I am on Ibrance/Faslodex. Have had to go the lowest dosage because it lowered my immune system badly even though I have tried to boost my immune by eating healthy. No other side affects.
Latest scan has shown slight progression in lung nodules for the second time.
I am wondering if I might be able to increase the dosage now that I have been on it for awhile. I also need to do more research on boosting my immune system.
Is it possible to make a marked difference with diet? I have tried to eat the right foods.
My oncologist wants to go to Xeloda and I want to try and get more mileage out of Ibrance. I am going for a second opinion.
Cheers, June S.
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I’ve had issues with my neutrophils being too low and rather than lowering the dose (currently on 100mg), we have done 3 weeks on then 2 weeks off. Did you oncologist try that? It’s been working for over a year but I’ve had recurring bouts of diverticulitis which may be a side effect for me of the lowered immune system.
So I am now trying 2 weeks on followed by 2 weeks off. Only done this for one cycle so far, will keep you posted on results.
I now have a new oncologist who is open to trying different configurations of ibrance before switching to lowest dose.
Has your oncologist suggested tweaking the way in which you take the Ibrance?
Hi Susi: Thanks so much for your information. Much appreciated. No, my oncologist is very much a reactor. She just goes to the next regular protocol. Although we are trying now at 75mgs. 2/1. It is working. I am holding just above the safe area for neutrophils. She is looking into raditation but I worry about the splatter effects from that, especially on the chest.
I am going to do more research into boosting.
If I can get my immune system up, then I would love to suggest we try 100mgs. 2/2. That sounds good.
I know they say 75 works as well as 125 but since I have some minor progression at 75 maybe we could try upping the dose as opposed to going to Xeloda.
Please let us know how your different configurations work. Great Info.
I would check into getting a Neulasta injection. My oncologist told me that if you’re three weeks on and two weeks off you’re basically not getting the Full affect of your medication.
That does make sense. Maybe that is why I have progression even though it is slight. It is disturbing to me that there is such a simple solution available and it wasn.t given to me.
My oncologist at MD Anderson told me that if your neutrophils don’t come up to normal within a week that you should be getting a Neulasta injection. I would talk to your oncologist about this instead of going down to a lower dose.
Canchondo - That's so interesting about the neulasta! I hadn't heard of this for Ibrance but it sounds like it's something they're beginning to try out...What a boon that would be!
BTW, I eat only dark chocolate, not milk chocolate, due to my vegan diet and so I'll suggest that you try a bunch of different brands/types. Some are extremely bitter but others are really tasty. I don't know what the difference is but I've landed on Cote d'Or dark chocolate. It seems to be easy to get outside of the US, so since I'm stuck here (US) for now (!!!), I order it online...
I stopped at just this study, but do recall searching for info before and there were numerous food groups recommended. Also B12, either through food or just the surprisingly tasty sub-lingual pills my doc recommends.
Good luck to you! Please do let us know if you find anything that you think will work, this is such a problem for so many of us!
Yes, I had heard about dark chocolate. probably the difference in taste is the sugar content. Do you think? Or is it pure? Anyhow, thanks for the info. I am going to ask my reliable second opinion oncologist and also check out the nutrionists at both hospitals. And of course my old stand by's, John Hopkins and Mayo.
I was really a bit annoyed to find that red peppers boosted the immune system but also apparently causes inflammation! So me, with servere osteoarthritis in both knees, down to my feet, could be causing trouble. And i always equate cancer pain as a form of inflammation.
We have to check and double check info we find! So time consuming.
Maybe we should have a member checking each one of these for all of us on any subject. That way we wouldn't all be searching the same things, same places. Does that make sense?
I didn't mean one member doing it all. I meant one member for each site. And even one of those lucky ones that go to places like Anderson.
Cheers, June S.
My oncologist told me their was absolutely nothing I could do to raise my neutrophils. He also said that we have to be careful as some things that might boost our immune system can wreak havoc on how Ibrance works.
Thanks Sarah for that input. That is very interesting. That certainly seems to be true in the case of my red peppers and who knows what else I am eating for health like raw spinach, which I love on a sandwich instead of lettuce. I agree, I think we have to be careful as we are in a Big Game playing field here with Ibrance and all the other drugs we take.
I am sounding off about this whole subject. I think it is because of my lack of confidence in my ocologist. I think she will be a good doctor someday and I am know she knows more than I do but she has made some pretty serious wrong decisions as has a radiologist at my hospital so it makes me feel like I have to watch out for myself. Not so good.
I think it is the way these nodules have progressed that puts a doubt in my mind as to how serious they are. Or maybe I am clinging to hope! What a dilemma! Anyhow, I don't think I can do much harm by delaying change a couple of months but I will go by the decision of the second opinion.
It is so difficult when you aren’t comfortable with your oncologist decisions. There is nothing wrong with wanting a second opinion. We are the only ones that can truly fight for ourselves. Good luck with the second opinion.
Thanks Sarah. Yes. Trouble is we shouldn't have to fight for ourselves. The medical system should have our backs. I am getting so tired of fighting and being on guard.
Hi Sandra; Thanks so much for input. Always well thought out. Yes eating healthy and taking care of ourselves is the least we can do in this situation. I agree with the strong enemy we have. It is a serious dilemma but we are making some inroads. We are living longer.
Let's see what my second opinion says. I trust her implicitly. Thank heavens I have that option.
Hi June - I do lots of reading here but do not weigh in very often. I absolutely love having everyone's personal experience at my finger tips when I talk with my oncologist. So to help you along I'll give you my experience...
I am on Ibrance and Fulvestrant, had to really push for that option a year ago April. So that makes me about 18 months on. I started at max dose for 2 cycles and was lowered to 100mg because of my neutrophil count. I went a year and a couple of months at 100mg - 90% of the time I was 3 weeks on and 2 weeks off. We were worried about some new activity and the decreasing neutrophil count - my Ibrance was reduced to 75mg to help my neutrophil numbers but it didn't change and then my oncologist switched me to 5vdays on and 2 days off with no break. My neutrophil numbers are the best they have ever been and my CA 15 is now dropping again after a pretty significant jump! My oncologist told me that the more regular dosing should produce better efficacy and she was right. I was on Capecitabine before Ibrance - I really appreciate the improved health Ibrance/fulvestrant has brought me.
I am being treated in Manitoba so this is something that has been approved at least in my province - there was a recent trial for this dosing plan you can look it up.
I do not have lung mets but many, many bone mets - I have been on this journey 6 years now.
Best of luck in finding your balance between drugs, dosing and living! Change and uncertainty is hard - persevere and persist if you want to try something different or the same drug differently!
Wow! Thank you so much Tammie. What wonderful news. I am not sure about the bone vs. lung mets. (or any other) difference if any. But I think this is very encouraging news.
Not sure if you are familiar with my journey but I started out with breast cancer moved to the hip. The hip has never progressed. Not even slightly. Not even a guarantee that it is bone mets. My breast tumour grew quite quickly, after 7 yrs. in the last 6 months of 2019. It became quite a problem and after trying radiation, had to be removed. Surgeon felt she got everything in that area. Nothing has changed there. These lung nodules started as one very small spot and has grown over the past year to seven nodules. My oncologist is sure it is cancer but has not suggested a biopsy. Only radiation. I have reasons to doubt this oncology unit I won't go into here. I trusted them implicitly in the beginning.
I think changing up so quickly now to Xeloda is mistake. As I have said, I will wait for the second opinion.
So grateful for your reply, even if it doesn't work for me. I might have to progress but I am making sure it is the right thing for me.
It is late here so I won’t try to type in my story on my phone; definitely been more open to sharing my journey this past year. Perspective I guess...I too changed Oncologists ( I did it early on). So glad I did - I firmly believe it saved my life! I hope you find someone you can trust and be frank with.
Thanks Tammie. I need a sweet dream! It is not practical to change now but I might in the future. My options for a new oncologist is one hour drive away. I go there more often for a second opinion though as she is a well respected doctor and knows her stuff. I will let you know what she says.
Hi Tammie: I have been doing extensive research trying to find more information on your Ibarance dosage of 5 days on/2 off. I haven't been able to find out anything. I tried my oncologist and Phizer but they didn't have anything.
Don't know if you can send me more info on the trials or who to contact for more info.
Mind you my oncologist is adamant that I need to go to Xeloda because of two scans showing slight progression each time.
Too me that is not a reason to hit the panic button but I may be wrong.
I have had issues as well with Neutrophils but now It is much better, since March I have taken Ibrance 100 mg during 1 week and 1 week off etc. My last Scan in September was NED.
Thanks for sharing your info. Wonderful news with the NED. I think Ibrance is a great tool against Cancer. It has worked for many years for some. So many different dosing plans. It is great to be trying different approaches. I wonder if I might be able to tolerate a higher dosage in a modified plan. I feel otherwise very well. Just the neutrophils.
Hi, my Oncologist has me on 125mg of Ibrance plus Fulvestrant shots and Xgeva shots , what has helped me build my weight back to normal and feeling better is an Oncologist at the Mayo Clinic told me to do a protein powder drink 3 times a day, I only do one for breakfast, I mix with frozen or fresh fruits, some almond milk, honey, cinnamon, peanut butter, avocado, yogurt, in a blender etc. and was told to take folic acid 800 mg a day, I also take vitamins, B12, C, D3, K2, fish oil, B complex, but of course talk with your Oncologist about all this first, all this has helped my immune system but my WBC and RBC are low, but my Oncologist told me this is normal with taking the Ibrance, hope this helps, thoughts and prayers are with you !
I would guess the reason there is growth is due to the cancer mutations and constitution. CDK4/6 inhibition doesn't work forever and sometimes doesn't work at all depending on what makeup the cancer cells have or mutate to.
changing your diet will not improve you ANC - I just went off Ibrance because it was keeping me off for 2 weeks due to low ANC and I had slight progression. My oncologist put me on Verzenio (still a CDK inhibitor). but one that doesn't affect your white count like Ibrance does. Check it out with your Dr.
Thanks for mentioning that. I had forgotten about Verzenio. Will ask tomorrow when I speak to her. I have been largely distracted lately because of having a water leak in the house. Things are better now.
Hello Sandra: Can you give me a recipe for your greens juicing? Can these be added to a fruit smoothie? Thank you so mch to all the wonderful ladies on this site. I get so much valuable information. Thanks again.
Hi Sandra: She is just a little to far for travelling. An hour and a half really. As opposed to the one where I go now. It is something that is in my mind and I may have to switch to her anyhow as they don't really want to do referrals more than once a year. She would take me on as a patient if I want to switch.
Look at the prescribing info that comes with Ibrance. It is known for causing sometimes serious side effects to the lungs. I was on Ibrance for a few cycles in 2016 and developed a lung condition called Interstitial Lung Disease. Both my onc and the pulmonologist I started seeing believed the Ibrance caused it. It has not gotten any better in the years since I stopped the Ibrance and I understand that the warning that come with it are stronger than when I was on it. I get winded very easily even though I am using two different "puffers", albuterol and Breo. And I think getting a second opinion is a great idea! Comprehensive Cancer Centers are the top cancer centers in the US and have very specialized oncs, like bc oncs, who both see patients and do research. There is a list of CCCs under Topics on the right side of the page here, under "Useful Resources." I've gone to the CCC closest to me twice, once just after initial staging and then again last year after my old, wise, trusted onc retired! (I really miss her, but know she deserves her retirement....she waited til she was over 70!) I hope you will get good direction and do super well, as quite a number of us do!
Thanks so much for your informative reply. I am in Canada and am reaching out to Ibrance for directions as I understand there have been trials to experiment with different dosage regimens. For instance apparently 5 days on, 2 off works better than some others. I will try to find out. Sorry you had such a bad experience on Ibrance. We do have to be careful.
Hi. I’ve been on Ibrance 125 mg and faslodex since May of 2019. My side effects haven’t been too bad. My finger nails became very brittle so I started taking biotin which helps. I drink green tea which helps with healthy antioxidants. I also have a smoothie every day which I put flax seeds and chia seeds in as well as green super food powder and immunopower gold vitamins and minerals. I think all these together have helped me. My marker number started at about 1600 and is now at 66. I don’t know if it would help you but I would recommend it. Good luck. ❤️
Wow Sandra. You are an inspiration. I know how important it is to eat healthy. I am not sure how to private message you. I am not very computer savvy. Can you tell me where I can obtain green powder? I too juice whole fruits but I do it in the blender. Is that ok? Sorry for all the questions. I appreciate your wisdom and am in awe of your blood counts.-Madlyn
Hi Sandra; I didn't know you were juicing specifically for your neutophils. I thought you were just being healthy. I might just try this. Do you do fruit skins and all? And how much do you drink per day?
Thanks for the reply Sandra. Very helpful. I am waiting for my second opinion to phone. I did talk to my oncology nurse and she and the doctor are adamant that she could not go further with this drug because of the progression. She has never heard of 5 days on/2 off. She wouldn't even agree to let me stay on one more week , as I am on my week off now and should start again to-morrow, until we got the second opinion.
I was down to 75mgs. dosage. so perhaps that is another issue.
The progression was described as Multiple bilateral pulmonary metastases, slightly increased from previous. Largest is in the left upper lobe, axial image 39 measuring 1.1 cm maximally; previously 0.8 cm.
Reference nodule is in the major fissure, axial image 81, measuring 1.3 x0.8: previously 0.9 x 0.6.
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