The Starfish Project

The combined effort of our whole family.

Posts Tagged ‘metastases

Poly-MVA Testimonial for Lung Cancer

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happydance3kName: John Flint
7300 Bear Ridge Rd.
N. Tonawanda, NY 14120
Date: July 23, 2000
Diagnosis: Lung Cancer
Email:
eileent1@netzero.netUPDATES: April 12, 2001 – December 3, 2003 – July 6, 2004

On September 1997 I started having difficulties with reading comprehension, I could read a sentence but could not understand what it meant. Within a week I also developed strong headaches. My GP made an appointment to see a neurologist which he scheduled for 2 months in the future and suggested I continue to take aspirin.
That same weekend my headaches were so bad that I went to the emergency room of the local hospital.

After a very short examination the doctor concluded that I had a bad set of headaches but “one thing you do not have are brain tumors”. I felt reassured that I did not have anything serious and went home. As the headaches kept getting worse and I became more and more disoriented, I managed to obtain an appointment with a young neurologist. After a ten minute examination, she sent me for a cat-scan and within a few hours she gave us the bad news that I had two large brain tumors. She also suggested that the brain tumors were probably not primary and that they probably had metastasised from somewhere else.

 

 

That day our life changed forever. The quick action of that neurologist might be one reason that I am still alive.
Within a few days they identified the primary as a large lung tumor, non small cell carcinoma, that had spread to the brain. I was rated as stage 4. During the next few weeks I saw 3 different oncologists, they all gave me a prognosis of 3 months to a year at most. All of them suggested I get my affairs in order. They also stated that it would be a waste of time and money to try any alternative methods.

 

 

I started full brain radiation which was followed after several weeks of recovery by chemotherapy. This lasted almost six months until the oncologist refused to give me any more treatments as the chemo was having many negative side effects on my system. At that stage the doctors stated that they had nothing more to offer and that I should enjoy life as much as possible. We felt we were left on our own, like abandoned, with no one to help us.

 

 

During the long months of chemotherapy, my wife had started looking at possible alternative treatments since my doctors did not seem to think that I had much chance. She called survivors to see what they were doing, cancer organizations to see what they could offer, read books, looked at web pages for the latest that kept on recurring among her various contacts. As we spent more time researching these products we got a clearer understanding of why they worked. Some were being tested in various research laboratories and showed definite signs of reducing cancer. Others dealt with helping the immune system and maintaining the body at its peak condition.
The different cancer fighting products we found attack tumors in different ways. Some prevented the tumors from growing the necessary blood vessels required for growth, these are known as angiogenesis inhibitors. Others attacked the protein membrane that the tumors use to shield themselves from the immune system. Others have chemicals that are necessary for some cancers to grow but also contain chemicals that are poisonous to the tumor – Poly MVA.

 

Some prevent the small new tumors from attaching themselves and therefore cannot grow. I take them all. To date, most of the data show that no single chemical is 100% effective and that taking more than one product increases chances of survival. Some are probably more effective than others, none of them are harmful. The cost of many of these products is relatively small.
It has been 3 years since I was first diagnosed. To date I have no sign of any visible tumors in the brain or lung. I even have some hair back. We would be glad to send you a specific list of the products I am taking. Also we are always happy to talk to anyone looking for help. We were not able to get help from the medical profession so we took the initiative to do something ourselves. If we can share this with other people, we are happy to do so. Please feel free to telephone e-mail us at jflint@itcanada.com.

 

John Flint
UPDATE: April 12-2001

 


Hi Tim,
We have written a short paragraph below with the latest on Johns health. As you see, he is still doing very well.

 

 

We receive at least 5 calls or emails a week asking about poly and the other products that John is taking. We are happy to give moral support and provide any information that we have.
Best wishes to you and your father
Judy and John
John is doing great. As of April 2001, recent CAT scans could not detect any sign of his earlier brain or lung tumors. He is still taking all of his supplements, including POLY MVA, although reduced to a maintenance level. He also has maintained a diet of at least 7-8 fruits, vegetables daily balanced with protein.

 

 

 

 
 
UPDATE: December 3, 2003Hi Tim,

We thought we would let you know that John is still doing great and we are into our 3rd year of cruising on our sailboat. This winter we are off to Belize. John is still following his protocol including polymva.

 

 

We wish you and your father the best for the holiday season. Please give him our regards.
Judy and John Flint
 
 

 

 
UPDATE: July 6, 2004Hi TimAnother 6 months has passed and John still enjoys good health. My mother has been receiving at least 2 -3 requests for John’s “protocol” each week. She is happy to forward it to anyone that requests it. John also emails messages to anyone that would like more information. John is still taking Poly MVA

as well as other supplements and continues to eat 7-9 fruits and vegetables per day.
Best Wishes,
John and Judy
 
 

 

Source:  PolyMVA Survivors.com

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Mom’s Gamma Knife Procedure

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gk10

Hi Everyone,

Sorry I didn’t update last night when I got home, but with all the crazy stuff going on lately – I forgot to pay my internet bill and I came home to find I had no internet connection.  Yikes!!  So, I figured I would just update it today when I came back to the hospital and leave the internet bill with my wonderful husband, Marc, to sort out.

We are so happy to tell you all that Mom did have her Gamma Knife procedure yesterday and it went well.  I took some photos to help document the story of her day.

5:00 AM – We had to get Mom to St. Joseph’s for admitting at the crack of dawn.  All of the Barrow Neurological Institute patients are first admitted to St. Josephs before they are transferred over to the Gamma Knife Center.

6:00 AM – We then had to go up to the second floor to the pre-op area where they put us in a little waiting area. 

Pre-Op Area

Pre-Op Area

They asked Mom to change up into the hospital gown and get onto the gurney.

Well, that was easier said than done.  With all the pain in Mom’s back, it was just too much to ask her to try to stand up and move onto the gurney.  So, several very, very compassionate nurses went and got the sling maching and helped Mom get into the sling and then they were able to put her into the bed that way with very little pain.

While they were moving her they saw the condition of her arms and knew they were going to need their “master” blood person to put in her IV.  So, they brought in the specialist, Mary, to get her IV set up.

She had one of the nurses put a warm blanket on Mom’s arm about five minutes before she came over.  When she got there and took a look at Mom’s arm, she seemed confident she could find a good place to set the IV.  She was amazing and got it going on the first try.  She set her up with a very slow saline drip and got her ready to go to the Gamma Knife Center.

9:00 AM – After a few hours in the Pre-Op area, they finally came to get us and take us to the Gamma Knife Center.  This hospital complex is HUGE and is like a small city.  We were wound through various hallways and taken on elevators and walked FOREVER until we finally came to the Gamma Knife Center.  Yeah!!  All that work we have been doing for the past seven or eight weeks was finally going to make it happen.  We were all so excited.

Mom was a last-minute addition to the schedule, so they didn’t initially have a place for us.  So, we were parked in the hallway for about an hour.  During that time, Dr. Brachman came by to see her.  He is the radiation oncologist who’s on her Gamma Knife team.  He explained to her that at no time during the procedure should she experience any pain or any discomfort.  If she did, she needed to let them know so they could take care of it.  He was very nice.

Then we met Mom’s anesthesiologist.  She took a look at Mom’s chart and let her know that she would be putting a sedative into her IV during the placement of the head frame.  She would be asleep for that procedure and would wake up with the frame in place.

The Gamma Knife treatment is done in four steps:

  1. Fitting the frame onto the head.
  2. Getting an MRI of the head with the frame attached.
  3. The doctors will plan her treatment based on the results of the MRI.
  4. The actual Gamme Knife treatment.

10:00 AM –  Sometime during this hour Mom was given her designated room at the Gamma Knife Center.  This would be our home for the day.  We were introduced to her nurse for the day, Mary, who ended up being one of the nicest nurses Mom has ever had.  They told us we could stay in the room until we saw the whites of Dr. Porter’s eyes.  He would be coming to attach the frame and we couldn’t stay for that part.  I don’t think we would have wanted to anyway.  It’s a little on the freaky side.

So, Mom was all ready for Step 1:  Fitting the Frame Onto the Head.

11:00 AM – Dr. Porter arrived and greeted us and we left Mom’s room and went up to the family waiting area at the front of the building.  There were chairs and a TV up there and we watched “The Price is Right” with the other families and visited with them.  There were a total of four patients there for Gamme Knife treatment.  The nurse said the most they’ve ever had was five in a single day.

Gamme Knife Frame

Gamma Knife Frame

It just took a little while for them to fit the frame onto her head and we got to go back and see her again. 

She was resting comfortably when we got back there. 

The frame was attached and we were so excited to have one more step completed in Mom’s Gamma Knife treatment.

At first, we were a little concerned that she might have some bleeding because of her low blood platelets, but we knew Dr. Porter wouldn’t have done the procedure if she were in any danger.

She slept when we first got back into the room because she was still slightly sedated.

But, after a little while she woke up and talked to us.  She says she has no memory of them attaching the frame.

When I spoke with one of the nurses, she told me that most of the Gamma Knife facilities do not use any anesthesia when applying the head frame – they just use a local numbing cream.  We were sure glad that Mom was in a facility that does utilize some anesthesia.  I think the mental memory of that could be weird if remembered.

Gamma Knife Frame

Gamma Knife Frame

Once Mom had the frame on, we were now just waiting for her to get her MRI.

I took a few pictures of her in her head frame.  It was very interesting to see how the whole process worked.

There were two screws in the front (just above her eyebrows) and two screws in the back.  We haven’t seen those yet, so we don’t know if they shaved her hair a little bit or not.

The frame is made of aluminum so it’s lightweight for the patient (since it has to be worn for quite a while).

The weight of the frame is 2 pounds.  There are a series of pieces fixed together with bolts so it can be customized for the size of each patient’s head.

Mom's Cute Face!

Mom's Cute Face!

I decided that the whole design of the thing had to be made by a man.  A woman (especially a Mom) would have designed it much differently.

First, a Mom would have considered how the patient would manage eating while wearing this thing.  A Mom would have made a hinge on the front piece so it could swing away from the mouth for eating.  lol

Mom was such a brave trooper.  She handled each thing that took place with courage and faith.

We just knew that if we could get her here, that would be the resolution to her brain tumor issue.  So, while everyone was so apologetic for various things – like putting us in the hallway, or for making us wait – we were very happy and grateful just to be there at all!  It was a long uphill battle, it seems, to get to this point and there wasn’t anything that was going to take away from that.

Another great thing that happened was that when Dr. Porter saw Mom when he was attaching the frame, he could see how much pain her back was in.  He decided at that point to keep her after the Gamma Knife procedure and take care of her back and get her out of pain.

Mary told us that she was trying to find Mom a room at the hospital so she could be re-admitted back into the hospital after the Gamma Knife treatment and have back surgery on Thursday.  I think we were all a little scared about that at first.  Not that we didn’t think she needed it, but we just didn’t know what it involved and we were concerned about her having back surgery in such a weakened condition.  Mary didn’t know the details about it at this point, so we were just hanging our trust on Dr. Porter because we all trust him very much to take good care of Mom.

11:20 AM – Step 2 – MRI:  Mary came in and told us that it was time for Mom’s MRI.  They said it would take about 40 minutes to complete.  So, Dad and I decided we would go get some lunch at this time.  Her wonderful nurse, Mary, told us that we could bring Mom something to eat and drink.  Mom asked for some herb tea and Mary told us that it was fine.  So, Mom was in heaven that she could have some herb tea (after her two week restriction from any water, tea or coffee).  So, Dad and I headed to the cafeteria for lunch.

Waiting for Gamma Knife

Waiting for Gamma Knife

NoonStep 3 – Dr’s Planning Treatment:  When we returned from lunch, Mom wasn’t back yet from her MRI. 

She came back shortly after we arrived and was thrilled to see that we brought her herb tea, french onion soup, and a fresh fruit bowl. 

She gobbled up the soup and fruit and enjoyed sipping her tea through a straw. 

I forgot to mention that because of the anesthesia and sedatives for the frame attachment and the MRI, she wasn’t allowed to have anything to eat or drink since midnight the night before.  So, she was very parched by this point (actually, she was really thirsty since the morning).

She was in and out for the next several hours.  She complained about being a little bit claustrophobic because of the frame being right in front of her eyes and Mary brought her a Valium to calm her down.  We wanted to nip it in the bud so she wouldn’t start panicking and raise her blood pressure or anything.

Within a few minutes of taking the Valium, Mom was calmed down again and sleeping.  Once she ate, she mostly just slept during the next few hours.

At around 4:00 PM, she complained of a bad headache.  I told the nurses and they said she was just about ready for Gamma Knife.  They said she would probably be done before any pain med would start to work for it.

4:15 PM – Step 4 – Gamma Knife Treatment:  Dr. Porter came back and told us that the MRI wasn’t any different than it had been two weeks ago.  She still had a 1.13 cm lesion on her brain.  He told us they found two very tiny dots on her brain that they weren’t sure about.  He said they could be nothing, but just to be on the safe side he wanted to treat them.  We were all in agreement with that.  We were so thrilled to see that the tumor hadn’t grown in the two weeks that Mom’s been off her alternative medicine regimen.

He also told us more about the back surgery.  He said it’s really not a very invasive surgery at all.  It’s called something like vertibroplasty and they put cement in her spine to relieve the pain from the compression fractures he found on the CT scan of her spine.  I guess it fills in the spaces of her vertebrae and takes the pressure off the nerves (or someting like that).  Anyway, he said she should feel relief within a few days.  He said there’s virtually no recovery time and she’ll feel better very soon.

So, that’s so nice.  I was anticipating having to call her primary care physician and get a referral for a back specialists.  That could have taken weeks.  Then we would have had to take her to that appointment, then for imaging, then back for some type of consult.  And, then, finally — a month or two later — she would have gotten some back relief.

Dr. Porter rocks!  He’s awesome and we’re so grateful for his care of Mom.

Mary talking to Mom

Mary talking to Mom

Okay, now back to the Gamma Knife treatment …

Once we knew what the plan was, it was time for her to go.  They let us in the Gamma Knife room while they were preparing her for her treatment.

They moved from her gurney to the Gamma Knife table and adjusted the table to make her comfortable.

During this time Dr. Brachman spoke to Dad and me and explained that the whole procedure would only take 30 minutes for Mom – 40 minutes at the most.

We were just thrilled that this time had finally come.  She was actually in the Gamma Knife room and it was really going to happen!  We were elated.

Here are a couple more pictures of her in the Gamma Knife room once her frame was attached to the machine. 

gk091

Mom w/Gamma Knife machine

This will  keep her head from moving at all during the procedure so they don’t accidentally zap any healthy brain tissue. 

So, while it’s sort of strange and uncomfortable for her, we are grateful for the accuracy of the entire process and how targeted the gamma rays will be on her brain.

The machine looks a bit like an MRI, except that Dr. Brachman said it would be very quiet (which is very different from an MRI machine).

You’ll notice the label on the upper part of the machine that says “Gamma Knife Perfexion”.  I blew the picture of that up and that’s the first picture at the top of this blog post.

There was a whole team of people on computers who were going to be part of Mom’s team.

The whole experience was really neat.  Since Mom doesn’t remember much of it, this will document it for her too.

So, we said good-bye to Mom and good riddance to her brain tumor and off we went to Starbucks to get a latte during her procedure.

We called my sister, Gretchen, while we were on our Starbucks run and let her know that Mom was in the Gamma Knife machine.  We all rejoiced that it was finally happening for her.

5:00 PM – When we came back from Starbucks, Mom was already done with her treatment and her head frame was already removed.  Yeah!!!  When we saw her, she was looking great and feeling good too!

Mom resting after Gamma Knife

Mom resting after Gamma Knife

Mary told us that St. Joseph’s had found a room for Mom, so we were going to be going back to the Pre-Op area we started the morning in and wait for her room to be cleaned and readied for her.

Her nurses back in Pre-Op were wonderful and took her vital signs and even ordered a tray of food to be sent to her room so she would have dinner when she got there.

Mom was then wheeled back up to the 6th floor and into her new room.

It was a familiar site to us (as it is almost exactly like the room she had last week) and is only 2 rooms away from that one.   lol

7:10 PM – We made it up to Mom’s room at St. Joseph’s.  We met her nurses, Alicia, who was going off-shift in about 20 minutes.  She got Mom all settled in and introduced us to her night nurse, Susanne.  Susanne was wonderful and took great care of Mom during the night.

I went home about 11:00 PM and Dad stayed the night last night.  Mom had a wonderful day today.  Alicia was back on shift today and she took excellent care of Mom all day.  I came back this afternoon around 3:00 PM to relieve Dad so he could get home and get some sleep.

Mom is scheduled for vertibroplasty at 7:30 AM tomorrow morning.  So, once again, we’d like to ask for your prayers and happy, positive thoughts for Mom for tomorrow.

Thank you all so much for being there for Mom.  This has been an amazing journey with this whole Gamma Knife deal and we’re so thankful that it all went perfectly and she’s on her way to being pain-free after her back surgery tomorrow!

I’ll post more tomorrow night and let you know how that goes …

Until then,

Tracey