MRI Results Dec 2016

Dear ones,

The result of the MRI on 12th December shows that the tumor is stable and there is no increase. Although the report did not show a reduction, Dr. Landolfi said that this is good news as there has not been an increase in the tumor for the last three reports. They have so far been successful in their objective to contain the tumor.

It was exactly one year ago that I had my first MRI on 10th December 2015. After one year of treatment, I can say that I am on the road to recovery. I am so grateful to everyone for their prayers and good wishes that have help me and my family in these difficult times.

I am gradually getting more confident in living with my symptoms of impaired vision and slight dizziness. I am able to move about with much more ease at home and my office. I am still, however, unable to drive or venture out on my own.

I have been granted permission to visit India between my next two chemo cycles. I will have my 8th chemo cycle from 19th to 23rd December. I will leave for India on 29th December and will return to the US on 24th January, in time to start my 9th chemo cycle.

I am looking forward to my trip to India and I am excited to meet friends, family and colleagues at work. I am sure that I will return happier and healthier!

My next MRI will be on 20th February 2017.

I wish you a very happy and health 2017. Hoping to see you all next year!

MRI results Oct 2016

My latest report shows a further reduction in the size of the tumor. The doctors are happy because it shows that the treatment is working. Dr Landolfi has asked me to take two more rounds of oral chemotherapy (Temozolomide 370 mg caps) 5 days a month for two more months. These will be the 6th and 7th rounds of chemotherapy. The doctor generally does anywhere from six to twelve rounds of chemotherapy. The next MRI will be on 12th Dec. to decide further course of action.

 

Although I have a concern about the side effects of the chemotherapy, I will continue with the prescribed course along with the alternative therapies which I have been doing so far. I hope and pray that the trend of reduction in the tumor will continue in the next report. In fact, it will be great to see it disappear completely. Keep me in your prayers and blessings.

MRI Results Aug 2016

Dear ones,

 

The results of the MRI performed on 01 Aug 2016 came as a pleasant surprise after the not so good results in July. The report showed that the tumor size has reduced again. The doctors are pleased with the results and have decided to continue treatment with the same chemotherapy drug - Temozolomide capsules 5 days per month for two more months (4th and 5th cycle) and then repeat the MRI on 3rd October.

 

I hope and pray that my symptoms of dizziness and mixed vision also reduce over time to improve my functionality and comfort level.

 

Thank you for being with me and my family in these tough times.

 

Regards,

Hasit

MRI results July 2016

Dear all,

I received results of my latest MRI during an appointment with neuro-oncologist Dr. Landolfi on June 29th.

The images show mild enhancement of the lesion in one dimension. In doctor's words, it looks more rounded and about 2mm larger in width.

Meanwhile, my symptoms are stable and energy level is good. Hence the doctors believe it may be inflammation from the radiation+chemotherapy treatment itself and not necessarily tumor growth. This is a common scenario during first few months of treatment.

We are going to continue with one more 5-day round of chemotherapy (higher dose) starting July 5th and repeat the MRI in first week of August. A PET scan will also be done in last week of July. Results of these tests will determine future course of treatment.

I also met with neuro-opthalmologist Dr. He on June 30th. She noticed improvement in vertical alignment of my eyes hence no double vision. She did not notice much change in lateral movement of my eyes which is still bothering me.

Thank you for your blessings and prayers.

Sincerely,
Hasit

Two More Cycles of Chemo Completed

Dear ones,

Since my last post, I have finished two 5 day cycles of double dose chemotherapy with the second one ending on 4th June 2016. As expected, the chemotherapy was accompanied by the usual ups and downs and side effects of nausea, loss of appetite and constipation. During the last cycle, I also felt that my symptoms were aggravated on some days.

When I met my neuro-ophthalmologist on May 3rd, she placed a temporary prism sticker on my glasses to see if they correct my vision issues. However, after a few days of trial, I removed it since I felt my vision was better without the prism.

During the Memorial Day weekend, I attended a four day mediation retreat which gave me a much needed break from the continuous stress of my medical condition.

Meanwhile, my nephews in London and India and my son in San Diego paid me a surprise visit. They stayed with me for a few days and their company brought a lot of activity and excitement at home. It is this love and affection that keeps me going.

I am now awaiting my next MRI on 27th June followed by meeting with my neuro-oncologist on 29th June to know the impact of the follow-up chemotherapies.

I hope that the tumor keeps shrinking which will hopefully reduce the symptoms of mixed vision and dizziness to a level at which I will be comfortable.

Please keep me in your prayers and blessings, as always.

Yours lovingly,
Hasit

MRI results April 2016

Dear all,

It is now 4 weeks since my last dose of chemotherapy and radiation. During this rest period, I have steadily recovered from the side-effects of the intense treatment including gaining back of 4 lbs I had lost. My energy levels are close to normal too.

Today, I finally had the long-awaited meeting with my neuro-oncologist Dr. Landolfi to discuss the repeat MRI scan results. I am pleased that the tumor has shrunk by over 30% since the first MRI in December 2015. Dr. Landolfi said they would have been happy even if there was no growth in the tumor and the reduction in size is a pleasant bonus.

This MRI result is a welcome sigh of relief in this tough battle. I am confident that my health will continue to improve with your prayers and blessings.

The next step is to continue oral chemotherapy for 5 days a month. The daily dose will be twice what I took during the 6-week course. There will be a repeat MRI every 2 months. Based on this, my next MRI is scheduled for the week of June 27th.

Meanwhile, my original symptoms of impaired vision have marginally improved but continue to bother me and affect my daily activities. I have an appointment with the neuro-opthalmologist Dr. He on May 3rd to check if she has any solutions to improve the vision.

Yours Lovingly,
Hasit

Radiation & Chemotherapy Complete

Dear ones,

Finally, I have completed my 6 week treatment of radiation and chemotherapy on 24th March! The side effects gradually increased as the treatment progressed and the last 2 weeks were tough. I experienced nausea, loss of appetite and constipation which often bothered me more than the original vision symptoms.

Nonetheless, my weekly blood reports stayed in the normal range throughout the treatment. I also had weekly appointments with my radio-oncologist. He mentioned I was doing very well - much better than average. I did not need to take a single steroid and my radiation & chemotherapy doses were completed without any mishap or break.

My original symptoms fluctuate on a daily basis but are more or less the same.

Meanwhile, I continued to take Ayurvedic medicines & Marma therapy, practice Sudarshan Kriya & meditation, pray & chant. These supplementary practices have immensely helped me cope with this challenge.

My next MRI is scheduled for April 18th followed by an appointment with my neuro-oncologist Dr. Landolfi on April 20th. I will rest and continue parallel treatment during this 3.5 week break. The doctors have mentioned that the symptoms are likely to subside during this rest period. I am praying for a positive result of this treatment - I hope that the symptoms reduce to a level that stops bothering me.

Lastly but most importantly, your inspiring messages, prayers and blessings are giving me the strength & courage to fight this disease. Please continue to send your prayers and blessings for a positive outcome.

Yours Lovingly,
Hasit

Radiation & Chemo - Update after 2.5 weeks of treatment

Dears,

I am now 19 days in to the treatment. With your blessings and god's grace, I do not see any major side effects. I do feel a little tired at times and some loss of appetite.

My original symptoms of impaired vision and dizziness still persist. Every day is different - some days I feel a little worse and some days I feel a little better. Overall, I think there is a marginal improvement.

I believe that my spiritual practices (Sudarshan Kriya, meditation, chanting), ayurvedic supplements, sattvic diet and the love of family & friends are helping my recovery.

My sincere thanks for your continued support and prayers that help me stay positive. Please continue to shower your blessings.

Yours,
Hasit

Radiation & Chemotherapy Sessions Started

Dears,

I have completed my first 2 days of Radiation and Chemotherapy. The radiation appointments are quick and smooth - take less than 10 minutes. I am settling in to routine for this treatment and doing ok so far.

I am looking forward to relief from my symptoms with the 6 weeks of treatment. Please continue to shower your blessings and keep me in your prayers.

Yours,
Hasit

UPDATE : Radiation & Chemotherapy

Dear All,

I had an appointment with the Radiation therapist this morning at the JFK Hospital in Edison, NJ. A custom mask was made for the purpose of radiation therapy. My schedule (attached in this post) starts from Thursday, 11th February and will be a targeted 6week (5days/week) regimen. The radiation will be simultaneously complemented with chemotherapy (Temador) 7days * 6weeks.

Post this treatment, I will take a 4week period to reassess through imaging / further tests, the status of the disease and the road ahead will then be decided by my doctors.

I have been feeling better for the last couple of days now without the treatment even starting. I know and believe that this is a direct impact of all your prayers, good wishes and spiritual practices.

Let's hope this continues. Do keep me in your prayers.

Yours,

Hasit.

First meeting with Radiation Oncologist

Dear all,

On Feb 2nd, I met Dr. Steven Zarny, the radiation oncologist at JFK, who will lead my radiation therapy. He studied my case to decide the next steps.
http://www.healthgrades.com/physician/dr-steven-zarny-x68h6

I will be going through Image Guided Radiation Therapy which will require that a mask be made of my head to ensure precise targeting of the tumor.  He will meet me again on Thursday, Feb 4th to start preparation of the mask. After the mask is prepared, the dosage, frequency and pattern of radiation will be determined per protocol and approved by the doctor. This planning stage will take about one week. So, radiation is expected to begin around Feb, 11th at the earliest.

In the meanwhile, I will meet Dr. Joseph Landolfi, the leading neuro oncologist at JFK who will supervise my entire treatment, including chemotherapy.
https://jfkmc.org/clinical-services/nj-neuroscience-institute/njni-institute-personnel/joseph-c-landolfi

My symptoms of dizziness and double peripheral vision persist. I am able to eat, talk, think well and my memory, comprehension and cognizance is also fairly intact. However, I have trouble maintaining balance when I walk. I am currently using a walker for support.

It has been extremely heart warming and gratifying to see so many blessings and wishes pouring from family, friends and colleagues at work. It makes life worth living!

Please continue to keep me in your prayers and blessings.

Yours,
Hasit
 

Post Biopsy Report and Discussion

Dear ones,

The doctors have diagnosed it as a malignant, aggressive tumor which needs immediate treatment by radiation and chemotherapy.

Treatment is expected to be for 6 weeks followed by a review.

I plan to start the radiation and chemotherapy at JFK neuroscience institute under the guidance of the doctors at Columbia.

Yours,

Hasit

Discharged and waiting for biopsy results

Dear ones,

I was discharged from Columbia hospital on Sunday, January 24th. I will meet Dr. Iwamoto on Friday, January 29th at 10am EST to discuss the biopsy results and future course of action. I will also meet Dr. McKhann to remove stitches and follow up on my recovery from surgeries.

Best Regards,
Hasit

Ventriculostomy and Recovery

Dear ones,

My ventriculostomy was successfully completed by Dr. McKhann on Thursday, 21st January 2016. The surgery went without incident and the doctor was able to create a good cerebral spine fluid drainage path without the need of an external shunt which would have been a riskier option.

I have started walking around in the hospital with limited aid and continue to recover steadily to improve my balance and movement. 

Meanwhile there is a huge blizzard on the east coast that keeps me at the hospital. I hope to be discharged on Sunday (24th Jan) or Monday (25th Jan) at the latest.

The results from biopsy are expected early next week - this will determine the future course of treatment.

Thanks for your blessings and prayers that are undoubtedly helping my surgeries and recovery.

Best Regards,
Hasit

Biopsy Update

Dear All,

My biopsy was successfully conducted on 19th January 2016 by Dr Guy McKhann at the Columbia Presbyterian Hospital in New York City. I am steadily recovering from the surgery. Thanks again for your blessings and prayers.

The initial frozen biopsy has confirmed the presence of a tumor in the pons area of the brain. However, the final results that will determine the treatment will be available thru a permanent analysis in a week.

In the meanwhile, Dr. McKhann and Dr. Iwamoto (neuro-oncologist) have recommended a ventriculostomy - creating of a hole in cerebral ventricle for drainage of cerebral spine fluid. This is a 2-3 hour procedure that will help avoid risk of fluid build up during future treatment which is very critical.

We have scheduled this surgery for tomorrow 21st January 2016 in the afternoon at Columbia.

Yours Lovingly,
Hasit

History and Current Status

Dear family and friends,

I have started this blog so that I can reach out to you and keep you posted on the recent neurological challenge that I am facing. As I undergo tests for diagnosis and will soon commence treatment it will be difficult to talk to each and everyone and provide updates. Nevertheless, my family and I seek your blessings to help us sail through the difficult times that lie ahead. This blog will serve as a common platform for us to stay in touch and support each other. Please keep checking as we will regularly provide updates.

So here is how it all began...

I returned to the United States from India on 19th Nov 2015.

While in India, I had started experiencing slight dizziness and impairment of peripheral vision. I thought these were probably due to changes in my eyesight and thus got it checked and changed my glasses. However, my symptoms persisted.

On 25th Nov 2015, I met my primary care physician (PCP) in the US. He referred me to an ophthalmologist and ENT specialist. He suggested that if visits to these doctors do not help then I should get an MRI (without contrast) of my brain.

On 30th Nov 2015, I met the ophthalmologist who detected that there was a problem with my peripheral vision and also suggested that I get the MRI.

On 01st Dec 2015, I met the ENT specialist who did not detect any problem with my ears and also recommended the MRI.

I got the MRI approved from my PCP and got it done on 10th Dec 2015 at JFK Medical Center (JFK)  in Edison, NJ. The results of the MRI showed a lesion measuring 2.4 x 1.7 x 1.5 cm in the brain stem, in the pons area to be precise.

On 14th Dec 2015, my PCP performed a blood test, the results of which were normal. He referred me to Dr. Stephen Bloomfield, a neurosurgeon at JFK neuroscience institute (JFK).

On 16th Dec 2015, we met Dr. Bloomfield for the first time. Upon looking at my MRI reports, he suggested that I get another MRI, this time with contrast, a chest X-ray and a CT scan of the abdomen and pelvic region.

On 20th Dec 2015, the X-ray and CT scans were performed, both of which were unremarkable.

On 22nd Dec 2015, MRI with contrast was performed.

On 23rd Dec 2015, I met Dr. Ming He, a neuro-ophthalmologist at JFK who reviewed the results of my MRI with contrast and confirmed that my vision problems were due to the lesion seen on the scans.

On 29th Dec 2015, I met Dr. Bloomfield again and he reviewed my 2nd MRI scans with me. He suggested that a stereotactic needle biopsy would be the best option to diagnose the lesion. I was also asked to stop driving and I have not driven since then. I asked him to suggest another doctor whom I can approach for a second opinion. He recommended that I can meet Dr. Michael Sisti, a neurosurgeon at Columbia Presbyterian Hospital in New York City (NYC). This hospital is one of the top 5 neuroscience institutes in the United States.

Prior to the onset of my illness, we had planned a family vacation to Puerto Rico from 30th Dec 2015 to 4th Jan 2016. After much thought and discussion with the doctor, we decided to go ahead with our plans and take the time off. As it is, doctors were also on vacation during that time.

On 7th Jan 2016, we met Dr. Michael Sisti at Columbia. He introduced us to Dr. Guy McKhann also a neurosurgeon who specializes in needle biopsies. Dr. McKhann suggested that before the biopsy, I undergo a spinal tap (test of the cerebrospinal fluid (CSF)). Testing the CSF, he said, may diagnose and could possibly help avoid a biopsy.

On 8th Jan 2016, I met Dr. Fabio Iwamoto, a neuro-oncologist at Columbia, who performed my spinal tap. He suggested I also undergo a PET scan.

On 14th Jan 2016, my PET scan was performed. I met Dr. Iwamoto that evening and discussed the results of the spinal tap and PET scan. The spinal tap was normal, thus indicating absence of infection, inflammation or demyelination. The PET scan indicated a tumor. Therefore, it was decided that a biopsy cannot be avoided and will have to be performed as soon as possible.

On 15th Jan 2016, I met Dr. McKhann and underwent pre-biopsy procedures and tests. My biopsy is now scheduled for 19th Jan 2016 at 09:00 AM EST at Columbia.

- Hasit