Hi.
I am still struggling with low Neutrophils while on Ibrance. I am at 100mg. One of of my oncologists says that they need to reduce my dose, the other does not like the 75mg level and disagrees that it is just as effective. He is a very smart, overeducated guy, so, his opinion does matter to me. Anyway, apparently dark chocolate (50mg) can really lift one's Neutrophils. Has anyone come across a brand that is sugar free and palatable? Thanks.
Hello Kdiet! I’m sorry about your low neutrophils on 100 mg dose of IBrance. This was my story exactly 6 months ago. The doctor did not want to drop to 75 mg dose ; instead she had me wait out two weeks between cycles. I did some research on dosing trials for IBrance. After some discussion, we agreed to try the 5 day on and 2 day off schedule that carries on without a break. I’ve been doing this for the past 6 months and have actually consumed more IBrance this way then I would have taking a two week break on the 21 day cycle. I want you to know that my numbers and scans have stayed stable all this time and I have never felt better.
While I haven’t heard about the dark chocolate fix for neutrophils, please know that there is a new dosing protocol that may help you even more.
clinicaltrials.gov/ct2/show...
PS. Most of the dark chocolate has recently been identified as having unacceptable levels of lead because of the way the cacao is harvested in countries that have little or no rules for food production.
consumernotice.org/news/her....
So please be careful about how much you consume.
Best wishes 💜
Thank you for this wonderful and informative reply. I am off to the Mayo Clini c in Jacksonville Sunday. Will discuss with them. Thank you so much. Xw
while you're at it, I eat the baking semi-sweet morsels like used in choc. chip cookies (great value); please let me know if you hear anything about those and thanks. I enjoy them alot because they're in such small pieces 
Ask them a lot of questions! See my reply above about my Mayo consult in MN. Best to you!
cannot find your Mayo Clinic post.
Rats! Stupid software! I can't find it either. I said that the Mayo Oncs in MN (at a recent consultation I had) say the best E-blocker is Faslodex, and to couple it with Verzenio. They DEFINITELY SAY to start with the LOWEST DOSES!! I am even on the low dose of Faslodex--one injection only of 250 mg. No one seems to use Ibrance any more from what I can l see--but my sample is not large! Ha-ha! When I was last on Ibrance, mabye in 2021, they did things like two weeks on and one off--which really helped. Many oncs are afraid to mix it up a little, but if you do not get progression form lowering the dose I can't see what the porblem is. In my case I stopped Ibrance all together while on Letrozole--and wish I had known about the low does option of Faslodex because that was the ONE E-blocker I could tolerate. It is so hard to have to read trial studies and do our own research--but we have to advocate for ourselves. Our US society is so litigious--we can't get honest answers from the MD's because they are all so scared to offer alternative options. What a mess! I have consulted at 4 clinics in MN--and so far Mayo seems to be the most honest and open to communication. Best to you. And let us know how the Mayo consultation goes!!
Agreed! I got stuck on "E-Blockers" and tried to look it up. All I got as a layman was something about blocking e messages. Need an inroad to the good stuff because, as you say, we need to advocate for ourselves. We cannot rely on most doctors to take up our case in earnest and to stick to it.
OH too funny! Sorry--yes "E" blocker means estrogen blocker--of which I think there are 5 now. Three are AI's--all are horrible in my opinion since they cause a lot of mental issues, at least letrozole and anastrozole do; tamoxifen is another with a different mechanism and causes severe depression; and fulvestrant/Faslodex brand name (an IM injection) is a SERD. There are more oral SERDS in clinical trial right now. Most of the time a CDK 4,6 inhibitor is NOT given alone--always with an estrogen blocker. I hear that Verzenio has been trialed alone, but have not read the papers. Best!!
I think we have to be careful when sharing info about things like estrogen blockers and make sure we are being clear what our own personal experiences of each drug are like, vs, saying they all cause specific symptoms. I used to part of an in-person group going through similar drug treatment at the same time. I had issues with Arimidex (an aromatase inhibitor that gave me muscle pain, horrifying brain fuzz and gradually more weakness) but others found it tolerable. I had almost no symptoms on Tamoxifen or letrozole, while others had severe joint issues. One lady had extra severe cramps taking Tamoxifen. So we can all respond very differently to the same drugs.
Sometimes, I think usually earlier in the lines of treatments, an oncologist may give an estrogen blocker to a patient as a solo drug but the CDK4/6-related drugs like iBrance are always given with an estrogen blocker because they are actually designed to work together to block the cancer's pathways.
There has just been a new oral-SERD FDA approved, Elastacrant (?). Someone posted about it recently.
Yes, I agree 100%. I started by stating above "in my opinion" and then related ALL OF MY SYMTPOMS on the FIVE and I mean FIVE estrogen blocking drugs that I have tried. I have a very hard time tolerating them. These are all MY symptoms! And my personal experience. Not someone else's! How could it be someone else's? I believe that the first 3 to 4 years of my MBC disease that I was made the sickest by the treatments. And that is NO ONE else's opinion. Don't worry about it--I rarely read this board--and rarely post. Not sure why I did this time--must have been bored! Best to you!
LadyKatarina, I'm really sorry if I upset you, I had no intention of doing that at all! And I guess I misread how you wrote about your experiences. I was mostly concerned how jersey-jazz might be influenced by the symptoms you described (because it seemed to me she was already very wary of the drugs), and so I thought I would add another opinion/experiences. I had Arimidex, Tamoxifen and Letrozole one after the other even before my MBC diagnosis (with the very different responses as I previously described), and have had Faslodex for part of my journey since my MBC diagnosis 5 years ago. I do consider myself very fortunate that I only ever had major issues with Arimidex. I'm really sorry you've had a hard time with these drugs, it certainly adds a burden to us when the quality of our every day lives are negatively effected by our treatments. Honestly I suffered way more through my initial "Stage 1" treatments than my MBC treatments - which is kinda crazy - so I certainly can relate to the problem of what's worse? The cancer or the treatment? I wish you well on your journey forwards
well I was interested in your point of view, so please continue to give us your 5 cents worth 😊💜
hi!
I’ve never heard of a lower dose for faslodex! I’ve been on it for almost three years now. Does it still work the same at a lower dose? Thanks, Susie
There is a good paper out--but I don't hvae a link right now. Research it. Yes, when Fulvestrant/Faslodex was first approved it was used at a 250 mg dose once per 28 days. They used that dose for about 7years. Original trial comparison was vs anastrozole (Arimidex) and at the 250 mg dose F was better than A--and I bleieve they are stil using that same dose of anastrozle which the 250 mg Faslodx trial showed improvement. The paper has a title like--"Fulvestrant: Making a good drug even better" or something--and the graph is a teensy weensy bit different. So they DOUBLE the dose to get that teensy weensy bit--and it becomes SOC. Are you familiar with the group that has studied drug SE's in MBC patients? Check out therightdose.org. More drug is NOT better!!
thank you so much!
What do you mean? No one's on iBrance anymore? I've been on it for 6 and 1/2 years
Very encouraging to hear you have been on Ibrance 6 1/2 years. My onc tells me he has a number of patients on Ibrance for long periods of time. I have had great success with Ibrance and Letrozole and will be starting my 14th cycle. Fingers crossed I will also see 6 1/2 years.
I sincerely hope you can too! My original oncologist gave me 14 months to live and had me on regular chemo. I got 2nd opinion and he put me on Ibrance and Letrozole. I hope you are on for years and years and years!!! All the best to you.
unfortunately that combination only worked for me for 9months 😞 now I am on a drug trial which after 5 weeks isn’t helping and my symptoms are worse. Fingers crossed 🌸
Prayers up!!
Thank you so much for your input! Largely because of you, when I started back on Ibrance I did 21/7 then switched to 5/2 and I have never felt better and neutrophils are stable. My onc got visibly upset when I even brought it up so I just shut my mouth and did it anyway. I did feel a bit tired one day, so I took an Iron gummy and that was what was needed as no tiredness since! Now off to see the trial link you posted, hopefully it is the finished study we've been waiting for! Thanks again for giving me the confidence to swim upstream and do this thing! God bless you and heal us all in Jesus name, amen! <3
hi Kdiet! I am now having low neutrophil issues as well. Onc told me 2 yrs ago that if they drop below 1 (1000) that’s when they consider making an adjustment. I have always been on 125 mg. with no problem until now. Kind of confused as it was .9 at my Jan nurse visit and he communicated (through the nurse) to stay the course. In particular this surprised me that it was that low because I had just finished my off week. Will address in Feb when I see him and get my scans (it’s been 6 months for that and I’m already nervous). I am happy to hear about the dark choc which I prefer so will discuss this as well. I hope we both get some answers and will be able to continue with the Ibrance. Maybe a new dosing schedule will be the answer.
hi Kdiet, as a chocoholic I love this question! I haven’t heard of chocolate helping neutrophil levels, but have heard it’s flavonols, antioxidants and serotonin help support your heart and mood.
Some no-sugar options are: Lily’s chocolate bars sweetened with Stevia; Pascha unsweetened chocolate chips; and Navitas unseeetened powdered cacao. All are available in Whole Foods or online at Thrive Market. On the higher end, Fine & Raw has some unsweetened raw chocolate products and Honey Mama’s makes my favorite chocolate of all time, sweetened with raw honey.
I’ve heard of exercise and other things helping boost neutrophils - would love to hear other tips.
Thank you for the excellent suggestions. Take care.
Yesterday, I had my appointment at the Mayo Clinic in Jacksonville, FL. Good meeting. I asked him about food/nutrition to help with Neutrophils. I specifically asked about dark chocolate. He said that there is no food that directly helps prop up the Neutrophils. So, I now have confirmation from all three of my oncologists that there is no specific food to aid in the production of Neutrophils. But still like dark chocolate?!
the latest issue of Consumers Reports magazine (or go to their website) has a detailed analysis of dark chocolate and high levels of lead and cadmium. It’s due to the types of soil and processing. They list specific brands with corresponding levels and make brand recommendations.
Read all about dark chocolate and high levels of cadmium and lead in Consumer’s Report magazine
wow! I am stunned at the high levels in these “safer” brands! Thank you for sharing. But what on earth were the levels for the not-so-safe brands? I usually get Wholefoods dark choc these days but used to love TJ’s organic dark choc
The % that they are quoting is the % of the limit of the CA rules for what is safe. So, not the % of unsafe amounts in the chocolate itself. So confusing......
No I don’t think so. The % they’re quoting is the % in the chocolate, comparative to the CA limits . So, EG., Taza choc, 33% of the CA’s upper daily limit of lead in one serving . Which for one of the “safer” bars is still HUGE.
For us, with our already compromised systems this is not good news at all. (And imagine if a pregnant woman was eating daily dark choc!)
It’s probably too high in a lot of our other foods too, that’s the really sad part
Are you sure? Take a look at the article--and some of the %'s in the bars that tested out the worst are 140 to 200%. Do you think the upper daily limit of lead in CA is 200%??!! Crazy stats, for sure. Sorry--my brain is so fried lately due to some infusions that I can't think out this kind of stuff anymore!! I have been eating 2 squares of the Ghirardelli 72% bar or about 0.9 ounce per day. It is my "go to" dessert!! But I am old and who cares if I have a little lead??!! However, one would like to know the numbers........ Thanks!
It's ok, I've been there in the past with an inability to process numbers due to my treatment. So in my example above - California's max daily limit of lead is 0.5mcg . The "safer" Tazo brand - if you ate an ounce a day (super easy for me!) then I would be eating roughly 1/3 of 0.5 mcg a day, or 1/3 of the daily maximum.
And yes, the worst bars, EG. the one I ate every day for a couple of years (!!) - Trader Joe's The Dark Chocolate Lover's Chocolate 85% Cacao - means that at 1 ounce PER DAY I ate nearly 1 1/3 (127%) OVER the daily maximum lead AND over TWICE (229%) the suggested daily maximum of cadmium PER DAY. That information freaks me out!
We have a friend who got very, very sick from lead poisoning from eating sushi nearly every day. So if we eat dark chocolate, every day, plus certain fish a couple times a week, plus lead from whatever other food sources, it all adds up to way too much fast. It stays in our systems. I have liver mets so I don't think it needs this extra burden, despite how much I really love eating dark chocolate
yeah we used to buy TJ’s organic dark chocolate too… until we saw it was on the BAD list!! Consumers Reports noted they reached out to TJ’s for comment and hadn’t heard back as of publication time.
And to me it’s the best! The only reason we stopped buying it was due to the pandemic limiting our drives past their store. Yet WF’s choc offerings are barely better. Dark chocolate is my ONE daily indulgence, so it’s very upsetting for me. And at first I thought “ok back to the bitter raw cacao nibbles” but that’s really the source so ARGHHHHH! 😭😭😭😭😭😭
Thanks. Very timely article!
I love the advice to eat dark chocolate. I already do
I get a canister of Hershey's Special Dark chocolate powder, add egg, oil (not olive), & honey. Maybe a little milk. Make my own dark chocolate icing &, when cravings hit me, a little dollop on a spoon, put the rest in fridge. I do this on occasions, not daily. I found a recipe on YouTube for making your own tootsie rolls has similar ingredients. This helps me too sometimes.
sounds delicious. Thank you!
I started on 125 ibrance but struggled for 6 months and was hospitalized. Dropped to 75 mg. Tried many variations and am now on 2 weeks on 2 weeks off. I am managing that with some side effdects. Usually a few days of nausea and extreme fatigue. My scans have been stable.
I've been on Ibrance for a bit over 3 years , 2 years on 75mg due to low white count. Scans have shown NEAD for over 2 years. My WBC/ANC has been much higher on 75 mg so I haven't needed to take an extra week off . I had read about the dark chocolate helping so bought some European high cacao dark chocolate and tried to get my WBC up but that didn't work for me . Since then I did read how many chocolate brands including Lily's which was my favorite have high levels of lead and or cadmium :/
I also love dark chocolate but make sure to read the link Dragonfly shared in this thread about the high lead contact of many, including Lily's!
75 mg worked for me for at least 2 1/2 years without progression! I still had low count issues so I took it for 21 days and was off it for about 10-14 days
Dear Chocolate, I LOVE YOU!
I’m on Ibrance 100mg and Letrozole for 6 years. My neutrophils have always been good, a few times they were .087 (my oncology pharmacy won’t let me start my cycle unless it’s 1.00 or higher) today’s neutrophils were .069 while all my other blood work was in the normal range. Waiting to hear. I think I need to look at a different schedule as well. I hear dragon fruit helps with wbc!
Good luck
in U.S., there is a brand of choc.chips that is VEGAN, no added refined sugar, available at Walmart, and larger bags at some Sam's Club stores. Brand called "Bake Believe"....Fair Trade, but I don't know country of origin. Very good....I've used it to do Slow Cooker Almond Clusters, and it's good...wholesomelicious.com/slow-c... letsbakebelieve.com/product...
However, this "dark chocolate" is really only 55% cacao, but still very good. Most dark chocolate with best benefits is 75-85% cacao.
Off Ibrance
WBC count 
Sickness due to low neutrophils
I’m new
Nausea side effect?
