Re: MPNST....in the neck ,any alternatives for this???

[Guest guest]

I would look into CAPE (caffeic acid phenethyl ester) such as can be

found in bee propolis. I would also consider curcumin. There is

evidence of the activity of each vs NF.

At 01:52 PM 5/6/2009, you wrote:

>One of my friends that has a very bad Case of NF, has just been

>diagnosed with a Malignant Peripheral Nerve Sheath Tumor [MPNST] on

>the left side of her neck.

>

>She will be receiving radiation, but wants to do alternatives also.

>I need any and all suggestions PLEASE.

>

>Thank you ,

>

>Patti

>

>[Moderator comment: From Wikipedia: " Neurofibromatosis (commonly

>abbreviated NF) is a genetically-inherited disease in which nerve

>tissue grows tumors (e.g. neurofibromas) that may be harmless or may

>cause serious damage by compressing nerves and other tissues. " ]

>

[Guest guest]

Thank you for your responses. My daughter who is 8 has NF1 and a cercico

medullary dorsally exphyotic brain stem glioma and has had her right eye

removed. An optic glioma on her left eye is taking away her vision as I type. We

have done nothing but homeopathics and alternatives up until Jan. when the optic

tumor started to grow. I have reseached the brain tumor aspect of NF, but the

MPSNT I needed some help with. We have discussed the CAPE on the NF BB, but not

to many on there are in to alternatives. was on Curcumin, but with the

CPT-11 and Avavstin I had to take her off it.

I will certainly suggest this to my friend. She is very devastated right now,

but is asking for alternative help. WE appreciate all of your help.

Patti

>One of my friends that has a very bad Case of NF, has just been

>diagnosed with a Malignant Peripheral Nerve Sheath Tumor [MPNST] on

>the left side of her neck.

She will be receiving radiation, but wants to do alternatives also.

I need any and all suggestions PLEASE.

>Thank you ,Patti

[Guest guest]

Sometimes Conventional Medicine(Western Medicine) has very limited choices,

however Traditional Chinese Medicine may do a good job. We have an European

Chordoma patient. The Doctor told her that it was quite dangours to remove her

chordoma by surgery because her tumor is located in her brain near stem. She

switched to TCM(traditional Chinese Medicine). after half year treatment, her

tumor is under control so far and we expect that her tumor will get shrinked by

next MRI in couple of month.

I suggest you to access a GOOD tcm doctor who is near you to find out what tcm

can do for you. Also you may consult with National Center for Complementary and

Alternative  Medicine (NCCAM) in USA and find some usefull info.

http://nccam.nih.gov/health/

We have many prescriptions but it is impossible for the diagnosis. If you can

access a good TCM doctor and he/she understand Chinese, they may contact us.

smoke2006 wrote:

Thank you for your responses. My daughter who is 8 has NF1 and a cercico

medullary dorsally exphyotic brain stem glioma and has had her right eye

removed. An optic glioma on her left eye is taking away her vision as I type. We

have done nothing but homeopathics and alternatives up until Jan. when the optic

tumor started to grow. I have reseached the brain tumor aspect of NF, but the

MPSNT I needed some help with. We have discussed the CAPE on the NF BB, but not

to many on there are in to alternatives. was on Curcumin, but with the

CPT-11 and Avavstin I had to take her off it.

I will certainly suggest this to my friend. She is very devastated right now,

but is asking for alternative help. WE appreciate all of your help.

Patti

[Guest guest]

Patti, Have you looked into inhibiting hedgehog

pathways? Cyclopamine is quite expensive, but you can extract it

yourself from corn lilly. You do want to be careful as it is

toxic. You can also look at histone deacetylase inhibitors. I

probably have antineoplastons on hand, but I would also look at

combinations of magnesium valproate and parthenolide (feverfew). I

would still revisit curcumin and CAPE (plus there are many rosmarinic

acid derivatives you can look at). Your situation is not hopeless.

At 10:38 PM 5/6/2009, you wrote:

>Thank you for your responses. My daughter who is 8 has NF1 and a

>cercico medullary dorsally exphyotic brain stem glioma and has had

>her right eye removed. An optic glioma on her left eye is taking

>away her vision as I type. We have done nothing but homeopathics and

>alternatives up until Jan. when the optic tumor started to grow. I

>have reseached the brain tumor aspect of NF, but the MPSNT I needed

>some help with. We have discussed the CAPE on the NF BB, but not to

>many on there are in to alternatives. was on Curcumin, but

>with the CPT-11 and Avavstin I had to take her off it.

>

>I will certainly suggest this to my friend. She is very devastated

>right now, but is asking for alternative help. WE appreciate all of your help.

>

>Patti

>

>

> >One of my friends that has a very bad Case of NF, has just been

> >diagnosed with a Malignant Peripheral Nerve Sheath Tumor [MPNST] on

> >the left side of her neck.

>She will be receiving radiation, but wants to do alternatives also.

>I need any and all suggestions PLEASE.

> >Thank you ,Patti