Secondary bone tumours - what will happen
Richard
tumour in her sternum. I believe that when breast cancer spreads to the
bones, there is no realistic chance of a cure and average life expectancy is
around a couple of years.
I am wondering what will happen over the next couple of years. How will the
illness progress? She is fit and active now but for how long? How long till
she will be bed ridden and needing nursing care or hospitalisation? Most
worryingly, I understand that bone cancer can be very painful. My wife does
not tolerate morphine well. It makes her vomit. Are there other pain
killers that can effectively deal with bone pain?
If anybody has gone through this and feels able to provide information, I'll
be very grateful.
Richard
J
Hello Richard,
In UK, Canada and Australia (at least) radiation therapy is used for bone mets.
It's my understanding that they can target one specific area.
If she later develops widespread bone mets, there's "whole body radiation",
which if I recall, does either the half lower of the body or the top half.
If you're in the US, ask Alex ("Guess Who") to explain which States & Medicare
don't cover it.
I'm a little confused about it. I'm Canadian and just assumed that it was
covered in the US.
I think she said it's usually not covered when in Hospice or Nursing Homes (in
the US).
Radiation therapy could be her "friend" and keep her mobile and no /less pain
for quite some time.
It's all about rules (hospice, insurance, medicaid, medicare - payment) and
timing.
Of course, there's also other ways to medicate pain, but as you said, cancer in
the bones can be very painful.
Best,
J
Sunny
Hi Richard,
I'm sorry to hear about your wife. My prayers go out to both of you. I
am a 49 year old woman..and I have Stage 4 Breast cancer, & I've been
dealing with bone "mets" since I've been diagnosed in '2000'. I have
them in my hips, my spine, neck, liver. They can be very painful. I am
treated with Zometa, which strengthens your bones, so that the tumors
don't eat through them...currently on weekly Taxotere treatments & I
have been taking Oxycontin for the pain, it somewhat helps. I can't
give you a statistic on survival rate..My onc. gave me about 5
years..I'm proving him wrong, ha! I'm very warey about
radiation...because there are so many tumors clustered on the femur
head, I'm afraid something else will be affected while radiating that
area. I'm kind of paraniod, because I don't need any other problems.
I apologize if I seem biased to radiation..but this is my experience.
God Bless, and stay strong,
Sunny
On Sat, 14 Aug 2004 17:53:51 +0100, "Richard" <qaz...@hotmail.com>
wrote:
C. Falise
i'm 38 yrs old and was diagnosed with stage 4 last october. i have dozens
of bone mets (and some in my lungs, liver and kidney). in my opinion, if
your wife is strong and still healthy (as much as she can be), then she will
probably fare well. i'm doing pretty well myself. this is her first bone
met, and it can possibly be treated with radiation if neccesary.
my question would be what kind of treatment is she receiving presently? is
she still on treatment? if not, resuming treatment may shrink that new
tumor and help prevent new ones from forming.
i too am on zometa which has helped to heal many of my bone tumors. yes, it
can be painful. i take oxycodone and/or darvocet for the pain and i also
have nasea problems on occasion from those pain meds. there are drugs to
help control nausea if she needs them. unfortunately, the opiate family of
pain meds are probably the most effective form of prescription pain control.
but don't rule out the possiblity of accupuncture and other non- drug forms
of pain control.
my best advice to you would be to try not to look at the end yet. it could
be very far off still. it would seem a waste of time now to focus on what
may happen in the future. just try your best to help her manage her current
situation and enjoy what you do have now. later will take care of itself.
she still has time - and good time at that. even very advanced breast
cancer can be treated as a chronic disease for years. you never know what's
coming down the pipeline in a year or two - there are many very promising
breakthroughs, and only more to come. you never know - we might get lucky.
till then, hang in there and try to enjoy life as much as you can.
good luck.
-christina
"Richard" <qaz...@hotmail.com> wrote in message
news:cflg30$rnv$1$8300...@news.demon.co.uk...
Tim Jackson
I supported my wife through her terminal cancer which mainly involved
bone mets.
The survival times are very variable, for example regular group
contributor Catharine who died earlier this year was diagnosed only a
few months after my wife, who died in 2000.
As others have said, local radiotherapy is the main weapon against
this form of the disease. Typically irradiating one tumour will set
it back a couple of years, although it will not destroy it completely,
and it may encourage other smaller tumours to grow faster. For this
sort of reason the treatment policy is usually to hold back on
treatment until the symptoms get reasonably severe, that way you get
more bang for your radiation buck. Radiation can usually only be done
once to each site without risking serious collateral damage.
With the further help of hormone therapy, and bone-strengthening drugs
like Zometa, it may get held in check for quite some time, sometimes
as much as ten years. They do say that if you must get mets, bone is
the place to get them because no-one dies of bone mets. They will
appear elsewhere, mainly in the torso and skull, eventually they will
most likely spread to soft tissues, liver etc, and become truly
terminal.
Bone mets become eventually painful, and will probably need powerful
painkillers, slow-release morphine is commonly used. An anti-emetic
such as Reglan may help control her reaction to it, also long-term
narcotics will cause constipation and need to be taken with a
laxative. In the later stages Fentanyl as a skin patch can be useful,
it is stronger and may have less side effects: it worked very well for
my wife. But all that is still a long way off yet.
Of course she will suspect every ache and pain of being another
metastasis site, but don't forget that normal everyday problems still
happen, and life goes on.
It is a good idea at this stage to make plans for the eventuality, and
to do anything that you have been planning 'sometime'. (We did a
package-tour holiday, something we had never done before.) The
condition is only going to get worse and all too soon you find that
she is no longer fit to to climb that mountain, go bungee jumping or
whatever.
Tim Jackson
J
> As others have said, local radiotherapy is the main weapon against
> this form of the disease. Typically irradiating one tumour will set
> it back a couple of years, although it will not destroy it completely,
> and it may encourage other smaller tumours to grow faster. For this
> sort of reason the treatment policy is usually to hold back on
> treatment until the symptoms get reasonably severe, that way you get
> more bang for your radiation buck. Radiation can usually only be done
> once to each site without risking serious collateral damage.
Tim, as usual, I admire your posts.
But that last sentence runs contradictory to what Steph (radiation oncologist) always replies.
He often replies "there's no limit to the amount of radiation therapy" and the other phrase
"judicious radiotherapy"
I would so appreciate, when you get back, if you could start a "radiation - mets" thread, crossposted
to alt.support.cancer so that you and he could discuss these issues as to which circumstances his
statements apply (or don't) and other issues such as you mention ..collateral damage.
Please and thanks.
J
J
Replying and crossposting, Tim, so Steph can understand the situation and possibly comment.
J
Steph
"J" <sut...@anon.anon> wrote in message
news:4125D701...@execulink.com...
The correct treatment for any bone met, especially in the sternum, is
radiotherapy.
That and good palliative care should mean that nobody has to spend the
terminal phase of their illness in uncontrollable pain
J
> The correct treatment for any bone met, especially in the sternum, is
> radiotherapy.
> That and good palliative care should mean that nobody has to spend the
> terminal phase of their illness in uncontrollable pain
Steph, please comment on (statements made) 5 paragraphs up.
Thanks,
J
Steph
"J" <sut...@anon.anon> wrote in message
It's incorrect and alarmist nonsense
J
> "J" <sut...@anon.anon> wrote in message
>
> > Steph wrote:
> >
> > > > Tim Jackson wrote:
> > > >
> > > > > "Richard" <qaz...@hotmail.com> wrote in message
> <snipped 4 paragraphs>
> > >
> > > The correct treatment for any bone met, especially in the sternum, is
> > > radiotherapy.
> > > That and good palliative care should mean that nobody has to spend the
> > > terminal phase of their illness in uncontrollable pain
> >
> > Steph, please comment on (statements made) 5 paragraphs up.
> >
>
> It's incorrect and alarmist nonsense
Thanks Steph, - I've removed some text and left the paragraph which bothered me.
Hopefully Tim will join in on this thread upon his return to the newsgroup.
J
J
> The correct treatment for any bone met, especially in the sternum, is
> radiotherapy.
> That and good palliative care should mean that nobody has to spend the
> terminal phase of their illness in uncontrollable pain
okay, I hear you, for late stage, but if I could make a point here.
Perhaps the patients (with only bone mets) don't view themselves as "terminal"
(as in endstage) since some can live for several years, if not more, with bone
mets, and perhaps they want to know if radiation therapy can cause
complications?
So when you say there's no limit as to radiation therapy, is that no limit per
location? (assuming a low dose for palliative pain control?)
Have you run into situations where you've decided it's best not to do any more
radiation therapy?
J
Steph
"J" <Jac...@anon.anon> wrote in message
news:4127AC64...@execulink.com...
> Steph wrote:
>
> > The correct treatment for any bone met, especially in the sternum, is
> > radiotherapy.
> > That and good palliative care should mean that nobody has to spend the
> > terminal phase of their illness in uncontrollable pain
>
> okay, I hear you, for late stage, but if I could make a point here.
> Perhaps the patients (with only bone mets) don't view themselves as
"terminal"
> (as in endstage) since some can live for several years, if not more, with
bone
> mets, and perhaps they want to know if radiation therapy can cause
> complications?
>
No, it can't if done competently. AND IT GETS RID OF THE PAIN>
> So when you say there's no limit as to radiation therapy, is that no limit
per
> location? (assuming a low dose for palliative pain control?)
>
There's no prctical limit for palliative radiotherapy because of tissue
tolerance. However, having to irradiate the same site multiple times means
that the cancer there is getting resistant to radiotherapy
> Have you run into situations where you've decided it's best not to do any
more
> radiation therapy?
> J
>
Not in the palliative situation. I do run into the situation where it's
pointless, though, as previous radiation hasn't helped.
Tim Jackson
"Steph" <st...@vancouver.island> wrote in message
news:9uAVc.159525$M95.50625@pd7tw1no...
>
> "J" <sut...@anon.anon> wrote in message
> news:4126205F...@execulink.com...
> > > > Radiation can usually only be done
> > > > once to each site without risking serious collateral damage.
> > > > >
> >
> >
>
>
That is a rather extreme statement.
When my wife was going through breast to bone mets in 1999 we were told by
the (radiation) oncologist that mets to the spine (eighth dorsal vertebra to
be exact) which had been radiated once and had recurred could not be
radiated again without risking damage to the spinal cord, and we were led to
believe this was a general principle, at least as far as the torso was
concerned.
She later suffered digestive problems (bleeding etc.) which were attributed
at least in part to side effects of radiation to the lower spine. This
resulted in premature termination of chemotherapy, and she died three months
later.
I appreciate that techniques improve all the time, and that the usefulness
of re-radiation must depend on the timescale in question, but I have no
doubt that at the time of her death my wife, being treated at a major cancer
centre, was suffering considerable pain from bone mets for which further
radiation had been refused because they were within the zone already
radiated for another tumour.
While the pain could still be overcome by analgesics, this was at the
expense of extreme lethargy, and it was necessary to strike a balance.
As far as I have read, it seems to be generally believed that a certain
amount of collateral tissue damage has to be accepted from radical
radiotherapy, in which case it is presumably the recovery time from this
damage that is in question, and that must depend critically on the part of
the body being irradiated.
Tim Jackson
Steph
"Tim Jackson" <t...@tim-jackson.co.uk> wrote in message
news:412e3fdf$0$91685$ed26...@ptn-nntp-reader01.plus.net...
>
> "Steph" <st...@vancouver.island> wrote in message
> news:9uAVc.159525$M95.50625@pd7tw1no...
> >
> > "J" <sut...@anon.anon> wrote in message
> > news:4126205F...@execulink.com...
> > > > > Tim Jackson wrote:
> > > > > Radiation can usually only be done
> > > > > once to each site without risking serious collateral damage.
> > > > > >
> > >
> > > Steph, please comment on (statements made) 5 paragraphs up.
> > >
> >
> > It's incorrect and alarmist nonsense
> >
>
> That is a rather extreme statement.
>
As is necessary in response to etreme nonsense
> When my wife was going through breast to bone mets in 1999 we were told by
> the (radiation) oncologist that mets to the spine (eighth dorsal vertebra
to
> be exact) which had been radiated once and had recurred could not be
> radiated again without risking damage to the spinal cord, and we were led
to
> believe this was a general principle, at least as far as the torso was
> concerned.
>
Depends on the length of the cord treated, the dose, fractionation and
technique. Patient who have had single fractions can be retreated several
times. Patients who have had long courses (15-20) have less tolerance, but
can usually still be retreated judiciously if necessary.
Oncologist worry about spinal cords for a very good reason - radiation
damage can lead to law suits. In the more litigious parts of the world,
these worries are so overpowering that common sense goes out of the window.
If a patient in severe pain with a few months to live is retreated and there
is a 5% risk of cord damge at 5 years ( a common measure), what is the right
thing to do? Not treat the patient in pain because of a theoretical risk
which would not manifest until long after th expected survival, or do the
treatment which has a 70-80% of improving the symptoms.? I'm see ing a lady
tomorrow who has had 6 treatments to the same site on the chestwall, each of
which has given her several momths of good relief.
> She later suffered digestive problems (bleeding etc.) which were
attributed
> at least in part to side effects of radiation to the lower spine. This
> resulted in premature termination of chemotherapy, and she died three
months
> later.
Radiation gets blamed for nearly everything for which nobody else has an
explanation. Again, whether it caused digestive problems and bleeding
depends on the dose, fractionation and volume, but I find it difficult to
imagine that any sensible palliative radiotherapy would have any such
effect. Note I said "palliative". Curative "radiotherapy" uses MUCH higher
doses, often close to tissue tolerance, bacause the aim is cure. Radical
radiotherapy can generally NOT be redone in the same area.
Why wasn't the chemotherapy and/or the cancer resposnible for the problems?
>
> I appreciate that techniques improve all the time, and that the usefulness
> of re-radiation must depend on the timescale in question, but I have no
> doubt that at the time of her death my wife, being treated at a major
cancer
> centre, was suffering considerable pain from bone mets for which further
> radiation had been refused because they were within the zone already
> radiated for another tumour.
>
I think I dealt with that.
> While the pain could still be overcome by analgesics, this was at the
> expense of extreme lethargy, and it was necessary to strike a balance.
>
Exactly.
> As far as I have read, it seems to be generally believed that a certain
> amount of collateral tissue damage has to be accepted from radical
> radiotherapy, in which case it is presumably the recovery time from this
> damage that is in question, and that must depend critically on the part of
> the body being irradiated.
>
And as I said, we aren't talking about radical radiotherapy. Palliative
radiotherapy can almost always be safely and effectively repeated. I've been
doing it for 20 years................
>
> Tim Jackson
>
>
Tim Jackson
"Steph" <st...@vancouver.island> wrote in message
> "Tim Jackson" <t...@tim-jackson.co.uk> wrote in message
> news:412e3fdf$0$91685$ed26...@ptn-nntp-reader01.plus.net...
> > "Steph" <st...@vancouver.island> wrote in message
> > news:9uAVc.159525$M95.50625@pd7tw1no...
> > > "J" <sut...@anon.anon> wrote in message
> > > news:4126205F...@execulink.com...
> > > > > > Tim Jackson wrote:
> > > > > > Radiation can usually only be done
> > > > > > once to each site without risking serious collateral damage.
> > > > Steph, please comment on (statements made) 5 paragraphs up.
> > >
> > > It's incorrect and alarmist nonsense
> >
> > That is a rather extreme statement.
> >
>
> As is necessary in response to etreme nonsense
>
> > When my wife was going through breast to bone mets in 1999 we were told
by
radiated
> > once and had recurred could not be radiated again without risking
> > damage to the spinal cord, and we were led to
> > believe this was a general principle, at least as far as the torso was
> > concerned.
> >
>
> Depends on the length of the cord treated, the dose, fractionation and
> technique. Patient who have had single fractions can be retreated several
> times. Patients who have had long courses (15-20) have less tolerance, but
> can usually still be retreated judiciously if necessary.
> Oncologist worry about spinal cords for a very good reason - radiation
> damage can lead to law suits. In the more litigious parts of the world,
> these worries are so overpowering that common sense goes out of the
window.
>
I don't think litigation in the UK has got that bad, yet.
>
> > She later suffered digestive problems (bleeding etc.) which were
> > attributed at least in part to side effects of radiation
> > to the lower spine. This resulted in premature termination
> > of chemotherapy, and she died three months later.
>
> Radiation gets blamed for nearly everything for which nobody else has an
> explanation. Again, whether it caused digestive problems and bleeding
> depends on the dose, fractionation and volume, but I find it difficult to
> imagine that any sensible palliative radiotherapy would have any such
> effect. Note I said "palliative". Curative "radiotherapy" uses MUCH higher
> doses, often close to tissue tolerance, bacause the aim is cure. Radical
> radiotherapy can generally NOT be redone in the same area.
> Why wasn't the chemotherapy and/or the cancer resposnible for the
problems?
>
Radiation damage was the conclusion of the oncologist. Of course such a
diagnosis remains speculative, but the timing and rate of onset suggested
radiation as the cause. FWIW I think it was exacerbated by the use of
NSAIDs (Volterol). Another contributor to a.s.c.b with a similar condition,
Catharine from Hawaii, had a related problem, after spinal radiotherapy she
was unable to retain food for about a month (sometimes being overweight can
have its uses) and this was I believe attributed by her team to lower
esophogal or upper stomach damage from radiation.
> > As far as I have read, it seems to be generally believed that a certain
> > amount of collateral tissue damage has to be accepted from radical
> > radiotherapy,...
>
> And as I said, we aren't talking about radical radiotherapy. Palliative
> radiotherapy can almost always be safely and effectively repeated. I've
been
> doing it for 20 years................
>
It appears that you are telling me that our radiation oncologist used
considerably higher doses than was strictly necessary in the situation.
Considering that he worked as part of a team at a large cancer hospital, I
cannot imagine that he was alone in doing this. If so I wonder how common
the practice is around the world?
Perhaps due to shortages in the UK health service they were (and perhaps are
still) giving higher 'radical' doses to minimise the need for repeat
treatments and so reduce machine loading. I understand that specifically in
the area of radiotherapy there has been a chronic shortage of both machines
and professionals, but I was not aware of such an impact on treatments.
You spoke of several months of relief, this would suggest my wife received a
higher dose, she was under radiotherapy for about a year in all as I recall,
and the first site did not give trouble again until near the end. New mets
within radiated areas was more of a problem.
Tim
Steph
> >
> Radiation damage was the conclusion of the oncologist. Of course such a
> diagnosis remains speculative, but the timing and rate of onset suggested
> radiation as the cause. FWIW I think it was exacerbated by the use of
> NSAIDs (Volterol). Another contributor to a.s.c.b with a similar
condition,
> Catharine from Hawaii, had a related problem, after spinal radiotherapy
she
> was unable to retain food for about a month (sometimes being overweight
can
> have its uses) and this was I believe attributed by her team to lower
> esophogal or upper stomach damage from radiation.
>
Patients with advanced metastatic cancer have multifactorial, multisystem
problems. One treatment modality is unlikely to be the sole culprit.
> > > As far as I have read, it seems to be generally believed that a
certain
> > > amount of collateral tissue damage has to be accepted from radical
> > > radiotherapy,...
> >
> > And as I said, we aren't talking about radical radiotherapy. Palliative
> > radiotherapy can almost always be safely and effectively repeated. I've
> been
> > doing it for 20 years................
> >
> It appears that you are telling me that our radiation oncologist used
> considerably higher doses than was strictly necessary in the situation.
> Considering that he worked as part of a team at a large cancer hospital, I
> cannot imagine that he was alone in doing this. If so I wonder how common
> the practice is around the world?
>
I wasn't saying that at all... I don't know.
> Perhaps due to shortages in the UK health service they were (and perhaps
are
> still) giving higher 'radical' doses to minimise the need for repeat
> treatments and so reduce machine loading. I understand that specifically
in
> the area of radiotherapy there has been a chronic shortage of both
machines
> and professionals, but I was not aware of such an impact on treatments.
>
Nobody in the UK gives radical doses for palliation. I know, I trained there
in the largest cancer hospital in Europe, and practised there for 11 years.
Tim Jackson
"Steph" <st...@vancouver.island> wrote in message
>
> "Tim Jackson" <t...@tim-jackson.co.uk> wrote in message
> news:412fb241$0$39526$ed2e...@ptn-nntp-reader04.plus.net...
> > >
> > considerably higher doses than was strictly necessary in the situation.
> > Considering that he worked as part of a team at a large cancer hospital,
I
> > cannot imagine that he was alone in doing this. If so I wonder how
common
> > the practice is around the world?
>
> I wasn't saying that at all... I don't know.
>
per area, and why else should she have been refused further radiation to the
affected areas? The memory is clear in my mind of being told in
consultation at the Christie that re-treatment would not be possible without
severe risk to the spinal cord. I didn't make that up or read it on the
internet.
> > Perhaps due to shortages in the UK health service they were
> > (and perhaps are still) giving higher 'radical' doses to minimise
> > the need for repeat treatments and so reduce machine loading.
> > I understand that specifically in the area of radiotherapy there
> > has been a chronic shortage of both machines and professionals,
> > but I was not aware of such an impact on treatments.
>
> Nobody in the UK gives radical doses for palliation. I know, I trained
there
> in the largest cancer hospital in Europe, and practised there for 11
years.
>
Maybe things have changed since then, I don't know, I only know what we
experienced, and it certainly was not as you describe. Your description of
the practice is widely at odds with my experience of it.
Tim
Steph
>
> "Steph" <st...@vancouver.island> wrote in message
> news:LzUXc.239009$gE.52916@pd7tw3no...
> >
> > "Tim Jackson" <t...@tim-jackson.co.uk> wrote in message
> > news:412fb241$0$39526$ed2e...@ptn-nntp-reader04.plus.net...
> > > >
> > > It appears that you are telling me that our radiation oncologist used
> > > considerably higher doses than was strictly necessary in the
situation.
> > > Considering that he worked as part of a team at a large cancer
hospital,
> I
> > > cannot imagine that he was alone in doing this. If so I wonder how
> common
> > > the practice is around the world?
> >
> > I wasn't saying that at all... I don't know.
> >
> Why else should we have been told that radiation could only be applied
once
> per area, and why else should she have been refused further radiation to
the
> affected areas? The memory is clear in my mind of being told in
> consultation at the Christie that re-treatment would not be possible
without
> severe risk to the spinal cord. I didn't make that up or read it on the
> internet.
>
You would only know why you were told that by asking the oncologist who did
the treatment
>
> > > Perhaps due to shortages in the UK health service they were
> > > (and perhaps are still) giving higher 'radical' doses to minimise
> > > the need for repeat treatments and so reduce machine loading.
> > > I understand that specifically in the area of radiotherapy there
> > > has been a chronic shortage of both machines and professionals,
> > > but I was not aware of such an impact on treatments.
> >
> > Nobody in the UK gives radical doses for palliation. I know, I trained
> there
> > in the largest cancer hospital in Europe, and practised there for 11
> years.
> >
> Maybe things have changed since then, I don't know, I only know what we
> experienced, and it certainly was not as you describe. Your description
of
> the practice is widely at odds with my experience of it.
>
>
> Tim
>
>
If anything, UK oncologists give more single fraction palliative RT than
they did 10 years ago, as there is excellent evidence that it's just as good
as longer treatments.
It is true that palliative doses at the Christie tend to be higher than most
other centre because the notion there has always been "treat to the highest
safe dose". The Christie was my hospital............
J
> Hi Richard,
> I'm sorry to hear about your wife. My prayers go out to both of you. I
> am a 49 year old woman..and I have Stage 4 Breast cancer, & I've been
> dealing with bone "mets" since I've been diagnosed in '2000'. I have
> them in my hips, my spine, neck, liver. They can be very painful. I am
> treated with Zometa, which strengthens your bones, so that the tumors
> don't eat through them...currently on weekly Taxotere treatments & I
> have been taking Oxycontin for the pain, it somewhat helps. I can't
> give you a statistic on survival rate..My onc. gave me about 5
> years..I'm proving him wrong, ha! I'm very warey about
> radiation...because there are so many tumors clustered on the femur
> head, I'm afraid something else will be affected while radiating that
> area. I'm kind of paraniod, because I don't need any other problems.
> I apologize if I seem biased to radiation..but this is my experience.
Well, let's get an opinion based on experience of treating other patients.
(Steph)
Sunny wrote: "My chemo treatments are being changed, again....everything that I
had been given hasn't worked..After being on different chemo treatments for 3
years, I will be given Gemzar with Taxol."
And here's the Gemzar/Taxol combo that you are starting
<http://www.breastcancer.org/research_chemotherapy_gemzar_taxol.html>
It mentions side effects that you were inquiring about.
Maybe I'm reading this "wrong", but it seems that those who "stuck with it" (in
the trial) gained 2 or 3 months.
J
Steph
"J" <cybe...@example.net> wrote in message
news:413260A3...@execulink.com...
> Sunny wrote:
>
>> Hi Richard,
>> I'm sorry to hear about your wife. My prayers go out to both of you. I
>> am a 49 year old woman..and I have Stage 4 Breast cancer, & I've been
>> dealing with bone "mets" since I've been diagnosed in '2000'. I have
>> them in my hips, my spine, neck, liver. They can be very painful. I am
>> treated with Zometa, which strengthens your bones, so that the tumors
>> don't eat through them...currently on weekly Taxotere treatments & I
>> have been taking Oxycontin for the pain, it somewhat helps. I can't
>> give you a statistic on survival rate..My onc. gave me about 5
>> years..I'm proving him wrong, ha! I'm very warey about
>> radiation...because there are so many tumors clustered on the femur
>> head, I'm afraid something else will be affected while radiating that
>> area. I'm kind of paraniod, because I don't need any other problems.
>> I apologize if I seem biased to radiation..but this is my experience.
>
> Well, let's get an opinion based on experience of treating other patients.
> (Steph)
>
Radiation is a: much safer that most chemotherapy and b) much more effective
for bone pain
J
> "Steph" <st...@vancouver.island> wrote in message
> >
> > > She later suffered digestive problems (bleeding etc.) which were
> > > attributed at least in part to side effects of radiation
> > > to the lower spine. This resulted in premature termination
> > > of chemotherapy, and she died three months later.
> >
> > Radiation gets blamed for nearly everything for which nobody else has an
> > explanation. Again, whether it caused digestive problems and bleeding
> > depends on the dose, fractionation and volume, but I find it difficult to
> > imagine that any sensible palliative radiotherapy would have any such
> > effect. Note I said "palliative". Curative "radiotherapy" uses MUCH higher
> > doses, often close to tissue tolerance, bacause the aim is cure. Radical
> > radiotherapy can generally NOT be redone in the same area.
>
> > Why wasn't the chemotherapy and/or the cancer resposnible for the
> problems?
> >
> Radiation damage was the conclusion of the oncologist. Of course such a
> diagnosis remains speculative, but the timing and rate of onset suggested
> radiation as the cause. FWIW I think it was exacerbated by the use of
> NSAIDs (Volterol).
What are they? In the dark ages in the UK or Christie?
This has bleeds and gastro written all over it (some of us bleed and/or have
gastro problems taking NSAID's and no radiation therapy) - from my experience
not all doctors know about this
http://www.healthandage.com/html/res/com/ConsDrugs/Diclofenaccd.html
http://www.rxlist.com/cgi/generic/diclofen.htm
Volterol, Voltaren is all under the "umbrella" of Diclofen..
If there was inflammation, didn't they try steroids?
> Another contributor to a.s.c.b with a similar condition,
> Catharine from Hawaii, had a related problem, after spinal radiotherapy she
> was unable to retain food for about a month (sometimes being overweight can
> have its uses) and this was I believe attributed by her team to lower
> esophogal or upper stomach damage from radiation.
Overweight can have it's downsides with bone mets.
Make the pain worse and harder to treat.
Think about it Tim, we're soft tissue held up/together by bone.
If we're heavier, the bone pain will be worse. Requiring more meds, more
radiation therapy.
<snipped>
I just took a look at your website
Your (since deceased) wife was overweight (whether from fluid retention and/or
fat)
"Multiple tumours all down the spine and in the ribs." "stack of drugs".
Later, Steph said "It is true that palliative doses at the Christie tend to be
higher than most
other centre because the notion there has always been "treat to the highest safe
dose".
I don't know if it would impact them or not, but why not write to the head of
the radiation therapy (unit) and/or the highest in the hospital asking them to
change their policy to use "judicious radiation therapy, not to the highest safe
dose" in palliative cases. (No need to say where you heard those phrases,
except "from other patients".)
If they prescribed the Volterol, ask them why steroids weren't used instead.
If they did not prescribe the Volterol, they should, at least, have been aware
that she was taking it and it's side effects.
Perhaps doing so would help other patients (present and future) being treated
there?
J
J
> "J" <cybe...@example.net> wrote in message
>
Hi Steph, any chance you could elaborate?
(keeping in mind that we're talking about judicious palliative radiation
therapy).
If such a patient came to you, what would happen?
You look at the scans?
Do you palpate to find out where there's pain?
Or do you treat each/all areas of mets?
If so, do you book a longer appointment and do them all at once?
(or individual appointments for each area?)
Have you treated others with same/similar (femur/multiple tumors)
Dangers in treating that?
Thanks,
J
Steph
"J" <can...@example.org> wrote in message
news:41345D30...@execulink.com...
Yes, but the patient mostly.
>
> Do you palpate to find out where there's pain?
I would treat all the most painful areas. There is a second reason to treat
the femur - to prevent a pathological fracture.
> Or do you treat each/all areas of mets?
> If so, do you book a longer appointment and do them all at once?
Usually. If there are more than 3 sites, we might do over 2 days.
> (or individual appointments for each area?)
>
> Have you treated others with same/similar (femur/multiple tumors)
> Dangers in treating that?
>
No danger. The danger is NOT treating it.
And as I've said before, 80% of patients have good to excellent or complete
symptom relief within 10-14 days.
> Thanks,
> J
>
Tim Jackson
there is no-one refused because they have no insurance, or has to marry a
guy for his insurance! Now that's real dark ages stuff.
> This has bleeds and gastro written all over it
>
No shit. Maybe you picked that up from my writing "digestive problems and
bleeding" all over it.
> (some of us bleed and/or have
> gastro problems taking NSAID's and no radiation therapy) -
> from my experience not all doctors know about this
> http://www.healthandage.com/html/res/com/ConsDrugs/Diclofenaccd.html
> http://www.rxlist.com/cgi/generic/diclofen.htm
>
We were very well aware of this risk, she had been on diclofenac (eg.
Volterol) for some time, but the gastro problems started dramatically very
shortly after L2 (or thereabouts) radiation. Of course they stopped the
diclofenac as soon as the problems arose, but then had to increase
analgesia, with its own set of problems. You can't win. Constipation isn't
good for the gut either, and the last thing you want when you're already
facing dehydration.
> If there was inflammation, didn't they try steroids?
>
Probably, they tried most everything. She was admitted to hospital for 2
weeks at that time, they didn't tell me everything they were doing, and I
didn't write it down anyway.
> > Catharine from Hawaii, had a related problem, after spinal radiotherapy
she
> > was unable to retain food for about a month (sometimes being overweight
can
> > have its uses)
>
> Overweight can have it's downsides with bone mets.
> Make the pain worse and harder to treat.
> Think about it Tim, we're soft tissue held up/together by bone.
> If we're heavier, the bone pain will be worse. Requiring more meds, more
> radiation therapy.
>
Oh, absolutely, I don't recommend it to anyone, it probably broke her leg,
(but at least that let her make the joke about her "dynamic screw fixation")
but the amount of weight Catharine lost before she got her digestion going
again would have put a 'normal' person into negative values, so in that way
it saved her life for a while. And I do know that obesity does not combat
cachexia, so lets not go there either.
> Your (since deceased) wife was overweight (whether from fluid
> retention and/or fat)
>
Not to put to fine a point on it! That's allright, one of my best friends
saw her in a holiday video, didn't recognise her and commented "What a lard
bucket .. Oh shit it's Lyudmila"
That was down to Tamoxifen mostly. She was never slim, and she steadily
gained weight over that year, until cachexia took over. But she was not
ever clinically obese either.
> Later, Steph said "It is true that palliative doses at the Christie
> tend to be higher than most
> other centre because the notion there has always been
> "treat to the highest safe dose".
>
> I don't know if it would impact them or not, but why not write to the head
of
> the radiation therapy (unit) and/or the highest in the hospital asking
them to
> change their policy to use "judicious radiation therapy, not to the
highest safe
> dose" in palliative cases. (No need to say where you heard those
phrases,
> except "from other patients".)
>
No way I am opening that can of worms five years after the fact. We had
enough arguments one way and another when she was a patient. Not that we
were dissatisfied with the care there in general, Lyudmila was just
naturally argumentative. I know, I lived with her.
And I understand their financial constraints, which -are- being (or have
been) addressed. 'Judicious' therapy is expensive. It was hard enough
getting slots on the X-Ray Therapy machines at that time as it was, if
everyone demanded half the dose twice as often the queues would have
stretched from here to kingdom come and somebody wouldn't get any at all.
> If they prescribed the Volterol, ask them why steroids weren't used
instead.
>
Because long term use of steroids is not recommended. It has saturation and
withdrawal problems, I forget the details. Short term steroid doses -were-
used (and made her fatter). As well as diclofenac. And radiation. At this
end stage you throw the book at it.
> If they did not prescribe the Volterol, they should, at least, have been
aware
> that she was taking it and it's side effects.
>
They were. We all were. It's all juggling. We had discussions with the
medics, called in experts, eg on pain control, weighed the pros and cons and
decided on courses of treatment. I made damn sure that everyone knew what
everyone else was doing: it sure didn't happen automatically.
Tim
Steph
It's exactly the same in Canada, Tim
J
I was referring to medications...
And no, it wasn't your mention (of bleeding), it was from personal experience.
J
J
> "J" <can...@example.org> wrote in message
>
Hour-long appointments? (or something like that)
>
> > Have you treated others with same/similar (femur/multiple tumors)
> > Dangers in treating that?
> >
>
> No danger. The danger is NOT treating it.
> And as I've said before, 80% of patients have good to excellent or complete
> symptom relief within 10-14 days.
So the symptom relief occurs just about the time they start to feel the slight
fatique?
And they can come back for more, at a later date, if there are new pain
locations or recurrance of pains?
Thanks Steph,
I'm hoping the original poster (and others) are reading.
J
Steph
"J" <use...@example.com> wrote in message
news:4136E15B...@execulink.com...
Eacj treatment takes 2 minutes, but the patient usually has to have some
seciak xrays on the simulator - maybe another 30 mins
>
>>
>> > Have you treated others with same/similar (femur/multiple tumors)
>> > Dangers in treating that?
>> >
>>
>> No danger. The danger is NOT treating it.
>> And as I've said before, 80% of patients have good to excellent or
>> complete
>> symptom relief within 10-14 days.
>
> So the symptom relief occurs just about the time they start to feel the
> slight
> fatique?
>
Most people treated for bone mets don't get fatigue.
> And they can come back for more, at a later date, if there are new pain
> locations or recurrance of pains?
>
Absolutely