So i finally got my diagnosis and i found out i have Malignant Peripherals Nerve Sheath Tumour , MPNST for short.

Apparently its a rare kind of nerve cancer, My doctor, Dr Ranjeev basically is just a consultant and its not his expertise in this kind of disease ( but honestly such a nice doctor, answered all my question even my stupid retarded questions and made me feel safe ) . so referred me to the general surgeon, and i felt really disappointed, it was as if it took one look at it and gave up. He basically told me he wont operate because its too risky and that even if i were to do chemo it wouldnt work. I expected a solution or atleast dont immediately give me a death sentence. The only helpful thing he did was referred me to a doctor from selayang who may be able to help me. Disappointed because i had to pay for that useless consultation.

Then i had to go to see the oncologist who i felt was pretty useless as well , looked at my scans , didnt really give me a treatment plan, said it was too risky and pointless to do surgery if they cannot remove all of the tumour. Chemo MIGHT work and told me maybe i should go to another hospital. The thing that pissed me off the most was the fact that when my sister asked her to explain more about this cancer she just said "its a nerve cancer" ( like duh we already established that i have nerve cancer) , then my sister asked, how rare it was , then she just blurted out "thats not important" . by that time , i couldnt care less about what she had to say because i was just sitting there thinking, GREAT another useless consultation that i have to pay for.

Basically i started this post because i wanted to know if theres someone out there who is having the same kind of cancer as i am or is a survivor for this kind of cancer.
I promised my family, boyfriend and friends i would do my best to kick cancers ass.

I don't know anyone with the same case, but all the best to you and kick the cancer butt hard!

Hi Gracee, which specialist you need refer to ? oncologist ?
Why not try UMSC ( university Malaysia specialist clinic ), entrance next to UM main gate. I have a benign tumor in my spine c3-c5. 1st check up and done MRI in Sunway, follow by 2nd optional thru a GP, and finally I go UMSC. I do not want elaborate details here but I can assured that UMSC is good and I'm 99% fit now.

I will drop by there, once i meet with a doctor from selayang and i was told to go to putrajaya hospital as well. =/

Hi gracee!

So sorry to learn about your condition; but it's good that you have a strong character.

Why don't you connect with those charitable bodies like hospice? They might know someone who has the same issues and recommend you the correct specialist to consult.

Will pray for your recovery. Good luck & stay strong.

Hi, I have send you some info to your PM. Btw can you read mandarin? If can, then I can email you more info.

Hi, sorry to hear that. May I ask where is the exact location of this tumor? On top your kidney? I can help you do a little research when time permits.

Hi
Its situated at my right adrenal gland/kidney but also pushing against my liver, which is why i feel the pain from time to time.
the mass its about 8.7cm x 8cm large , the doctor didnt exactly tell me what stage i was but i did hear advance which is bad.
But i dont believe theres nothing that cant be done.

As a doctor i believe they took an oath to doing the best they can for their patients, but i felt the 2 quack doctors just cared about money and nothing else.

Thank you for wanting to take the time to help, really appreciate it
i hope there is something that can be done.

So you mean that you were referred to the government specialists? Actually government has more subspecializations than private hospitals. Complicated cases usually be referred to government hospitals.

I don't have time to write more now, but a quick check of MPNST shows
that is basically a neurofibrosarcoma, and is linked to NF1 and NF2.

MPNST are basically malignant Schwannomas, the benign tumors in NF2.

However, about half of MPNST cases occur in people with NF1.


In NF1, it is the neurofibomin protein or gene of chromosine 17 which has
malfunctioned, while in NF2, the neurofibromin 2 gene, also called Merlin,
has gone haywire in chromosome 22.

MPNST shares many of the same genetic and biochemical signalling pathways
that causes the growth of the benign tumors in NF1 and NF2, and indeed,
many other cancers -

Merlin
EGFR
AKT
PI3K
STAT3
JAK2
PAK1


Merlin, or its dysfunction rather, is the root cause, with the rest of the
others coming in down the cascade, in NF2.

Merlin also appears to be evident in MPNST.

http://www.ncbi.nlm.nih.gov/m/pubmed/?term=MPNST+MERLIN



EGFR-STAT3 signaling promotes formation of malignant
peripheral nerve sheath tumors.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3923530


There were three girls that I knew had NF2 in the country -

Lim Pei Lee
Yvonne Foong
Keisha Petrus


Pei Lee passed away about two years ago. Her dad preferred to try out
Chinese traditional medicine, so I did not have much say in her treatment.


I did extensive research on their condition at that time, and on the
suppements and drugs which target the signalling pathways of their tumors.

You can take a quick look at this thread.

http://www.longecity.org/forum/topic/45780...ndpost&p=547305



Thus, offhand, these are the supplement and drugs which are likely
to fight your cancer :


Curcumin
Pterostilbene
Resveratrol
Quercetin
Fish oil
Bio 30 / Bio 100 oils


Sodium valproate (Epilim, Depaken), the old epilepsy drug
Celecoxib (Celebrex), the common NSAID


Chemotherapy - mainly the EGFR and tyrosine kinase inhibitors :

Erlotinib
Imatinib
Nilotinib



Yvonne Foong has apparently been controlling her condition with Bio 30,
then Bio 100, the bee propolis oil developed in Japan, which contains CAPE,
or caffeic acid phenethyl esters.

CAPE suppresses the PAK1 pathway.



CAPE (caffeic acid phenethyl ester)-based propolis extract (Bio 30) suppresses
the growth of human neurofibromatosis (NF) tumor xenografts in mice.

'' ..... Bio 30, a CAPE-rich water-miscible extract of New Zealand (NZ) propolis
suppressed completely the growth of a human NF1 cancer called MPNST
(malignant peripheral nerve sheath tumor) and caused an almost complete
regression of human NF2 tumor (Schwannoma), both grafted in nude mice. ''

http://www.ncbi.nlm.nih.gov/m/pubmed/18726924/






This post has been edited by Tham: Oct 30 2014, 09:45 AM

the 2nd doctor told me that the selayang hospital is semi private and government.
was just pissed because i felt like he didnt really care much to explain or anything, -.-

Thank you for the info , i honestly dont know much about my disease , i had to google , because whenever i tried knowing more, the doctors seemed uninterested .
hopefully the selayang doctor will be better,

For my wife's case, she was told to avoid caffeine and any sort supplement that contains growth hormones. Her neck tumor was diagnosed 2 months ago and coincidentally that was when she started taking sheep placenta.

Some tumors feed on growth hormones which is why certain patients were prescribed anti hormonal drugs to curb release of hormones from body thus resulting to shrinking of tumor.

Alkaline diet is good for those with cancer. Take as much rest as possible, do some read up on your condition so you which doctor makes sense.

This post has been edited by Xccess: Oct 30 2014, 11:17 AM

I just want to get treatment as soon as possible, i worry the longer i wait, the worse it gets.

I should resign soon tho, but i worry that i may still have to work the 1 month notice period.

Hi. Not my specialty area but suggest u try HUKM as well.

Most oncologists won't know about the genetic signalling pathways of
cancer cells which I have given you above, let alone be familar with
any of these cancer-fighting supplements.

I am quite certain none of the cancer specialists here you consult will know
what you are talking about if you mention ''Merlin''.

Few, if any, will realize that celecoxib, sodium valproate and metformin are
potent cancer fighters, let alone understand the molecular growth pathways
of cancer cells which they target.

Conventional chemotherapy drugs do not work very well on neurofibrosarcomas.
apart from the newer tyrosine kinase, VEGF and mTOR inhibitors.


I would suggest that you start curcumin and/or pterostilbene straight away,
whether you are going on chemotherapy or not.


Most life extensionists are familiar with the cancer-fighting properties of curcumin.



EGFR-STAT3 signaling promotes formation of malignant
peripheral nerve sheath tumors.


'' STAT3 is a potential therapeutic target, since blocking it with shRNA or
the non-specific inhibitor curcumin inhibits growth in several cancer models. ''

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3923530/

http://www.ncbi.nlm.nih.gov/m/pubmed/23318430/




Molecular targets of dietary agents for prevention and therapy of cancer.

'' ..... the cell-signaling pathways inhibited by curcumin alone include NF-kappaB,
AP-1, STAT3, Akt, Bcl-2, Bcl-X(L), caspases, PARP, IKK, EGFR, HER2, JNK, MAPK,
COX2, and 5-LOX. ''

http://www.ncbi.nlm.nih.gov/m/pubmed/16563357



Binding partners for curcumin in human schwannoma cells: biologic implications.

'' Curcumin (diferuloylmethane) is a potent anti-inflammatory and anti-tumorigenic
agent that has shown preclinical activity in diverse cancers. ''

http://www.ncbi.nlm.nih.gov/m/pubmed/23294827



There are no studies of pterostilbene on neurofibrosarcomas,
so this is the closest. Note that this study on osteosarcoma finds
that it targets the same crucial signalling pathways, JAK2 and STAT3,
which are also involved in the growth of neurofibrosarcomas.

Pterostilbene exerts antitumor activity against human osteosarcoma
cells by inhibiting the JAK2/STAT3 signaling pathway.


'' Pterostilbene (PTE) is a natural, dimethylated analog of resveratrol with
higher bioavailability. While PTE has been shown to have potent antitumor
activity against various types of cancer, the molecular mechanisms
underlying the effects of PTE remain largely unknown. ''

'' The Janus kinase 2/Signal Transducer and Activator of Transcription 3
(JAK2/STAT3) signaling pathway plays a crucial role in tumorigenesis
and immune development. ''

'' Taken together, PTE is a potent inhibitor of osteosarcoma cell growth that
targets the JAK2/STAT3 signaling pathway. These data suggest that inhibition
of JAK2/STAT3 signaling is a novel mechanism of action for PTE during
therapeutic intervention in osteosarcoma cancers. ''


http://www.ncbi.nlm.nih.gov/pubmed/23313376/




Curcumin is poorly absorbed, so supplement manufacturers usually try to
come up with enhanced forms.


http://www.iherb.com/Jarrow-Formulas-Curcu...-Capsules/49382

http://www.iherb.com/Natural-Factors-Curcu...ggie-Caps/42940


If you have a gastric ulcer, you should not take curcumin or turmeric, since
it is part of the ginger family. It also thins the blood, so you should also avoid
it if you are on anticoagulants or have bleeding disorders.



Pterostilbene.

http://www.iherb.com/Source-Naturals-Ptero...-Capsules/46054





This post has been edited by Tham: Oct 31 2014, 07:42 AM

I would highly recommend you to consider to consume lingzhi too.

Reference
- http://www.cancer-fund.org/en/cancer_patie...art_eating.html
- http://www.livestrong.com/article/534292-lingzhi-for-cancer/

I have many testimonies of people clear from cancer including those at terminal stage of cancer like brain cancer, nose cancer, stomach cancer and etc.

i'm sorry, i kno wyou guys have good intentions, but there aren't enough or proper studies on all this.

may i ask what is your background:

-ngaisteve1

-Tham

Might you be able to seek treatment abroad ?

I'm not sure if they have the skill or experience here to even remove your
tumor surgically. That first oncologist you saw who said surgery is too risky,
may be correct.

Depending on which part of the kidneys or adrenals it is in, surgery in
some locations can be quite hazardous.



You appear to have an extremely rare form of cancer.

Moreover, it is one that is known to be quite aggressive, and
does not respond very well to chemotherapy or radiation.


A quick check of Medline reveals that, as of the current date, there are only :

(a) SEVEN recorded cases of MPNST of the adrenals.

(b) FOUR or FIVE recorded cases of MPNST of the kidneys.




Malignant peripheral nerve sheath tumor of adrenal gland with heterologus
osseous differentiation in a case of Von Recklinghausen's disease.


'' Only seven cases of MPNST of the adrenal gland
have been reported in the literature till date. ''

http://www.ijpmonline.org/article.asp?issn=0377-4929

http://www.ncbi.nlm.nih.gov/m/pubmed/24739852



Juxta-adrenal malignant schwannoma with lymph node metastases.


'' An extensive review revealed only 2 cases of malignant
juxta-adrenal schwannoma.

The malignant form is frequently associated with von Recklinghausen syndrome
(4% of cases) or other types of neurofibromatosis. ''

'' We report the first case of an incidentally discovered malignant schwannoma
arising from the juxta-adrenal gland with lymph node metastases. ''

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3886207/




Malignant peripheral nerve sheath tumour of the renal parenchyma
presenting as a fast growing atypical renal cyst.


'' Malignant peripheral nerve sheath tumours (MPNST) of the kidney are
very rare, with only 3 cases reported in the English and French literature. ''


http://www.ncbi.nlm.nih.gov/m/pubmed/24069105/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776038/



Malignant peripheral nerve sheath tumor of the renal pelvis.

'' There are only 4 cases reported of MPNST of the kidney. ''

http://www.ncbi.nlm.nih.gov/m/pubmed/19829045



Malignant peripheral nerve sheath tumor of kidney.

" Only five cases of malignant peripheral nerve sheath tumor of kidney
are reported to date. ''


http://www.ijkd.org/index.php/ijkd/article/view/608/337




Isolated malignant peripheral nerve sheath tumor of kidney capsule.

'' The occurrence of an isolated malignant peripheral nerve sheath tumor (MPNST)
of the kidney capsule is extremely rare and its presence may only be expressed
by an insidious onset of non-specific and misleading symptoms with a
predominance of lower back pain. ''

'' Tumor excision in toto is considered the treatment of choice,
but it can be hazardous, especially if the tumor is adhering to the
surrounding structures. ''


http://www.ncbi.nlm.nih.gov/m/pubmed/19259060/



Finally, from the above literature, your kind of rare cancer very frequently occurs
in people with NF1, or von Recklinghausen's disease. Do you have this as well ?





This post has been edited by Tham: Oct 31 2014, 10:51 PM

I have NF1 which is why i guess i have this rare kind of cancer. i have already spoken to the Selayang doctor, he didnt beat around the bush, he said upfront it is a complicating surgery and high risk but he was hopeful at the same time, chemo wont work but he said maybe radiotherapy might.

Unless i am sponsored i dont think i will be able to seek treatment abroad, too expensive.

Be positive always and never loose hope.

Well, it's good that the Selayang surgeons believe they can remove your tumors.

As for radiotherapy, ask them if they have the newer machines like Tomotherapy,
Trilogy or Elekta Synergy. Those are more precise and subject the surrounding tissues
to less radiation.

Places like Subang Jaya, Mount Miriam, Nilai and Pantai have these machines, but
treatment won't come cheap.


After your surgery and radiotherapy, I would strongly suggest that you start on the
supplements I have told you about, or any other form of adjuvant treatment like TCM.

This is because even after the tumor has being removed or radiated, the underlying
biochemical and genetic signalling pathways which stimulated the growth of the
cancer cells in the first place - are still there.

The mechanisms which causes the growth of NF2 benign tumors also appear to be
culprits behind NF1 benign and malignant tumors, particularly PAK1 and mTOR.

Thus, if you can block or suppress these pathways - you will stop or at least slow
down the growth of the tumors.





This post has been edited by Tham: Nov 5 2014, 09:22 PM

Mechanisms in the pathogenesis of malignant tumours
in neurofibromatosis type 1.

'' Several pathways are thought to be involved in the development of tumours
associated with NF1: rat sarcoma viral oncogene homologue (RAS)-mitogen
activated protein kinase (MAPK), mammalian target of rapamycin (mTOR), and
P21 protein (Cdc42/Rac)-activated kinase 1 (PAK1). ''


http://www.ncbi.nlm.nih.gov/m/pubmed/19410195



Effective neurofibromatosis therapeutics blocking the oncogenic kinase PAK1.


'' In other words, dysfunction of NF1 gene (causing type 1 NF) is basically the same as
dysfunction of NF2 gene (causing type 2 NF). In fact the growth of both NF1 and NF2
tumors requires PAK1, and all PAK1 blockers, synthetic chemicals or natural products,
suppress the growth of these NF tumor cells both in vitro (cell culture) and in vivo (mice). ''

http://www.ddtjournal.com/action/downloaddoc.php?docid=482

http://www.ddtjournal.com/getabstract.php?id=482



A clue to the therapy of neurofibromatosis type 2: NF2/merlin is a PAK1 inhibitor.

'' These results suggest that PAK1 is essential for the malignant growth of
NF2-deficient cells, and that PAK1-blocking drugs could be potentially
useful forthe treatment of neurofibromatosis types 2, in addition to
Ras-induced cancers and neurofibromatosis type 1. ''

http://www.ncbi.nlm.nih.gov/m/pubmed/15000491



CAPE (caffeic acid phenethyl ester)-based propolis extract (Bio 30) suppresses
the growth of human neurofibromatosis (NF) tumor xenografts in mice.

http://www.ncbi.nlm.nih.gov/m/pubmed/18726924/




Artepillin C (ARC) in Brazilian green propolis selectively blocks oncogenic
PAK1 signaling and suppresses the growth of NF tumors in mice.

http://www.ncbi.nlm.nih.gov/m/pubmed/19003952

Neurofibromatosis Type 1 and tumorigenesis:
molecular mechanisms and therapeutic implications.


'' Multiple key pathways are involved with the development of tumors in NF1,
ncluding Ras/mitogen-activated protein kinase (MAPK) and Akt/mammalian
target of rapamycin (mTOR). ''

'' In general, for malignant transformation to occur, there must be accumulation
of additional mutations of multiple genes including INK4A/ARF and P53, with
resulting abnormalities of their respective signal cascades. ''


'' Finally, increased knowledge of molecular and cellular mechanisms involved
with NF1 tumorigenesis has led to multiple preclinical and clinical studies of
targeted therapy, including the mTOR inhibitor rapamycin, which is demonstrating
promising preclinical results for treatment of MPNSTs and gliomas. ''

http://www.ncbi.nlm.nih.gov/m/pubmed/20043723




Expression of insulin-like growth-factor-1 receptor (IGF-1R) in
peripheral nerve sheath tumors in neurofibromatosis type 1.


'' NF1 is the most frequently inherited disease associated with a predisposition
for cancer (in particular malignant peripheral nerve sheath tumors: MPNST). ''

'' This investigation provides evidence for the expression of IGF-1R in nerve
sheath tumors in NF1.

The first evidence for IGF-1R expression in mutated Schwann cells may
indicate a tumor-type associated receptor expression in NF1. ''

http://www.ncbi.nlm.nih.gov/m/pubmed/17649826/



The common NSAID, celecoxib (Celebrex), which has very unique
anticancer activity, blocks IGF-1 and IGF-1R.



Celecoxib inhibits insulin-like growth factor 1 induced growth
and invasion in non-small cell lung cancer.

'' Celecoxib inhibited IGF-1-stimulated growth and invasion in a dose-dependent manner.
Celecoxib also reduced the expression of IGF-1R, IGFBP-3 and phosphorylation of AKT.
The results suggest that modulating the IGF axis may be a new mechanism for the
anticancer effect of celecoxib on NSCLC. ''


http://www.ncbi.nlm.nih.gov/m/pubmed/23833672/





Moreover, COX-2, as in many cancers, is overexpressed in NF1,
and celecoxib is of course a COX-2 blocker.


Overexpression of cyclooxygenase-2 in malignant peripheral nerve
sheath tumor and selective cyclooxygenase-2 inhibitor-induced
apoptosis by activating caspases in human malignant peripheral
nerve sheath tumor cells.


'' Overexpression of COX-2 (≥50% positive cells) was observed in 29 cases (65.9%),
was significantly associated with a poor overall survival and was considered an
independent risk factor for a poor outcome ..... ''

'' Selective COX-2 inhibitors including etodolac had an antitumor effect on
MPNST cells, and their use holds promise as a novel therapeutic strategy for
patients with MPNST to improve their prognoses. ''


http://www.plosone.org/article/info%3Adoi%...al.pone.0088035

http://www.ncbi.nlm.nih.gov/m/pubmed/24516579/



Etodolac is an older generation drug, less selective for COX-2 than celecoxib.


You can buy Celebrex at any pharmacy, about $3 a capsule, 200 mg.

I still have a few caps in my office drawer. Half a cap, 100 mg, will knock
down any fever far faster than paracetamol.






This post has been edited by Tham: Nov 6 2014, 07:46 PM

Not to forget about Bee Pollen too - the world's most perfect and complete health food which has more than 200 nutrients and natural

http://www.livestrong.com/article/544691-b...len-for-cancer/

http://www.webmd.com/vitamins-and-suppleme...uide-bee-pollen

http://www.drugs.com/npp/bee-pollen.html

http://www.thesuperfoods.net/bee-pollen/be...llen-for-cancer

In laboratory experiments conducted on lab mice several decades ago, Dr Robinson studied the effect of bee pollen on tumors. The laboratory mice were bred to develop tumors. Once they did so, they were divided into two groups. One group was fed regular mice food and the other was given bee pollen in addition to the food in a ratio of 1:10,000 bee pollen is to food. It was found that 100% of all the untreated mice developed mammary tumors at the expected time. Of the other group fed bee pollen, some develop similar tumors but after a delay of around 9.8 weeks and 7 out of the group did not develop any tumors until the tests ended after 62 weeks. It was concluded that the mice without bee pollen died at the expected time.

Another study conducted on 25 women with uterine cancer was undertaken in the University of Vienna. These women could not undergo surgery and were only being treated with chemotherapy. A few were given bee pollen in their diet and quickly developed greater antibody production, greater amounts of immune-system cells that fight cancer and red blood cells that can fight infections. They also suffered less of the dreadful side effects that accompany chemotherapy. Their hair loss was minimal and they suffered less nausea symptoms. Hence, these women also suffered less from insomnia. The group that did not receive bee pollen did not have the same relief.

Bee pollen does not have CAPE, artepillin and other compounds present in
propolis, which you need to block the PAK-1 gene in NF1 and NF2 tumors.








This post has been edited by Tham: Nov 6 2014, 09:26 AM

Sichuan pepper extracts block the PAK1/cyclin D1 pathway
and the growth of NF1-deficient cancer xenograft in mice.


'' Unlike FK228, these extracts do not inhibit AKT activation at the concentrations that block either cancer growth or PAK1 activation.

The Chinese pepper extract selectively inhibits the growth of NF1-deficient malignant peripheral nerve sheath tumor (MPNST)
cells, without affecting the growth of normal fibroblasts, and suppresses the growth of NF1-deficient human breast cancer (MDA-MB-231) xenograft in mice. Our data suggest that these peppercorn extracts would be potentially useful for the treatment of PAK1-dependent NF such as MPNST, in addition to a variety of PAK1-dependent cancers including breast cancers. ''


http://www.ncbi.nlm.nih.gov/m/pubmed/16418572



http://gernot-katzers-spice-pages.com/engl/Zant_pip.html




Zanthoxyli Fructus induces growth arrest and apoptosis of LNCaP human prostate cancer cells in vitro and in vivo in association with blockade of
the AKT and AR signal pathways.


http://www.ncbi.nlm.nih.gov/pubmed/16685399




This post has been edited by Tham: Nov 6 2014, 09:14 AM

Just an update, i just got discharged from the hospital and the manage to successfully removed the tumour , im not cancer free yet, still have to wait for the lab results on the tumour to get come back and then see whats the next course of treatment.

Glad to hear you had it removed. Keep us posted on the results, have plenty of rest.

Good to know that your operation was a success.

Take care.

Good to hear that. Ya update us from time to time

I think you will need to take chemo medicine right? Because my friend after the operation will need to take chemo medicine.

Get well soon.

who is the doctor that helped you in removed the tumour ?

Thank you guys for the support,
so far waiting for my incision to heal then wait for the next doctors appointment and from them know whats my next course of treatment.

Dr Krishnan was my surgeon, hes seriously a good doctor. *thumbsup*

Any updates on your situation ?

I am keen to know the outcome

Thank You