Monday, February 13, 2012

Medical History:- (updated on 4 Feb 2012)

Feb 3 – Temodar
Feb 2 – ProtonCure
Chemotherapy (Avatin) + novocure + ProtonCure (radiation therapy + Temodar – 4-5 week)
Jan 25 – novocure started
Jan 23:  I went to the Proton Therapy Center and completed the CT simulation, it will take about 10-12 business days for the planning team to complete my treatment plan.  A member from the team will contact me when the plan is ready and will schedule my treatment sessions.  At this point they anticipate it to start the week of February 1st.  The proton therapy has been approved by my insurance.
I understand that you will be scheduling the times for my medications once I start the Proton Therapy. 
Will you email me the medication name and the times I should take those medications.  I will be free tomorrow if you want to contact me and I will try to have my friend Elsie be part of the conversation with you. On Wednesday, Thursday, Friday, I am booked with appointments, but I will be free on Saturday again.

Currently, this is my medication schedule
7:00am Keppra
7:00pm Keppra

These 3 medications will be started during proton therapy.  How should I schedule these medications with the above medications.

Jan 19: Saw Andria Baumgartner- Speech Language Pathologist (CDH): Recommends skill therapy services- to focus on fill in sentences for word recall, and increase expressive language skill. She will fax you the notes from my visit. – Praxis tasks, buttoning, putting on watches, and fine motor skills, and less word finding abilities. Activity work: automatics, numbers, days, months, singing.
Goal: progressing and improvement and phoneme cues, less dysfluency.
Plan: focus on automatics, fill in sentences for work recall, breath support to show rate, and increase expressive language skills.

Jan 18: Yesterday and today morning have wheezing & difficulty breathing... I have seizure 17 Jan'11 - last 5 min. I take Lorazepam 1 mg. Yesterday and today i try buttoning, putting on watches, week right.

Jan 16: Met with Dr. Sweeney at CDH ProtonCure. Mock session and marking the site for radiation therapy on Mon 23’ Jan for ProCure Proton Therapy. They are trying to get approval from my insurance for the proton therapy. The financial advisor stated that all information has been submitted to my insurance today (Jan 19th - Jocelin – 630-821-6384) and it should take 1-2 weeks before I hear anything from them. My insurance is out of network and they are trying to get approval for in network and that is why it is taking time for approval.

Jan 18: I met Dr. Herbert Engelhard, University of Illinois Hospital in Chicago and have been approved trial case. NovoCure "Novo TTF" (TTF stands for "tumor-treating fields"). NovoCure training session will be on Thursday January 26th. An MRI will be done for the trial every 2 month at UIC.

Jan 12: Dr. Ayers office called and I have set up an appointment to see him on Friday January 27th @ CDH. I will have my next Avastin treatment at UIC on January 25th 2011. After I see Dr. Ayers on the 27th Jay 2011, they will set up my Avastin treatment at CDH Cancer Center.

3 Jan 2012 – subdural collection with reduced contrast enhancement with focal areas of cavitations that also appear to decreased in size. These effects may be due to the Avastin. Edema surrounding the surgical bed shows interval worsening with increasing mass effect an adjacent structures. Concern in raised that this increased edema may be producing the mass effect causing pain on the adjacent dura as well as well as the worsening of the speech difficulties…

MRI Report: 01/03/2012 , 12/01/2011 and dating back to 03/01/2008 ...
Multiple resections 19 Mar 2008, 19 Aug 2010 … Left front parietal craniotomy
Glioblastoma 3rd and Astrocytoma 1st / 2nd Anaplastic (Malignant, High Grade, III)
Now 3 cycles Avastin (8 Dec 2011)

Oct 2011: Start TEMODAR – 380 mg (5 days)  - 3 months …

Aug 2011 : There was no recurrence of tumor for these 2.5 years. Mar 2nd week’s MRI was clean and Jul 1st week’s MRI shows recurrence.  I am undergoing awake-craniotomy with speech mapping to remove tumor and cyst that formed in my left side of brain. Surgery is scheduled on 19th Aug 2011 at Provena Saint Joseph Medical Center - Joliet.

On March 1st 2008 I was taken to UIC Medical Center , Chicago with some seizure activity and syncopal episode and aphasia. MRI shows roughly 2-3 cm mass in left front temporal /parietal lobe.  I underwent surgical awake resection craniotomy  of the lesion on March 19th 2008. Pathology report showed grade III anaplastic asterocytoma (with a ki67 or 5-6%).
I took 4 cycles of 5 day radiation in May 2008 and started Temodar (  on Jun 2008 with  5 day/month with 180mg for 6 months and then taper off to 140mg and then to 100mg and stopped the medication by May 2009. I was put on Lyrica 75 mg night for 2 years and now I am off of this. I am taking Keppra (  1750 BID for controlling my seizure due to resection. Doctors are planning to taper off Keppra starting from March 2011 onwards; But I have to keep a minimum level of Keppra for a long time.
The latest MRI report taken on 10 Nov 2010 says that there is no evidence of recurrence, status post left frontopariental craintomy with underlying encephalomalacic changes, cystic change and gliosis without change from previous studies (6 MRI’s compared starting from 29 May 2009). The blood volume on the MRI perfusion study does not demonstrate any increased vascularity that could be associated with tumor recurrence.  Doctors will continue couple of MRI’s this year and will stop monitoring my case.
I went to Speech Therapy for 3 months after my surgery and Occupational therapy for 2 months ; Experiencing speech break if I am nervous or tired or when trying to say a new word that I did not say in these 3 years. I experience occasional numbness in the 1st and 2nd finger of my right hand if I did not get enough rest. Also a chance of getting partial seizure if I am missing a dose of my seizure medication; And I used to carry seizure breakthrough medication always with me. Health wise I am doing better now; doing regular walking and taking healthy diet with lots of antioxidants in my diet. I started by driving by March 2009 and enjoying the climate at Chicago. 

Dec 2011 - Diagnosis: -


Just wanted to give you some info regarding another neurooncologist, as you have requested, especially since Dr. Villano is leaving UIC.
I would highly recommend Dr. Nicholas Vick and his group, including Dr. Ryan Merrell and Dr. Nina Paleologos. Their office contact info is 847-570-1808 (phone), and 847-733-5137 (fax). They are located in Evanston, at NorthShore Hospital . Hope this helps.

Soma Sinha Roy, MD

Dear Jean,
The nurse is on vacation this week. Dr. Engelhard will call you regarding your nausea medication; he also agrees that you should go to the ER. Please call your uncle regarding transport.
Dr. Soma

Jean, I would like for you to come in and obtain an MRI of the brain. It is best if you got it soon and through the ER (and they can take care of the Vicodin Rx). Can you do this soon? I am okay with Depakote.

John L. Villano, M.D., Ph.D
Director of Medical Neuro-Oncology,

From: Jean Mathew []
Sent: Sunday, January 01, 2012 11:49 AM
To: John L Villano Cc:; 'Morris, Kelly (PSJMC)';
Subject: Regarding headaches and update...

Hi Dr. Villano,
I have had 2 days where I have had severe headache at my left frontal forehead area with nausea. The headaches disappear when I take the Vicodin 500mg. On 1/30/11 at night I took 1 vicodin and went to sleep and by morning it was better. On 1/31/11 night, I took another Vicodin and the headache got better. Again this morning I had another headache and took another vicodin and I feel better now. Last night I had muscle cramp on my right last 3 fingers and I took 0.5mg of Ativan for that. I also has had itching on my face and head and I have been taking loratadine tablet for the itching. I just want to know if it is alright for me to continue taking the Vicodin for my headaches and if so, I need another prescription for the Vicodin?

I just wanted to update you on my medication changes. My neuro doctor Roy Sucholeiki at Neurosciences Institute at CDH increased my Keppra dose to 1000mg tablet 2 times daily and stopped my Lyrica tablets. On 12/22/11, I had an appointment with Dr. Englehard and he gave me a prescription for Depakote ER 500mg 1 tablet 2 times daily, but he only wants me to take it if you approve it based on the condition of my liver. ( In 2008, I remember you had put me on Depakote and then stopped it because of something with my liver condition. At that time, you changed my medication to Keppra.) Please let me know what I should do regarding the Depakote.

I had 2 cycles of Avastin so far, and I think I will need to have a MRI after 2 more cycles of the Avastin. There has been some delay with the treatments (TTF) at Novocure and I think my MRI's will be delayed also. Can you give me a order for an MRI so I can do it after 2 more cycle of the Avastin? If I wait for Novocure, my MRI will be delayed.
Can you updated me on your new email and phone number?

From: Mihailovic, Marko []
Sent: Tuesday, January 03, 2012 9:22 PM
To: Jean Mathew;; Watson, Karriem
Subject: RE: Phone : 630 363 4743

Hi Jean,
Yes, I have heard from Dr. E. that you are a good candidate for the NovoTTF commercial use. Therefore, Dr. E needs to see you again at his clinic.

please schedule an appointment w/Dr. E for pt, Jean Mathew, per Dr. Engelhard's request.

Thank you in advance,

1 comment:

Jean Mathew said...

INDIA -> 10 Feb 2013 ... VISA ; and Kochi...