RCC in brain ; stereotactic or whole brain irradiation

I have 3 brain tumors. You can see two here (from my ct scan)
http://lh6.ggpht.com/tonyjeffs2/SBL3.../brain%201.jpg

The hospital want me to have whole brain radiation, with the intent of
mopping up any other tumors which are as yet too small to show up on
the scan.
I am reluctant because I have read that clear cell kidney cancer is
very resistant to radiation. I feel that this means it would take a
lot more exposure to damage the tumors and would damage my brain
proportionally more. Consequently I want to argue for stereotactic
radiosurgery such as gamma knife, targetting only the 3 visible
tumors, perhaps returning at a later stage to treat other tumors
should they appear.

What do other people think about targetted radiation vs generalised
radiation for RCC?

Thanks
Tony

tonyjeffs <tonyjeffs2@googlemail.com> fell face-first on the keyboard.
This was the result:
news:b8127b25-08a9-4507-9671-c1e24b330874@34g2000hsf.googlegroups.com:

> I have 3 brain tumors. You can see two here (from my ct scan)
> http://lh6.ggpht.com/tonyjeffs2/SBL3...USSIBn4eVc/bra
> in%201.jpg
>
> The hospital want me to have whole brain radiation, with the intent of
> mopping up any other tumors which are as yet too small to show up on
> the scan.
> I am reluctant because I have read that clear cell kidney cancer is
> very resistant to radiation. I feel that this means it would take a
> lot more exposure to damage the tumors and would damage my brain
> proportionally more. Consequently I want to argue for stereotactic
> radiosurgery such as gamma knife, targetting only the 3 visible
> tumors, perhaps returning at a later stage to treat other tumors
> should they appear.
>
> What do other people think about targetted radiation vs generalised
> radiation for RCC?

Well, first thing's first: It's *your* health. *You* need to make the
decisions that you are most comfortable with, providing you have educated
yourself as much as possible about all your options (Which you are
obviously doing )

Personally, I agree with you: I would feel more comfortable doing the
targeted radiation myself; Heck, that *is* what I'm going through right
now via tomotherapy machine (I won't pretend to be an expert, but a bunch
of beamlets delivered in a helical fashion via a donut-shaped gantry)

All that being said, though, have you asked your doctors why they want to
irradiate the entire head instead of the much more focused approach ?
Most definitely tell them about your concerns about additional damage to
non-diseased tissue - that's a very valid concern. I asked about
radiation exposure to my own brain and was told that my treatment profile
is such that the bulk of the radiation is delivered to the jugular bulb
and surrounding bone, where the tumour was; Some of the brain most
definitely is receiving radiation, but I've been told it's well within
tolerance levels and the brain's ability to heal/resist/recover.

On the lighter side, if you end up going for whole brain radiation, if it
ends up being the best for you, think of it this way:

More radiation = More chances of mutant super hero powers.
I've repeatedly asked my radiation therapists for some guarantee of the
ability to fly, climb walls or have laserbeam eyes, but they kept
muttering something silly about it "not being possible". I'm quite
convinced that they're hogging all the "good" radiation for when us
cancer folks go home in the evening

--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

tonyjeffs <tonyjeffs2@googlemail.com> fell face-first on the keyboard.
This was the result:
news:b8127b25-08a9-4507-9671-c1e24b330874@34g2000hsf.googlegroups.com:

> I have 3 brain tumors. You can see two here (from my ct scan)
> http://lh6.ggpht.com/tonyjeffs2/SBL3...USSIBn4eVc/bra
> in%201.jpg
>
> The hospital want me to have whole brain radiation, with the intent of
> mopping up any other tumors which are as yet too small to show up on
> the scan.
> I am reluctant because I have read that clear cell kidney cancer is
> very resistant to radiation. I feel that this means it would take a
> lot more exposure to damage the tumors and would damage my brain
> proportionally more. Consequently I want to argue for stereotactic
> radiosurgery such as gamma knife, targetting only the 3 visible
> tumors, perhaps returning at a later stage to treat other tumors
> should they appear.
>
> What do other people think about targetted radiation vs generalised
> radiation for RCC?
>
> Thanks
> Tony

Hey Tony; Just got back from radiation in Ottawa now (22 out of 28 done -
Almost there - Yay!) As they were getting ready to bolt me down to the
Frankenstein table, I told the radiation therapist that someone (you) had
posted their brain image to the 'net, showing two tumours towards the
outside of the brain, near the skull; I mentioned that your doctors wanted
to go with whole brain radiation and that you were asking why not a more
focused approach, as well as a concern for damage to the rest of the brain
and for her opinion on it.

She said that (obviously) she doesn't know the details of your situation,
but that whole brain radiation wasn't all that uncommon. She said the
doctor could be taking a "prophylactic" approach and may be concerned with
"micro-cell" incursions (I think that's the term she used). I asked her if
there wasn't a danger to the brain with all that radiation and she said
that the dosages were very carefully calculated to be within the brain's
ability to heal. She said there may be swelling of the brain, but that it
was controllable/manageable via drug treatment. She mentioned that they did
whole brain radiation on the very machine I was about to go into.

Hope that's of some help.



--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

tonyjeffs wrote:

> I have 3 brain tumors. You can see two here (from my ct scan)
> http://lh6.ggpht.com/tonyjeffs2/SBL3.../brain%201.jpg
>
> The hospital want me to have whole brain radiation, with the intent of
> mopping up any other tumors which are as yet too small to show up on
> the scan.
> I am reluctant because I have read that clear cell kidney cancer is
> very resistant to radiation. I feel that this means it would take a
> lot more exposure to damage the tumors and would damage my brain
> proportionally more. Consequently I want to argue for stereotactic
> radiosurgery such as gamma knife, targetting only the 3 visible
> tumors, perhaps returning at a later stage to treat other tumors
> should they appear.
>
> What do other people think about targetted radiation vs generalised
> radiation for RCC?

Hello Tony,
This is (part of) what cancerhelpUK writes
http://www.cancerhelp.org.uk/help/default.asp?page=4051
"Radiotherapy for kidney cancer"
"Radiotherapy for spread to the brain

This treatment can be very successful at controlling symptoms and slowing down the
growth of the cancer. It can be given in a number of different ways. How it is
given depends mostly on the size and number of areas of cancer spread in your brain.
If there is only one area affected, it may be treated with stereotactic radiotherapy.

If the cancer affects part of your brain, you will most likely be given about 10
separate treatments (fractions). This treatment will be given daily, Monday to
Friday, so the complete radiotherapy course will take 2 weeks.

If there are widespread areas of your brain affected by cancer, or if your
radiotherapy specialist thinks there could be cancer cells spread throughout that are
too small to detect on a scan, you can be treated with whole brain radiotherapy.
This is usually given in about 5 treatments (fractions), which takes a week.

Stereotactic radiotherapy
This is quite a new technique for treating small areas of the brain with high doses
of radiation. It is a very specialised treatment and can only be given in large
treatment centres. The aim of the treatment is to get rid of the cancer in your
brain altogether.

and BC, Canada
http://www.bccancer.bc.ca/PPI/Typeso...ey/default.htm
"Radiation therapy is not useful as a primary treatment, but may be used to relieve
pain, or as palliative treatment for advanced cancer. "

Looking at your scan, I'd have to say that you've got widespread areas of the brain
affected; those seen and those too small to be seen.

Bob (Robert) has/had? SCLC (lung cancer) and I think his (brain tumor) was (treated
by) GammaKnife - targeting a small area Twice - recurrred or a new one popped up.
But there's been so sign of cancer elsewhere so far, so that has worked well for him.
I could be wrong but I think it took a year for him to fully recover from the
fatigue. Angie also had something gammaknife like - she had a recurrence and it was
redone. She had to have steroids for the brain swelling, with the side effects that
go with that: moody and trouble sleeping and probably fatigue. I last saw her talking
about hoping to be able to go back to work. She was "less functional" for quite a
while; perhaps a year.

On the other hand, Gord's wife had SCLC and it spread to the brain. She had WBRT and
I do not recall her having to have steroids. Her adult kids went to stay and care
and visit. Ater they left, Gord continued but found it difficult caring for her alone
(the lifting and 24-hour thing), so she entered hospital. So my conclusion is that
WBRT is palliative and a lower dose than the targeted RT. My cousin had multiples in
his brain. He had WBRT. As best I recall he was "in care" for 2 or 3 months, then was
able to (go home &) enjoy what time he had left; able to walk on his own, no
steroids, visit with relatives, go out shopping or for snacks and meals with his
sister.

The occurrence of brain metastases is often associated with the terminal stage of the
disease and generalized metastasizing.

I haven't had a lot of time to search on time predictions. The ones I saw mentioned
"_median_ 4.6 - 6 months ", so 50% live longer and 50% don't live as long, Another
said approximately 5 months. Apparently melanoma is the worst (foor brain mets) and
if I recall correctly, from the time of detection to when he died, was approximately
6 or 7 months.
Here's the article. http://www.springerlink.com/content/x517201463447333/
Of course, I hope you'll be at the long end of the median survival.

Looking at the potential deficits, and the cases I cite, I think I would opt for
WBRT. I think I'd rather be as functional as possible for as long as possible, then
slip away gently as Gord's wife and my cousin did, rather than deal with steroids and
anti-seizure meds.

PS Have you thought of asking to talk it over with a radiation oncologist?

If I'm wrong about anything above, I apologize.
I'm sorry to hear about your brain mets, Tony.
Please keep in touch and let us know how the treatments go
J.

In article <48176194.6B629CE9@execulink.com>, J <xnswex@nalid;"no> wrote:

> Bob (Robert) has/had? SCLC (lung cancer) and I think his (brain tumor) was
> (treated
> by) GammaKnife - targeting a small area Twice - recurrred or a new one
> popped up.
> But there's been so sign of cancer elsewhere so far, so that has worked well
> for him.
> I could be wrong but I think it took a year for him to fully recover from the
> fatigue.

Pretty good memory. Much better than mine.

I was offered PCI, but declined. 6 weeks later a MRI found 2 little sites in my
cerebellum. WBR took care of them. It also re-drew my hairline. I now have an
almost bald strip right on the top of my head. Just a little fuzz there from my
forehead to the crown of my head. 8 or 9 months later I had a met in my
hipocampus. This time I got CyberKnife treatment.

The good news is it got the varmint. The bad news is that there is some brain
damage that will be permanent. (probably from the WBR) In my case, I bounced
off walls when going down the hallway, or sometimes when turning corners in a
hallway. That went away. So did the extreme fatigue. About the only lasting
side effect is some decrease of my short term memory. I can live with that. I
have a "paper brain" that helps me remember things to get from the store, or
even stuff to Google later.

In short, if offered prophylactic radiation (PCI) take it. The whole brain
radiation is a little stronger than PCI I asked my Onc. and he said that PCI is
about 25,000 whatevers, while WBR is 40,000 whatevers. I'll never know if PCI
would have zapped the bugers, or not.

Life is about back to normal, but I still get winded easily. I had lots of
radiation to my lungs. May 29 will be my 5 year mark since diagnosis, and 3 1/2
years NED (No Evidence of Disease).

What ever you do will be the right thing for you. Good luck, and keep us posted
on your progress.

--

The 5 food groups:
Chocolate, Coffee, Pizza, Quick and Easy

Bob in Central California

"What ever you do will be the right thing for you."

Thanks to everyone.
I think the above, which several people have echoed, is a key point.
As long as I have some control of my treatment strategy, I'm going to
feel comfortable with the decisions made. I don't think therr really
is a 'wrong' choice so long as it is my choice.
-A further round of discussions with my doctors today if he's back
from his holiday...and then it's all go.

Much to do at this early hour before my steroids kick in and make me
too hyperactive to concentrate properly. Not too bad a feeling, but
not condusive to doing anything important like tax returns! Perhaps a
long walk.

I'll keep you informed. Thanks again.

Clear rcc diagnosed 1999. Radical Neph.
'Cureed' for 6 years.
Lung lymph mets 2005
Brain mets 2008

Tony

J, no> wrote:

> tonyjeffs wrote:
>
> > I have 3 brain tumors. You can see two here (from my ct scan)
> > http://lh6.ggpht.com/tonyjeffs2/SBL3.../brain%201.jpg
> >
> > The hospital want me to have whole brain radiation, with the intent of
> > mopping up any other tumors which are as yet too small to show up on
> > the scan.
> > I am reluctant because I have read that clear cell kidney cancer is
> > very resistant to radiation. I feel that this means it would take a
> > lot more exposure to damage the tumors and would damage my brain
> > proportionally more. Consequently I want to argue for stereotactic
> > radiosurgery such as gamma knife, targetting only the 3 visible
> > tumors, perhaps returning at a later stage to treat other tumors
> > should they appear.
> >
> > What do other people think about targetted radiation vs generalised
> > radiation for RCC?
>
> [snipped]

Hello Readers:
I am replying to my own post to say that I regret most of what I wrote:
Message ID : http://groups.google.com/group/alt.s...291cc7b3a6c8c6
This is what I should have replied, IMO

> Have you thought of asking to talk it over with a radiation oncologist?
>
> I'm sorry to hear about your brain mets, Tony.
> Please keep in touch and let us know how the treatments go

Here's some links for what they're worth.
http://en.wikibooks.org/wiki/Radiation_Oncology/Kidney
http://cat.inist.fr/?aModele=afficheN&cpsidt=13965761 Repeated gamma knife surgery for
multiple brain metastases from renal cell carcinoma
http://tinyurl.com/3py8ay (http://www.urosource.com/ ) Brain metastasis from renal cell
carcinoma
http://cat.inist.fr/?aModele=afficheN&cpsidt=15571455 LINAC radiosurgery for brain
metastasis of renal cell carcinoma

Thanks (all) for your patience with me.
Best of luck, Tony
J

Hi Mark, Bob,
Reassuring to meet people in the same boat. Thanks for the info and I
wish you - all of us myself included- the best results.


> J, no> wrote:
> I am replying to my own post to say that I regret most of what I wrote:

Hi J,
I thought it was very helpful what you wrote, as always.
I will talk it over, but I think the psychological aspect, me wanting
to be in control, will lead me towards Gamma Knife. I doubt my doctors
will be able to convince me otherwise unless they pull out some text
books in the course of the conversation.

Hey, My appointment has come through at last. I've been hassling the
hospital all day, trying to make things move a little faster.

That feels like progress!

Thanks

Tony

tonyjeffs wrote:

>I have 3 brain tumors. You can see two here (from my ct scan)
>http://lh6.ggpht.com/tonyjeffs2/SBL3...iUSSIBn4eVc/br
>ain%201.jpg
>
>The hospital want me to have whole brain radiation, with the intent of
>mopping up any other tumors which are as yet too small to show up on
>the scan.
>I am reluctant because I have read that clear cell kidney cancer is
>very resistant to radiation. I feel that this means it would take a
>lot more exposure to damage the tumors and would damage my brain
>proportionally more. Consequently I want to argue for stereotactic
>radiosurgery such as gamma knife, targetting only the 3 visible
>tumors, perhaps returning at a later stage to treat other tumors
>should they appear.
>
>What do other people think about targetted radiation vs generalised
>radiation for RCC?
>
>Thanks
>Tony

Think about trying THC instead. http://phoenixtears.ca/

--

tonyjeffs wrote:

> Hi Mark, Bob,
> Reassuring to meet people in the same boat. Thanks for the info and I
> wish you - all of us myself included- the best results.
>
> > J, no> wrote:
> > I am replying to my own post to say that I regret most of what I wrote:
>
> Hi J,
> I thought it was very helpful what you wrote, as always.
> I will talk it over, but I think the psychological aspect, me wanting
> to be in control, will lead me towards Gamma Knife. I doubt my doctors
> will be able to convince me otherwise unless they pull out some text
> books in the course of the conversation.
>
> Hey, My appointment has come through at last. I've been hassling the
> hospital all day, trying to make things move a little faster.
>
> That feels like progress!

It's good to hear you've got an appointment, Tony.
Gamma knife sounds good to me, after I read those newer reports.
Please let us know how things go.
Thanks for your kindness.
I'll be here, listening and caring.
J

In article <481D1315.9A903A43@execulink.com>, J <xnswex@nalid;"no> wrote:

> It's good to hear you've got an appointment, Tony.
> Gamma knife sounds good to me, after I read those newer reports.
> Please let us know how things go.
> Thanks for your kindness.
> I'll be here, listening and caring.
> J

I'll be watching for your reports.

bobert

--

The 5 food groups:
Chocolate, Coffee, Pizza, Quick and Easy

Bob in Central California

Update:
Yesterday was the first time in the decade since my first diagnosis
that I've been nervous. I was afraid of getting emotional when I met
my neurologist today and blew my image . Last time, he'd dominated the
conversation and it'd been hard for me to get a word in. But Today he
was brilliant. One of the best. (I think previously he'd been rushing
to get through a backlog of patients)

The good news (!) is that I only have the 3 tumours that can be seen
on the MRI scan. We expected a snow of small tumours like in my lungs,
but that wasn't the case.
The bad news is that at his meeting with colleagues they all said that
WBR was the appropriate treatment. (Why - no mass of tumour dust to
mop up - doesn't make sense)
I'd feared he'd be pushy in that direction too, and I'm a bit in awe
of him, but no - he talked to me as an equal, and gave me plenty of
opportunity to say a definite "NO" to wbr.
I'd been of the opinion that conventional surgery was the best option,
but he convinced me that "winkling out" a tumor, digging and pulling,
would pose a high risk of damage to brain tissue, possibly leaving me
with significant loss of function in my hand(s) or elsewhere.
Which brought us to Stereotactic. (They don't do gamma knife - but
one of the others. Similar principle.
He's going to go back to his colleagues, ask them again about
conventional surgery, but ultimately push for stereotactic.
I think it'll work out. I'll hopefully gain a significant life
extension without loss of quality.

The steroid dexamethason has given me a new lease of life,
particularly now that the effects are mellowing. Lots of enthusiasm
and energy. Sadly he wants to wean me off it. But que sera.

So I think things are looking good.
If this goes well, I'll have to look at getting some of the bigger
chest tumors removed. Pity they won't typically use non-invasive
treatments on them.

So - I think things are looking good. Really nice guy the neuro.

Tony

tonyjeffs wrote:

> Update:
> Yesterday was the first time in the decade since my first diagnosis
> that I've been nervous. I was afraid of getting emotional when I met
> my neurologist today and blew my image . Last time, he'd dominated the
> conversation and it'd been hard for me to get a word in. But Today he
> was brilliant. One of the best. (I think previously he'd been rushing
> to get through a backlog of patients)
>
> The good news (!) is that I only have the 3 tumours that can be seen
> on the MRI scan. We expected a snow of small tumours like in my lungs,
> but that wasn't the case.
> The bad news is that at his meeting with colleagues they all said that
> WBR was the appropriate treatment. (Why - no mass of tumour dust to
> mop up - doesn't make sense)
> I'd feared he'd be pushy in that direction too, and I'm a bit in awe
> of him, but no - he talked to me as an equal, and gave me plenty of
> opportunity to say a definite "NO" to wbr.
> I'd been of the opinion that conventional surgery was the best option,
> but he convinced me that "winkling out" a tumor, digging and pulling,
> would pose a high risk of damage to brain tissue, possibly leaving me
> with significant loss of function in my hand(s) or elsewhere.
> Which brought us to Stereotactic. (They don't do gamma knife - but
> one of the others. Similar principle.
> He's going to go back to his colleagues, ask them again about
> conventional surgery, but ultimately push for stereotactic.
> I think it'll work out. I'll hopefully gain a significant life
> extension without loss of quality.
>
> The steroid dexamethason has given me a new lease of life,
> particularly now that the effects are mellowing. Lots of enthusiasm
> and energy. Sadly he wants to wean me off it. But que sera.
>
> So I think things are looking good.
> If this goes well, I'll have to look at getting some of the bigger
> chest tumors removed. Pity they won't typically use non-invasive
> treatments on them.
>
> So - I think things are looking good. Really nice guy the neuro.
>
> Tony

Hello Tony,
Thank you for the update.
Stereotactic sounded good to me, but then I started thinking (which can be
a dangerous thing)
that maybe it's the "tumour dust", as you call it, the ones that can't be
seen on scans, that can be the killers.
When they find a blood supply, start growing faster and cause brain bleeds
?
I wonder if you can fax, email or leave a short message asking the
question?
Meantime, other "tumour dust" could be lurking in other organs, is
possibly why they don't address the lung tumours or location (not wanting
to cause more harm than good)

It's a darned shame - your cancer seemed slower growing for 10 years.
I think it's Steph who said we don't know what causes them to start
growing or growing faster.
(sorry, Steph, if I'm misquoting you).

Maybe that question would settle whether it should WBR or stereotactic.

I think (but could be wrong) that Angie (squamous) had WBR first and then
had cyberknife twice later.
She's still around - seen on other newsgroup recently, but I don't know if
that's because she's earlier in her progression of the cancer.

I always have questions later and it's so hard, in our system, to get back
to the doctor since they're so busy in our healthcare systems. If you
don't think it's worth asking or have already gotten answer, please ignore
my suggestion.
PS Maybe there's 3 questions to be asked (based on my re-read of my
reply)- might need an appointment or when you see him next).

I wish you the best and hope they can assist you to live longer.
Please keep in touch. I'm slow replying, but doing my best.
J

> Stereotactic sounded good to me, but then I started thinking (which can be
> a dangerous thing)

I have the same problem :-)

> that maybe it's the "tumour dust", as you call it, the ones that can't be
> seen on scans, that can be the killers.

Yes, This is what my doctor was concerned about during our previous
meeting, the one before the MRI scan. We expected to see that because
that is what it is like in my lungs, but the MRI revealed nothing
besided the 3 10mm tumors. Of course it wouldn't detect anything
smaller than 2mm, but the fact that there are no brain tumors between
2 & 8 mm makes it near certain that there is no tumor dust inside my
brain.

> When they find a blood supply, start growing faster and cause brain bleeds
> ?

It is a possibility. My guess is that the cancer has contaminated my
DNA, adding a methyl group somewhere, So rather than actual stray
cancer cells migrating, it takes a foreign ligand or 'activator',
maybe nicotine, or maybe something intrinsic to the body like
prostaglandin, to switch on that aberrant gene. (I'd like to do a
proper university course module and understand it better. Perhaps
after the summer I will if I'm still ok)

My bottom line, though, is I'm adamant I won't do WBR under any
circumstances. My brain is good for study type tasks - I'd do well on
a cancer course for example - and I'm good at ideas and maths, but
overall I have a terrible memory. I don't for example know the names
or faces of any but the most prominent celebrities. I think WBR is not
so bad if you have good memory to start with, but I'm not prepared to
risk losing any mental capacity. I wouldn't sacrafice quality for any
amount of longevity. And having read what I can on WBR, I just don't
believe it is beneficial in most of its use, or at all appropriate for
me.
Whether I'm right, I think the main thing is I am comfortable with my
decision. So whatever happens, I'll remain happy with it. I won't be
kicking myself if the cancer turns around and bites me for getting it
wrong.
Last time we spoke I was confused and doubting, but now, my (rather
arrogant) confidence will serve me well.
Feeling good about my decisions is perhaps as important as dealing
with the cancer correctly.

I want to keep thanking you for the support. It really helps to hear
your thoughts and share mine.

Regards
Tony

tonyjeffs wrote:

> [ Stereotactic vs WBR discussion]
>
>
> My bottom line, though, is I'm adamant I won't do WBR under any
> circumstances. My brain is good for study type tasks - I'd do well on
> a cancer course for example - and I'm good at ideas and maths, but
> overall I have a terrible memory. I don't for example know the names
> or faces of any but the most prominent celebrities. I think WBR is not
> so bad if you have good memory to start with, but I'm not prepared to
> risk losing any mental capacity. I wouldn't sacrafice quality for any
> amount of longevity. And having read what I can on WBR, I just don't
> believe it is beneficial in most of its use, or at all appropriate for
> me.
> Whether I'm right, I think the main thing is I am comfortable with my
> decision. So whatever happens, I'll remain happy with it. I won't be
> kicking myself if the cancer turns around and bites me for getting it
> wrong.
> Last time we spoke I was confused and doubting, but now, my (rather
> arrogant) confidence will serve me well.
> Feeling good about my decisions is perhaps as important as dealing
> with the cancer correctly.
>
> I want to keep thanking you for the support. It really helps to hear
> your thoughts and share mine.

You're very welcome, Tony. I't's been interesting watching you logic through
your choices and definition of quality of life. I understand completely.
Hopefully the system and/or doctors will be agreeable to your choice.
Please keep in touch and let us know how it goes.
Best,
J - wishing you lots of quality time to continue your studies.

J
I have a question about dexamethasone puffy cheeks. In the past 4
weeks on the drug, I've gone from a hollow cheeked ill-looking person
to a full faced healthy-looking person.
I've actually commissioned an artistic friend to paint my portrait
while I still look ok. - It is a wonderful flattering experience
being painted!

But my cheeks are growing remarkably fast, and in the next month I
will turn into a hampster!!! Do you know if there is anything I can
do about this aside from what I'm doing already?
I'm watching my weight, exercising hard, and reducing the dose as
much as I can, in conjunction with my doctor's advice,

yours
Tony

tonyjeffs wrote:

> J
> I have a question about dexamethasone puffy cheeks. In the past 4
> weeks on the drug, I've gone from a hollow cheeked ill-looking person
> to a full faced healthy-looking person.
> I've actually commissioned an artistic friend to paint my portrait
> while I still look ok. - It is a wonderful flattering experience
> being painted!
>
> But my cheeks are growing remarkably fast, and in the next month I
> will turn into a hampster!!! Do you know if there is anything I can
> do about this aside from what I'm doing already?
> I'm watching my weight, exercising hard, and reducing the dose as
> much as I can, in conjunction with my doctor's advice,

Hello Tony,
The moon shaped face (some call "chipmunk cheeks") caused by steroids
such as prednisolone takes a very long time to subside even when the
medicine is stopped altogether. I stole that (sentence) from a webpage
and I think was intended for people who've been on it longterm.

It's water retention, I think, connected in some way to the adrenal
glands.

What dose are you on, Tony? One place says that getting down to 10 mg
makes the moon face and bloating go away.

If you're on that or less, talk to your doctor about salt-free diet?

I'm sorry - I can't think of anything facial/ type herbal that would help.

Great idea to have your portrait painted.
I hope you'll show us when it's completed.
J

In article <57b9f3ff-cb44-41d2-8f1a-68b90d1916d6@8g2000hse.googlegroups.com>,
tonyjeffs <tonyjeffs2@googlemail.com> wrote:

> J
> I have a question about dexamethasone puffy cheeks. In the past 4
> weeks on the drug, I've gone from a hollow cheeked ill-looking person
> to a full faced healthy-looking person.
> I've actually commissioned an artistic friend to paint my portrait
> while I still look ok. - It is a wonderful flattering experience
> being painted!
>
> But my cheeks are growing remarkably fast, and in the next month I
> will turn into a hampster!!! Do you know if there is anything I can
> do about this aside from what I'm doing already?
> I'm watching my weight, exercising hard, and reducing the dose as
> much as I can, in conjunction with my doctor's advice,
>
> yours
> Tony

Just think if all the new storage space you have for nuts and grains.

Sorry, I couldn't resist that one.

When you start to come off the steroids, do it very slowly. I only took a small
dose (can't remember how much) but withdrawal was the pits.

Best of luck to you.

bobert

--

The 5 food groups:
Chocolate, Coffee, Pizza, Quick and Easy

Bob in Central California

J, Bobert

The first day, I found 8mg overwhelming, so since then I've been on
just 4mg.day, and have reduced that to 3.5. I'm still getting the
moon face though. It is interesting that you mention salt. I suddenly,
presumably as a consequence of the drug, enjoy my food with lots of
salt on everything. (In contrast to interferon which made it
impossible for me to eat anything that any saltiness to it)
I'll cut down on the salt.

Bobert
What were the side effects of withdrawal?
At first it was great fun having so much steroid induced energy, but
more recently, the lack of an apparant need for sleep is catching up
with me and I feel very scatterbrained, disorganised and
irritable.....so this morning (it's 5 a.m.), I'm having a few hours
drug free, drinking hot chocolate, and am going to attempt to have a
few more hours sleep, to hopefully calm me down.

Tony

Tony

In article <47b7c393-8483-4d31-9ea2-37822eaae3e2@d77g2000hsb.googlegroups.com>,
tonyjeffs <tonyjeffs2@googlemail.com> wrote:

>
> Bobert
> What were the side effects of withdrawal?

> Tony

To be honest, I was so drugged up at that time that I can't remember the exact
effects. Those months are beginning to blur and run together. I do remember
having to halve my dose and then halve that dose. Took me about 2 or 3 weeks to
come off steroids. Those days are like a blank in clear memories. I tried to
journal, but now reading it I only have dates that are "mile markers" in my
treatment. Better than nothing I guess.

The steroids were a godsend because I felt like eating again. I must have eaten
everything I could get my hands on, just to experience the joy of taste. I was
getting WBR for some mets. The steroid was to control brain swelling.

Overall the chemo and radiation were worse than coming off the steroids.

Good luck in this unwanted journey.

bobert

--

The 5 food groups:
Chocolate, Coffee, Pizza, Quick and Easy

Bob in Central California

Cheers Bobert,
Sorry for not acknowledging your reply sooner - been enjoying the hot
summer weather we're having.
........................

Friday will be decision time... The time when my doctors have to
decide to do exactly what I tell them ;-)

The surgeon very successfully talked me out of conventional surgery.
Because my tumors are in critical places, motor and sensory cortex, I
would most certainly experience some permanant paralysis which could
be very significant, even a whole side of my body or both sides. He
said that in his experience even in the most apparantly simple,
perfect operations of this type some loss occurs. So "No" to
conventional surgery. Easy decision.

There will be some permanant motor loss too with Linac targetted
radiation, but I ultimately have no option but to live with that, even
though it is awfully bad.

My plan is:
1. There is no rush. I can tell how my brain tumors are growing by the
effectiveness of the drug in restoring movement to my hands. They are
currently 1cm dia, and respond to 2mg of drug. Linac is possible up
to 3cm dia, so there is some leeway. I will delay having the
intervention as long as possible.
2. There is no point trying to completely eradicate the brain tumors
since the chest tumors will kill me anyway. Burning them out
completely will cause peripheral damage and parylise my fingers. So I
will be demanding that they slow them down by burning the central 60%
of each tumor leaving a reasonable sized buffer zone. The procedure
can be repeated if they grow back in a year.

I could do with knowing more technical detail about Linac, how tightly
it can be focussed. I'll read up on it

It is I believe, correct to adopt a firefighting approach to my cancer
since a cure is not available.

Friday 13th is the day!

Tony



On May 29, 8:55*pm, The Bobert <nob...@nowhere.nowhow> wrote:
> In article <47b7c393-8483-4d31-9ea2-37822eaae...@d77g2000hsb.googlegroups.com>,
>
> *tonyjeffs<tonyjef...@googlemail.com> wrote:
>
> > Bobert
> > What were the side effects of withdrawal?
> > Tony
>
> To be honest, I was so drugged up at that time that I can't remember the exact
> effects. Those months are beginning to blur and run together. I do remember
> having to halve my dose and then halve that dose. *Took me about 2 or 3 weeks to
> come off steroids. Those days are like a blank in clear memories. *I tried to
> journal, but now reading it I only have dates that are "mile markers" in my
> treatment. *Better than nothing I guess.
>
> The steroids were a godsend because I felt like eating again. *I must have eaten
> everything I could get my hands on, just to experience the joy of taste. *I was
> getting WBR for some mets. *The steroid was to control brain swelling.
>
> Overall the chemo and radiation were worse than coming off the steroids.
>
> Good luck in this unwanted journey.
>
> bobert
>
> --
>
> The 5 food groups:
> Chocolate, Coffee, Pizza, Quick and Easy
>
> Bob in Central California

tonyjeffs wrote:

> Cheers Bobert,
> Sorry for not acknowledging your reply sooner - been enjoying the hot
> summer weather we're having.
> ........................
>
> Friday will be decision time... The time when my doctors have to
> decide to do exactly what I tell them ;-)
>
> The surgeon very successfully talked me out of conventional surgery.
> Because my tumors are in critical places, motor and sensory cortex, I
> would most certainly experience some permanant paralysis which could
> be very significant, even a whole side of my body or both sides. He
> said that in his experience even in the most apparantly simple,
> perfect operations of this type some loss occurs. So "No" to
> conventional surgery. Easy decision.
>
> There will be some permanant motor loss too with Linac targetted
> radiation, but I ultimately have no option but to live with that, even
> though it is awfully bad.
>
> My plan is:
> 1. There is no rush. I can tell how my brain tumors are growing by the
> effectiveness of the drug in restoring movement to my hands. They are
> currently 1cm dia, and respond to 2mg of drug. Linac is possible up
> to 3cm dia, so there is some leeway. I will delay having the
> intervention as long as possible.
> 2. There is no point trying to completely eradicate the brain tumors
> since the chest tumors will kill me anyway. Burning them out
> completely will cause peripheral damage and parylise my fingers. So I
> will be demanding that they slow them down by burning the central 60%
> of each tumor leaving a reasonable sized buffer zone. The procedure
> can be repeated if they grow back in a year.
>
> I could do with knowing more technical detail about Linac, how tightly
> it can be focussed. I'll read up on it
>
> It is I believe, correct to adopt a firefighting approach to my cancer
> since a cure is not available.

Contain it?

> Friday 13th is the day!
>
> Tony

Good luck Friday, Tony.
J

tonyjeffs wrote:

> Friday will be decision time... The time when my doctors have to
> decide to do exactly what I tell them ;-)
>
> The surgeon very successfully talked me out of conventional surgery.
> Because my tumors are in critical places, motor and sensory cortex, I
> would most certainly experience some permanant paralysis which could
> be very significant, even a whole side of my body or both sides. He
> said that in his experience even in the most apparantly simple,
> perfect operations of this type some loss occurs. So "No" to
> conventional surgery. Easy decision.
>
> There will be some permanant motor loss too with Linac targetted
> radiation, but I ultimately have no option but to live with that, even
> though it is awfully bad.
>
> My plan is:
> 1. There is no rush. I can tell how my brain tumors are growing by the
> effectiveness of the drug in restoring movement to my hands. They are
> currently 1cm dia, and respond to 2mg of drug. Linac is possible up
> to 3cm dia, so there is some leeway. I will delay having the
> intervention as long as possible.
> 2. There is no point trying to completely eradicate the brain tumors
> since the chest tumors will kill me anyway. Burning them out
> completely will cause peripheral damage and parylise my fingers. So I
> will be demanding that they slow them down by burning the central 60%
> of each tumor leaving a reasonable sized buffer zone. The procedure
> can be repeated if they grow back in a year.
>
> I could do with knowing more technical detail about Linac, how tightly
> it can be focussed. I'll read up on it
>
> It is I believe, correct to adopt a firefighting approach to my cancer
> since a cure is not available.
>
> Friday 13th is the day!
>
> Tony

How did things go Friday, Tony?
J - uncertain what to infer from your silence.