Monday check-in

I haven't posted as much lately because my chronic PHN (post-shingles) pain is what it is, at this point. No better, no worse. My palliative care doctor has run out of ideas to try, so I'm just trying to learn to live with it.

Did have some non-painful medical excitement over the last week or two. A brain MRI showed that the asyptomatic brain mets I've had since May have finally started to grow a little, so I'm now eligible for a clinical trial I've been trying to get into. However, the trial people are very hard to deal with, the new medicine now has a firm FDA approval date in early March, and the series of trips to the trial 3 hrs away would be in winter now, rather than summer.

There's another, already available medicine, ceritinib, a daily pill that controls or shrinks brain mets, but it causes vomiting, diarrhea, etc. until you get an individualized regime of immodium, food, zofran, etc. worked out. The next generation medicine, alectinib, is just as good for brain mets, without the gastrointestinal side effects.

Comparing quality of life, I decided I'd rather throw up for a week than deal with the trial doctor, LOL. So I'm asking my regular oncologist to prescribe ceritinib for the next few months, then switch to the easy-to-take alectinib when the FDA approves it in March, without needing to go through the clinical trial.

My wife and I didn't do much for Thanksgiving, mostly just put up Christmas decorations. The big thing I'm thankful for is that my kind of cancer has so many options for taking care of brain mets just with a daily pill (there are even more in clinical trials coming out later).

Hello All, we're in Texas and quite tired of rain! It ruined our annual Thanksgiving afternoon activity of walking around a local park and feeding the ducks. It's been more serious for some but seems to finally be winding down today.

I've recently had 2 weeks of a new type of pain. It started with low back pain that got really bad, the worst pain of my life for 2 days, then slowly got better using ice and anti inflammatory. I thought I was getting ok, so I did too much and it was back for another day, then slowly better again. At the worst I don't think I could have gotten in the car to go to the doctor or ER. I was so very thankful for a lift chair and a potty extension, plus my very helpful husband. I finally saw the doctor a week later and she thinks it is Sacroiliitis on the right side. I start physical therapy this week. I'm looking forward to getting educated on this-it was a new pain for me.

keep strong everyone.

Alcie, get your ears checked. I used to have a hard time because of one of the anesthesia meds dried me out too much and caused a problem with the fluid in my ears. Dizziness, nausea, etc. Hope that helps.

James, good to see you. Sorry to hear the shingles pain is still bad. Glad you are carrying on anyway!

I've obviously been spending too much time on the computer as those pains in my neck are coming back with a vengeance again. Waah! It's going to be a long winter!

awesome rick.

Still here. Still getting nerve 'zaps' down the leg. So much I want to do but, afraid of making it worse.

Hi all I hope everyone had a good Turkey Day last week! I finally got over my bout with Bronchitis with the help of antibiotics and a 5 day steroid dose pack. Today I got a bad looking mole removed from my right ear, I go back in two weeks to get the stitches removed and find out the lab results of the biopsy. For such a small quick procedure it sure does hurt like crazy after the numbing injection wears off! LOL!!

Anyway got my tree put up and decorated and all my outside and most of my inside decorations put up! Now it's getting time for my Christmas shopping and making my Christmas cookies and candy. My doctor gets a real kick out of my full white beard, and he always calls me Santy Clause! Ha Ha! or should I say Ho Ho Ho! So anyway today when I went to see him to get that mole removed, I dressed up in bright red ( shirt, hat, and jacket) and brought him and all his staff a big bag of pecan brittle that I made yesterday! Everyone seemed to enjoy it! This is my favorite time of year!

White Beard