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Medical Forum / Diseases and Disorders / Cancer / April 2004

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Another reluctant newcomer

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Carmen - 21 Apr 2004 18:02 GMT
Hello all,
I've been lurking for a while, trying to find an appropriate newsgroup
to talk about my husband's cancer.  This group is the best of what I
found so here goes:
Background -
Husband age 40, lump removed from the thenar eminence of the left hand
(fleshy part of the palm for the non biology geeks) on January 9th.
The lump was preliminarily diagnosed as a synovial sarcoma at the
pathology lab at Blanchfield Army hospital.  The Armed Forces
Institute of Pathology confirmed the diagnosis.  We asked for a
molecular study of the tumor (genetic testing) by AFIP.  Before that
request could even be processed we found that the tissue samples had
been sent to the Mayo Clinic by Blanchfield for just that test.  :-)
The result confirmed that the specific mutation that is the signature
mutation for a synovial sarcoma was found.  That eliminated even our
last unreasonable doubt.

Based on the diagnosis, and the size and location of the tumor (5.5 cm
in the largest dimension, primary tumor extended into the carpal
tunnel), the surgeon's consultations with a number of institutions and
oncologists elicited a unanimous recommendation of amputation of the
hand.  We gulped, but made the most sensible decision.  The amputation
was performed on March 9th.

Lung CT and bone scan showed no sign of metastatic disease.
(Synovials like to make a beeline for the lungs)

Chemotherapy is to begin any day now.  The local oncologist
(Tennessee) is consulting with MD Anderson and Sloan-Kettering before
he begins treatment.  Due to the uncommon nature of the cancer he's
only seen a few personally and wants to ensure that the treatment
regimen recommended by the oncologist in Ohio is the one based on the
most up-to-date data.

The agents being vetted as the most probable are:
Ifosfamide (with a side order of Mesna)
Doxorubicin
Dacarbazine

It could be all three, the first two, or some other combination should
the consultations turn up other possibilities that have shown promise.

This will be on top of the medications he's currently taking for pain
related to the amputation surgery.  Howard has always been a
disgustingly healthy man.  He's an active duty soldier (20 plus years
in) and used to a high level of health, energy and strength.  The
surgeries (January and March) have put a little dent into his
reserves, but I suspect we've only seen the tip of the iceberg and
would like some sense of what we might expect during chemo.  He's
recommended for 4 21-day cycles of the drugs.  Tips on how to make all
this a little easier would be greatly appreciated.  Especially the
needle part.  As odd as this may sound the very same man who kept his
cool in Iraq when under fire has a problem with needles and blood.
Such are phobias - inexplicable.  He's being seen by a doctor for the
phobia but frankly there just isn't time to wait for talk therapy.
The stress of the cancer journey has come disproportionately from the
blood draws and IVs involved.

Thank you and take care,
Carmen
Alayne - 21 Apr 2004 18:19 GMT
> Hello all,
> I've been lurking for a while, trying to find an appropriate newsgroup
[quoted text clipped - 56 lines]
> Thank you and take care,
> Carmen

Sorry to hear of your recent troubles Carmen and I wish you and Howard all
the best in your battle.

My husband also had a phobia of needles (despite being a tough biker) and
the nurses used to make fun of him (in the nicest way).  Distraction is the
only solution that I can think of right now, at least if he isn't looking at
the needle he won't know it's coming.

Hugs Carmen

Alayne
Carmen - 22 Apr 2004 03:02 GMT
Hello,

> Sorry to hear of your recent troubles Carmen and I wish you and
> Howard all the best in your battle.
[quoted text clipped - 5 lines]
> isn't
> looking at the needle he won't know it's coming.

Unfortunately for Howard the problems start well in advance of the
event itself.  The loss of appetite, sweating and other signs of
stress begin several hours before the blood letting begins.  Poor guy.
The venet itself is almost anticlimatic.  :-)

Thank you for the welcome.
Take care,
Carmen
spam2death - 22 Apr 2004 02:29 GMT
ck out  http://listserv.acor.org/archives/sarcoma.html

"May we never confuse honest dissent with disloyal subversion"    Dwight D.
Eisenhower

> Hello all,
> I've been lurking for a while, trying to find an appropriate newsgroup
[quoted text clipped - 56 lines]
> Thank you and take care,
> Carmen
Carmen - 22 Apr 2004 02:59 GMT
Hello,

> ck out  http://listserv.acor.org/archives/sarcoma.html

Thank you.  I subscribed again (I found it the other day) and although
this time I did get a confirmation message ( last time I never got one
despite 4 tries) it still will not allow me to view the archives.  Is
there some special trick other than using the proper name, email
address and password I registered with?
This is the message I get:
Not authorized
Sorry, you are not authorized to browse the archives of the SARCOMA
list from the address you entered in the login screen.
The address was my BellSouth email address.

Take care,
Carmen
J - 22 Apr 2004 10:18 GMT
> Hello,
>
[quoted text clipped - 13 lines]
> Take care,
> Carmen

Have you tried the FAQ's? http://www.acor.org/faqs/lists/
As a last resort and the last option on the page
" I'm still stuck! I need help from the listowners" form.
J
Carmen - 22 Apr 2004 14:28 GMT
Hi,

> > > ck out  http://listserv.acor.org/archives/sarcoma.html
> >
[quoted text clipped - 15 lines]
> As a last resort and the last option on the page
> " I'm still stuck! I need help from the listowners" form.

This morning I registered and subbed from my Hotmail address and got
the same fault.  Pooh.  I've sent a flag up for assistance and
hopefully the listowners can help.

Thanks and take care,
Carmen
Mike Radcliffe - 22 Apr 2004 07:51 GMT
> Hello all,
> I've been lurking for a while, trying to find an appropriate newsgroup
[quoted text clipped - 56 lines]
> Thank you and take care,
> Carmen

Carmen,
  Phobias have no sense of logic. My wife is a theatre nurse and can't
stand the sight of fake blood in movies. I am a palliative care nurse and
nearly fainted watching my daughter have stiches to a cut finger. It may be
that in your husband's case he  fears the loss of control of his situation,
who knows, I'm no psyche nurse.
Chemo is not the demon it was 10  years ago. Symptoms are generally very
well controlled but the anticipation of all the things that may be going
through his mind can still cause overwhelming anxiety. Certainly counselling
will help but in the short term anti-anxiety and sedative drugs like
lorazepam can be a godsend in getting him through. His doctors should be
more than familiar with these problems.
MIKE
Carmen - 22 Apr 2004 14:25 GMT
Hi,
On 22-Apr-2004, "Mike Radcliffe" <mikeradcliffenospam@bigpond.com>
wrote:

> He's
> > recommended for 4 21-day cycles of the drugs.  Tips on how to make
[quoted text clipped - 21 lines]
> his
> situation, who knows, I'm no psyche nurse.

<smile>  I'm a pre-med student (senior year), have no problem watching
operations on television whilst eating a nice rare burger.  The first
time I saw my husband after his amputation surgery I got light headed
and had to sit down for a bit though.  Same thing happened the next
day when the pump for his axillary catheter with the local anesthetic
malfunctioned and his pain level rose precipitously.  With loved ones
it's apparently perceived differently for some regardless of
background.

>  Chemo is not the demon it was 10  years ago. Symptoms are generally
>  very well controlled but the anticipation of all the things that
[quoted text clipped - 5 lines]
> lorazepam can be a godsend in getting him through. His doctors
> should be more than familiar with these problems.

The oncologist here was informed of his problems.  He did get a little
chuckle out of the big bad soldier who can handle being shot at with
relative ease but has problems with needles.  :-)  He hasn't seen how
bad it is yet, so he may have a whole different take on things if
Howard does the whole "sweat profusely, turn pale, start to shake and
then pass out cold" routine in front of him.  We'll see. I'm used to
it by now, so if he goes out I hold him so he doesn't fall and hurt
himself and wave off the ammonia capsules (he's gotten burnt nostrils
before).  When he was having a dressing change after the first surgery
to remove the tumor he passed out leaning over the table (sitting) and
the OT wanted to stop cleaning the wound and revive him.  I assured
her he'd wake up on his own and asked her to just continue on with the
dressing change.  I held him up to ensure he didn't fall out of the
chair and that's what she did.  The good thing about the chemo clinic
is the nice reclining lounger he'll be in.  Almost impossible to fall
out of.  As long as his arm is strapped onto the chair arm there'll be
little danger of the IV being torn out either.  He'll have time to
come to without the horrid ammonia capsules.
We're hoping he reacts to chemo the way he does most medical
procedures.  He heals very quickly according to the surgeons, is going
in with a kick-butt immune system (doesn't even get colds) and keeps
himself in good physical condition.  (Right now he only runs 3 miles a
morning but it's still exercise.)  I'm a bit worried he'll lose weight
(can't afford to - he's 6'5" tall and weighs 181 lbs) though.

Thanks and take care,
Carmen
J - 22 Apr 2004 10:16 GMT
> Hello all,
> I've been lurking for a while, trying to find an appropriate newsgroup
[quoted text clipped - 56 lines]
> Thank you and take care,
> Carmen

Hi Carmen and welcome to alt.support.cancer
I wonder why the chemo?
Here's what I'm using to back up my question

http://www.emedicine.com/orthoped/topic564.htm and
Steph's previous comment (showing the context) http://tinyurl.com/3brfy
J
Carmen - 22 Apr 2004 12:21 GMT
Hi,

> Hi Carmen and welcome to alt.support.cancer
> I wonder why the chemo?
[quoted text clipped - 4 lines]
> http://tinyurl.com/3brfy
> J

It stems from several factors.  First, there was no evidence found of
metastatic disease anywhere.  Having only found the primary tumor, and
removed it with a wide surgical margin the reasoning is that adjuvant
therapy will act on any micromets that haven't been discovered and (at
least theoretically) give him the best chance of survival.  At his age
(40) and excellent overall health (active duty Army - exercise and
maintenance of a healthy weight is mandatory) the risks of chemo are
worth it.  Second, synovials are chemosensitive.  Third, due to the
small number of synovials (and thus paltry data available involving
different treatment regimens) the medical community cannot say with
any certainty that adjuvant chemo (after surgery which is not at
issue) is any more or less effective than none.  Therefore the
standard of care is "give 'em chemo and cross your fingers".

Thanks and take care,
Carmen
J - 22 Apr 2004 14:39 GMT
> <snip>
>
[quoted text clipped - 12 lines]
> Doxorubicin
> Dacarbazine

These will give you some idea of what to expect..
<http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Combinationchemotherapyreg
imes/DoxorubicinIfosfamide
>

Doxorubicin and ifosfamide

Two views of Dacarbazine
http://www.bccancer.bc.ca/HPI/DrugDatabase/DrugIndexPt/Dacarbazine.htm
<http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Individualchemotherapydrug
s/Dacarbazine
>

I would have to look up the "rare side effects individually probably on
the mfrg's website(s)
I expect the doctors will know which pain meds are appropriate with any of
the above.
HTH
J

> It could be all three, the first two, or some other combination should
> the consultations turn up other possibilities that have shown promise.
[quoted text clipped - 8 lines]
> recommended for 4 21-day cycles of the drugs.  Tips on how to make all
> this a little easier would be greatly appreciated.
Carmen - 22 Apr 2004 21:36 GMT
Hi,

> > Chemotherapy is to begin any day now.  The local oncologist
> > (Tennessee) is consulting with MD Anderson and Sloan-Kettering
[quoted text clipped - 23 lines]
> I expect the doctors will know which pain meds are appropriate with
> any of the above.

Thank you.  I'd already looked up the drug monographs, and was hoping
perhaps some folks in here had had some experience with them they
might be able to share.  Sometimes patients and their families can be
a better source of practical tidbits of info on how to deal with side
effects than the medical personnel who never experience them up close.

Take care,
Carmen
J - 22 Apr 2004 22:22 GMT
> Thank you.  I'd already looked up the drug monographs, and was hoping
> perhaps some folks in here had had some experience with them they
> might be able to share.  Sometimes patients and their families can be
> a better source of practical tidbits of info on how to deal with side
> effects than the medical personnel who never experience them up close.

Hi Carmen, that's entirely possible but many check the subject lines and only read posts of interest.
So if/when one happens, first check with the oncologist

Here's another you may want to look through and bookmark  http://www.cancer.gov/cancerinfo/coping/

Then if there's an unresolved/unexplained side effect or symptom, put it in your subject line.

OR post with the name of the treatment (after it's been decided on).

There may also be replies from others later.
Best,
J
PS Will Howard be fitted with some type of prosthesis?
Carmen - 22 Apr 2004 22:57 GMT
Hi,

> > Thank you.  I'd already looked up the drug monographs, and was
> > hoping perhaps some folks in here had had some experience with
[quoted text clipped - 17 lines]
>
> OR post with the name of the treatment (after it's been decided on).

It's been decided on.  Dr. Patel called me at home, and gave me the
rough outline then I told him that he could call Howard's cell.
The treatment is rougher than we'd been expecting though.  MD Anderson
said that they recommend the high dose Ifex and Adriamycin.  That
means it won't be outpatient in a nice calm clinic setting, but 5 days
inpatient.  The other piece of good news is that instead of 4
treatment cycles they said 6.  Howard and I talked after he got done
with the doc.  He's unhappy, since to him this means he won't be able
to carry on fairly normally as he'd hoped.  One small bright spot is
that means he'll be monitored constantly for side effects and they'll
be able to address them immediately.  Pooh.

> There may also be replies from others later.
> Best,
> J
> PS Will Howard be fitted with some type of prosthesis?

Yes, although now with everything up in the air as far as planning
purposes go I'm not sure when he'll be able to start that process.  As
an active duty soldier Walter Reed Army hospital in DC is the premier
place to go for that care.  The war's given their prosthetics lab a
lot of unfortunate extra experience in the past year or so, and
they're working with the latest in myoelectric limbs.

I appreciate the link, J.  Thanks.  :-)

Take care,
Carmen
J - 23 Apr 2004 00:53 GMT
> It's been decided on.  Dr. Patel called me at home, and gave me the
> rough outline then I told him that he could call Howard's cell.
> The treatment is rougher than we'd been expecting though.  MD Anderson
> said that they recommend the high dose Ifex and Adriamycin.

With Mesna the combo is called AIM
<http://www.cancer.org/docroot/CRI/content/CRI_2_4_4x_Chemotherapy_38.asp?sitearea=>

> That means it won't be outpatient in a nice calm clinic setting, but 5
> days
[quoted text clipped - 4 lines]
> that means he'll be monitored constantly for side effects and they'll
> be able to address them immediately.  Pooh.

The other frustration may be long after the treatment since there's
nothing to monitor (ie "has it shrunk") and apparently there can be late
recurrences
http://www.emedicine.com/orthoped/topic564.htm
Follow-up care: Follow-up involves clinical examination, MRI of the
surgical site, and CT scan of the chest. No specific recommendation
exists, but the author rescans and reviews every 3 months for the first 2
years and then every 6 months for the next 3 years. Most metastatic
disease presents within the first 2 years, but late recurrence has been
documented."

So he could be years in limbo after the 3 year mark, perhaps getting CT
scans once a year and not knowing what will happen in the future.  Perhaps
that's part of why chemo for surgically removed sarcomas seems
controversial.

> > PS Will Howard be fitted with some type of prosthesis?
>
[quoted text clipped - 4 lines]
> lot of unfortunate extra experience in the past year or so, and
> they're working with the latest in myoelectric limbs.

Yes, very exciting, I've seen them on documentaries. :-)

> I appreciate the link, J.  Thanks.  :-)

You're welcome. Best wishes,
J
Carmen - 28 Apr 2004 03:03 GMT
Hi,

> > It's been decided on.  Dr. Patel called me at home, and gave me
> > the rough outline then I told him that he could call Howard's
[quoted text clipped - 5 lines]
> With Mesna the combo is called AIM
> <http://www.cancer.org/docroot/CRI/content/CRI_2_4_4x_Chemotherapy_38.asp?sitearea=>

Thank you once again.  :-)

> The other frustration may be long after the treatment since there's
> nothing to monitor (ie "has it shrunk") and apparently there can be
> late recurrences
>  http://www.emedicine.com/orthoped/topic564.htm
Snip
> So he could be years in limbo after the 3 year mark, perhaps getting
> CT scans once a year and not knowing what will happen in the future.
>
> Perhaps that's part of why chemo for surgically removed sarcomas
> seems
> controversial.

I'd seen this particular document during my searches earlier on in the
game.
Howard's take on it is that as long as he's not actively sick and he
gets appropriate checkups and keeps an eye on himself he'll be
satisfied to just get back to normal.

The controversy on adjuvant chemo is viewed by Howard's oncologists as
stemming from the sparsity of data from studies.  They've done some,
but the numbers of patients are small (synovials being uncommon).
We're in agreement that at his relatively young age and excellent
overall health it's worth the risks to try and be as sure we got it
all as possible.  No guarantees but we're hedging our bets.  :-)

He's getting a port put in on Tuesday (chest to subclavian vein) and
the surgeon said he'd clear Howard for chemo the next day.  We'll see
how soon the oncologists and the case manager can arrange for his
intake at the hospital.  I imagine that'll be Wednesday.  :-)

> > > PS Will Howard be fitted with some type of prosthesis?
> >
[quoted text clipped - 7 lines]
>
> Yes, very exciting, I've seen them on documentaries. :-)

We were in the Occupational Therapy clinic today and while Howard was
doing his therapy we met another one of the Fort Campbell amputees.
He lost his right arm just below the elbow last June in Iraq.  He
showed us his myoelectric arm - tres cool.  Because he had so much
damage to his arm he only had one place for an electrode input (on the
inside of what's left of the elbow joint) but it still works well.
Nice kid, and he filled us in on what we have in store going through
(processwise).  He also told us that the prosthetics lab in Nashville
(a mere 45 minutes away) is worth giving the once over before we
decide to go all the way to DC for the fittings.  We might well do
that.

Take care,
Carmen
Julianne - 27 Apr 2004 00:18 GMT
> Hi,
>
[quoted text clipped - 48 lines]
> Take care,
> Carmen

Carmen:

What about a PICC line for your husband?  He could get some good drugs -
Xanax or something in a large dose, have the line inserted and be done with
the sticking.  As a pre-med student, you are more than capable of caring for
it.  His phobia may have no basis in reality but it is just as frightening
to him as being held up at gun point.

Just a thought.

j
Carmen - 28 Apr 2004 03:14 GMT
Hi,
<Background: Husband has a serious needle phobia and is about to go
through 6 cycles of chemotherapy - 5 days of each one inpatient on IV>
> What about a PICC line for your husband?  He could get some good
> drugs - Xanax or something in a large dose, have the line inserted
[quoted text clipped - 4 lines]
> just as
> frightening to him as being held up at gun point.

Well I know it.  The first time I realized that he wasn't exaggerating
how he reacted (not having seen it myself) was when I got myself on
the Bone Marrow Registry.  I said it'd be great if he would too and he
said he didn't like needles but it *was* a good thing to do so he
would do it.  When the time came he shook, sweated copiously and got
horribly pale.  I felt awful, since I'd had no idea it was an actual
phobia until then.  (This reminds me.  He needs to be removed from the
Registry now.  Too bad, he has blood type AB.)

PICC lines are good, but he's only got one fully functional arm/hand
combo right now.  It'd be unwise to limit his range of activities with
that one.  Additionally they require more care than the option we've
decided on - a port.  With some Emla lotion or ethyl chloride to numb
the area for even the small prick I'm hoping that the absence of pain
will eventually lessen his anxiety for the procedures when done
through the port.  I can hope.  :-)  At the very least it'll help save
his veins from the Adriamycin.

Take care and thank you for the advice,
Carmen
 
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