Bad News comes our way ...

I had my most recent follow up Brain MRI scan on Wednesday May 29, 2019. This the regular check while I am on the post surgery treatments after the brain surgery (my third one) on January 9, 2019. 

With no observable symptoms so far, I had reasons to be very optimistic that this MRI will be another of those routine procedures I go through on regular basis. Hence I was in a very jovial mood when I headed to the Foothills Hospital for the MRI last Wednesday. 

Over the next few days I started seeing signs that this wasn't the normal flow of events. On Tuesday, June 4th I observed the first symptoms attributable to Tumor growth. All of a sudden, I started feeling dizzy and un-coordinated. Luckily this happened while I was at home in the evening and not when I had traveled to Boulder in the afternoon.

We got the confirmation about the bad news next day at our follow up appointment with my NeuroOncologist Dr. Mark Barnett.  Dr. Barnett confirmed that the news from the MRI was bad indeed and that the tumor is back with a vengeance. 

Here is the summary of the MRI Lab technicians report about my most recent scan:

Impression:

1.  Interval progression of glioblastoma multiforme since March 29, 2019.
2. Left parietal enhancing neoplasm appears significantly larger especially along the anterior component with increased extent crossing the corpus collasum into the right parietal lobe.
3. Right Temporal lobe subcentimeter nodular enhancing foci again noted in the post surgical region.
4. 2 new nodular enhancing foci in the right basal ganglia.
5. No Midline shift, herniation or acute infarct. 

It does seem scary and it did indeed scare the willies out of me. It seems like my end date got a good bit closer and clearer with this newer developments. 

Dr. Barnett is exploring the possibility of getting me onto a Clinical Trial at CU Anschutz Medical Campus in Denver. If that does not come about, the fall back as of now is to start treatments with Avastin (bevacizumab).

Hoping and praying for the best while keeping a positive outlook and being as optimistic as possible. 

Continuing with Physical Therapy and Chemo Therapy

This bench at a neighborhood park will be my best friend over the next few weeks/months. 😆

I discovered a few days ago that it is impossible for me to step on to this bench with my left feet on the bench. No problem whatsoever with stepping up onto the bench with my right foot. 

The difference between the two legs is that 

(a) I got hit by a car last June that resulted in a broken left knee. And that led to 

(b) a surgery on the left knee to insert a metal plate in the knee to compensate for the broken tibial plateau.  

The injured left leg is still very weak 10 months after the surgery. While trying to step up onto the bench with my left leg, my body refuses to transfer the full weight from the right leg on the ground to the left leg on the bench. I was able to identify this deficit and understand what was happening thanks to the weekly Physical Therapy sessions I am undergoing over the last few weeks. 

Even though I was advised to start on physical therapy immediately after the knee surgery, I had ignored it for some reason or the other. Trying to run again early this year and failing miserably at that effort made it clear that I need to get help from qualified professionals. 

I will have to strengthen the muscles in my lower leg and around the knee to be able to run again soon. Lot of Leg Presses and Lunges and Squats in my near future in an attempt to strengthen my lower leg and knee. 💪

Last week I took the second dose of Lomustine (3 tablets totaling 180mg for chemotherapy) after the first dose taken six weeks ago. The weekly bloodwork came back normal during each of the six weekly hospital visits. Hope the same trend continues through the following cycles of chemotherapy. 

I have a follow up MRI scheduled for next Wednesday May 29th that would let us know how all of the treatment since my third craniotomy in January 2019 - Radiation Therapy, Optune, Chemotherapy - are impacting the surgery bed area in the brain. 

Praying and hoping for a clean bill of health next week. 

Started Optune, Chemotherapy, and Physical Therapy

We had many visits to various medical offices over the past few weeks. More than the usual fare. That is normal life for a Glioblastoma patient who also happened to break his left knee last June. 😅

Since my third brain surgery on January 9th, 2019, I completed my second round of Radiation Therapy on March 1st, 2019.

It does look like my body has been able to tolerate the new round of radiation therapy very well. Only complaints so far seems to be short spells of fatigue once in a while, and a couple of no-hair-here bald spots on the top of my head.

Second round with Optune:

I am a strong believer of the benefits of Optune for Glioblastoma patients, as evidenced by my earlier statement: I like being alive. So I will wear Optune always forever. I was using Optune for over 90% of the day everyday for nearly 16 months from March 2017 to June 2018. 

In June 2018, I had my first recurrence. At that time, my confidence in Optune was severely shaken, and I decided to stop using Optune. 

Very recently I changed my mind about Optune and decided to give it another shot. The original tumor site has been very stable. The recurrence was in a totally different part of the brain. This makes me believe that my aggressive usage of Optune did help. And it could still help keep the tumor at bay for a few more months/years. 

Started this round with Optune a week ago, and have been able to seamlessly incorporate it into my daily life very quickly.

Chemotherapy with Lomustine:

The chemotherapy treatments this time also has been totally different from the daily Temozolomide tablets I used to take during my previous rounds. 

This time I take 180mg of Lomustine tablets orally once every six weeks. Lomustine is said to be a slow-acting drug, and could cause blood-counts to drop rapidly towards the end of the six-week-cycle. My Oncologist has arranged for me to visit the office for blood-work every week while I am on this treatment - to keep an eye on my blood-counts. 

I also got a Pulmonary Function Test done before starting on Chemotherapy.

The first dose I took early this week seemed to make me mildly nauseous the next day. 

Physical Therapy:

My attempt at starting to run again failed miserably with a very stiff right-foot. That made me finally pay heed to the advice my Orthopedic Surgeon has been giving about starting Physical Therapy. 😆

Turns out my totally inactive life-style since the knee injury last June has made me stiff in many parts of my body. Regular stretching exercises and some good habits around fitness and stretching should get me back on the road very soon. 

It does look very realistic that I will be able to train for and complete the 26.2 miles distance at the Chicago Marathon on October 13th this year. 💪🏽🙏🏽‬ 

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. 😒 

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.

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. 🙏🏽🙏🏽

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. 😆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.

My Third Brain Surgery - Wednesday, January 9, 2019

The New Year of 2019 started off for us with my Third Brain Surgery on Wednesday, January 9, 2019.

Here's the complete history of my journey with Glioblastoma Multiforme so far:

1. Initial diagnosis and First Brain Surgery on Monday, November 14, 2016.
2. Second Brain Surgery on Thursday, July 19, 2018.
3. Third Brain Surgery on Wednesday, January 9, 2019.

Yes. I am a veteran Glioblastoma Patient, a Survivor, and a Thriver! 

The third brush with an invasive surgical procedure went very smoothly for us. Our experiences and learnings through the three surgeries have helped us take out all of the unproductive hand-wringings, fears, and mental games leading up to the surgery, and deal with the situation just as it unfolds in front of us. Powerfully. With Choice.

We got to know of the need for surgery on Wednesday, November 28th, 2018 at our follow-up appointment with NeuroOncologist. The 2.5 cm tumor at that time grew to around 5cm by Late-December/Early-January. That necessitated a third brain surgery and, it was promptly scheduled for Wednesday, January 9th, 2019.

Everything went smoothly with the third craniotomy, and I was back home after two nights resting and recovering at the hospital. Very glad we have taken the dread and horror out of this and can treat it as a simple medical procedure - almost of the off-the-counter-nature. 😆

When I was recovering at the hospital on Thursday the day after the surgery, the attending nurse sprang a pleasant surprise on me by bringing up the topic of Genetically Engineered Bunnies. That is a reference to my previous blog-post - http://www.braincancerchronicle.com/2018/12/genetically-engineered-bunny-with-sleek.html

That was funny. And interesting that folks working on my care have read my blog.

One Key Lesson from my experiences so far for fellow GBM patients:

When there is a new recurrence in a different area from the original site, it is best to treat it as another primary tumor and go through with the full SOC treatment cycle to better the odds.

We missed out on the aggressive option after my second surgery and went with a maintenance treatment plan which proved to be totally useless. Now that we are back at the end of a full-resection, our plan is to start on the Standard of Care Treatments - Chemotherapy, Radiation Therapy, and Optune over the next few months to throw every available solution at the monstrous disease that Glioblastoma is.

This morning I was at able to attend the Sunday Morning Meditation and Reading Services at The Boulder County Meditation Circle, and participate in all of the activities with near-full energy. I think it is safe to say I am through with the lows of surgery and back to full health, ready to take on life!

An interesting occurrence during this period that amused me no-end is the total-disinterest my five-year-old daughter displayed all through the three days of my hospital stay. Steadfastly refusing to visit me at the hospital and keeping herself busy making plans for when her cousin visits her in the next few weeks, she made it really easy for us to go through a potential troubling time. 👶

Genetically Engineered Bunny with a sleek & aerodynamic body and other oddities

Earlier today afternoon, as I was walking behind our apartment building, I noticed one of the many bunnies of our Apartment Complex sitting close to the sidewalk. 

It looked very odd at first glance and made me go: 

"That's weird. The bunny looks very thin and sleek. It looks almost like a cardboard cutout. 

With such an aerodynamic body, it should be able to move very fast! 

Where did it come from? I have never seen it before in our area. Has anyone been conducting Genetical Engineering experiments on the neighborhood bunnies?"🤔

The unusual sight made me pause my walking and give the bunny a more thorough look. After a moment or so, the rabbit turned into a regular rabbit with a plump body, and I was assured there was no hanky-panky going on among the rabbit population in the neighborhood. 

It was just my eyes - with the help of a 2.5 cm long tumor in the brain - playing tricks on me. The growing tumor might be causing some pressure to build up on the optic nerves leading to temporary visual issues. Glad it turned out to be a fleeting experience and not an ongoing/permanent problem with my eyesight.

That is another symptom to add to the list since the tumor was identified in the MRI 31 days ago on November 20, 2018. The complete list of symptoms observed so far:

• Feeling of lightheadedness occasionally - lasting just a few seconds each time.
• One violent episode of projectile vomiting on our Houston trip last Saturday that I wrote about in the previous blog post. Traveling stresses could have contributed majorly to this.
• One instance of slurring while talking which my wife (a qualified medical professional) noticed while we were at a restaurant for dinner. Even though I wasn't convinced there was anything wrong with me, we left the restaurant immediately with the idea of getting it checked out at an emergency center. On the way there, we decided to wait overnight and confirm there is an immediate problem before going to the hospital. It seemed like a good night's sleep made me feel better; so we dropped the idea of going to the hospital.
• Today's episode of seeing a bunny with an unusual shape. At least I do not see a human-size bunny like Donnie Darko did. 😆 

At the second-opinion-consult last week, the MD Anderson folks suggested Radiation Therapy targeting the new tumor growth as the way forward for me. Dr. Shiao-Pei Weathers called us yesterday morning to update us about the discussion of my case at their Tumor Board meeting and informed us that I should undergo surgery first and then undergo Radiation Therapy treatment. 

My oncologist Dr. Barnett was not expecting this advice about the need for surgery so close on the heels of my previous surgery. He is of the opinion that the Neurosurgeons won't be ready to operate in the same area where I had my previous surgery less than 6 months ago. Another reason he is not in favor of surgery is the increased risk of collateral damage from any aggressive treatment on this tumor which is located close to the motor cortex & the sensory cortex.

He has anyway reached out to Dr. Sharad Rajpal - the Neurosurgeon who did both of my craniotomies so far - asking him if he will be ready to perform the third craniotomy on me in the next few weeks. 

I am scheduled for another MRI two Fridays from today - on January 4, 2018. Decisions about the future course of action - surgery and radiation therapy, or just radiation therapy with chemotherapy, etc. - will be made based on the findings in that MRI.

With this being the holiday season, everything is moving very slowly. Hopefully, the tumor will stay stable until appropriate actions can be taken. And not end up growing uncontrollably giving me a glimpse of the Killer Rabbit from Monty Python and the Holy Grail. 🤣🤣