Ibrance (Palbociclib)
Comments
-
Sandi, 42 young and tanya thanks for the replies. I was doing salt water rinses for the canker sore but it started making the rest of my mouth raw. Then I went to the biotene which normally works for any Ibrance sores Ive gotten..but those usually appear on the roof of my mouth. This is your typical inside of cheek lip canker sore I don't think the biotene is doing anything to it. I think my MO is kind of not responding as well as usual since she knows I am moving and seeing a new MO but I will email her again and ask about the valtrex but I thought that stuff only works when you take it at the tingle (start) I am over 5 days or 6 in on this thing.
Sandi thanks for reminding me about 75 mg working for many on here. I also didn't think about that everyones body metabolizes Ibrance differently.
(((((hugs)))) and thanks to you all for taking the time to respond to me.
0 -
Janky, here's the best information on Hereditary Breast Cancer:
https://www.facingourrisk.org/understanding-brca-a...
Love from PatGMc
0 -
Cure-ious, thanks for replying. I have met with a radiation oncologist but because I have already had radiation to those areas, plus my films from 20 years ago were destroyed in flooding at the place they were stored, and the radiation onc said she would really have needed the info from my old records,( I had saved written records but that is not sufficient apparently. I never did have the films), they really want to hold off as long as possible on re-irradiating, or avoid it all together The radiation onc said that any radiation would be for pain and palliative purposes only, that the goal would not be too shrink the tumors although that they might shrink slightly with radiation, and the side effects alone might cause me unacceptable levels of pain. I have never had any tumor shrinkage since I started with Ibrance/Letrozole, just very slight increase (a mm or two) in size of tumors in two sub-pectoral lymph nodes, which they are classifying as "stable", and the one new lymph node showing up in the medial mammary chain.
I called the cancer center pharmacist and he said it is OK to take Letrozole and Ibrance separately at different times of day, they don't have to be taken together at the same time.
I have been on 75 mg for months. My system simply will not tolerate stronger doses. Already I have had to take an extra week off most cycles, and this last one I was off Ibrance for a total of 3 weeks. The Letrozole is still doing its work. The doc said it was more important to give the bone marrow a chance to recover, so more important to get the count up to 1.0. My next step, if I stay on the Ibrance may even be a 2 week on Ibrance, 2 week on Letrozole schedule. Some people's bodies are just more sensitive
0 -
Amica, true, if you say it hurts, they will radiate the area with SBRT, and with curative intent, ie, those particular drug-resistant mets will NOT be returning.. Obviously there is no point if there are lots of areas of resistance
0 -
Thank you Moomala!!
Nancy
0 -
Thank you Moomala!!
Knitma5
0 -
Nicole, try not to worry. I’ve been on 75mg after very quickly dropping from 125 to 100 early on... my bloods just couldn’t take it. I also need 2 weeks off to recover instead of 1,even on 75mg. But this regime is working for me, I’m NED and have been for 8 months now. We are all different as the others say.
0 -
You are so amazingly informed - I appreciate all the feedback from you!
amica - you still take longer breaks on the 75 mg of Ibrance and doing well? How often do you have scans? Till end of December I am every 3 months, and if still stable, my MO is suggesting less scans...
0 -
NicoleRod..I have been on 75 mg for 2 /2 yrs. twenty-one days on and 14 days off. Last cycle of 21 days just easy. This cycle barely one week in and I am wiped...can hardly put one foot in front of the other. As Pat says that is why it's called the Ibrance dance
0 -
Airlinegal, the lovely thing about the Ibrance Dance is not having to even lift one foot off the sofa, much less put it in front of the other! Be good to yourself. My last cycle and the week off have been particularly unpleasant so I'm looking for better days ahead. I'm pretty sure it's going to take some Peanut M&Ms to get me back on track!
Love from PatGMc
0 -
Amica when I was diagnosed my MO was super positive about how strongly ER+ I am and told me the PR- didn't matter. But a whole lot of folks couldn't hide their reactions that the negative PR status was bad news. My DH scoured the earth (actually the Internet:) and found some data showing that the negative PR only seemed to lead to poorer outcomes when tamoxifen is the treatment — which for a very long time it was just about the only game in town. . It might be worth bringing that question up with with your MO?
Nicole I was switched to 75 a few months ago. So far so good. :-)
0 -
Thanks so much Karen, airline and Penny. I definitely feel much better !!
Penny...I was ER+ and PR+ and then after my BMX (when they then found I was stage 4) they did the pathology and it said I was ER+ and PR- or ER+ and PR was like 1% something very low so it was basically PR-. I am glad to read what you wrote. I didn't even know that being PR- was bad like Arnica had mentioned?
0 -
Nicole, I hadn’t seen where Amica said that, but I did want her to know that some data showed that being PR- is a strike against tamoxifen since that was a treatment option her MO was considering
Otherwise, my understanding is that PR- is NOT a negative for those with MBC. :-)
0 -
Cure-ious, I was excited when I first heard about SBRT but it was emphatically ruled out for me because its concentrated doses carried too high a risk of toxicity to previously radiated areas.
Penny-78 I didn't know that about PR- and tamoxifen! I am so glad you brought that to my attention! I will be sure to mention it to my oncologist. If the next scan shows things are stable I can continue with the Ibrance/Letrozole. If there has been further progression, medication will be changed. At my center they don't even mention all the many options for second-line treatment that are mentioned in the literature and on-line; so now I just try not to read about it since it's not available to me, it seems to be mostly in clinical trials or in the U.S. The Ontario government controls or prevents access to many of the more expensive newer options.
Also it bothers me that I've never had any kind of detailed genomic profile created of my tumor. They had one program available for that here in Ontario but for some reason none of the hospitals available to me are offering it. I told my onc that I would be willing to pay for my own genetic testing, but she said that we don't need that information right now, that it wouldn't actually be used in her treatment decisions. That's why it's better I keep away from the literature because so much of it mentions the importance of and interaction of different genomic profiles and treatment.
Janky I have CT-scans every three months, my last nuclear bone scan was moved up to three months because of the recent progression, but it had been on a slower schedule, like about 5 months-6 months.
wishing you all well,
Amica
0 -
Hello ladies. I just finished second week of 1 cycle of ribociclib. I am taking it with faslodex and zometa. Doing ok, I managed doing sports and all my activities as well. My neutrophils had dropped to 1.4 but MO said it is still ok to take full dose for the last week. Since yesterday I feel like sinus infection, runny nose and sinus headache but no fever. Did anyone experienced it? I will not see my MO for a week. I also plan to add COC protocol. Had consult with London clinic. So far I am on metformin, I should add doxycyclin and statin. Is anyone doing it together with ribociclib? Thanks. Maki
0 -
Hi, Maaki,
I am on palbo (Ibrance) with faslodex. I am at cycle 2, week 2 right now. When I started this cycle, I developed more of a runny nose and one side of my sinus is blocked a bit in the mornings. No sinus headache but a little bit of blood from that side. It's uncomfortable and a bit of a nuisance, but my only side effect at this time.
I'm also thinking about the COC protocol. I will be interested to see if you start and what your results are.
0 -
I am sorry I have posted to wrong group will put it to ribociclib forum
0 -
Maaki,
No problem! I frequently look at both because the drugs are related.
Also, your country/city are lovely. My daughter worked for a year in Vienna for the UN, and we traveled to Bratislava because it is so close. Lovely city.
0 -
BevJen thank you for the response. Actually I was supposed to start palbo, but I think ribo is cheaper, so insurance agreed to this treatment. I hope it CDK 4-6 inhibitors works for us for long time with few SE. Yes, Bratislava is nice nowadays and soo close to Wienna, where I get my complemetary treatments. From COC I am doing only metformin which is ok, but I dont know if it works since my vertebral met grow while taking it. I am little cautious to add vermox and statin and doxy. I will post the updates
0 -
Pat, Peanut M&M's ??? SandiBeach recently informed of a new flavor, COFFEE. You can get a whole (small) bag of coffee flavored Peanut M&M's. Fix anything.
0 -
My wife had been on 75mg palbo for nearly all of the two years she has been on it. It has worked well for her liver mets. She could not handle any higher dosage.
0 -
Jaycee, I should check out those coffee-flavored M&Ms. I haven't had coffee in years because the caffeine jacked me up but, hey, maybe that's the cure for this fatigue!
Love from PatGMc
0 -
Jaycee and PatGMc: You two crack me up.
I just saw a new flavor..wait for it..Halapeno peanut MMs.
0 -
SandiBeach....oh yes, let's cut those peppers loose on some mouth sores!
PatGMc
0 -
Neutrophils on day 14 of first cycle of Ibrance are down to .73 from 2.52. I win another lab draw on day 22.
I read here all the time but don't say much. I hope I don't appear uncaring regarding others on this thread. I hope to contribute more in the future but right now I'm just trying to keep up all the changes this recent development brings.
0 -
dutchiris - Sorry you're here. After my wife's first cycle of Ibrance, her neutrophils were at 0.32. Her MO took her from 125mg to 100mg and her neutrophils were much better at 1.3 after her second cycle. We're both curious to see what cycle 3 will yield and are hoping to establish a little predictable routine. I hope you'll eventually find one too, and changing the dose of Ibrance can have a huge impact. Good luck with the dance.
0 -
dutchiris and BLMike - My neutrophils are still consistently low after each cycle, I am now on 100 mg and still have to wait 2 weeks to get back to 1.0. Last draw on day 28 they were .6 so I go again Tuesday and hoping they will be 1.0!! We all react differently and even though my Ibrance cycles have lots of time off in between, sometimes 3 weeks off, I have been stable since November 2017. After my next scans at the end of September, if I still have to wait 2 weeks after the 21 days of Ibrance I am thinking my MO may suggest 75 mg and there are many who are stable on that dose as well!
Amica - I don't think the Canadian health care systems focus as much on the genomic and other types of testing, or so it seems to me. I hope your next scans show stable and remain that way for a long, long time!
Stay well and happy Laour Day long weekend!
0 -
Oh my gosh, coffee and Jalapeño M&M's !?
My friends asked if my thoughts about these M&M's were due to SE of chemo and not something that I actually read !🤪
Of course I told them, no, the ideas came from my invisible friends ! 😁
You made my day ! Thank you 😘
0 -
Jaycee49- I have read ( listened on Audible) to 8 chapters of “ the unwinding of the miracle”. You are right! So far an amazing book- thank you for finding it. I was a little hesitant thinking it would be a bummer- but, I feel like it will be affirming and useful re my children.
0 -
Amica;
I live in Ontario and attend the Ottawa General hospital. I was declined genetic testing after my first diagnosis as I was missing my fathers family information. I believe my grandmother died of ovarian cancer but this was many, many years ago and no proof is available. In any case, I was diagnosed with B.C. originally in 2004 and ovarian in 2015. In Ontario this automatically offers you genetic testing. You also could get it with a family history...ie mother etc. with B.C. or ovarian. I was found to have a VUS in BRCA1 and my samples (taken by blood draw) were sent to the US for further testing. In Ontario there is also a program for genetic testing called the Octane program. My MO is the head of this for the General Hospital and sent a piece of my tumour for testing. Your tumour is tested against all available treatments as I understand it (google their website) and as new treatment become available any that are pertinent to you are flagged to your doctor. You should ask your MO about becoming part of this program. MBC should qualify. I am very pleased with the cancer treatments I have received in Canada and no expense has been spared in my treatment. Herceptin was very expensive back in 2005 when I was taking it, even more than Ibrance is today. If I can be of any assistance being in Canada I am available.
Love to all,
Cathy
0
