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Medical Forum / Diseases and Disorders / Cancer / May 2005

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blokedownpub - 21 May 2005 15:11 GMT
Hi, I just thought I drop a wee email to say hello.

I sent an message to another group regarding the use of cannabis as a
treatment for brain tumours and was given advice and invited here by J.
 Thanks J :)

My wife was diagnosed with a brain tumour about 4 years ago and had it
resected and given radiotherapy. She is now out of remission and thus
i'm investigating other treatments that'll hopefully stop the growth.
In addition to cannabis, I'm looking into thalidomide that may be a far
better option.

In all this time my wife has been an absolute star. She is being really
strong. Stronger than I. Throughout the last four years she's carried
on working as a nurse on a breast care ward where she helps people
through their cancers every day and in addition she spends her spare
time in our local cancer research charity shop.

Anyways, less of my rattling on.

Thinking of you all.

Gav.
Alayne - 21 May 2005 18:29 GMT
> Hi, I just thought I drop a wee email to say hello.
>
[quoted text clipped - 19 lines]
>
> Gav.

Hello Gav,

Welcome to the ng. although sorry that you had the need to come here.

I'm also sorry to hear about your wife too.  I do have some experience of
coping with a partner with a brain tumour., my husband Tony was diagnosed
with a GBM back in Oct 02 and it's not a pleasant journey.  I can't help you
with your specific question on thalidomide as we stuck with chemo and
radiotherapy, but I can lend a shoulder or an ear if it helps.

Warm Hugs and rattle on all you wish ;-)

Alayne
blokedownpub - 23 May 2005 10:41 GMT
Hi Alayne, nice to meet you and thanks for you warm words :)

Sorry to hear about your husband too. It sounds like you're a bit
further down this unpleasent journey than my wife, or did your husband
get offered chemo as well as radiotherapy at the beginning?

My wife's not been given chemo yet as the tumour has just started to
regrow. I'm looking in to treatments that will slow down the growth so
that it will delay the time she will need chemo.

I suppose I'm doing what everyone does at this point and that is
scrabbling around for scraps of info to find a solution to delay the
enevitable.

Thanks again for your support and I hope I do the same for you :)
Gav.
Bob Allison - 23 May 2005 22:40 GMT
> My wife's not been given chemo yet as the tumor has just started to
> regrow. I'm looking in to treatments that will slow down the growth so
> that it will delay the time she will need chemo.

I had whole brain radiation for mets of Small Cell Lung Cancer (SCLC). I
had a  second occurrence of metastases in my brain and regular radiation
was not an option.  I was treated with a machine called the CyberKnife. It
is similar to the Gamma Knife, but more patient friendly. The use is
described at
<http://www.accuray.com/ck/plan12.htm>

Google will get you more info.  Mine was done at Stanford in CA, but there
are many other locations around the world.

Worked for me.  Now i'm spreading  the word when the situation arises.

Signature

You're only young once; you can be immature forever

Bob
In Carmel, CA

J - 24 May 2005 09:16 GMT
> > My wife's not been given chemo yet as the tumor has just started to
> > regrow. I'm looking in to treatments that will slow down the growth so
[quoted text clipped - 11 lines]
>
> Worked for me.  Now i'm spreading  the word when the situation arises.

Hello Bob, I'm not sure that would work (extend survival by an appreciable
amount of time)  for Glioblastoma.
Picture a bushy tree, but a bunch of invisible roots stretching out into other
areas of the brain.
Could you please copy page 56 of this
http://www.ahfmr.ab.ca/hta/hta-publications/infopapers/stereotactic_radiosurgery
_update.pdf


here for us?
And the date.
(my computer's not happy with long PDF files).
Thanks
J
Bob Allison - 24 May 2005 21:46 GMT
> Could you please copy page 56 of this
> http://www.ahfmr.ab.ca/hta/hta-publications/infopapers/stereotactic_radiosurge
[quoted text clipped - 5 lines]
> Thanks
> J

Got a screen shot.  Where to send it?

Signature

You're only young once; you can be immature forever

Bob
In Carmel, CA

J - 25 May 2005 10:15 GMT
> > Could you please copy page 56 of this
> > http://www.ahfmr.ab.ca/hta/hta-publications/infopapers/stereotactic_radiosurge
[quoted text clipped - 4 lines]
>
> Got a screen shot.  Where to send it?

Thanks Bob.
I think Gav got it for me.
J
J - 24 May 2005 11:20 GMT
> > My wife's not been given chemo yet as the tumor has just started to
> > regrow. I'm looking in to treatments that will slow down the growth so
[quoted text clipped - 3 lines]
> had a  second occurrence of metastases in my brain and regular radiation
> was not an option.  I was treated with a machine called the CyberKnife.

Hello Bob, Could you please explain to us the risks?
Similar to surgery?

Was that the one that caused you long-standing severe fatique?
People have to know the risks and the downsides too.
I hope you'll share, so gavin can get a good picture of each option for his
wife.
Thank you,
J
blokedownpub - 24 May 2005 14:08 GMT
Here's the info:

David Hailey
May 2002

Brain tumours
SRS treatment of primary brain tumours, other than acoustic neuromas,
was not specifically considered in the 1998 AHFMR report. In the
present report, separate classification has been made for studies on
treatment of meningionas and pituitary tumours. Studies on other types
of brain tumour, primarily malignant lesions, are summarised in Table
8. It is of interest that in the eight studies that used linear
accelerator technology, four used fractionated doses. One of these
compared LINAC with FSRT and concluded that they were equally effective
but that use of FSRT was associated with a lower rate of complications.
In the remaining papers, any comparisons with surgical and other
radiotherapy approaches were based on literature reports from other
centres or historical controls. There were six studies that used the
GK, one of these in association with a brachytherapy technique.
Five studies reported treatment of gliomas, indicating relatively
limited success. Abdelaziz 182 comments that unsatisfactory results of
SRS for GBM and fair results for astrocytomas reflect use of a highly
focal treatment for the management of diffuse, infiltrative disease.
However, Alexander and Loeffler 183 suggest that SRS can result in
significantly improved survival and should be considered for patients
with small, radiographically distinct and focally recurrent GBM. The
need for appropriate use with surgery and other adjuvant therapy is
also noted.
Two of the studies considered treatment of children and indicated
useful results for some types of brain tumour.
Nieder et al. 184 have published a review of treatment results for
recurrent malignant gliomas. They conclude that post - operative
chemotherapy and radiotherapy appear equally effective, but with
differing toxicity profiles; survival results of various radiotherapy
methods are largely comparable, with a trend to improved results with
combined radiotherapy and chemotherapy; and that considerable toxicity
is associated with radiosurgery or brachytherapy.
Irish et al. 185, from analysis of cases in a clinical/ imaging data
base, have suggested that there is evidence for selection bias in
uncontrolled trials of SRS. Those patients with malignant glioma deemed
eligible for adjuvant SRS had more favourable prognostic factors and
significantly longer median survival than ineligible patients. SRS -
eligible, conventionally - treated patients with GBM and a group of
SRS -treated patients had similar median survival times (16.4 v
19.7mo). Irish et al. suggest that a phase III study of SRS for
malignant glioma would be unlikely to yield a positive result and may
not be necessary.
J - 25 May 2005 10:13 GMT
> Here's the info:

Thank you, Gav

David Hailey
May 2002

Brain tumours
Stereotactic radiosurgery treatment of primary brain tumours, other than
acoustic neuromas, was not specifically considered in the 1998 AHFMR
report.

In the present report, separate classification has been made for studies on
treatment of meningionas and pituitary tumours.

Studies on other types of brain tumour, primarily malignant lesions, are
summarised in Table 8.

It is of interest that in the eight studies that used linear accelerator
technology, four used fractionated doses.

One of these compared LINAC (stereotactic linear accelerator) with FSRT
(Fractionated stereotactic radiotherapy) and concluded that they were
equally effective but that use of FSRT (Fractionated stereotactic
radiotherapy) was associated with a lower rate of complications.

In the remaining papers, any comparisons with surgical and other
radiotherapy approaches were based on literature reports from other centres
or historical controls.

There were six studies that used the Gamma Knife, one of these in
association with a brachytherapy technique.

Five studies reported treatment of gliomas, indicating relatively limited
success.
Abdelaziz 182 comments that unsatisfactory results of SRS (Stereotactic
Radiosurgery) for GBM and fair results for astrocytomas reflect use of a
highly focal treatment for the management of diffuse, infiltrative disease.

However, Alexander and Loeffler 183 suggest that Stereotactic Radiosurgery
can result in significantly improved survival and should be considered for
patients with small, radiographically distinct and focally recurrent GBM.
The need for appropriate use with surgery and other adjuvant therapy is
also noted.

Two of the studies considered treatment of children and indicated useful
results for some types of brain tumour.

Nieder et al. 184 have published a review of treatment results for
recurrent malignant gliomas. They conclude that post-operative chemotherapy
and radiotherapy appear equally effective, but with differing toxicity
profiles; survival results of various radiotherapy methods are largely
comparable, with a trend to improved results with combined radiotherapy and
chemotherapy; and that considerable toxicity is associated with
radiosurgery or brachytherapy.

Irish et al. 185, from analysis of cases in a clinical/ imaging data base,
have suggested that there is evidence for selection bias in uncontrolled
trials of Stereotactic Radiosurgery.

Those patients with malignant glioma deemed eligible for adjuvant
Stereotactic Radiosurgery had more favourable prognostic factors and
significantly longer median survival than ineligible patients.

Stereotactic Radiosurgery (SRS)-eligible, conventionally-treated patients
with GBM and a group of SRS-treated patients had similar median survival
times (16.4 v 19.7mo).

Irish et al. suggest that a phase III study of Stereotactic Radiosurgery
for malignant glioma would be unlikely to yield a positive result and may
not be necessary.
J - 25 May 2005 12:09 GMT
> Here's the info:

Hello Gav,
I've reposted it.
Gad, I had to search out the acronyms and convert them.
I re-paragraphed that section of the longer article to see if I could make
sense of it.
I'm still not totally certain what one paragraph says about "radiosurgery"
and toxicity.

I picked that website for several reasons:
Alberta (I think) is more technically advanced (read: spends more on
advanced technical equipment) and based on reading another newsgroup, has
excellent neurosurgeons.
I also picked it in the hope that it would be objective (ie not trying to
"sell" a procedure.

There's another (objective, I think) one here.
It shows pictures of the machine and someone being prepared for treatment.
http://www.vh.org/adult/patient/radiationoncology/guide/04understanding.html

Risks of Linac Treatment

The radiosurgery physicians will explain the radiosurgery risks that apply
to your particular situation when they meet with you during your initial
consultation.

There is minimal if any immediate risk of radiosurgical therapy. In the
case of AVMs, the goal is to create "thrombosis" or a depletion of blood
supply to the AVM. It typically takes up to three years for an AVM's blood
supply to completely shut down. During that time, a small number of AVM
patients, about 3 percent per year, experience rebleeding. The risk of
bleeding after radiosurgery is about the same as living with an untreated
AVM and this is fortunately very small. Therefore, waiting for the
treatment to produce a cure is a common practice.

There is a very small incidence of delayed side effects from treatment
related to the radiation. Radiation exposure sometimes causes brain tissue
around the AVM to die, leading to a variety of neurological complications,
depending on the location of the lesion. This occurs in less than 3 percent
of AVM patients.

The goal in patients with an acoustic neuroma (AN) or meningioma is
shrinking of the tumor or stopping the growth of the tumor. About half the
patients with an acoustic neuroma (AN) or meningioma show a shrinkage of
the tumor after radiosurgery, while about 40 percent of tumors remain the
same. Less than 10 percent of these tumors continue to grow. Facial nerve
and/or trigeminal nerve problems develop in about 3 percent of AN patients.

Malignant tumors may also occasionally have late side effects. The chance
of such an event depends on the size of the lesion, the specific type of
tumor, as well as any previously received dose of radiation and tumor
location. The specific risk for you should be discussed with you by your
physician.

here, they're talking about metastasis...
One major consideration of the radiosurgery team when deciding whether your
lesion is treatable with radiosurgery is its size. Patients whose lesions
are less than 4 cm in diameter are potential candidates for LINAC
treatment. The decision as to whether the best treatment is radiosurgery,
surgery, or stereotactic radiotherapy requires careful consideration of all
aspects of your case by medical experts in neurosurgery, radiation
oncology, and other specialties. In addition, the patient should make an
informed decision based on the information provided by these experts.[end
copied text]

What I have been trying to accomplish is to find out if:
1) such treatment has risks/complications - I guess you would have to ask a
specialist or ask for their standard consent form, to see what warnings
they put on it (or say about the particular treatmnts).
2) how it compares to regular radiatherapy (gain, risks, costs)
3) how it compares to chemos, such as you are investigating (gain, risks,
costs)
4) whether your wife would be a good candidate. (see "4 cm in diameter
"above)

I'm not sure that I've accomplished any of it.
I'm not sure if it's available in the country where you are living.
I'm not sure if there's a certainty of only the few months extra, which
seems to be implied in that first article, or things could be different in
your wife's tumour situation.  I would sincerely like to think that longer
might be possible for your wife with this treatment now vs waiting until
the tumour grows and treating it with chemo, but I'm not an expert on any
of this.

You would have to discuss this option with specialists in your area.

I've done the best I can. If I find anything else that might be helpful or
relevant to this treatment, I'll let you know.
J
blokedownpub - 26 May 2005 17:21 GMT
Thanks  J, you really know what you're talking about. Are you in the
medical profession?

I'll pass this information onto my wifes consultant. Thanks ever so
much again.

Gav.
J - 27 May 2005 10:23 GMT
> Thanks  J, you really know what you're talking about. Are you in the
> medical profession?
>
> I'll pass this information onto my wifes consultant. Thanks ever so
> much again.

Hello Gav,
No, I'm not in the medical profession. Steph and Peter Moran are doctors.
I try to present good information so that patients or loved ones, can
consider options carefully.

I'm not sure what a "consultant" is.  It's a very general term, when I use
it.
I would want to speak to someone who is expert at reading brain scans,
knows about how each type of brain tumour behaves and is technically
skilled and experienced at radiology and who knows of others (similar to
your mother's situation), who may have tried SRS.  This might be difficult
to do, since SRS equipment may not be as available in some countries and
given that your wife is in a relatively good position (small tumour - GBM)
and have the benefit/time of considering choices.  Maybe I'm overthinking,
but perhaps a neurologist's opinion, might be helpful also.

Since you realize now that I'm not an expert, I can only leave you to
considering the advice that you will receive from experts and going with
what you and your wife think is best for your wife.  I don't want you to
"break the bank" if SRS is not covered in your country, if there'd be no
improvement over doing nothing or trying one or other chemo. Or if regular
"judicious" radiation therapy, would do as good as SRS.

I have high hopes that your wife's situation will be different and she
will become a longer survivor.
My best to you in your decisions.
J
J - 29 May 2005 11:55 GMT
> Here's the info:
>
[quoted text clipped - 10 lines]
> would be unlikely to yield a positive result and may
> not be necessary.

More on GBM
http://brain.mgh.harvard.edu/PatientGuide.htm (excerpt)
Types of therapy

There are three standard types of treatment for patients with high-grade
gliomas: surgery, radiation therapy, and chemotherapy.

Because grade 3 and 4 tumors have a tendency to grow rapidly, treatment
must be started as soon after surgery as is feasible, allowing time for the
surgical incision to heal. Generally, this means that patients should be
undergoing either radiation therapy or chemotherapy within 2 to 4 weeks
after surgery. An algorithm that is commonly used for treatment of
high-grade gliomas is presented on the following page.

While therapies for high-grade gliomas are helpful, at present these
treatments cannot cure these tumors.

The two major reasons for this are that tumor cells infiltrate into
surrounding brain and thus cannot be completely removed by the surgeon, and
that most glioma cells are at least partially resistant to radiation and
chemotherapy.

The goals of treatment are to:

   -remove as many tumor cells as possible (with surgery)
   -kill as many as possible of the cells left behind (with radiation and
chemotherapy)

   -put remaining tumor cells into a nondividing, sleeping state for as
long as possible (with radiation and chemotherapy)

High-grade glioma cells almost always start to grow again at some point in
time.
Bob Allison - 24 May 2005 22:13 GMT
> Hello Bob, Could you please explain to us the risks?
> Similar to surgery?
[quoted text clipped - 5 lines]
> Thank you,
> J

The chest and whole brain radiation caused the fatigue. The Cyberknife was
a one time treatment with no noticeable side effects. Stereo-tactic
Radio-surgery will zap tumors that can't be reached by normal surgical
means.  It is particularly good for tumors that are close to, or wrapped
around a nerve, blood vessel, spinal cord, etc. or when he amount of
radiation receivable has been maxed out

I understand it is being used on tumors in locations other than the brain.  
Just guessing, but it seems fit for liver cancer, especially where there
are multiple sites involved. My observations are purely from a patient's
point of view, so anything I say can and will be used against me in a court
of law :=)

The cost is probably about the same as for surgery.  My treatment cost Blue
Cross about $12,000 US

BTW Sunday May 29 will be my 2 year anniversary.

Signature

You're only young once; you can be immature forever

Bob
In Carmel, CA

J - 25 May 2005 11:47 GMT
> The chest and whole brain radiation caused the fatigue. The Cyberknife was
> a one time treatment with no noticeable side effects. Stereo-tactic
[quoted text clipped - 11 lines]
> The cost is probably about the same as for surgery.  My treatment cost Blue
> Cross about $12,000 US

Thank you, Bob. It's expensive (I understand - they have to pay for the equipment
and training etc)

> BTW Sunday May 29 will be my 2 year anniversary.

And glad we are that you are here with us. :-)
Happy Anniversary, Bob !
J
J - 22 May 2005 11:29 GMT
> Hi, I just thought I drop a wee email to say hello.
>
[quoted text clipped - 15 lines]
>
> Anyways, less of my rattling on.

Hello Gav,

I'm glad you found us.
We're here to listen and care.
Your wife's done really well. You're right; she's a star patient and sounds
like a wonderful person and nurse.

I put your wife's type of cancer in the subject line, in case others want
to drop in and post to you.
(some don't read all the posts, they just check the subject lines)

Last night, I found a list of GBM survivors.
As best I can remember, they had surgery, radiation therapy and later
temodar (temodal).
One or more had a resurgery. Is that not an option for your wife?
How's your wife feeling now? (ie does she currently have troublesome
symptoms?)
Did she initially have surgery and/or radiation therapy?

Thalidomide's been around for a long time. I see cliniical trials for brain
tumours and thalidomide dating back at least to 1999. I would think if it
had proven to be useful, they would have suggested it quickly for Alayne's
Tony.
Is there a Phawe III or Phase IV clinicial trial for same? Please/thanks.

Keep in touch and rattle on all you want.
J
J - 22 May 2005 11:42 GMT
> Hi, I just thought I drop a wee email to say hello.
>
[quoted text clipped - 13 lines]
> through their cancers every day and in addition she spends her spare
> time in our local cancer research charity shop.

Hello Gav,
I found some Phase I and II trials for brain tumours and thalidomide (with
or without other treatmetns).
Here's an example (it's phase II -measuing for efficacy and toxicity).

http://clinicaltrials.gov/ct/show/NCT00079092?order=1

RATIONALE: Thalidomide may stop the growth of malignant glioma by stopping
blood flow to the tumor. Drugs used in chemotherapy, such as procarbazine,
work in different ways to stop tumor cells from dividing so they stop
growing or die. Combining thalidomide with procarbazine may kill more tumor
cells.

PURPOSE: This phase II trial is studying how well giving thalidomide
together with procarbazine works in treating patients with recurrent or
progressive malignant glioma. <end quoted text>

Your wife sounds like a good candidate.
Maybe I'm being dumb today, but I wonder how thalidomide stops the blood
flow to the tumor without stopping the blood flow to the brain?  Any ideas?

J
blokedownpub - 23 May 2005 10:56 GMT
Hi J, thanks for your kind words and investigating thalidomide for me.
I'll have a good read of the info this evening and see if the trial
would be well suited to my wife.

My wife is feeling fine at that moment. She has been having mri scans
every six months and it has caught the tumour early. The scan has been
sent to the surgeon to see if it's worth operating on now but the
consultant thinks that the best thing is to leave it until the tumour
has grown. This is why i want to do something now to try and stop it
from growing. He doesn't want to give her chemo now as the tumour will
get resistant to it so it's better to wait until it is necessary.

Regarding how thalidomide works, I think (and don't quote me on this)
that it doesn't stop the blood flow. When tumours reach a certain size,
they have to create their own blood supply and the thalidomide stops
this taking place. It's the same thing as happened to thalidomide
children.

Thanks again :)
Gav.
J - 24 May 2005 10:57 GMT
> Hi J, thanks for your kind words and investigating thalidomide for me.
> I'll have a good read of the info this evening and see if the trial
[quoted text clipped - 12 lines]
> they have to create their own blood supply and the thalidomide stops
> this taking place.

Thanks for explaining, Gavin.

Well that trial combined thalidomide with procarbazine which is a chemo
(not thalidomide alone).
They're listed separately here
http://www.cancerbacup.org.uk/Treatments/Biologicaltherapies/Angiogenesisinhibit
ors/Thalidomide


http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Individualdrugs/Procarbazine

I hope you understand that I'm not recommending anything; we're just
exploring options?

I wonder how thalidomide gets to the tumour before it has a created it's
own blood supply?
It's used for blood cancer - myeloma.

For some reason VEGF came to mind. vascular endothelial growth factor.
http://www.ons.org/publications/journals/pdfs/spotlight45.pdf
The normal vessel is different from the tumor vessel. This is why we
believe
we can target tumor vessels without targeting normal vessels,” Venook said.

Tumor blood vessels, for unknown reasons, are different and may be more
vulnerable or more dependent on VEGF.
(later they mention glioblastoma).
Belief is not always fact.
I would have to bow to a comment by Steph and hopefully not "it has its
uses".

Sounds to me that Bob's idea might be a better one, but I don't know  -
have to wait until someone copies that section here (of the pdf file) so we
can all read it.

a) the risks and
b) if it's available where you are
J
tracysmithpdx@hotmail.com - 29 May 2005 16:36 GMT
Hi: Check out stopmycancer.com about a woman with a brain tumor who is
trying a new treatment with great results. Just might be helpful.
J - 29 May 2005 17:21 GMT
> Hi: Check out stopmycancer.com about a woman with a brain tumor who is
> trying a new treatment with great results. Just might be helpful.

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