Brain Cancer: GBM - Remembering Raisa

 
Raised: $38,658.00
Goal: $38,563.00
 
 
 

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Andy Goktas

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Introduction In early July 2011, Raisa began experiencing severe headaches, nausea, & vomiting.  Based on the severity of the symptoms, Raisa and my Mom (Tanya) repeatedly visited Sil... more

 
 
 
 
 
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Updated posted by Andy Goktas 12 months ago

Hi Everyone,

This should be my final post.

Just a couple updates:
- The video in memory of Raisa is now complete. I have embedded it to this update.
- The "Remembering Raisa" 5k walk (organized by the school district) went extremely well and thank you so much for those of who helped organize and support this event.

And a well-deserved thanks for everyone who helped support us throughout all of this. If it wasn't for everyone's generosity & hope, we would spend every day thinking "what if we tried something more in the final few weeks? What if there was a last treatment option could have saved Raisa?". At least we know now that we did just about everything we could, and finally understanding that God had other plans for Raisa nonetheless.

Thanks again from the bottom of our hearts. And truly I hope our community stays as strong as it has demonstrated in the past couple months. I am sure that Raisa wants to continue smiling down upon each and every one of us for what we have done, and can continue to do for anyone in need.

God Bless. Boh Practiti.

P.S. Please ignore the "Donate Now" button that is posted to Facebook on each update. This is a GoFundMe default/unchangeable option. This is not an attempt to collect more donations. Thanks again. :)

 
 
 

Updated posted by Andy Goktas 12 months ago

Hi Everyone,

Attached is a spreadsheet for usage of donation funds. We thought it would help clear up any confusion as to where funds may have been used.

Thank you again for all your support. The past few weeks have been very difficult and it's still surreal that Raisa is gone, but our family will pull through.

Update on slideshow/video: We're about 95% complete and should be posting the slideshow/video of Raisa soon. Just waiting on a few more pictures.

Thanks again,
God Bless. Boh Practiti.

 

 
 

Updated posted by Andy Goktas 12 months ago

Another great video that puts us in tears from Raisa's friends.

I'm sure Raisa smiles down on each and every one of you for everything you have done, and continue to do.

God Bless. Boh Practiti.

 
 
 
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Created by Andy Goktas on February 16, 2013

Introduction

In early July 2011, Raisa began experiencing severe headaches, nausea, & vomiting.  Based on the severity of the symptoms, Raisa and my Mom (Tanya) repeatedly visited Silverton Hospital (Oregon).  Initially, the doctor recommended antibiotics (suspected sinus infection) which did not seem to help as the days passed by.  After multiple trips due to symptoms not improving, Tanya persistently requested a CAT scan to ensure nothing more was going on.  Finally doctors agreed to this. 


The doctor returned with results and the first thing he said was, “You have a brain tumor, and we have an ambulance ready for you to travel directly to OHSU.”


When arriving at OHSU in Portland, Oregon, an MRI was performed which confirmed mass, location & size, and then we promptly began planning for surgery.  The tumor was located in the right frontal lobe of the brain and was easily accessible.  Dr. Koppa performed the surgery and when reviewing the post-surgery MRI, he recommended a 2ndsurgery based on his expert opinion of this tumor appearing to be of an aggressive nature.  We agreed to this second surgery and it was completed a few hours later.


At this point the mass was sent out for a biopsy to determine type & grade, and our family prayed for a benign tumor.


Raisa recovered well and was asymptomatic.  We optimistically waited for results of the biopsy.


Diagnosis

We met again with Dr. Koppa a few days later, and he revealed that Raisa had a Grade 4, GBM (Glioblastoma Multiforme) - the worst and most aggressive and infiltrative brain tumor that a person can get.  Our hearts sunk, and tears then spilled truly for the first time.  We discussed few options we had and based on Dr. Koppas suggestion, he advised that we start with Radiation therapy, then follow Dr Neuwelt’s suggestion of using Temodar Chemotherapy; which is a first line of defense for Glioblastomas.  Dr Neuwelt is the head of cancer research at OHSU, and was well known.  We agreed and Raisa scheduled herself for Radiation therapy at a nearby facility shortly after.  Raisa underwent radiation treatment for 6 weeks before starting Temodar.    


Just like most people in this situation, the moment we all got home, we hit the ground running in a desperate attempt to find a solution.  Raisa, Fred (Raisa’s husband), Anastasia (Raisa’s sister-in-law), & myself (Andy - Raisa’s brother) began collecting books, articles, and anything else we can get our hands on to find options for a cure.  We decided to do what we can simultaneously alongside Chemotherapy, but ensuring that it’s not conflicting.  Of course anything we decided to do, we ran by Dr Neuwelt’s team first to get approval.


1st alternative solution:  Regiment stew

This was a book (Surviving “Terminal” Cancer) written by Ben Williams, PhD had the same type of brain tumor.  This was a story that outlined supplements that he took at the same time as using Avastin, and 10 years later he was still going strong. 

So we assembled the following regiments:

-         Coriolus PSP, Maitake Gold 404, Melatonin, RaspberryGold Ellagic Acid, Borage Oil, Beta Carotene, Nature's Way (Alive!), Ultimate Probiotic, Turmeric


Note:  If you're curious about mg details/doses/sources/details, email me at GoktasAndy at gmail dot com, and I can share our Google drive doc that shows every detail of our research & supplement stew that we assembled.  


Only Coriolus PSP was able to be taken at the same time as Chemotherapy because it did not act as an Antioxidant (conflicts with chemotherapy), but instead was used as an immunomodulator to boost Raisa’s immune system during chemotherapy, thus helping keep immunity up during chemo treatments.


2nd alternative solution:  Juice Cleanse

This was from another book (A Cancer Battle Plan) that outlined a success story of Anne E. Frahm that did a juice cleanse that included:  Grape Fruit, Olive Oil, Carrots, Kyo Green (contains superfoods), apples, & psyllium husk for Fiber; followed by enemas to extract colon toxin content buildup. 


My wife (Anastasia) and I tested the juice cleanse with Raisa and found that it was tough but doable.  Enemas are not fun, but are necessary.  This was not something we proceeded with vigorously as Anne did in the book, but we knew that this was an option down the road (if needed)  based on how far the Regiment stew, healthy eating, & alkaline water helped.


3rd alternative solution:  Healthy eating

Just like any healthy diet, stay away from bad unhealthy sugars, sodas, white bread, white rice, artificial ingredients, non-organic foods, etc.


Technically, we must avoid most of the Western diet. 


The diet then began. 

         

4th alternative solution:  Alkaline Water

After additional research, we found that higher pH/Alkaline water has antioxidant properties that may hinder cancer growth. 


My wife (Anastasia - Raisa's sister-in-law) and I decided to purchase a water ionizer from a local Athena dealer.


From that point forward, we began using alkaline water in our daily intake as a family.  


Temodar Chemotherapy

Raisa used Temodar for 1 1/2 years and routine MRIs continuously came back with no new tumor growths.  


New Brain Stem Tumor

After 1 1/2 years of Temodar, Raisa found that she is beginning to feel numbness in her left cheek & tongue.  So Dr Neuwelt ordered an MRI and finds a new tumor in the Brain stem (the worst possible location for a brain tumor).  He advised us that the cancer is not longer treatable with Temodar and she is not a surgical candidate due to the location of the tumor. 

 

He begun to discuss the next options – Blood Brain Barrier Disruption (BBBD) treatments (which is the protocol study) and the next line of defense.  We agreed and scheduled the new treatment.    


At the same time, we introduced the 5th Alternative solution: Raw Food Vegan Diet

It concerned us much more as the abnormal aggressiveness & increase of the symptoms increased rapidly (tumor growth causing pressure against brain stem, thus causing neurological symptoms), so we were not simply going to wait and have standard “commercialized” medicine help us as our 'only' option. 


Note: There are NO long term success stories with only traditional treatments (radiation & chemotherapy), but only those of who go above and beyond have a chance and sometimes have successful results. 


So in addition to the BBBD protocol treatment, we decided to add a bit more on our end by adding a new alternative solution - a Raw Food Vegan diet.  

 

Carole (Raisa’s sister-in-law) came in to help.  She had done vegan diets in the past and is familiar (discussions with clients of hers) with the Raw food vegan diet.  She was able to address the typical questions & concerns about protein, calcium, etc.  All nutritional details were addressed and clarified.  

 

For added motivation & support, we also watched the documentary “Forks over Knives”. 


We also met with Dr Dave Allderdice, a Naturopath Oncologist in Portland, OR, FABNO certified – only 1 of 2 in the entire state of Oregon; and he adjusted our supplement stew a bit and reviewed our raw vegan diet plan.  In the end, he simply suggested a couple modifications.  


So we began our Vegan Raw Food Diet.  Smoothies in the morning and healthy meals for lunch & dinner.  Anastasia (my wife) & Carole (sister-in-law) began thorough research in new recipes to make vegan raw foods enjoyable. 


Blood Brain Barrier Disruption / Chemotherapy

The BBBD treatment was administered 3 days after discovering the new tumor growth on the brain stem, and within a few days after completing the BBBD treatment, Raisa's symptoms continue to worsen and get to the point of impairing her ability to walk, talk, and to fully use her right arm and leg. 

 

Anastasia, Tanya, & Raisa informed Dr Neuwalt's nurse of Raisa's progressing symptoms to which she ordered Raisa to be put on steroids (helping with swelling/pressure of the tumor).  


3 days later, Raisa deteriorated even further and my mom (Tanya) contacted my wife (Anastasia - which is a Oncology RN) that Raisa was having trouble holding water in her mouth and couldn't get out of bed.  As of this day, she was unable to use the walker anymore and needed the assistance of a wheelchair.  Anastasia urged a call to 911 due to the speed of increased symptoms and severity. 


The ambulance arrived and Raisa was transported to OHSU. 


The ER doctor was advised by Dr Neuwelt’s team to perform anther MRI one week earlier than scheduled. 


Avastin treatment

We come back the next day and Dr Neuwelt’s team advises us that the brain stem tumor has progressed and increased in size, additionally a new small tumor was found on her temporal lobe.  

 

Overall, the BBBD treatment didn't seem to be working either, or at least not having a large impact on treatment.  They then advised us to begin Avastin treatment ASAP. 

 

Unfortunately, because this was not a standard treatment (but it is FDA approved), it required insurance approval before treatment could be rendered. 


Thursday, we waited. Friday, we waited.  Business were closed on the weekend, so we decide to head to the beach in Newport,Oregon to let the time pass as we spent time with the family.  We all did the best we can to enjoy ourselves, but with symptoms worsening, it was very difficult to do so.  Family time was nice though.  


Before Raisa and the ladies were able to leave for the High Tea lunch reservation, Fred (husband) received a call from OHSU and excitedly announces that Avastin was approved. 

Raisa & Fred rushed straight to OHSU and began treatment that day. 


Then we waited. 

 

Something to note: 

All sources tell us that Avastin is not designed for “treatment”, but only as a medicine to decrease symptoms as much as possible, and inevitably having the unfortunate end result as tumor continues to grow. 

 

Burzynski Treatment

We’ve had many recommendations to the Burzynski clinic in Texas, but haven’t pursued it yet because of the cost.  Insurance does not cover these services.  At least most insurances don't cover because it’s considered a “Supplemental treatment”. 


I contacted the Burzynski clinic in Texas and discussed pricing.  Again, no insurance coverage, and is all out of pocket.  $1,500 for consultation, $13,500 for tests & plan customization which includes 3 weeks treatment, then the additional costs for additional treatment (based on the treatment designed for Raisa after the consultation).  This is why I'm setting a goal of $20,000 to allow a buffer of $5,000 for the additional treatment for the month, along with the 5% GoFundMe fee, additionally the ~3% WePay fee for bank transfer.  


Wrap up

This is where you all come in.  The Shadrin & Goktas families are unable to afford this treatment and pray that some generous people chose to donate and help in finding a solution. 

 

The outline above was simply to help you understand that we all went above and beyond standard treatment.  Alternatives that have had successful results nonetheless for others.  There are many more details that I can provide, such as the fact that I even spoke with the Mushroom Science vendor (Coriolus PSP & Maitake Gold 404 manufacture/supplier) in Eugene,Oregon – specifically with the engineer that worked directly with Ben Williams for 10 years, but this letter would be become endless.


Again, we pray for your generosity and hope that we can collect enough donations for Raisa’s treatment.  Please understand that your donations will be used wisely, and accurately as indicated with the plan listed above.  I will also provide routine updates to this page to keep everyone up-to-date on Raisa's progress.  Please continue visiting this URL/webpage for new information.  


We will not stop fighting until our last moment on this planet, and even so, we will go down swinging. 

 

Please help us fight, and we plan on defeating cancer that “thinks” it cannot be stopped.  Time is of the essence, and God bless.

 
 
 
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Andy Fred Mike Julian Nicole Tonia Lev Barbara, and of course little Davidka, I pray that Givin enough time, God will replace the emptiness your feeling with loving sweet memories of happier times. My heart goes out to you each one. Blessings are abound.

posted by Terrasa Helton 13 months ago

Sending all my prayers too you Raisa and the family!!!

posted by Mary Basargin 13 months ago

Praying for a miracle...

posted by Paula Karayel 13 months ago

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

posted by Terrasa Helton 13 months ago

James 5:15 - And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him.

posted by Terrasa Helton 14 months ago

Raisa, Nicole, Tonya, James 5:14 - Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord:

posted by Terrasa Helton 14 months ago

I saw your story through Andrea on fb. I just wanted to say to Raisa, your son is as cute as can be! You are sooo strong & there is soooo much HOPE! My family is praying for you & your family. Take care & know that you are very loved!

posted by Sheila Santoyo 14 months ago

Our thoughts and prayers are with you. Stay strong and fight through this. Wishing and hoping the best for you and your family!

posted by Anastacia Burkoff 14 months ago

I stumbled across your story through FB, and want to send our prayers and thoughts to your family and friends as our family also copes with my nephew (19) just being diagnosed with Germinoma, another type of brain cancer (at OHSU) and my brother and sister in law's emotions are up and down as my nephew just started chemo yesterday. Your story is heartbreaking but we hope for peace and God's grace for your family. Take care and good luck in Texas!

posted by Anna Puskas 14 months ago

I love you.

posted by Alexandrea Goktas Kuzmin 14 months ago

God bless you and your family!!! Sending out prays and love to you and your family!!

posted by Diane Mullenburg Ashworth 14 months ago

Our prayers are with Raisa and your family.

posted by Vassa Crisafulli 14 months ago

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$38,658 raised by 448 people in 14 months.

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Keep Fighting Raisa! Our prayers go out to you and your family to keep strong to beat this!

 

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If you ever need anything please contact us, we will pray for you everyday, and keep you in mind. Even though we are strangers, don't be shy, keep me in touch.

 

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