Ibrance (Palbociclib)
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Hi Zarovka,
I've deep respect for acupuncture among many CAM/integrative/holistic approaches to living with MBC (link here for exploration my approach) and other life-limiting physical symptoms. I always seek aid from these healing allies before looking at pharmaceutical or other medical options.
Even if my health supportive practices reduce disease, symptoms and/or treatment unwanted treatment effects by only a small amount, as long as I'm having a good time and can afford the $, time and focus costs, I will engage them!
These days, I prefer low-tech, self-help techniques, because I don't always want to be chasing expert help out there. Gradually, my body has become my preferred expert and I'm able to adapt/adjust to an amazing variety of ever-changing situations.
Why give away my power when I needn't?
Z., one acupuncture option you might enjoy is the use of ear-beads or needles for between visit stimulation of acupuncture points. Not all acupuncturists use it or prescribe it for every situation but it's helped me with ongoing problems that are slow to shift.
warmest healing regards for all, Stephanie
Thank you for letting me join you here, I don't engage Ibrance, yet care for so many of you!
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Has anyone used evening primrose oil for hot flashes? Or do you know if there is any king of drug interaction with Ibrance/ Faslodex? I wanted to see if anyone had any info because I don't see my MO until October 11th.
Thanks!!!
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My oncologist (who prescribed the ibrance) gave me an ordered list of things to try for hot flashes that looked something like
- acupuncture
- evening primrose.
- some kind of prescription drugs (there are at least two).
I started with evening primrose because it was cheaper and did not involve needles, but it did nothing for me.Today was the naturopath visit. She did stuff with mysterious little vials and kinesiology. She held the bottles up to my chest with and without my meds and supplements. While she did this she pressed my arm. She touched my spine sometimes when this was going on. She was "balancing and moderating my meds, reducing growths and facilitating transitions". Way on the flakey end of the treatment spectrum, but I am beyond judging any modality. I have been feeling like c@#p. I will try anything. This has worked for a couple friends. Sign me up.
All I can say is I feel better every day. I did acupuncture and lymphatic drainage yesterday. I had this homeopathic/kinesiology today. Tomorrow I am supposed to go mountain biking with my daughter. I feel like I might actually have the strenght to do it. I was really worried early in the week I would have to tell my daughter no mountain biking. Resting today just in case, but we're going mountain biking...
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Z... who does your lymphatic drainage? How does that work? My holistic doctor just suggested I start breast lymphatic message every other day. Is this the same or different?
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There are a lot of ways to do lymphatic drainage. The practitioner recommended by my oncologist did manual lymphatic drainage on me. She rubbed/pulled my skin to promote movement of the lymph. The lymphatic system is mostly just under the skin, so you can gently rub the skin to stimulate the movement of lymph. There are some patterns to follow and areas to focus on. It's nice to have someone do it to you, but it easy to learn how to do it to yourself.
I had it done twice a week for 10 weeks. (20 sessions). I was supposed to continue weekly but did not.
The first practitioner also did cupping the area of my armpit and breast, which more aggressively moves fluid in and out of the breast, probably more than lymph. That felt important and useful.
More recently I had electro lymphatic therapy done closer to my home. It was getting hard to drive an hour each way to see the first lady. the new practitioner uses this different technique that, supposedly, is more intense and requires fewer visits. With this approach, if it works, I'll need 3-5 visits every 3-6 months. I felt pretty good from the first two visits and I will certainly finish the 3-5 visit cycle this fall.
I would not hesitate to explore this space, but as with all this stuff you have to follow your intuition. All I can say is it feels to me worth pursuing at the moment. There really are a lot of ways to support your healing in the alternative/complementary space. It is important to find a couple that work for you. Not necessary to do them all.
>Z<
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<Z> Thanks for the info on lymphatic drainage and also the CoQ10. I've been taking the CoQ10 for my heart before they even found these mets to the lung and its good to know it might even help a bit with the cancer.
Stephanie, I'm glad you're here with us even if you aren't on the Ibrance, you're one of my heroes and I pray for you often. Besides you've always got something that's another golden nugget of information for us. :-)
I've read about the Paloma 2 and 3 trials and average time to progression but I'm really interested to get some figures on the OS (overall survival time). I'm hoping that if the figures aren't available yet, it means that the OS time is still be extended.
Hugs and healing thoughts to everyone.
Faith (in the future)
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I wonder if we will ever see overall survival. They had more than adequate PFS numbers to support their FDA application. They don't really need more. As a business proposition, they are better off looking at other cancers or circumstances in which to use ibrance than they are geting OS numbers.
>Z<
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Z, I'm sure you're right about the OS numbers from a business stand point. I sure would like to know how long some of those women in the trials have been using Ibrance with success though, wouldn't everyone here
Faith
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Faith- yes! I would too.
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I'm in cycle 15 and have had great response and no active areas showing since I started Ibrance/letrozole. However, my TM's started rising the past few months. No significant change in CT, but the PET showed activity in four areas this time. I also had many areas that remained stable. So my MO has decided to add faslodex while continuing me on Ibrance + letrozole.
I actually had gone into my appt prepared to make the case that if I next went to Faslodex I'd like to continue with the Ibrance since the two have already been trialed together successfully and as others have questioned, "How do we know which drug failed--letrozole or Ibrance or both?" I like the idea of staying on the Ibrance + letrozole since it has obviously kept most of my mets stable. Hoping Fas will work on the unruly ones.
Just passing this on because obviously there is no trial data available. But another interesting approach for second-line treatment.
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More on vitamin D and cancer, this for medical professionals, but easy to read/understand:
Anticancer Effects of Vitamin D
Beatrice J. Edwards, MD, MPH
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Stephanie, interesting article on Vit.D. It actually felt like I was hearing some good news tonight which I needed after reading of another gal on the bone mets thread with progression after being on IBrance since 3/15 and showing NED In June. I thought NED would last longer than a few months.
If I'm reading the article right there's a good possibility that Vit D works with the AI to help fight the breast cancer. Since my vitamin D levels are at 75 right now, I feel like I have some hope of hanging around for awhile. As you well know, this cancer shit really sucks and the meds are playing with my emotions right now so I need any shrewd of hope I can get. I don't know how you've managed to deal with it all these years.
Hugs and healing thoughts to you.
Faith
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With respect to overall survival stats, I recall Pfizer saying they would disclose them but they were not yet "mature". I interpret that to mean not enough people have died yet to reach the median. Could it be that the longer it takes, the better the OS results?
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JFL, I sure hope your right about the OS results. That would be good to hear. I get really discouraged when I hear of someone else failing Ibrance. I guess we just have to believe there will eventually be something even better in the pipeline for us.
Faith (in the future) ....most days :-)
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JFL and Stephanie may remember the thread linked below, where several of us discussed the question of showing overall survival benefit for drugs such as Ibrance. (I will bump it so it will be easier to find.)
"Better PFS but not better OS?" https://community.breastcancer.org/forum/8/topics/...
There appear to be statistical difficulties proving overall survival benefit when survival post progression is long (over twelve months), even though there could actually be improvement. Also, median survival may not tell the whole story, as a subset of patients who are helped a lot may get lost in the numbers.
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Thank you for the info on coQ10, Zarovka and Lynnwood. I may actually try this one, which is saying a lot since so far D3 is the only supplement I have felt comfortable taking. The oncology nutritionist I saw recommended it, too. Does anyone know if we can we have our level checked to see if we are deficient, the way we can have our vitamin D level checked?
Thanks for the great vitamin D article, Stephanie.
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Shetland, thank you for that link to the discussion on PFS vs. OS. There is much food for thought there. I'm going to have to read it again and try to digest it more, before I can comment on it. My brain does get tired thinking about cancer all the time but it's like an addiction and I can't stop. I'm sure I'm getting scanxiety.b/c I'm having a PET scan Oct. 7th.
Good night all, I'm tired.
Faith (in the future )
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Hi All -
I have been follow this thread for months now since I am also on the IBRANCE/LETROZOLE combo. Had my PET scan last week Doctor called me today with results that my cancer is on the move again!! it is in numerous spots of my bones as was before (just in the starting stage..Thank god for PET scans) Cancer is NOT in any organs yet. For a little history of me I was diagnosed with inflammatory breast cancer May 2015 stage 4 Mets to bones.
Doctor had me on texatere last year with XELODA worked GREAT total remission December 2015. Had radiation of breast with XELODA worked good. (still had no signs of bone cancer) Started LETROZOLE alone until May 2016 then added IBRANCE until today
Doctor is starting me on Afinitor / Aromason Monday along with the guardant360 blood testing. My doctor said no time to waste if this drug IBRANCE is not working for me.... :-(
So I wanted to say to all of you stay strong fight the fight and be POSITIVE we are NOT all the same.
I'm so grateful to all of you helping me and guiding me thru this drug with the side effects that you have all shared.
Kimba
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Kimba -I'm sorry to hear about the progression. I'm glad you have found some help on this thread. I hope you get an excellent response on the next treatment! Wishing you well.
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Kimba - good luck on your transition. We are very interested in what happens after ibrance. Let us how the guardian360 testing goes and how it informs your treatment.
>Z<
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Z & Moissy
Thank you.... I will keep you all posted!
kimba
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JFL, I think "not yet mature" doesn't mean outstandingly wonderful results as much as statistically measurable results. The latter are a formula of numbers of patients and lapsed time and other variables.
As we keep pointing out, it's very hard to measure OS in MBC, because the data is confounded by successive treatments. How much of the outcome results are due to the intervention (clinical trial drug or treatment) and how much to subsequent treatments?
I find median numbers for survival times intellectually interesting because half the group had outcomes under that time and the half the group had outcomes over that time. Of course, we all want to end up at the longest end of the survival curve, but numerically, statistically, we all can't.
After 25+ years in the breast cancer world, I prefer to combine doing everything possible for my desired outcome with "don't know mind".
There are mysteries that even science, research, data and statistics just can't quantify.
That makes me very, very happy!
Healing regards, Stephanie
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Moissy, we are like twins. I've been on Ibrance with letrozole about 15-16 months. TMs just starting to rise again. PET scheduled for next month. I too would ask to add faslodex, if it shows any progresssion, even tho I failed on faslodex and exemestane sometime back,( after a good 3 years of NED), so it might be worth a revisit. Will keep you posted when that all comes about. ONC says average time to progression on Ibrance is 18 months. Hoping for longer still.
Stefanie
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Stefajoy and Moissy--almost triplets. I'm on Ibrance + letrozole cycle 18. TMs have been slowly creeping up, with the last two just out of normal range. The last three (!) PET-CTs have shown an area in liver with slightly higher SUV, too subtle to call. So I wait for the next scan. Faslodex would be next. Add it to Ibrance and letrozole, or just go with faslodex? I'd love to hear your oncs' reasoning about this choice. Do you both have bone-only mets?
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Stef and Shetland - I love being part of the triplet team. But I do hope that you both continue to get every last drop out of this treatment and continued good scans! Stef - Wow, thinking back that they almost took you off of it early on! So glad you have had a continued good response!
Shetland - I have extensive bone disease, nodes that resolved, and one small lung met that decreased significantly in size on Ibrance/let. The lung nodule remains stable (no activity/no progression there). So, if Ibrance and letrozole are still holding the lung nodule stable, it's still working there (my thoughts). So the combo approach adding Fas seems reasonable to me to try.
My onc mentioned that he has a lot of Ibrance/let patients and said that he is just adding Faslodex to the mix for those who progress. Obviously no study data available, so I think a lot of this is indeed intuition based on his own overall experience and his interpretation of available data. In other words, flip a coin.
Wishing everyone here good scans next time up!
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Moissy, I can't believe you remembered my Ibrance dilemma early on. Yes, I'm glad I stayed on, thanks to a few woman on this thread who gave me the courage, by example, that TMs didn't always drop right away. I've had a good run so far.
Shetland, minimal bone only for me (knocking on wood). I would really like to keep it that way. TMs also just out of normal range (damn them!) and creeping. Will know more next month.
I might have said this before, but I was three years NED on Faslodex, no SEs. So I'm a big fan
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Hi Stef! Three years NED.... I love hearing this. Were you on ONLY Faslodex? Or something else along with it? I'm only 6 months into this "world" and so all I know is Lupron-Ibrance-Letrozole.
Did you start with bone mets.... then NED.... then bone mets came back?
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eelder, yes. Bone mets out the gate. Did the hard stuff chemo (taxitere and cytoxin) plus surgery and rads got me NED. Faslodex and exemstane kept me there over three years. Almost a year and a half ago, I had some progression (still in bone) so I switched to Ibrance and letrozole (and xgeva) and had cyber knife rads. Been stable with only one singular bone met since then. TMs creeping slowly up the last two months. PET next month to check out if it's anything.
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Oh Stefajoy! I know we don't like the feeling of TM's creeping up, but wow-- what wonderful success you've had so far. Truly. I'm so happy for you. Sounds like you've been able to control this VERY well. And those TM numbers may not reveal a whole lot once the scan is done. Sending you continued good vibes!
And thank you for giving us more hope and optimism in this terrifying fight.
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There was some talk recently about Ibrance and tumor shrinkage. I saw this today on Pfizer's Ibrance website:
Additionally, the Overall Response Rate (ORR), which measures tumor response to treatment, including tumor shrinkage, was assessed in patients whose disease was measurable at the start of therapy.
The results showed that the ORR of patients taking IBRANCE and letrozole was 55% — meaning 55% of patients saw their tumors shrink in size — compared to 39% who took letrozole alone.
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