Re: Urgent feedback please

[Guest guest]

Hi Rosemary and Im sorry to hear about your sons tumor of the Orbital

Apex.Well there is Hydroxyurea that might keep the tumor which is probably a

meningioma under control ?Also the abortion drug RU-486 has been shown to

shrink or control some meningiomas and I noticed something recently that is

very interesting to me and might be to you as well?In the Life Extension

Foundation Website I noticed a letter they have written up RE: Adjuvant

drug therapy for cancer patients.The main part of my interest is combining a

-2 inhibitor such as Lodine XL with a Statin drug such as Lovastatin and

you can read the the letter to the oncologist on the site I mentioned .Here

is some things the y say I found of interest:The protein products of Ras

genes normally participate in the signal transduction cascade of sending

messages from the cell surface to the nucleus.In addition the Ras family of

oncoproteins can modulate the transduction of signals of cancer cell growth,

proliferation and metastasis.Mutations in genesen coding Ras protiens have

been intimatley associated with unregulated cell proliferation in a number

of different kinds of cancers e.g. leukemia,brain tumors,breast and

pancreatic cancers.The " Statin " Class of cholestorol lowering drugs have

been shown to inhibit the activity of the Ras oncogenes . Some of the

statin drugs that show eficacy are Lovistatin,simvastaton,and pravastatin.

Well if i heard right in the past the Ras oncognes also have alot to do with

what goes on with NF-2 meningiomas and schwanommas.You can find this Life

Extension Foundation on the web by putting it under search then you can find

the Oncolgists letter .Rosemary I am sending the letter to my neuroncologist

as well as Dr.stein and if Hydroxyurea was not keeping my meningiomas

under control I would definately be looking into this combination of statin

durg and cox -2 inhibitor and from the article it sounds like you could

combine it with another drug .Well Rosemary best of luck in treatment

and I think it could possibly be helpful .Another thing I read on Pub Med is

in Vivo and vitro Lovastatin is a potent inhibitor of meningioma growth .Put

these things together and maybe you can see why it makes me hopeful and I

may try it too .hope this helps ,Tev

[Guest guest]

Rosemary: My daughter had a very similar condition last summer that was inoperable, and she had Peacock radiation. It has stopped further growth although tumor is still there.

Sue

>From: Rosemary Lee

>Reply-To: NF2_Crew >To: Nf2 crew

>Subject: Urgent feedback please >Date: Sat, 01 Jun 2002 09:40:22 +1000 > >Have just had confirmed that Louis(9year old ) has an optic nerve sheath >meningioma, or meningioma of orbital apex. Rather large already so waiting >and watching is no an option because could endanger other eye.....can I hear >form people who have had these, who si considered best surgeon for them, >anybody had FSR, anybody take drugs to keep this kind of tumour static. >(surgeon tells us this high risk surgery, losing vision, currently perfect, >and all sorts of other things. >Need your valuable experiences please > > >

[Guest guest]

how old is your daughter, where did you have it done, and was there any side effects, deterioration of vision, facial function etc. this is a horrible decision.

I don’t even know if it is inoperable yet, but don’t like the risks of surgery( possibility of losing sight immediately as well as other functions)

how big was your daughter’s tumor, where was it? sorry, I am rather desperate for some answers.

Rosemary: My daughter had a very similar condition last summer that was inoperable, and she had Peacock radiation. It has stopped further growth although tumor is still there.

Sue

>From: Rosemary Lee

>Reply-To: NF2_Crew

>To: Nf2 crew

>Subject: Urgent feedback please

>Date: Sat, 01 Jun 2002 09:40:22 +1000

>

>Have just had confirmed that Louis(9year old ) has an optic nerve sheath

>meningioma, or meningioma of orbital apex. Rather large already so waiting

>and watching is no an option because could endanger other eye.....can I hear

>form people who have had these, who si considered best surgeon for them,

>anybody had FSR, anybody take drugs to keep this kind of tumour static.

>(surgeon tells us this high risk surgery, losing vision, currently perfect,

>and all sorts of other things.

>Need your valuable experiences please

>

>

>

[Guest guest]

Have only had one response.... nobody else had this kind of tumor,

especially as a child???

Also, any responses from parents who decided on FSR or other radiation

treatments for other tumors? Am anticipating that Louis' tumor may be

inoperable, so may have to go this way. How did your child get through

treatment, any side-effects? Is there a cut-off age? Louis is so young,

neurosurgeon did not like it as an option. not that he was confident about

operating outcomes. We would risk a lot, and still have unresected tumor.

And Sue, Re: FSR or peacock, what is the difference, why would you choose

one over the other?

[Guest guest]

Rosemary: Peacock is a type of FSR. There are several different types of radiation treatments. She let the doctors decide which one was best for her. I am sure it makes a difference what each hospital has to offer with treatment. Her eyes were beginning to cross and she also had a lot of pressure in that area. She is 40 years old and not a child as in your situation. The radiation continued to work for several months and she was very tired during this period. That was last summer and she feels pretty good now but in her case, it stopped the growth but some of the tumor is still there.. I will be praying for you and your son as you make this decision and for a great outcome... Sue

>From: Rosemary Lee

>Reply-To: NF2_Crew >To: Nf2 crew

>Subject: Re: Urgent feedback please >Date: Sat, 01 Jun 2002 23:41:48 +1000 > >Have only had one response.... nobody else had this kind of tumor, >especially as a child??? > >Also, any responses from parents who decided on FSR or other radiation >treatments for other tumors? Am anticipating that Louis' tumor may be >inoperable, so may have to go this way. How did your child get through >treatment, any side-effects? Is there a cut-off age? Louis is so young, >neurosurgeon did not like it as an option. not that he was confident about >operating outcomes. We would risk a lot, and still have unresected tumor. > >And Sue, Re: FSR or peacock, what is the difference, why would you choose >one over the other? > > >

[Guest guest]

Hi Rosemary,

I think my son Robby fits into this situation. Before we ever knew he had NF2 (when he was 8 yrs old) we discovered during a routine drs. appt that he had no vision in one eye. We brought him to an opthamologist promptly and there, through a tool that looks into the eye, he could tell that the nerve was a pale color when compared to the other eye. That is how he knew that there must be something there causing pressure on the nerve. In our case the dr. made an appt. at Mass. General Hosp. in Boston for a CT scan and an MRI. Those two tests confirmed what we thought , there was a tumor on the nerve. We scheduled surgery for two weeks from then and never considered another option. I believe the thought of radiation was ruled out because of his age.

The difference here is that Rob already lost his vision before the surgery, so that wasn't a concern for us as it is for Louis. I will mention, though, that 4 years later Robby felt his vision in the other eye had changed, so we went the route of surgery once again and the results were less than desirable. His vision declined after surgery and they said they didn't find a tumor either. They told us there were tumor cells in the area that could cause the area around the optic nerve to constrict the nerve. Fortunately, there has been no change since the surgery in 1999. We continue to go to the opthamologist once a year for testing and have MRIs too. Of course we've had the VS surgery on both ears as well and that has gone better than we could have ever imagined. Now we just pray that everything stays stable .

I hope this helps somewhat but if you have any other questions, please just ask. I know how difficult making these decisions is and having the crew with their abundant experience is worth more than a million drs appts.

Diane

[Guest guest]

I know nothing of this subject, the only caution I have read is that doctor's warn against too much radiation while a child is still developing. Might be something to ask about. Marie

Re: Urgent feedback please >Date: Sat, 01 Jun 2002 23:41:48 +1000 > >Have only had one response.... nobody else had this kind of tumor, >especially as a child??? > >Also, any responses from parents who decided on FSR or other radiation >treatments for other tumors? Am anticipating that Louis' tumor may be >inoperable, so may have to go this way. How did your child get through >treatment, any side-effects? Is there a cut-off age? Louis is so young, >neurosurgeon did not like it as an option. not that he was confident about >operating outcomes. We would risk a lot, and still have unresected tumor. > >And Sue, Re: FSR or peacock, what is the difference, why would you choose >one over the other? > > >

[Guest guest]

Luckeone98 glad you like the information in the Life Extension web site.

Tev