave extremely courageous woman. I'm sure you must have had a standing ovation after that. I'd like some audio too. Glad it went off without a problem. Worrying about getting sick at a event like that always makes me so nervous. So happy for you.
0 -
Path - You have made my day! I sang it to Dh, and he loved it!
I bet you brought down the house!
Hugs and prayers
Claudia
0 -
Thanks, ladies, I usually only sing after a little schtick about what a bad singer I am because I AM a really bad singer! (My oldest sister used to beg Mother to make me stop singing when we were kids.) But yesterday I just went for it. The two new friends couldn't sing either so it was especially bad! There is no video, which is really good because they put it on the local news this morning. Whew! We did get a standing ovation which tells you survivors are really desperate for entertainment!
You ladies can appreciate this: Only after I got home and saw these pictures on Facebook did I realize that I forgot to change out of what Mike calls my "sensible shoes" before I left home!
Have a Happy Week, friends! I started the Ibrance Dance again tonight! (Naps in my future.)
0 -
Pat, the standing ovation was for your bravery no matter how you sounded. I am proud to be a part of this group of ladies who are not afraid to stand up and be honest. I believe it makes the world a little less scary, and gives me and others courage to stand up more. All I really want to do is hide in a cave...
0 -
This is from EV11, a research nurse on Inspire with ER+PR? HER2- ILC. I follow her closely because she is knowledgeable herself and being treated by the best of the best.
"My onc is the PI for a number of the abemaciclib trills (mostly for patients with brain/CNS mets) and says that it has been Fast Tracked through the FDA approval process--it should be on the market late 2017 or perhaps early 2018, but she thinks sooner...Not sure what its brand name will be.
"I would seriously consider switching to it when it makes it to the market (and if I haven't had any significant progression on scans before then). It seems t be different enough from the other 2 that I want to try it for it's CDK4 activity--and its less CDK6 activity. The side effects are different--less neutropenia but lots more GI distress (diarrhea, n/v)... The more prominent CDK4 action is what (they think) allows it to be successful as mono therapy and I'm hoping it's different enough in its action that it would trigger a different resistance mechanism- I have no real basis for believing that, I need to do more research....it also has CNS activity--and the other 2 don't-"-EV11
Switching to abemaciclib when it comes out is on my mind....
>Z<
0 -
Hi Z!! That's totally exciting- Abemaciclib has been getting so much positive buzz for such a long time, that you forget that eventually these drugs move out of their hypothetical space into a real drug. I'll probably stay on Ibrance as long as possible, but if I had to switch, then I'd want Abemaciclib in combination with Faslodex or a SERD, plus Atezo for immunotherapy, plus a PI3K inhibitor, wait-where is that trial?
0
