Ibrance and Letrozole: Newly Diagnosed Treatment

Hi callalloo, TY so much for your help . I do already have that extra paid for insurance plan , because I had breast cancer 5 yrs ago , and was afraid of potential return and with huge expense. It is also with Kaiser , so the medicare people said I am " assigned to them " and the Kaiser people do not want to allow any outside 2nd opinion , without a fight . They are so horrible . Every day , another bad surprise happens with them . Today it was a new prescription just showed up , for B12 pill , which is listed as "need to fill " . NO ONE discussed this or told me ,so now I have to figure out which dr posted it , and did they even check for interactions or overdoses with the 2 chemo drugs/ etc ? The total LACK OF COMMUNICATION makes me crazy , since last week one told me to take 1000mg per day ( Huge error ) It's mcg , not mg ! Micrograms not milligrams . Last week , the head of oncology actually booked an appt for me, (Interstate) which overlapped a standing appt , across town at a 2nd hospital (Sunnyside) ! NOT HELPFUL. Then it falls to me to call and sit on hold 15-20 minutes to correct their mistake . GRRRRR. So much stress , not much help fighting this cancer . It means the world to me that good people like you are out there , actually helping me . Very best regards, PJ

I've just found about this thread and very happy to read about those of you with good news! I hope you are still doing great.
I was also diagnosed with MBC in January, invasive lobular carcinoma with mets to lymph nodes and bones. No previous event. Currently on Verzenio + Anastrazole with tolerable side effects.

Hi PJ,
I saw that post about the 1000 mg of vitamin B12 and figured it was an error but you got it corrected before I could post ;-).

Kaiser Permanente was a kind of gold standard for a model for comprehensive care a long time ago. Sorry to hear that it's lost its luster and totally agree with you that health issues are already stressful enough. We should be able to count on the medical establishment making things as easy as possible. But I think that one possible contributing factor was lockdown. Every doctor I know is trying to take care of as many patients as possible because most people postponed any medical thing that wasn't an emergency during lockdown, when the last place people wanted to go to was medical facilities. So now there's the added burden of pent-up demand for medical services. Two years worth of tests and surgeries and such that couldn't get done easily during lockdown. And a lot of cancers that might have been caught earlier if routine annual physicals had occurred on time. And a rogue covid that is still on the move and usurping hospital beds.

Can you get an ombudsperson at Kaiser to help navigate the system? Hospitals have them but so do some non-hospital medical providers? Or a patient advocate from the oncology department? Even a friend to help you keep track of appointments and go to them with you when helpful can make a difference in getting the attention that you deserve. For what it's worth, I have a friend who twice appealed an insurer's rejection of coverage for an unusual surgery and won the second time.

Hi callalloo, New pulmonologist today actually went over the truth , from January's CT and PET scans pathology rept , and its much worse than I had been led to believe , which is so infuriating and disappointing . Why lie or hide the truth , it IS what it IS , and like it or not , cancer must be faced head on and the options explained honestly . New oncologist I start with next Tues. , so that is hopefully going to give me some new guidance and a 2nd opinion .

* callalloo, I did need to hear what you said about lockdown . I'm going to print that out to reread again ! So much truth there , in your words , and I can always override that with " but this is my LIFE I'm fighting for" , not a diff job , or cheaper rent , or a new relationship .... My neighbor in Fla called today , my wonderful house that I suddenly couldn't clean out and sell , when I went back for that purpose in Feb/Mar 2020 , has a ROOF LEAK . Ugg. Spending $$ to fix a house, knowing I'll prob die before I ever get to go home again , is so hard too.
We've all been thru the ringer , and I feel so cheated that I don't get to sell off my antiques, that I've worked 30 years learning about , collecting and selling . That's why I want just 1 or 2 more years , to clean out , tie up loose ends , reap the benefits of protecting and restoring these items . I have hope the Ibrance /Faslodex treatment would buy just a little time , to put my affairs in order , and not stick my two (adult) children with so much . Cancer doesn't care . Sorry for all the whining ,rough day

Oh, darn, I'm sorry that you have a newer version of current facts and conclusion. It would be nice to have a respite from the battle I'm sure. But medical knowledge is increasing exponentially so who knows which discovery, today, makes a huge difference in cancer understanding and prevention tomorrow?

And then there's the fact that the human body is still a mystery. As are most viruses on bacteria on the planet.

My mother spent nearly her whole childhood hospital and in surgeries for a mystery illness (diagnosed decades later as likely ostemyelitis). She was 'sent home to die' three times but, instead, grew up to study medicine.

A world-renowned physician spoke at her med school. Someone asked him what was the 'biggest surprise' from his nearly 70 years in medicine.

He replied that he continued to be amazed at the human body's resilience and its natural ability to heal. He studied autopsies in his retirement years and said he'd seen thousands of tumors, and other conditions, that 'should have killed the person' who never knew about them when alive and died of totally unrelated things.

For him, it was like rediscovering the wonder that led him to want to practice 'the art' of medicine as a boy. I grew up hearing that story and being reminded that doctors can only know so much and to pay attention to my own body and then trust my instincts.

I suspect that you might be doing the same while also working through the different facts, data and opinions as the next steps become clear and you just tackle them one at a time.

I haven't seen anyone recommending looking at nutrition to help fight cancer. Regardless of whether you are taking the surgery / chemo / radiation / or hormone therapies, nutrition can play a big role in restoring health. There are many books out there with good information written by people who beat their cancer by totally changing their diet. Having a healthy diet is surely not going to hurt and may make a big difference. Two books that I am reading are: Chris Beat Cancer - A Comprehensive Plan for Healing Naturally - written by Chris Wark; and, Keep Your Breasts! - Preventing Breast Cancer the Natural Way - written by Susan Moss. They explain a lot of the science of cancer and some of the natural foods that will help you fight it by boosting and repairing your immune system. No insurance needed and certainly does not hurt to practice healthy eating, exercise and stress control / meditation.

I was on Ibrance/Letrozole for 7 months then the tumor markers started going back up and I’m now on Afinitor/Faslodex. My onco had guessed the Ibrance would work for 12-18 months, but it didn’t. I don’t give much weight to “survival rates” as I think every body is different. For me, fatigue was the big issue with Ibrance. Although still there it’s less with Afinitor. I was on 10mg of Afinitor, but developed mouth sores even with using a prophylactic mouth wash, so am dosing at 7.5 now and will see how that goes. FYI, there’s a mouthwash known as Magic Mouthwash to treat sores if you get them. Not available OTC, needs to be compounded and my insurance won’t cover it. You can also get the recipe online. Hope all goes well with your treatment.

At least your oncol thought it might work 12-18 mths .The oncol I had , who placed me on the Ibrance/Faslodex regimen totally missed when her 8 1/2 mth pregnant case mgr didn't set the appts right ( patient is supposed to take shots at 2 wks , 2wks , 2wks THEN go monthly ). She also GAVE up for no reason , when the very FIRST cycle of Ibrance at the highest dose gave low blood counts ! Tried to push me onto horrible drip infusion Taxol , including tons of steroids and not even give the Ibrance/faslodex regimen a chance to succeed . My research indicated 80% of patients do better on 100 mg dose , so I pushed for that ,and she has reluctantly lowered the dose , and I'm doing much better , labs are good . Yes , fatigue is real but SO SO SO much better than drip chemo side effects !!!!!!!!!!! New oncol is up next week , hooray . "I don’t give much weight to “survival rates” as I think every body is different. " <<TRUTH
Best to everyone , PJ

My impression is that a lot of people dealing with this are making changes to their diet, maybe just writing about it. I certainly am on the theory that anything that might help general health and immune system is a net positive whether it prevents bad cancer news or not. At the least, I may be better able to deal with any health challenges. I do however allow a lemon ice cream (Trader Joe's new flavor) exemption to whole food plant based goal.