Ibrance (Palbociclib)
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Z you are a enclopedia...thanks for all your research. Hope everyone has a peaceful and blessed holiday. No worries just joy.0
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Anyone know what is the longest anyone has stayed on Ibrance & Letrozole including being on a trial? Chico xx
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When I started Ibrance+Faslodex in August 2015, my UCLA onc told me she had patients at that time who had been on Ibrance (probably w/Letrozole, as the Faslodex combo was just getting approval) for 6+ year. Assuming they're still on it (I've never asked), that would be 7+ years.
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god, that would be fantastic.....
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I agree Artist!!!
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Looks like I'm going to have to leave you lovely ladies as I'm going to be put on Xeloda next week. The Ibrance/Faslodex combo failed me as my CT/bone scans showed significant progression. Wish me luck!!
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Proparent - rats. Xeloda has knocked the socks out of many mets. Best of luck on your new protocol.
>Z<
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Wishing you all the best on Xeloda, Proparent!
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SusanR, welcome to the thread. You win a prize for reading through the whole thing! MJH, it's so hard when it's not clear what is going on. I hope you can distract yourself with holiday things or whatever you enjoy while waiting for your scan. Lynnwood and Faith, thanks for sharing your good news! Artist, no! Are they pretty sure it is a bone met, then? It just needs to go away! Welcome, Grace. Proparent, I hope Xeloda treats you well and stomps on the cancer.
My recent round of scans looked fine. I have decided to believe that the bouncy TMs and slightly higher SUV in one area are because of healing and dead tumor clean-out in my liver. My onc said 2.0 vs. 2.5 for the one spot is within the margin of error for a CT scan. It has been essentially the same for months. Bottom line is that I am on my 22nd cycle and still doing very well! In a strange way I feel I have reached a milestone by passing the median 20.2 months of PFS in the Paloma 1 trial. I hope this encourages the newbies!
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Shetland, that is encouraging to me! I'm glad to hear you are bouncing along! Yes, it is a met on my L2 but looks necrotic, like the Ibrance took care of it. No SUV uptake there. Plus my liver looks a little better. So I'll take that! Best wishes Proparent. Xeloda has done wonders for many and I hope the same for you.
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Artist, I've been thinking of you and checking to see if you got results. Well - that's fantastic news! I'm so veryhappy to hear that!! Relax, relax now and have a wonderful Holiday season!
Best wishes to all!
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Artist, Shetland - So glad you guys have good news coming into the holidays. I hope that folks read your post and see that jumpy TM's and even small changes in scan do not necessarily mean that cancer is advancing. It's hard to watch people torture themselves over these flaky diagnostics. Especially over the holidays.
Shetland - I am going to repeat the words of your fabulous oncologist for those who are flipping out about a small change in a CT scan: My onc said 2.0 vs. 2.5 for the one spot is within the margin of error for a CT scan.
It's an emotional time of year and not the time to add medical stress. My original diagnosis was a case study in how bad things can go. I am about a week from one year anniversary of my diagnosis and I've been thinking about where I was a year ago. I had a positive mammogram and ultrasound on December 20, 2015, 3 days before I was supposed to leave for Peru for the holidays. Peru is a place I have wanted to go all my life. It was xmas. And I google my new diagnosis and read that I have a 50/50 chance of living 3 years. We went to Peru, but I cried half the time. OMG.
My one year anniversary is in a couple weeks. I've been trying to schedule a scan for 6 weeks. The way things are going I'll probably get the results on December 24th. However, I've been doing well. One of my TM's are up, but I don't think it means anything. Expecting good scans, but we'll see.
Wishing everyone a cancer free holiday. We can choose to take a break from all this.
>Z<
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in 2009 I was diagnosed with stage IIB it was grade 3 I had the ACT chemo and the double mastectomy with reconstruction and Four years of the pills tamoxifin and a couple of others I had every side effect there was and my physician felt I was okay to come off treatment. By Dec of 2015 I had started hurting in my ribs and legs after the testing was done the pET scan showed the cancer was in nearly every bone in my body. The subsequenced test showed it was the same type of breast cancer I had in 2009.
The intended came in the ups last week and I was told to start taking it tomorrow. I think I'm going to start it at bedtime tomorrow see if that is easier. Wish me luck and prayers!
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Welcome Grace and good luck with Ibrance. Ibrance can kick bone mets to the curb, but sometimes with extensive bone mets they use Xgeva with ibrance or they do chemo first. It's always good to push your doctor on the thinking process behind their treatment choice. BestBird has a Metastatic Breast Cancer Guide you should curl up with over the holidays.
If you would update your diagnostic and treatment history, it gives us context for our responses and raises the level of the discourse. So many variables with MBC.
>Z<
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Zar i was reading up, yep what a year. Focusing on positive thoughts for you. Dani should be having Pet/CT around the same time.
Grace4me best wishes your way.
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Hi I am on my third cycle and mostly suffering with pain some from bone mets some from arthritis. My bloods are low but still on 125mg Ibrance and hoping that my scans in January show that it is working. I am on a trial so not allowed to do much with complementary or alternative therapies however is anybody having Botox, fillers etc. Obviously with the last bit of oestrogen being sucked out of us and possible hair thinning etc I feel I want to fight back just a little bit whilst hoping the drugs are keeping us going. Frivolous I know but what the heck. Wishing you all well and hope you are managing to have some fun on this ghastly journey. Chico xx
L
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chico. Nothing that improves your self image or outlook is frivolous. It's important. PM me for some shampoo and conditioner that makes the hair you have thicker.
Z
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Z, can you post or pm me about the shampoo & conditioner too? My hair used to be so thick that I could barely run a brush through it, now it's getting so thin in places. thanks! cheers, dee
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Z,
My hair is falling out a lot even though I am taking 5000 mcg of biotin a day so I too am interested in what shampoo and conditioner you are using. Thanks ever so much.0 -
Z, I am interested also.
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Z!! Me too! At this point my husband has more hair than I do, keep cutting it shorter and shorter, plus my eyebrows are also fading fast!!
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OMG. This stuff is expensive and I know we're all tapped out, but here it is by popular demand ...
Monat has several products that thicken your hair. The Monat Volume and Magnify lines are marketed to specifically increase volume. You don't need all three products. If I had to buy one thing, I'd buy the conditioner. If I could buy two, I would buy the shampoo and conditioner. If you poke around on the site you can find the products individually. Not sure what the mousse or the root lifter is for.
Monat has a different line that they say will grow back hair, and they seem to have some data to support this claim, but I haven't tried it. I am skeptical, but i think they all increase volume so it might be worth a try.
I started using the shampoo and conditioner because I was afraid my hair would thin. I didn't lose hair but boy do I have super duper thick hair after using this stuff. I have had to stop using the Monat products all the time. I now use it only once a week or my kids friends tell me my hair is poofy. I can't imagine what comments I would get if I used the "root lifter"
Although the stuff is expensive, I don't have to use it much to get the effect.
Worth a try. Looking good is mentally very important ... Hope you all look fabulous for the holidays .
>Z<
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Hi Ibrance sisters!! Just checking in! Currently on cycle 18...and NEAD since March 28, 2016. I switched from femara after about 5 months, then to exemestane which was way worse and have been on Anastrozole since February. I have been doing pretty well. Joint pain has been killer but tolerable, gained 24 lbs thanks to the monthly Zoladex shot. Next scan is in March! Hoping to make it one full year NEAD!!
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Yay mdillard. Yes, the joint pain is terrible. I am right behind you, finishing up cycle 11.
>Z<
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Great news Mdillard! And I also agree on the joint pain! Also have fatigue but NEAD since June
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Hi everyone. Congratulations to the NEADs among us! Way to go!
I just had my first scan since switching to Ibrance/Faslodex in August. The two new growths next to my primary tumor, in my right breast, are no longer visible on an ultrasound. The primary tumor has shrunk. (This is according to the technician. I will be talking to my M.O. about the results later this week.)
I also, coincidentally, got my teeth cleaned last week. Because I had been so afraid of mouth sores and OMJ, I had been religiously flossing every day at work, so 5x a week, and I had NO bleeding around my gums. I thought that bleeding gums were just part of teeth cleaning. Who knew, it was just that I had poor dental hygiene before?!?
I guess you never really stop learning. Unless someone takes away all your challenges and struggles, and then, why learn anything new? So thank you, challenges and struggles, for keeping me on the path of spiritual and intellectual growth.
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hi all!
congrats to all the NEAD's here!! I'm only on cycle 6, having scans again on the 20th. Last ones were stable, happy with stable for now, but would love to join all of you in NEAD.
My joint pain has dissipated greatly since changing from arimidex to Femera, but I am on the name brand, so I don't know if that would make a difference. My MO specified Femera because of my issues with all the other generics.
cheers, dee
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May NED go on indefinitely for you all. That goofy hair line made me laugh Z! I have pretty thick hair too and it seems the thinning stopped after awhile on this drug.
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Hi All,
Reporting after a while again. My wife's last set of scan results (CT and Bone) taken in October showed signs of stable / healing disease. Her blood work is normal too (CBC + Metabolic panel) including liver functions and Alkaline Phosphate (which by the way is steadily falling ad well within normal range now).
However, at the same time her CA 27.29 has been creeping up slowly. It went from 151 in September to 165 in October to 175 in November and 200 in December. When she was diagnosed back in late February, the number was 995 and then gradually declining until the recent rise. She has no pain anywhere (was in severe pain when diagnosed) for a long time now and no issues overall (feeling fine).
Her Onc @ Stanford discounted the 27.29 numbers telling since every other result and physical symptoms are fine, and said we should not worry about it.
Can you please suggest what you think ? Very worried here.
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Hello LMWL,
There was a recent discussion here(a week ago) about tumor markers. You can look back and see the posts. The overall feeling is that they are not always very reliable, and that they make us worry a lot. I think that if my MO said to me , "no worries here", I would go with it. That being said, this confounding disease can put us into an awful state of fretting, no matter what anyone says.... I have moments of intense emotion when I think of my 7 yr old grandson my husband and I are raising, and "how is he going to deal with losing his mom/granny?" But then, I get into a space in my head that screams, "you are here now and all is OK today, so live it up!". can be such a roller coaster.... Love and hugs MJ
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