I'm getting concerned my oncologist doesn't know enough about Ibrance and protocol. I am on my 7th cycle , been dropped to 75mgs after having three low neutrophil counts on 100mgs. Bloods again showed neutrophil count of 0.8 on 75mg so delayed treatment another week. Recent discussion with oncologist was i will probably need to come off Ibrance if continue having neutrophil counts under 1 as don't like to put you at any risk etc.
I would be happy to go along with what she says as trust she knows enough about this new drug? But my concerns are why are some women being allowed to remain on Ibrance and just continue to have longer breaks or have heard of some women actually doing 2wks on 2wks off?
Why am I not being offered this as an option instead of just taking straight off?
Both my CT scans since diagnosis in March show reduction in tumour size , decreased CA 15 and stable bone mets??
I've been told it is not actually the Ibrance doing that it is the Letrozole and the Ibrance is only there to prolong the time Letrozole works.
Any advice please and could anyone with low neutrophils share what protocol their oncologist has decided for them and reasons and also could you say where you are from?
I’m in the UK as well..started Ibrance in June..stopped after 2 weeks because of neutrophils..now on lower dose and bloods on borderline but my oncologist seems happy to continue
There are ladies on this site who are long term survivors and there was no Ibrance at that time..letrazole worked for many years
I understand that you’re disappointed that you may have to come off Ibrance and if I was you I would consider getting another opinion
My oncologist did say that in time my body would get used to the drug..whatever that means. I live in Nottingham by the way.
I am on the Ibrance/Letrozole combo as well, with mets to bones only. Have you tried any supplementation to boost your immunity and/or reduce inflammation. I just attended an MBC conference in Seattle this past weekend. One naturopathic oncologist suggested that all MBC patients with bone mets take a combination of Vitamin C with Calcium. Also, strongly recommend the supplement, curcumin.
I've also, read the following: "Vitamins A, C, E, and B9 play major roles in improving your white blood cell count. Vitamin A, in fact, plays a special role in increasing lymphocytes, whereas vitamin C is known to boost your overall immunity. Vitamin B9 is necessary for the production of neutrophils, and vitamin E promotes the production of natural killer cells."
"Consuming foods like spinach, carrots, cheese, meat, eggs, fish, sweet potato, and citrus fruits is one good way of taking these vitamins. You can also take vitamin supplements after consulting your doctor."
Good luck, Natalie. Hope this gives you some food for thought to share with your oncology team! Love and prayers, Linda
Ibrance is still a fairly new drug and it may be that there isn't yet consensus about one best way to proceed when neutrophil counts are low. I've not been to any bc or mbc conferences since it was approved for use but when I have gone to conferences and heard bc oncs and other experts speak, one thing they agree on is that each of us has a unique experience with cancer and a unique set of cancer cells. There was a study in Germany several years ago that started out in the hopes of finding a few specifics about breast cancer that most of us patients had in common, beyond the generally tested E, P and her2neu receptors. I don't remember the exact numbers but there were almost as many variations in the cancer cells as there were patients, and the number was high, like over 100,000 high. There were a few factors that most of us had one of, but that was all that this study showed us having in common. One reason it is so bloody hard to treat and get control of. So for each one of us, it is one or two meds at a time, starting with what seems most llikely to work but always without really knowing for 100% sure. Yet some of us do manage to live for a number of years with mbc. My 15 year Metserversary is coming up next March and I sure never thought I would even make it to ten years at first, yet here I am. I got almost five years from Letrozole and over 9 years from Faslodex, plus being on Zometa and then Xgeva for at least 10 of the years I've been in treatment. You would never guess I have advanced cancer if you saw me. Some of us prove to be really fortunate to have easily managed cancer cells, but we only learn that as we move forward.
There was some conversation earlier that counts seem to drop the week off and start building back up after that. I told my onc about the conversation and he looked it up and it was true so we now test mine a different time of month and they are better. They are never going to be anything close to normal while on Ibrance. Hope this helps. Hannah
I have had a similar thought. My bloods on 125g were low on 3 occasions over the last year. Oncologist said he'd reduce the dose. I elected to do this in the end as mouth ulcers were persistent and troublesome. He lead me to believe that the protocol is low neutrophils results in dose reduction and ultimately stopping the regime. Again I was told letrozole is the drug doing the work. I don't understand why a slightly longer break isn't allowed to allow neutrophils to recover. This seems to happen in countries other than the UK. Each time I just needed an extra day or two for bloods to be above 1. My scans showed stable (hoping next one does too! 😬)
Did they say why it's not an option . Had a couple of shots last month bloods always at 0.8 they went up to 2 so able to continue after my 7days off xx
As long as you don't have progression you can continue with 3 weeks on and 2 off on 75 mg (that's wha t I'm on, too). Good luck, .8 is not that low and people have not been getting terrible infections while on this med.
Thanks for your reply , my thoughts are the same x
I live in MInnesota USA and have been on Anastozole for 5 months and Ibrance for 2. PET scan 2 weeks ago showed my 2 cm. breast tumor had disappeared. (I was de novo at diagnosis with one met in the brain--1.5 cm--that was removed via surgery.) My wbc countshavenot been belwo 3 but Ihave had lots of littloe infections and mouth sores. My onc suggested I take Ibrance 2 weeks on and 2 weeks off. After two weeks off my wbc jumped back up to 5.4. He says he has other pts also taking 2 weeks on and 2 off. I think the anastrozole (similar to letrozle) is by far the most important drug---the Ibrance enhances it. They don't know a lot about Ibrance yet--so I think the oncs here are experimenting with dosages--and there is not really a hard and fast protocol. I will ask the next time I see him. I was so blown away that my tumor disappeared I forgot all my questions! Best to you! Oh--P.S.--I have phoned Acreedo the pharmacy that ships the drugs--and they have oncology pharmacists that answer questions. You might try contacting your distributor or Pfizer directly for information. We deserve answers!
Looking for something else and came accross this discussion.
I found the following on another support site which you might find interesting. You might want to discuss this with your onc.
"My onc, who is a researcher and has a wonderful team of scientists-- including pharmacists-- to work
with, typically has a threshold of 2 cycles in a row either needing dose interruption due to a day 14 or day one WBC less than 2.7 or an ANC less than 0.8-0.9, or "time off drug" prolongation longer than a week (barring extenuating circumstances like surgery or some such thing).
She and her pharmacist feel that due to the average 29-hour half-life, prolonging the time off beyond 7
days is not as optimal as keeping on a consistent dose, even if it is a lower dose....however, they also believe that once you have titrated down to 75 mg, if you are still getting a good clinical response but also still having those low blood counts, then shifting the dosing schedule around is definitely worth trying.
Her pharmacist colleague (Sam, a lovely man!) says "There is no magic in the number 7", so you don't
necessarily have to move to taking an entire second week off, nor do you need to keep on a 21-day "on" cycle....he is a strong advocate for being creative, so long as you keep a few principles in mind:
Based on where Ibrance works in the cell reproduction cycle (and likely this holds true for
ribociclib/Kisquli, since it shares very similar CDK4 and CDK6 activity--abemaciclib has a slight different
action profile and we never discussed it since it was long before it came to marker that we had our discussions)
* the time "on" Ibrance should always be longer than the time "off" the drug, and the longer "on" interval
with the shortest "off" interval is the better choice (so, for example, 14 days on and 4 days off is better than 17 days on and 7 days off)
* due to the onset, duration of action and half-life of the drug, he suggests at least 10 days "on"is best to
get meaningful benefit
* 2 days on and 1 day off for 21 days (or the 30 days you would have medication for on that regimen, then
take some days off if needed based on your labs) is a very sound approach; he would not suggest ever going beyond every-other-day dosing; and he would prefer someone try every 36 hour dosing before they tried every-other-day. Other schedules could include 3 days on and one off, or 4 on and 1 off.
Also, please also keep in mind that there is NO data that suggests that people on a higher dose get a
better (regression vs stable disease) or longer response than people at a lower dose, so I would not be too reluctant to lower the dose based on undesirable side eects (low blood counts as well as fatigue, nausea, GI upset, mouth sores, etc). I know that I was very reluctant and unhappy when I had to go to lower doses, but I certainly felt better and also was finally able to complete full cycles and start the next
one on time, which ultimately is the best thing for suppressing the cancer cells. And now that I am more
than 30 months (32 cycles) on it, I know that it is true that lower doses can be equally eective. In fact, my onc believes that the lower doses may be more beneficial in the long run due to the lighter eects on the
bone marrow, liver, kidneys and thus will allow my body to be in the best shape possible to deal with the
cancer and the cancer medications for a long time. She says that it is well known that about 1/3 of cancerrelated deaths are due to the ultimate eects of the medications and not to the extent or action of the cancer at the time of death...so she almost always shis doses around when possible to find the minimal
effective dose for each patient in order to minimize the collateral damage to the body and it's organs.
Bonus is that many of her patients seem to have fewer or less serious side effects that is seen at the highest doses."
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