Ibrance and Letrozole: Newly Diagnosed Treatment

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 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, 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

If you're open to a supplementary insurance plan, you can enlist in that at any time and not wait for an open-enrollment window. AARP offers United Heathcare for example for people on Medicare. The caveat is that it might be harder to enlist if one is currently under care for cancer but I have a friend who was able to switch, while in cancer treatment, because she wanted to go to any doctor, anywhere, and not deal with PPO or HMO stuff.

The vague answer is " The cancer " which is dividing and residing in the pleural area , between lung and the ribs Supposed to be air in there, not liquid and it is horrible gasping for air , headaches , or trying to sleep , or just unloading a bag of groceries . No real answer has been given to me for that question . New doctors next week : pulmonologist and a new oncologist ! I'm excited and hopeful .

The vague answer is " The cancer " which is dividing and residing in the pleural area , between lung and the ribs Supposed to be air in there, not liquid and it is horrible gasping for air , headaches , or trying to sleep , or just unloading a bag of groceries . No real answer has been given to me for that question . New doctors next week : pulmonologist and a new oncologist ! I'm excited and hopeful .

I appreciate your ideas but have tried them already . I had my son & DIL , who both have MPH and also years of working in medical fields , and they are very frustrated now too . Having no clear treatment plan , and constant missteps and mistakes , are why I have now switched , new drs next week, fingers crossed I'll get some guidanceand real medical care . I was def trying to get away , as stated above , assigned medicare insur traps me for now. So beyond these suggestions, I am constantly being told to book my own appts , and guess when I need the next thoracentesis , etc . Filing a complaint gets you a form letter with a form apology , but no real change or accountability so far.

I appreciate your ideas but have tried them already . I had my son & DIL , who both have MPH and also years of working in medical fields , and they are very frustrated now too . Having no clear treatment plan , and constant missteps and mistakes , are why I have now switched , new drs next week, fingers crossed I'll get some guidanceand real medical care . I was def trying to get away , as stated above , assigned medicare insur traps me for now. So beyond these suggestions, I am constantly being told to book my own appts , and guess when I need the next thoracentesis , etc . Filing a complaint gets you a form letter with a form apology , but no real change or accountability so far.

First off if you just don’t like the doctor then I would look on the website for your insurance and see if there is another provider in your area.
Failing that, I would check and see if there is a nurse coordinator/patient advocate you can talk to. I would also, have someone with me at my next appointment. Another person listening can be a big help, also some doctors will be more open to questions if you write them down and have someone with you.
I really hope you can talk about your treatment plan and what YOU would like out of that plan.
Do you have someone who can join you, and listen in, help ask questions?