The Long and the Short of last Monday's Rush Visit

Hi everyone,

Here’s the latest news from my magical medical crazy cancer tour.

This past Monday, June 27, I was scheduled for an Avastin infusion for 30 minutes at Rush.  Supposedly, a relative short visit.  Somehow that elongated into 8 hours in the hospital.  I arrived for blood work at 10:00 a.m. and left the hospital at 6:00 p.m.

Here's how the time stretched out:

I have to have blood work and a urine sample done when I first arrive so they can analyze the results before they start me on treatments. The staff was running late.

Then I had to see Dr. Bonomi after he reviewed the blood work in order to get approval to make up the Avastin infusion mixture.  And we all know that appointments with him always take a lot longer than planned.  For this particular appointment, he was more concerned with my spinal issues than earlier visits and had someone schedule another consultation later that day with Dr. Marwaha, the radiation oncologist, after I finished the Avastin infusion.  This was a big surprise and really threw the day off course since nothing really changed from 11 days earlier when I had the spinal MRI and both doctors had a consultation based on that MRI.  I couldn't finish with Dr. Bonomi until Dr. Marwaha's resident came over to agree to set up the appointment with Dr. Marwaha for later in the day.

I was supposed to have my infusion done by 4:00 originally.   They got a late start. It didn't end until 5:00.  Then we were in Dr. Marwaha's office until 6:00 p.m.  All for naught.  Nothing had substantially changed in my condition and the reasons not to radiate the legs remain the same:  There is no concentrated place of cancer in the spine where they can focus the radiation; I'd have to be off both the Tarceva and Tagrisso during the whole 10-day course of treatment; and I'd have to be completely off of the Avastin for some time before having radiation because they are not always compatible and could be dangerous if taken together.

My next appointment is in three weeks, July 18, and will include an MRI to the brain and another Avastin infusion in addition to blood work and appointments with Doctor Bonomi and Dr. Marwaha.  Another very long day at the hospital.  Ugh!

Meanwhile, I continue to have my battles with my gastro-intestinal system.  As Roseanne Rosanna-Danna would say, "If it's not one thing, it's another."

I continue to get physical therapy twice a week for 45 minutes at a time.  I now have leg braces to help strengthen my legs, but so far, my legs seem to only be getting weaker. I can’t pull myself up and down the stairs without one or two people physically moving each foot up/down each step.  Hopefully, the PT will help me get stronger, but it sure isn’t happening very fast!

Hopefully, I will have no further news until the July 18 visit.

Coming up to speed with what's been going on

Hi everyone,

I know it has been a while since I shared a detailed medical update, but I’ll bring you all up to speed now on what’s been going on for the last couple months.

I’ll start with the visit to Rush in May.   I had a CAT scan to the lungs that showed stability and a little bit of reduction in the number and size of lesions in the cancer in the lungs.  That was good news, but my focus was really on the continual degradation of my legs and my inability to feel my left leg and foot and the start of losing sensation in the right foot too.  The only solution they had for me was that hopefully the Tarceva would reduce the cancer in the meningeal lining of the lower spine and that I should keep doing the physical therapy to make the muscles and nerves rebuild.  This was not a satisfying answer for me.

I had a consultation with a radiation oncologist to find out if radiation to my legs would help them heal.  Essentially, he said that radiation would not likely offer improvement, but would be something to consider to prevent the legs from getting worse.  We decided to keep radiation on the backburner among our treatment options.

Dr. Bonomi decided to have me start getting an Avastin infusion as a booster for the Tarceva.  Avastin isn’t a chemotherapy drug, but works with chemo drugs by cutting off the blood supply to the lung cancer cell and starving the cell.  I have only had two infusions so far so it’s too soon to tell if it is doing any good.  However, the tumor markers in my blood jumped significantly, which the doctor suspects is a reaction to the Avastin. 

In early May, I had a fall when I lost my balance on my walker.  At the time, everything felt and looked fine – no damage done.  But a few days later my left calf and shin and both feet swelled up to the point the skin was purple and blue and the tissue underneath it was rock hard with no give at all.  While I was at physical therapy later on, the doctor who works there looked at my feet and legs and sent me to the emergency room to have them x-rayed to make sure there was no fracture or tear.  The good news is there wasn’t – just a sub dermal hematoma (deep bruise).  The better news is there was no sign of a blood clot, which I’d acquired while in the hospital in March.  It’s the blood thinner I’ve been on for the blood clot that caused the delayed reaction of the bruising to the fall.  In spite of the blood clot being gone, I still need to get the daily blood thinner shots for another few months to make sure the clots don’t come back.

For this month, my feet have gotten progressively worse and last week, it took Doug and both of his parents to lift my feet from step to step going up the stairs.  I can’t feel my feet at all and have to be careful not to let one step on top of the other or trip as the tips of my toes get stuck on the floor. I got braces for both of my legs as part of PT to give me more strength and stability.  I think they make a little difference, but not a lot.  My “daytime” physical therapy finished yesterday. From now on, I am at “outpatient” physical therapy twice a week for 45 minutes each visit, still with the same PT provider organization. 

In spite of the outward problems I am having with my feet and legs, the MRI scan I had on Thursday of this past week showed stability in the meningeal lining of the lower spine and may even indicate a slight improvement in the amount of lesions there. Dr. Maurerwa, the radiation oncologist, sat in with us to look at the results of the MRI to the spine and we all once again agreed it wasn’t the right time to do radiation to the legs.  Dr. Bonomi decided it was time to add Tagrisso to the cancer treatment mix along with the Tarceva.  The idea behind this is that the particular medications in Tarceva work well for the mutations in the brain and the spine.  The Tagrisso medication has a lot of success with the lungs and other areas where the cancer has metastasized.  The hope is that, between these two drugs, all the cancer in my body will be kept under control.  It’s a new frontier in the cancer landscape so we are just experimenting to see what will work.

The fact that we don’t have a pre-defined path for treatment is disconcerting to me.  But I am glad the medical staff is willing to try new things to help me get better.

So that’s what’s been going on with me.  It has been a very challenging time and there has been some rough news to process. I’ve been given little hope by some medical practitioners that I will walk again.  But Dr. Bonomi still keeps that as a goal.  At least I got that going for me.