Update on - DIPG - Protocel info. needed

[Guest guest]

Hello to all,

Here another update on .....

After seeing 's MRI on Friday her oncologist prescribed Decodron.

had double vision on Thursday, Friday and Saturday morning only. We went

to see her oncologist on Monday who did a physical exam and suggested we

decrease the Decodron. We did and Monday night got up to go to the

bathroom and fell to the floor. She said both her arm and leg don't work (her

right side). I called her oncologist and he said to go back up on the steroids.

So we did and today she is walking with a limp, yet much better than yesterday.

She has strength and mobility in her arm but not what it was before. I have to

remind myself it has only been a day and a half. The double vision has not

returned either.

While we were with her oncologist on Monday I asked him if the protocel

could have made the tumor react this way. He said we would need to see the

results of the MR Spectroscopy. She had this done on Friday during her MRI. On

Tuesday I got the official MRI report and it reads..........

Findings: Comparison is made to prior MRI study performed on 06/06/2006. The

current examination demonstrates evidence of interval change. On FLAIR imaging,

the maximum transverse dimension is now approximately 4.8-4.9 cm. Maximum AP

dimension now is approximately 3.7 cm. On sagittal T1-weighted imaging, the

maximum craniocaudal dimension is approximately 3.4 cm previously 3.0 cm. This

constitutes increase in size and there is clear impression of the anterior

fourth ventricle. The lateral and third ventricles remain unchanged in caliber.

There is a new finding of what appears to be enhancing nodule within the left

ventral pons. This measures approximately 2.3 X 2.4 cm in size and has a fairly

thin rind of enhancement centrally to contain both necrotic and enhancing

components. Spectroscopy does support the present of necrotic central elements.

There is new edema now extending to the left cerebellar peduncle with minimal

edema in the left anteromedial cerebellar hemisphere. There are no other new

enhancing masses seen. Adjunctive MR spectroscopy obtained of right pons

demonstrates marked increased choline with suppression of the normal NAA and

creatine within the left pons. There is what appears to be elevated choline

with necrotic elements centrally within the left pontine lesion.

Impression: Increase in size of the pontine mass which is a presumed glioma.

Development of a new lesion within the heretofore nonenhancing central pontine

mass. This lesion shows a peripheral rind of enhancement, with central necrotic

elements by MR spectroscopy. It is unclear whether this new lesion constitutes

dedifferentiation of the glioma or represents a response to the patients'

recently changed chemotherapeutic regimen.

's scans over the past six months have not revealed Necrosis and /or

Edema. She just started taking Protocel on July 5, 2206. The radiologist

indicated the results we are seeing could be the tumor breaking down. Although

dead cells are very irritating to the brain and it takes a while for the body to

reabsorb these cells. We are trying to find something to assist 's body

with this reabsorbtion. Does anyone have any experience with Vascuzyme? We

have also considered Bromelain and Boswellia. Has anyone had a similar

experience with protocel? Any information would be greatly appreicated. I hope

we get her body to remove these dead cells and my daughter can return to her

normal fun loving self.

Please continue to pray for . Also if you could add 's Dad and

myself to your prayers. Please, Please ask God to guide us in the right

direction to heal . I now have hope that we may make it through this

experience with a happy ending. thank you all for your caring thoughts and

information.

With Hope!!!!

mother of

[Guest guest]

Dear --

I just wanted to let you know that my husband and I have been praying

for you, your family and especially your very precious daughter. We

will continue to pray and ask God to bless you with wisdom, strength

and healing.

Best, Bonnie

is constitutes

>

> Please continue to pray for . Also if you could add

's Dad and myself to your prayers. Please, Please ask God to

guide us in the right direction to heal . I now have hope that

we may make it through this experience with a happy ending. thank you

all for your caring thoughts and information.

>

> With Hope!!!!

>

> mother of

>

[Guest guest]

,

Continue on the Protocel and do not give up. This will take care of it. I had a

brain tumor for 16 years and did everything possible in the alternative world to

get rid of it. I learned tons but the brain tumor never left. It grew at times

but never left. I did protocel 50 for 2.5 years and it is gone! The doctors are

baffled. I know that it made a difference. Please keep doing this. Your daughter

will make it.

Bless you,

Johanne

From:

Sent: Wednesday, August 16, 2006 8:35 PM

Here another update on .....

After seeing 's MRI on Friday her oncologist prescribed Decodron.

had double vision on Thursday, Friday and Saturday morning only. We went to see

her oncologist on Monday who did a physical exam and suggested we decrease the

Decodron. We did and Monday night got up to go to the bathroom and fell

to the floor. She said both her arm and leg don't work (her right side). I

called her oncologist and he said to go back up on the steroids. So we did and

today she is walking with a limp, yet much better than yesterday. She has

strength and mobility in her arm but not what it was before. I have to remind

myself it has only been a day and a half. The double vision has not returned

either.

While we were with her oncologist on Monday I asked him if the protocel could

have made the tumor react this way. He said we would need to see the results of

the MR Spectroscopy. ...........