Remission - What Worked For Me

And I didn't mention it, but one thing I do is pray daily. It helps a lot.

I had a few glorious wonderful amazing months off of ALL MEDS! I had energy and felt AMAZING. It was a good run for two months. I even joined and attended a boxing class three days a week at my gym!

Now my tumor markers have gone up 5 points (from 37 to 42) and the liver marker numbers (AST, et al) are trending upward, so I'm back on letrozole - but only a half a pill every other day. It's keeping me healthy and keeping away the side effects. It's important not to live in fear, but also be practical.

Oncologists get $4500 for one shot of xgeva, $750 for one visit, and $50 per generic letrozole pill. My pharmacist has his own pharmacy and lab too, so he's making bank. When my health insurance changed and I no longer received my xgeva shot at his office (where he made the money) and instead at the hospital (where the hospital made the money) he said the xgeva shot only makes a marginal benefit to patients with bone mets and that I could stop any time I wanted (because otherwise his office has to do work and send the referral to the hospital every month).

My doctor said as long as I take around 14 days of letrozole in a month, I'll be all right because it stays in your system that long.

I WILL note however that just a week after getting back on letrozole (the half pill dose) I started to have difficulty walking, back pain, nerve pain, and stomach pain again.

Letrozole can be halved and quartered (but buy a proper pill splitter for that, because the pills are tiny). They prescribe letrozole to men with big breasts (moobs) who want them to go away. If you check out those forums, those guys split the pill into 1/2, 1/4, 1/16 even! They lower the dose when they start to feel size effects.

Men would never tolerate the misery we women put up with in our cancer treatment.

I'm not worried about experimenting on myself. I have stage 4 cancer. The meds are hard. The docs want to suck every last penny out of you, so they need to keep you alive. It's gotten to the point where if I complain about a side effect I just get told to basically suck it up and be grateful to be alive. I value quality of life over quantity. Better a glorious day than a decade of crippling pain from either cancer or the side effects. And honestly, the docs are basically experimenting on you anyway. Better you, you are the only one who has your own best interests at heart. My doctor confessed that the results with Ibrance and Femara are basically unknown, but he could not advise me to go off the meds because of liability reasons. So a lot of the advice we as patients get at this point is to prevent a lawsuit. It is either for a doctor to follow the standard prescription guidance path (which provides legal coverage under the "standard of care" principal) than to take a patient's individual situation and beliefs into account and risk a lawsuit if it all goes wrong.

I can't walk I can't walk I can't walk

Talked to the doctor, got my test results.

Bone scan looks "good". CT scan shows multiple (dozen or so) 2 cm nodules in the lungs.

Off Femara. Official, now that I've spent $500 on a brand name bottle. Ironic.

Med change next week to Faslodex shots + Ibrance.

As far as exercise, I am still doing yoga three times a week. Some weeks only once or twice. But still doing it.

Has anyone done this regimen before? My doc says the Faslodex won't take away walking ability. But I've found that a doctor's definition of "walking" and a normal person's are totally different. Any advice?

Sarah

I was on Kisqali for two cycles. It seemed to work better than Ibrance, but then the same side effects appeared, stronger and faster than they did with Ibrance. This was despite going from 3 pills in cycle 2 to 2 pills in cycle 2.

For some reason, I have difficulty walking on Ibrance and Kisqali. My doctors initially said it wasn't a legit side effect, but two years of on and off and they are convinced that those medications are responsible.

That's why they started me on Doxil on Friday. I had a strong allergic reaction (chest pain, inability to breathe, flushed face, coughing), but the doctor wants me to continue with pretreatment (dexamethasone, benedryl and hydrocortisone). Already the nausea is starting. Well, if I can still walk, it will (I think..) be worth it..