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.

No comments:

Post a Comment

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...