Tuesday, March 26, 2019

It will be a while longer before I run another marathon

I had hoped that I will be able to get back to running and complete the 26.2 miles distance at the Chicago Marathon this year on October 13th. Even though it is 6.5 months away, my performance during yesterday's one mile walk/run near my home gave me enough proof to conclude that it is very unrealistic for me to aim to run a marathon this year. 

I have been off running since I got hit by a car back in June last year. I had a surgery on my left knee in July last year and got a metal plate embedded to compensate for the broken tibial plateau. Since then I have had 2 brain surgeries as well - my second craniotomy in July 2018, and my third craniotomy in January 2019.  

After being mostly inactive physically since June 2018, I started back on regular working out - mainly slow walking for 2-4 miles - early this month.

Yesterday, I tried running for the first time after 8 months. It was not an enjoyable experience. I couldn't keep up the striding action for more than 2-3 steps at a time. To my utter surprise even my right leg was being uncooperative during my short attempts at running. πŸ˜’ 

It might be that my body has totally forgotten the various movements of the muscles and bones, etc. to carry on moving at a pace faster than a walking pace.

I will have to meet my Orthopedic Surgeon for a followup appointment soon and also figure out the necessity for & the specifics of a Physical Therapy program to get me back to a running shape in the next year or two.

Motivation to run is not at all a problem. I am convinced that being physically fit is of paramount importance in my ongoing adventure with Glioblastoma. Here's hoping that I will succeed in overcoming the physical limitations and get back to running marathons in a couple of years.

Saturday, March 2, 2019

My Second Round of Radiation Therapy Treatments

I completed my second round of radiation therapy treatments yesterday (Friday, March 1, 2019). Thankfully I came through the treatment cycle without suffering any major side-effects or mental/physical deficits. πŸ™πŸ½πŸ™πŸ½

This round of treatments had significant differences with my first round of Radiation Therapy Treatments back in 2016-2017. A few of the differences are as follows:
  • The first round of treatments was over a period of six weeks from December 20, 2016, to January 31, 2017. The second round was over two weeks between February 18, 2018, to March 1, 2018.

  • The first round consisted of a total of 30 treatments. The second round had just 6 treatments.
  • The first round was with Conventional Radiation Therapy. The second round was with Cyberknife Technology.
  • Each of the treatments in the first round took about 10 minutes each. Whereas each of the treatments in the second round took about 45 minutes each.

Complications, Complications,...

My second craniotomy in July 2018 and the third craniotomy in January 2019 were both in the same area of the brain and far from the site of the first tumor and first craniotomy in November of 2016. 

After my second craniotomy, I was put on a maintenance chemo treatment. The tumor came back in less than six months confirming the fact that the maintenance treatment wasn't really helping. We got a second opinion from the Glioblastoma specialists at MD Anderson Cancer Center in Houston. They recommended that we treat the recurrence like a new tumor since it is in a new part of the brain, and hit it with all the available Standard-of-Care treatment options. Makes Sense.

So our Oncologist agreed to follow that advice and prescribed that we go through the standard treatment cycle of concomitant Chemotherapy while on conventional radiation therapy.

When we met with our Radiation Oncologist, it turned out going through a second round of SOC treatment after a recurrence is not as straightforward as we expected it to be. They took a couple of weeks to come up with a treatment plan and came back with a short cycle of treatments with a higher dosage of intense radiation.

In this phase of constantly changing plans, we ended up incurring a loss of over $2,000 because of the chemo tablets that our doctor prescribed (with a co-pay amount of over $2,000) were not going to be used with the new treatment plan. The co-pay amount is huge as it is still the beginning of the year and we haven't met the out-of-pocket maximum amount of our insurance.

We received the chemo tablets and were told to not use them after a day. πŸ˜†The pharmacy doesn't take back the tablets, So as of now we have enough chemo tablets for one round of treatment and might even use them should the doctor prescribe them in the future.

The current plan is for me to get Lomustine (chemo drug) administered intravenously starting in a few weeks. Definitely no more oral chemo tablets this cycle.

Advice for newly diagnosed:

Here are the lessons we learned from the experiences over the last six to eight months over two craniotomies:
  • Treat recurrences in a new area of the brain as a new tumor and start on the SOC treatment immediately after the surgery.
  • Ask for the best available options for Radiation Therapy Treatment from the outset. A treatment option that minimizes the area it affects allows for the patient to go with multiple rounds of radiation therapy treatments over a lifetime. This is very important as Glioblastoma tumors keep coming back. 😟Proton-Beam/Photon-Beam Radiation Therapy and Cyberknife are better than (and more expensive than) the conventional radiation therapy treatments.

The story so far

It has been a month since I decided to start a blog to journal my journey with Glioblastoma Multiforme after bei...