ibrance

[Jewelyn]

I’ve been taking ibrance with faslodex since 2018. I had to stop taking ibrance because of hospitalization (3) for infections that I needed my immune system to fight. Probably 6 months. In that time I developed nodules (small) in bowel, pelvis and cervical 2. I was taken off both ibrance and faslodex and put on capecirabine 500mg (3 a.m. &3 p.m.) oral chemotherapy. I will continue with this until July and have another PET/ CT to see if the nodules have decreased or disappeared altogether. Then will go from there. I do believe that my combo treatment of ibrance 125, & faslodex worked to keep my original metastasis stable. ( lesion on T6). My oncologist is with memorial Sloan Kettering.

[Merma]

Hoping your recovery to those infections is complete. I am amazed that you handled the Ibrance 125 dose for all those years.

Best wishes to you!

[JEE123]

That sounds tough. Hope things improve soon.

[Elle713]

Hi Jewelyn. This is something I remain curious about. I also was on Ibrance and Faslodex for 18 months - then off for a surgery. I’m now on Orserdu because there was progression. Not sure why I was not kept on Ibrance in case the progression took place during the time I was off that combo. Wondering if they need to rethink this theory. There’s a study at MD Anderson that claims you can develop Ibrance resistance. They take a 7 week off and believe it might still work. Your thoughts?

[genealogy74 in reply to Elle713]

Do you have a link to the MD Anderson study? I am very interested in this topic.

[Artesa]

I hope this works for you and you have as good a response as you had with Ibrance and faslodex! You are in good hands at one of top cancer treatment centers in the world too.

I'm rooting for you Jewelyn!

[AvidBooklover]

I am being treated at MSK as well. Are you asking if you can go back on Ibrance/Faslodex? Were you on nothing while being treated for infections? There has to be a reason they are not using Ibrance again. Push to ask reasons. Will insurance not allow it?

[Elle713 in reply to AvidBooklover]

Are you at MSK in NYC or westchester?

[AvidBooklover in reply to Elle713]

Basking Ridge

[Jewelyn in reply to Elle713]

Westchester

[Elle713 in reply to Jewelyn]

Which oncologist are you seeing at Westchester MSK?

[Jewelyn in reply to Elle713]

Diana Lake

[Elle713 in reply to Jewelyn]

I heard she is very good. I have an outside oncologist at NYP who was with MSK for 25 years. Had my surgeries and radiation all at MSK Westchester. Have gotten second opinions from Dr. Singh. As things are getting more complicated, I might just move my oncologists over to MSK Westchester. Always a tough decision when switching oncologists after 5 years.

[Jewelyn in reply to AvidBooklover]

I gather because the nodules developed in the c2, bowel, pelvis average about 1/2 “. I asked But don’t know what they will put me on after chemo. As long as nodules are there I will be staying on chemo. If they disappear they will evaluate what will be done going forward. I have great insurance. Medicare United healthcare F. I haven’t had any problems with insurance. I was only on fasladex because I needed to be able to fight infection.

[AvidBooklover in reply to Jewelyn]

Good to know about the insurance. I still am on private insurance at age 67, but am pondering chg to that United Healthcare plan. I never want insurance to dictate my possible treatment. Also the ceiling on Medicare specialty drugs at $2400 is so much better than before when Ibrance would cost me $12,000.

[bikebabe]

hi Jewelyn, I feel for you and hope you get the treatment decisions that are right for you. Running a bit behind you as I’ve been on ibrance 125 and Letrozole since Nov 21 and was stable. Just had to take a 4 mth break from ibrance for Covid /chest infection in jan 24 then open hrt surgery and various infections since. Just having routine 4 mthly scans now to see what the impact is and awaiting outcome. Either result will make for tough decisions. If no change, is ibrance of any use or are mets not showing up because it’s lobular. If there is progression, oops, but do I go back to ibrance and see if it regains it’s former effectiveness or start something new depending on whether additional genetic tests are done.

So best wishes for your own treatment.

[Best521]

Here is the link to the “Dana Farber Ibrance 7 week Holiday Study from 2019”. The study was done in petri dishes and mice , not humans, yet the story keeps circulating across social media like other modern myths.

dana-farber.org/newsroom/ne...

Hope remains as many other newer more advanced scientific treatments continue to roll out. Many of today’s effective MBC treatments were not available in 2019. The science keeps moving forward.

[Artesa in reply to Best521]

Thanks for the link. I've been on Ibrance since June 2023, was recently reduced to 100 mg dosing due to very low ANCs and I go to Dana Farber. Interesting study.

[genealogy74]

I spent more than an hour and was unable to find this specific study. I'll keep looking.

[Elle713 in reply to genealogy74]

dana-farber.org/newsroom/ne...

[Best521]

You are in excellent hands at Dana Farber. Between being a Harvard Medical School teaching hospital, their affiliations with M.I.T and the Broad Institute, their prominent research and extensive clinical trial work, The Embrace program for MBC patients and much more you will get the very best care. Almost half of the scientists who presented at the the recent San Antonio Breast Cancer conference came from Dana Farber. There is much to be hopeful about. Anyone who says differently is simply behind and not up to date on the latest MBC advances.

[genealogy74]

Elle - thanks for your find. I found parts of it to be so interesting.

Journal article

[Elle713 in reply to genealogy74]

You’re welcome. I think there is something to this. I just wish they would push harder, revisit treatments and not be so quick to discard what does work best in each individual.

[1horse]

I think herbal supplements can help your immunity.

American Ginseng 1000mg 2x daily start with 500mg 1x daily work up

L-Lysine + Monolaurin half&half 600mg.each but all in one capsule 2x daily

Cats Claw 1000mg 2x daily

Curcumin from Tumeric extract (Solar) 1x daily

All anti-inflammatory and/or boost the immune system.

Also for the cancer patient, take Biotin 10,000mcg 2 in am and 1 at pm

Make sure your B vitamin has Folate

Check your bloodwork for low iron. If your doctor isn’t inclined to recommend an iron supplement, you can just try it 65mg 1 in am and see if it helps with energy and feeling well. Be sure when you first start to take a stool softener at bedtime for a few days as it can constipate in the beginning.

Remember to add these one at a time to be aware of adverse or allergic reaction. If your stools get too loose, cut back on the dosage and work up more slowly. There are more herbals to support the immune system you can research but these have served me well and will get you started. Meditation and Faith works. Best wishes for better health.

[Jewelyn in reply to 1horse]

Thank you for that I will consider your suggestions.

[Best521]

Wow that’s a lotta stuff! Must cost a lotta money! Do you have any reputable studies that show these supplements work?

[1horse in reply to Best521]

PubMed is a great resource. I also have Lyme disease so have done a lot of research believing that most answers to health problems are in natural sources.

[Best521]

Wow I haven’t seen anything on Pubmed showing these supplements work against cancer as you have prescribed. I will have to show my oncologist. He is simply behind in the science. I wonder why he doesn’t prescribe them.

[1horse in reply to Best521]

Just type in the herb or supplement name, less is more. Ie: American Gensing

[Best521]

If you have a study from a reputable source that would be great. The only things I could find was MSK advising mixed results with more study needed and the Mayo Clinic warning not to run to your local health store to purchase American Genseng since many are made with ethanol which is not good with estrogen cancers. Always the same issues with supplements, poor quality control, lack of studies proving efficacy, adverse cancer drug interactions and no regulatory oversight. One scary statistic popped out, 20% of all liver failure in the US is due to dietary and herbal supplements. Yikes that’s the last thing a MBC patient needs! 😱

[Jewelyn in reply to Best521]

I agree thanks for that