Ibrance (Palbociclib)
Comments
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Kaption! So good to hear from you and that you are doing well in KS with fas shots. Faith - I was reduced to 100mg on Ibrance due to WBC being so low, plus I had a transfusion in Feb when RBC crashed. ugh I think 100mg will give me less SEs (mainly fatigue, as hair is already shot). I start round #8 in 2 weeks. I truly hope you can revisit your beloved Italy again. Why not plan a trip? I am hitting all the travel I can this year, as I don't know what next year may look like. I already downsized to a townhouse 3 years ago. My mets are in left lung and 3 bone spots (nothing in liver). I won't let cancer keep me down, as I am still working too. Stage IV in Montreal - glad you got paired with letrozole. Second opinions really help. It's attitude too- ladies please stay positive. (()) Spain and Portugal ahoy!
Claire
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Ahh. I did not realize curcumin and milk thistle are phytoestrogens. Phytoestrogens are found in very very broad class of plants that include soybeans, whole grains, seeds (especially flax), nuts (especially walnuts) and many herbs. So we're not really talking about whether to take curcumin or milk thistle, we're talking about whether sum total of the phytoestrogens in our diet are good or bad for ERPR+. This is a good paper summarizing the what we know and, mostly, what we don't know.
This is my take on things.
1. Phytoestrogens include a broad class of things that are known to have beneficial effects (walnuts are anti-inflammatory, flax seed is a wonderful source of many things). If you eliminated phytoestrogens, you would do a way with a large chunk of a classic anti-cancer diet.
2. Given that soy and other phytoestrogens are more common, I am likely getting more phytoestrogens from other sources than curcumin and milk thistle.
3. Phytoestrogens are as likely to slow hormone receptive positive cancer growth as they are likely to promote it, depending on whether we believe they bind strongly enough with the ER and trigger a growth pathway or weakly and interfere with the pathway. My guess is that it nets out to something inconsequential.
I see phytoestrogens as a whole as having more benefit than risk when you take into account the characteristics unrelated to simulating estrogen, so I don't avoid them.
All that said, keeping things simple is a good principle.
>Z<
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I agree with Z. I think the benefits outweigh the potential negative affects. I actually came across that Komen article about two months ago and showed it to my oncologist and nutritionist. Both were very surprised and had never heard of turmeric being a risk for estrogen+ breast cancer. Both were also skeptical of the information. I wish Komen would provide research or a study to back up their claims because those are pretty serious when you consider how many people RAVE about turmeric in particular. Everything cancer-related seems to mention it as a "yes" food item. Frustrating and confusing.
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I also never heard that about Tumeric and have literally swallowed bottles of that supplement! Yikes!
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My cancer center offers Jin Shin Jytsu. Holding your middle finger is good for cleansing the liver. I don't take any of those supplements. Have considered them but I hate adding more pills.
Travel. Yes! I'm in Ireland now. Wore a mask and flew my week off. Im tired the end of my first week on. It's to be expected but I really think lack of sleep and time change has caught up with me.
I'll have one more week on then will be off a week so can fly home. I got off schedule in May and my tix were already booked. Planning on coming again next year and may ask for whole month off.
Will see how bad the fatigue is when I get home. Plenty of family here to take kids for an afternoon for me to rest. Been outside more and done more walking but rest the next day. Eating a lot of crap but it's all fresh and no additives.
So go. I had to change planes and my last flight was 6-8 hours with small children that dumped their plates (accidentally) and touch everything! I don't feel any worse and it's an awesome change of scenery.
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Yes I agree the benefits out weigh anything that is helping but what I know for sure is that my breast cancer is responding to Ibrance and Letrozole so far. I guess I'm more about if it ain't broke don't go fixing it. My MO at Dana said tumeraic was fine but the other MO I just saw (Dana Farber filling in while on maternity leave) told me he encourages his patients to only do a pinch a day. I never asked about milk thistle as my 2 liver numbers are normal. My alk phos is a tad over normal but could be from bones or fatty liver.
I also do a fairly strict plant diet without soy.
Carol
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Hi ladies,
So my onc told me that my numbers were good from my blood work yesterday, but I noticed a major spike in my AST from 18 last month to 44. That doesn't seem good to me. Should I be alarmed? The ratio has been at it's highest as well.
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In this discussion of phytoestrogens etc., I think it may be important to distinguish food sources from supplements. It makes sense to me that food would have an appropriate amount of something. But often studies use a high-dose supplement, and this could have different effects. And some supplements are synthetics or concentrates, and some are just powdered food in a pill. I know cranberry pills come both ways. The article linked below discusses pros and cons for sylmarin/milk thistle supplements for breast cancer. It also says milk thistle is related to artichokes, so if you and your onc think a food would be safer than a supplement, that could be something to add to your diet. Also, the form of something may matter. For example, my oncology nutritionist told me that flax oil was good, but to avoid flax seeds.
http://foodforbreastcancer.com/foods/artichokes
Yikes, Montreal. They were really going to give you Ibrance without an anti-estrogen?
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LovesMaltese - You are so perceptive and thoughtful in your approach to treatment that I am very sure the path you are on is the one that will heal your cancer. Keep going ...
>Z<
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Lalady, I sure hope the 100mg dose works for you. I'm sorry your counts have tanked, I'll be interested to hear if you feel less fatigue on the lower dose. I'm in my week off after the 6th round and while I'm not feeling too bad, I still get really tired most days. You are so right, attitude helps a lot. We are talking about that trip to Italy for next year, I don't feel ready to plan it yet. I usually do all the planning finding hotels and new places to see etc. While I enjoy it, it's also a lot of work that I'm not quite ready for.
Someone here recommended the book "Radical Remission" by Kelly Turner a few pages back. I just finished reading it and while I'm not ready to adopt some things, others make very good sense like positive attitude, a strong reason to live, social support, having fun and laugh each day even if you have to read the joke a day page on google and just taking charge of your health. I strongly recommend it for everyone on this forum, I thought it was very uplifting and informative.
We had beautiful weather here in No. Illinois today and I hope all of you can enjoy the same wonderful summer weather we have been having this year. I don't remember a summer this nice ever. Maybe having cancer again gives me a new appreciation for small things like blue skies and low humidity.
Faith (in the future)
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I'm with you Stephanie! Hard to keep up and make decisions. Thanks LovesMaltese, Z, eelder and Stephanie for all the info and links. I will read all of this in the morning and add to my notebook! Hello Stage IV in Montreal! Hope the new med does the trick and you don't get many SE's.
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So, this is the Ibrance topic, not liver, but we're sharing about liver health...so I'll contribute again.
An age old, fairly well proven and likely safe liver aid is the use of bitters in diet and supplementation.
Here's an introductory article and there are many more on the web:
http://www.westonaprice.org/modern-diseases/digest..I eat lots of bitter food from artichokes to chicories to herbs to horseradish to lemon zest to whatever I can get my hands on. Many local, organicc farmers grow and offer these helpers and I'm able to pick dandelion from unsprayed areas. I also have a formulated tincture that I use by dropper full between meals.
I also regularly eat live, fermented foods like live and unheated sauerkraut, yogurt, kefir, kvass, kim chee and other traditional foods, made without fruit or added sweeteners!
Now that I'm too ill to do home fermenting (get recipes here - http://www.wildfermentation.com), I'm able to purchase these products from local producers.
btw, I don't drink kombucha, because my compromised liver doesn't like the alcohol content.
xxx
Here's the link to the Radical Remission book group at bco - https://community.breastcancer.org/forum/79/topics...
To health! ~ Stephanie
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hi! I am also from Canada. Toronto. If you know, can you provide me with an information on cost for Ibrance. I am bot going to see my onc. until September , but I'd like to be prepared for the appointment . How does it work- your onc. gives you a prescription for Ibrance or you have to contact Pfizer? And how much does it cost( no insurence).
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Also excellent for your liver is lemon water and lime water. Drink as much as you'd like. Gives you a lot of Vitamin C too and great for alkalinizing!!!!
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Lemon and lime water ... cold. I'm going to get some right now ...
Ezoka - Ibrance costs upward of $120K per year in the US. Nobody takes it unless they have insurance that covers it, but insurance does cover it in the US for thousands of women since 2015. .
In Canada, it's only just begun to get to patients and how it gets paid for is hot topic of discussion on this thread.
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My holistic doctor claims lime water is BEST for the liver. But everyone else (including her) agree that lemon water is also excellent. Start the day off with a big glass and drink throughout the day! Great for so many things.
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I am very nervous. I was talking with SIL about vacation this summer. We were discussing a possible cruise. While I was away with friends for the weekend last week, she called me about a special on the cruise and booking it. I was having a very hard time following all the details and wanted to wait to I was home to discuss so I could focus better. She said the special was ending. So, I said to go ahead and book it. Once home and able to think better I asked for dates and it is on my 2nd week going into 3rd week on ibrance. This is a very large cruise and now I am worried about getting sick while I am at sea. Could try and change it but SIL is away for month of August and daughter goes back to school in sept. I see my doc in two days so I will discuss with her, but wondering if anyone has taken a cruise with immune system comprised?? Thank you all!
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Just wondering if anyone has tried faslodex and ibrance AFTER other meds failed. Mom was on leterzole for 3 years, bone mets only. Then switched to tamoxifen which didnt work as liver mets showed up. Tried E/E combo and didnt work. Now on ibrance. Seems like it works as firstline, any secondline successes?
Also, pharmacy said she cannot have anything citrus while on the med as it affects the dosage absorbed. Anyone else told that?
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singlemom, Just my experience but most comments I've read on here never mention getting ill because of immune issues. The first time I took Ibrance I was on full strength, cycle 5 and still working in the front office of an elementary school. Part of my job is school nurse where we had PLENTY of illness. I never got sick. I did however experience extreme fatigue, like walking from the parking lot to my office was exhausting.....Plus if you are just starting you probably won't see you WBC go down right away.
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Thank you Artist. I hope you are right. I am feeling very anxious about it. This will be cycle 10 or 11 and I won't be just starting unfortunately as I will be mid 2nd week when starting cruise and ending in 3rd week. I would think WBC would be down quite a bit at this time......
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guidinglight... I don't have the studies to cite (I'm sorry), but I have read that ibrance is currently recommended as a first line treatment, but can absolutely be given after other treatments haven't worked and it still shows success. Good luck
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Singlemom - If I were really worried, I would adjust your schedule. Maybe stop after the second week and take the third week off. Then start your next full cycle when you get back. I think it is certainly a choice you can make while on the cruise if you have any concerns. I've gotten pre-approval from my oncologist to make these kinds of schedule adjustments. At one point I did take an extra week off to let the side effects of my treatment slow down. We want to be on the highest dose we can tolerate but if we are going to be on this drug for 5 years+, there will be a few adjustments.
That said, palbociclib effects the immune system including WBC and neutrophils, but no one seems to get more infections. Not that you shouldn't be careful. Having an infection while on ibrance was extremely hard. But you may not be at higher risk.
This a good conversation to have with your oncologist so you know, generally, how you can adjust your dosing to your life.
>Z<
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Guidinglight,
I was on Tamoxifen for 18 months before switching to Ibrance\Letrozole due to slight progression in mets in my spine.
As for the "citrus" question - I believe it is only grapefruit juice that should be avoided. I think lemons, limes, oranges etc are fine.
Cathy
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My onc was the one who suggested an extra week off so I would have more energy for a special vacation. I didn't use it for vacation, but I am taking the extra week for a special four-day event where I had no say in the scheduling and I will be expected to very active.
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Regarding citrus and Ibrance, avoid grapefruit and also bitter orange, a.k.a. Sevilla orange, used in marmalade. (From an oncology nutritionist at a major cancer center.)
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I was told no grapefruit, pomegranate, pomelo oranges .... Same thing as when I did chemo. Basically things with high levels of antioxidants seems to me
d
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I understood from the nutritionist that a few fruits compete for the same enzyme needed to metabolize Ibrance, which is liver enzyme CYP 3A4. These were grapefruit, bitter orange, pomegranate, noni, and star fruit. I was told that other citrus are fine. But the mention of pommelo prompts me to see if it or any other less common citrus fruits have grapefruit parentage, and ask about those.
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Thanks Shetland - that's good to know.
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I was also told no grapefruit, pomegranate, bitter orange, star fruit....
I was also told no green tea
Really conflicted about that. The benefits are huge. But my oncologist + practitioner said that green tea is great for cancer prevention but CAN interact with chemo (ibrance and the like) and affect treatment. Something about it binding the cells and therefore making it hard for the chemo to do its job. That said, several on here seem to be drinking green tea constantly so obviously I am confused....0 -
Ok it's official I am now on 75mg 2 weeks on and 2 off.. SIGH.... No scans till end of August
Also found out today that ever since I have been diagnosed stage 4 I have had abnormal uptake in skull... so I guess I have mets there too, only my MO didn't spell it out to me.. ugh... starting day one of 14 tomorrow...
Carol
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