Ibrance (Palbociclib)
Comments
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Thank you to all for sharing the supplements that you are taking. I am curious how you determined the specific supplements that you taking. There does seem to have a somewhat large range in terms of what each individual is taking. My oncologist have stated a few times that no supplements are recommended as we are unsure of how they may interact with the Ibrance. I have thus far followed her recommendations and as of my last scan I am doing very well and responding beautifully to the Treatment according to onc.I don't want to fix something if not broken but continue to wonder if supplements would help me further. I have tried to locate a ND that specializes in cancer to consult with but finding someone with some real knowledge on this has been a challenge. I have reviewed a number of books and I find different recommendations as well as warning about certain supplements that other books recommend. How do you all come up with your final decisions and does your oncologist agree or do they recommend no supplements like mine does? I am working on mind/body healing through yoga, meditation, Reiki, exercise and healthy eating as much as I can at this time.
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My supplement list comes from my holistic doctor and nutritionist. I then show the supplement list(s) to my oncologist and she approves it. So far everything I've showed her she's approved with the exception of curcumin because she does not feel capsules of curcumin are known to be safe. Obviously many take capsules and they are FINE, but research in her clinic and at UCSF shows our body might not handle it as well as just putting turmeric in our food. I was also told to avoid green tea and flax due to interactions with ibrance.
In addition to supplements I also exercise as much as possible and eat a largely plant-based diet (with some organic chicken and wild salmon). I do have a few glasses of red wine every week - approved and slightly encouraged by my holistic doc, nutritionist, and oncologist. To completely move away from anything and everything that brings me pleasure is simply not going to work. I need to stick with a healthy plan for the long-term and it's a LOT easier to do that with some little indulgences here and there. I indulge in Lily's Chocolate (no sugar) when I get a sugar craving. I try to allow for 10-15 minutes a day to meditate, but I have two young active boys and this summer have found it nearly impossible to find time. When they return to school it will be easier. I also do detox baths 7 days a week during my OFF week from ibrance and feel STRONGLY those help rid my body of toxins. These were prescribed by my holistic doc and approved by my oncologist.
My feeling? Anything extra you can do to enhance treatment is good. Is there ONE protocol that is best? I do not think so. I think anything we can do to make our bodies healthier and stronger is helpful and the way we go about doing that is going to vary from person to person. In the end I think the most valuable thing that comes from these "extra things" is the feeling of control over our situation and I think that in and of itself is HUGELY beneficial.
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I have hesitated to put my supplement list out there for many reasons. I think that lifestyle changes like diet, exercise are probably more important. I also think that a positive outlook, spiritual support, friends and family and the mental aspect that Longtermsurivor was getting at in her last post are all more important. None of these supplements are going to do much without the lifestyle and mental aspects in place.
However, so many women on this thread are in a really good path mentally, spiritually and with respect to lifestyle. Every time I open this thread, I see a breakthrough in QOL (go Artist!). For people moving steadily along a positive mental/lifestyle path, i think some supplementation can help.
Another line of concerns I have is that I think that supplements are medicine and should be taken under medical supervision. Most MD's and oncologists aren't trained in this aspect of medicine. I take supplements under the direction of a very experienced MD who practices complementary oncology. If supplements seem interesting, I think the best thing is to find someone trained in complementary medicine and preferably complementary oncology.
That said, the complementary protocols for cancer do seem to converge towards a treatment program like the one prescribed for me. There is some variation but a lot of overlap. My CO does like very high concentrations of certain supplements. Since this protocol seems to work with Ibrance for me, I thought it would be interesting for this group.
There is no question that these supplements could interact with the palbocicilib, but several oncologists have reviewed the supplementation protocol and haven't had any concerns. People vary of course, but I am doing well on this protocol. For people on Ibrance, my supplementation routine may provide some ideas and some things to research.
It's been long understood that it takes a combination of drugs to corner the cancer and prevent it from evolving around a given treatment protocol. Adding a couple cancer-fighting protocols probably does make sense. The question is which one.
We all know what is best for us and it is going to vary a lot. But we can get ideas, information and inspiration from each others protocols and experience. I put my complementary protocol out there in that spirit.
I hope you are all having a great august. Living well is the best revenge. I took up downhill mountain biking this week and I've found that a good adrenalin/endorphin rush knocks the side effects out of my system and gives me an awesome night sleep. No supplement has been able to do that.
>Z<
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Singlemom- I read your post and I had to recheck it to see if I wrote it. I am famous for thinking "IF it ain't broke-Don't go fixing"it" but I have not been feeling very energetic and I want to improve that. I can't do any better with eating- except maybe eat less of what I should to loose the pounds that will get my BMI to 25. That is a work in progress, "Rome wasn't built in a day"-- I am on the two week on two week off cycle and this past 2 weeks off I was pretty tired. I did not exercise for 10 days, and I still don't if it was a mental pity party where I was on strike because I imagine my numbers bottoming out, or if it was real as I am back to walking this week and feel like a new person. I feel so much better on Ibrance then off of it. Or is it the walking?
This week I decided that I would like to improve my immune system, and did a ton of research along with asking for advice on what others were doing and taking. For one, I need a good multi vitamin, I was only taking Calcium, vitamin D, extra C and mag. The pharmacy department at DF will help you to make sure it's not interfering with my drugs. So I will present the list when I see them in two weeks.
In the interim, I am going to start the multi vitamin, add in a new higher dose of vitamin C- I had conflicting recommendations at Dana Farber with two different MO's opinions on curcumin. I asked, if it was ok to add to my supplements and one said yes, and the other MO said "I tell my patients to add in a pinch and do not take high doses in capsules". In my situation, I say when in doubt leave out. I ordered everything and it all arrives today- I will be taking pics of the ingredients and present the list to the pharmacy. My only concern is I do not want anything to mess with estrogen. Which brings me to a multi vitamin I had purchased back in February that I took. I think it was from Garden of life for women over 40- ( I am vegan and want to do as much natural as I can) and there it was a supplement that helped with hot flashes and after my google search I found it was controversial for women with estrogen positive breast cancer. I never finished the bottle of vitamins and I can't remember why, (this was back in February) I think it was because I was worried that the biotin in it was making my scalp tender.
All my new supplements arrive today!
Hugs,
Carol
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Okay ladies.... hot flashes. I'm 40 and wasn't prepared to start dealing with this stuff so soon, but obviously treatment calls for induced menopause. Any natural tricks/solutions for managing this? I can live with it, of course, but would love to lessen the effects if there's a way.... ideas? Thanks.
I'd also love to echo what Z said about supplements. I don't think supplements do much without diet and exercise. I also believe that a positive/FIGHTING attitude + a supportive network + prayer and spirituality are equal to diet and exercise. Put it all together and I feel we CAN enhance the effectiveness of treatment. So far I've had a good response, but of course worry and fear creep in sometimes as I wait for my next scan coming in October.
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Carol - I don't worry about curcumin effecting the estrogen therapy because of the way letrozol works. Letrozole stops estrogen production by fat cells and other tissue and deprives the cancer of a growth factor. Estrogen levels are measurable. Most of us get our estradiol levels measured periodically. If they remain non-detect then the supplements are not interfering.
Curcumin seems like one of the best tested, most effected anti-cancer agents with the least side effects. None that I know of.
>Z<
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To the list of supplements to consider, I would add a probiotic that contains bifidobacterium, such as Align- in pre-clinical studies, this bacterium is essential for immunotherapy to work, as the mechanism requires that it stimulate the immune cells when they travel through the gut. It works synergistically with anti-PDL1-type checkpoint inhibitors, and even acts on its own similarly to a low-dose of immunotherapy. Companies are gearing up to include it in clinical trial.
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Hi, Everyone. I've been out of the discussion for a week, so I'm going to comment on stuff a few pages back before I continue catching up.
Zarovka, what good news from your scans! I bet the primary will continue to shrink. How nice to have an unremarkable liver. I had a chuckle one time when my onc's first words to me were, "Your scan results are boring." My onc seems to agree with your second opinion onc in Seattle. Next treatment would be faslodex, doesn't favor surgery. When I asked about checking my estrogen levels, she said that blood estrogen levels do not correlate with level of response to the aromatase inhibitors. It is so counterintuitive. She also said that some tumors can make their own estrogen.
Maltese and Zimmerwoman, so glad to hear your good scan news!
Those of you who thought I meant I was making my own frozen dinners to eat during week 3 are so cute.
Regarding trouble with memory, word recall, and vision: I think it is all due to estrogen deprivation. Once I heard a comedian doing a piece on menopause and she had this whole thing about "loss of Nouns." I have a journal article about anti-estrogen bc treatment and vision. I can hunt it up if anyone wants the citation.
Eelder, wow, thanks for the reminder to be grateful for this treatment. I often just feel deprived of normalcy,but yeah, I'm still here.
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Today was my third dose of 2 my week cycle on - I just want to share how much energy I have today. None of this makes any sense to me, as I feel so much better on Ibrance than off. I would love to have a cbc every day of the cycle so I could have answers. Is it the red counts and platelets that have me feeling so horribly on off week, because my red cell count is not in the normal range? Off week your numbers spring back up but I think my numbers continue to plummet well into the second week off so that must be why I am on this protocol. Plus my hair is thinning more again. i hope it's killing all the bad cells too just not my hair cells. Just wanted to share THAT I HAD A GREAT DAY!
Hugs, Carol
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This link will take you to an article on Ibrance and other inhibitors
http://www.targetedonc.com/conference/IBC-2016/cdk...
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Thank you for posting that link, Aurora.
Lynne
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Still catching up. I see that Deanna and Zills have good scan results. Yes!
Cure-ious, I have been thinking about faslodex vs. an anti-estrogen plus mTOR inhibitor for when I need a switch. The Aromasin plus Afinitor combo scares me, so I am hoping one of the newer mTOR drugs will be available soon, or at least in a trial. Then there would be a viable option. So if you have any recommended reading on this issue of what's next after Ibrance, I'm interested. My Foundation One report found a PIK3 mutation, but not the usual one, so I need to learn more about that.
Z, it sounds like you might tend to overdo it. If your body doesn't tell you to rest, then maybe just rest on a schedule. I have found that mind over matter can only take me so far. Frustrating, but better to work with it, I think.
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Eelder - I would love the article on hormonal therapy and loss of vision. Between losing my vision and losing my nouns I am in a pretty sorry state.
Carol - I am so very glad you had a good day. I also try to develop theories based on where I am on the ibrance cycle, and they don't always work out for me either. I've had a pretty good week 2. Starting week three next week. If I can keep up the downhill biking on week 3 then all my theories are out the window.
Auroaya - That is a great summary of first, second and third line options for hormone positive MBC from MSKCC. A very useful link.
Shetland - let's hope we just don't need to switch. So much simpler.
>Z<
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By the way, I should have specified working memory as my memoryproblem area, along with word recall.
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Auro- Thanks for that link.. I printed it out.
Hugs Carol
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Hi Z.... I don't know about any article. Someone else must have mentioned it.
Talked to my holistic doctor today and she said my iodine levels are low so I'll be taking some seaweed liquid drops by Bernard Jensen. I had been feeling more sluggish lately (hadn't until now) and have noticed my weight loss has stalled. Boom! She suggests I have low iodine levels and this isn't good for fighting cancer. So, I'll start the drops as soon as they arrive. It's always something, right?
She also suggested CoQ10 but ONLY during my week off from ibrance which is interesting. Anyone else been told the same thing? She's asking me to take 200mg, 2x/day, but again, only the week off. I wish I understood this stuff better.
She also suggested biotin (10,000mcg at bed) AND/OR Silica drops by Jarrow to help with hair thinning. Worth a try.
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Hi Elder,
This is a terrific resource for finding out more about iodine and breast cancer:
http://www.breastcancerchoices.org/
warm healing wishes for all, Stephanie
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Hi Shelland Pony,
The discussion led me to check up on the newer PI3K inhibitors in trial, and it looks like Taselisib beats Apelisib http://www.datamonitorhealthcare.com/taselisib-sho...
with a great 41% response rate to the drug in a group of patient who had many other treatments- but you need to have some kind of PI3K mutation, the PI3K wild-type cancers don't respond. I don't know if I have a mutant, but if I do I would try to get this drug once the cancer has shown resistance to aromatase inhibitors, because inhibiting the pathway can make the cancer depend on estrogen again. And I agree, it sounds like the AA combo is no fun.
Taselisib is being tested with faslodex in the SANDPIPER clinical trial. I wonder if you can still remain on Ibrance while on the trial, or if another trial has all three..
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Is anyone else Her2+ and on Ibrance? I will be starting next week and hoping to find someone else with treatment similar to mine. Currently I am on Aromasin, Kadcyla and Xgeva.
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Here is the article I mentioned. "Breast Cancer Medications and Vision: Effects of Treatments for Early-stage Disease" 2011
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC320582...
"Although all side effects are manifestations of chemical toxicities, some side effects -- most notably those resulting from the virtual abolition of estrogen synthesis caused by inhibition of the enzyme aromatase -- might be viewed also as consequences of accelerated aging."
"...potential to increase the risk or severity of several age-related eye diseases or conditions, including glaucoma and macular degeneration."
So I don't advocate worrying about it, but we should get our regular eye check-ups. [I didn't type the footnotes.]
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Cure-ious, thanks for the link. Sandpiper sounds like a trial I would want to try as my next treatment, if taselisib is less toxic than afinitor/everolimus, since my onc already says we would switch to faslodex. I read that in the Sandpiper trial PIK3CA is the target, but then the article also mentions just "mutations in the P13K pathway." The mutation on my Foundation One report is PIK3C2B, and is a variant of unknown significance. So I am not sure if that is a target or not. And why do the K and the 3 keep switching places? Can you explain mutation vs. wild-type? If I had known I would get bc, I would have taken both genetics and statistics in college.
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Eelder, the oncology nutritionist's (MS, CNS) recommendations for me included "consider adding...Ubiquinol--one capsule daily for easily absorbed Coenzyme Q10" but I have not had a chance to research it or to run it by my onc. So your holistic doctor didn't tell you why she was recommending CoQ10 only for your week off Ibrance?
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Shetland,
Ha! You're right about that- maybe better to be a molecular geneticist-biochemist! Well, interpreting your mutant PI3K status is what we pay the experts for, truly only by applying for the trial and having them can figure out if you are eligible. PI3K kinase activity requires three subunits, alpha, beta, and gamma- many breast cancers have alpha mutations or amplification that increase the activity of the kinase, whereas yours is a beta (B) subunit mutation or amplification, which seem to be more common in colon cancers. There are many PI3K inhibitors in development, some are pan-class I inhibitors that block all three subunits, whereas others like Taselisib are specific for certain subunits (in this case, alpha). Hopefully you go along for awhile on current tx, so these drugs can be sorted out further.. And, if you have progression, you might want to be tested again because your PI3K status which could have changed, as you might have acquired a mutation or amplification of the PI3K alpha subunit? The trial people check all of that..
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I second that emotion! Forever grateful....
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I'm still reading to catch up so I'm posting like mad.
Artist, I know what you mean about being embarrassed by being unable to think of the word you need when talking with someone. I decided to try and treat myself with the patience I would give someone else, instead of banging my head. So I say something like, "Ah, the word recall problem. Drug side effect. I'll think of it later. Anyway..."
Here is another book for our reading list: Integrative Oncology by Donald Abrams and Andrew Weil. It is kind of like a textbook, with chapters on various topics and lots of studies and citations, but it is not a difficult read. It lends itself well to browsing or looking at whatever topic you are currently thinking about.
I guess I am one of the lucky ones whose onc explicitly includes quality of life in her approach. "We want to give you the best quantity with the best quality," she said.
Zarovka, I don't think you have to look at yourself as sick in order to sort of justify resting. In fact, your scans show that the cancer is retreating. It's the drugs that make you tired. So resting is just an adaptation, the way you adjust your diet to feel as well as possible. It's working smarter.
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Oh my gosh, Cure-ious, I just learned more from you in one minute than I could get out of the genetics guy at my cancer center in an hour. Your solution is also brilliant--simply apply for the trial and let them figure it out. Yes, if I keep going long enough on my current drugs, there may be better drug match that comes along. Maybe I should watch the colon cancer drugs. That is a very interesting comment you made, because Foundation One also showed an MSH6 mutation, rare as a somatic mutation and more likely to be germline, that can be associated with colon cancer. My genetic testing for that germline mutation is pending. I know from reading some of the ILC papers that certain mutations tend to occur in clusters; for example, CDH1 with TBX3. I wonder if MSH6 tends to occur with PIK3C2B mutations. (Or maybe nothing I just said makes any sense at all. I was too busy taking foreign language classes.)
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Shetland.... I remember her saying "take the CoQ10 during the week off only" and of course I didn't ask why. Ugh! I talk to her monthly so I plan to ask her then. Though I know a few on this board take it daily and they are having great responses, so it's probably fine.
Thank you longterm for the resource on iodine and breast cancer. My levels have been fine up until now and my holistic doctor has advised me to take seaweed drops. It's funny because I've started feeling fatigue this 3rd week of my 4th cycle. She's usually right on the mark with me without me telling her anything about how I'm feeling.
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Shetland, At least I notice that most of my friends also have those also have those brief brain lapses and aren't taking these meds so.......
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Shetland,
I forgot to mention, there is a much-much improved mTOR inhibitor called RapaLink that was published this year in Nature- they did license it out, so presumably they trials will be coming in the future. It was designed to work in two ways on the kinase, so it will inhibit wild-type or mutant, and work even after conventional drugs failed. In short, it takes very little of the drug to inhibit and is way harder for the cancer cells to develop resistance to it
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Those who'd rather listen than read may enjoy these podcasts:
http://tns.commonweal.org/tag/cancer/
You'll recognize many of the big names in integrative cancer care.
The whole collection is worth skipping around to visit.
healing light and love, Stephanie
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