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From: terry on 23 Sep 2008 23:13
csm7532(a)hotmail.com wrote:

> How about a few tattoos of incisions? I have a fairly broad scar on
> my chest where they put in, and later took out my "port", plus a few
> lighter (and mostly very small) scars from surgery. You can also
> shave your head, as many people seem to think all cancer patients are
> bald (I kept enough hair that strangers had no idea I'd lost any).
> Some patients gain weight on chemo, while others (like me) stay at
> about the same weight, but substantial weight loss seems to be the
> rule. Too bad it often involves muscle loss, though. There really
> should be an upside to these diseases. I'm glad to hear you're
> getting support, and even gladder that you won't abuse it. That's
> what some call "playing the cancer card", and can make some patients a
> bit tiresome. There are times we *need* help, no matter how
> independent we like to be. Well before I was diagnosed, I had a
> friend with cancer, and I went a bit out of my way to help her. She
> was a very self-sufficient woman, but truly needed assistance at times
> during her treatment. After I started feeling the effects of
> (different) treatment myself, I was that much happier that I'd been
> considerate and helpful---a sort of "pay it forward" kind of deal.
> Now it seems that there are cancer patients wherever I look. One more
> just found out he has rectal cancer, and I wonder what I can do for
> him. The great thing is, despite cancer's traditionally morbid
> reputation, quite of few of the cancer patients I've known are still
> around, some with no sign or expectation of recurrence. The
> basketball sounds like a great idea (it was bicycling for me), but
> don't be surprised if you start having reduced capacity. I went from
> bicycling up a local mountain and being comfortable with 80+ mile
> rides to being wiped out after 5 minutes of moderate exercycle and
> being tired after a short walk. Stay active to the extent you can,
> and keep your positive attitude as much as possible. Of course, when
> you feel bad, and have a bad attitude, this is one place you can
> safely vent.
>
> ---
> CSM

Is a port an permanent hole into the body to drop or pour drugs into?

I have short term memory problems so I am going to have to take notes
when I see my doctors. Any good ideas on how to take notes as a
beginner guy getting the big diagnosis in minute detail from the
hematologist? For example get drug names, test names? As a new guy I
am not sure what all to ask, and of course, that would depend on what
they have to say, but I would appreciate any thoughts on your experience
in the context of me being a beginner. I am to book with my GP
following that a few days later so he should have the same tests and
reports, too.

I have long hair but if it falls out, it goes, but if it doesn't fall
out, it stays.

leukemiguy
From: csm7532 on 24 Sep 2008 09:56
On Sep 23, 9:13 pm, terry <electronicm...(a)telus.net> wrote:
> csm7...(a)hotmail.com wrote:
> > How about a few tattoos of incisions?  I have a fairly broad scar on
> > my chest where they put in, and later took out my "port", plus a few
> > lighter (and mostly very small) scars from surgery.  You can also
> > shave your head, as many people seem to think all cancer patients are
> > bald (I kept enough hair that strangers had no idea I'd lost any).
> > Some patients gain weight on chemo, while others (like me) stay at
> > about the same weight, but substantial weight loss seems to be the
> > rule.  Too bad it often involves muscle loss, though.  There really
> > should be an upside to these diseases.  I'm glad to hear you're
> > getting support, and even gladder that you won't abuse it.  That's
> > what some call "playing the cancer card", and can make some patients a
> > bit tiresome.  There are times we *need* help, no matter how
> > independent we like to be.  Well before I was diagnosed, I had a
> > friend with cancer, and I went a bit out of my way to help her.  She
> > was a very self-sufficient woman, but truly needed assistance at times
> > during her treatment.  After I started feeling the effects of
> > (different) treatment myself, I was that much happier that I'd been
> > considerate and helpful---a sort of "pay it forward" kind of deal.
> > Now it seems that there are cancer patients wherever I look.  One more
> > just found out he has rectal cancer, and I wonder what I can do for
> > him.  The great thing is, despite cancer's traditionally morbid
> > reputation, quite of few of the cancer patients I've known are still
> > around, some with no sign or expectation of recurrence.  The
> > basketball sounds like a great idea (it was bicycling for me), but
> > don't be surprised if you start having reduced capacity.  I went from
> > bicycling up a local mountain and being comfortable with 80+ mile
> > rides to being wiped out after 5 minutes of moderate exercycle and
> > being tired after a short walk.  Stay active to the extent you can,
> > and keep your positive attitude as much as possible.  Of course, when
> > you feel bad, and have a bad attitude, this is one place you can
> > safely vent.
>
> > ---
> > CSM
>
> Is a port an permanent hole into the body to drop or pour drugs into?

Not quite permanent, but that's the general idea. There's a small
reservoir just under the skin, sealed with some kind of plastic (?)
that closes up behind a needle after removal. From there, there's a
catheter through the veins to just before the heart. They inject
through skin into the reservoir, and all the drugs they pour in are
very quickly diluted and distributed, reducing the damage they
otherwise do to veins. It also allows them to safely leave the needle
in for extended periods (mine were 2 days) while drugs are slowly
pumped in. Aside from being really creepy, it's fascinating to see.

> I have short term memory problems so I am going to have to take notes
> when I see my doctors.  Any good ideas on how to take notes as a
> beginner guy getting the big diagnosis in minute detail from the
> hematologist?  For example get drug names, test names?  As a new guy I
> am not sure what all to ask, and of course, that would depend on what
> they have to say, but I would appreciate any thoughts on your experience
> in the context of me being a beginner.  I am to book with my GP
> following that a few days later so he should have the same tests and
> reports, too.  

I carry around little notepads (ap. 3" x 5") for this sort of thing.
It also helps me to take notes before my doctor visits, with a list of
concerns, symptoms, etc. I refer to this during the visit to be sure
I'm covering all the topics I wanted to, and write down info from the
doc. You can label a page with the date of the planned visit and the
doc's name, and add to it over the course of the week prior to the
visit.

> I have long hair but if it falls out, it goes, but if it doesn't fall
> out, it stays.  
>
> leukemiguy

I'd been buzzing my hair for summer for years (and letting it grow out
for winter) when I was diagnosed. I decided to just keep buzzing it,
so any loss would be less noticeable. For whatever reason, I kept a
lot of my hair, and it never came out in big patches, though my
hairline receded a little. My onc kept assuring me that the rest
would fall out, as that's common with the treatment I had, but it
didn't. I saw other patients who kept their hair as well, though I
didn't ask if their treatments were expected to cause hair loss. Hair
is so trivial that it's not worth worrying about loss ahead of time.
All the experts can tell you ahead of time is the set of typical side-
effects, not what you'll experience. We all respond differently. My
onc also said he'd seen remarkable differences in response to
treatment based on attitude---upbeat people kept beating the odds,
while some doom-and-gloom folks did much worse than expected. It
certainly seems worthwhile to maintain as positive an outlook as
possible. This is entirely anecdotal evidence though, not backed up
by any controlled study he made reference to. Even if having an
upbeat attitude *doesn't* improve one's odds of survival or lessen the
side-effects of treatment, it means you enjoy life more than you would
otherwise, so I heartily recommend a light, humorous approach, with no
self-recriminations (even for falling into gloom and self-
recrimination). On that note, you may want to check out The Onion for
your news, politics, etc. needs. Their horoscopes are sometimes
particularly funny. Don't expect either accuracy or respectfulness
from The Onion, though.

---
CSM
From: J on 24 Sep 2008 10:47
terry wrote:

> I have short term memory problems so I am going to have to take notes
> when I see my doctors. Any good ideas on how to take notes as a
> beginner guy getting the big diagnosis in minute detail from the
> hematologist? For example get drug names, test names? As a new guy I
> am not sure what all to ask, and of course, that would depend on what
> they have to say, but I would appreciate any thoughts on your experience
> in the context of me being a beginner. I am to book with my GP
> following that a few days later so he should have the same tests and
>

http://www.leukemia-lymphoma.org/all_page?item_id=6935
What to Ask After Diagnosis


Choosing a Specialist
Treatment
Clinical Trials
Complementary and Alternative (CAM) Therapies
Second Opinion Consultations

Taking an active role in making treatment decisions can have a positive
effect on your health and your quality of life. To help you make treatment
decisions you may want information about how to choose a specialist or
cancer treatment center. You will also what to find out if more tests will
be needed to confirm your diagnosis; what the usual approach to treatment
is for your diagnosis; if new treatments are being developed that you may
want to learn about; and if you should get a second opinion.
Choosing a Specialist

Hematologists and oncologists are specialists who treat persons with
leukemia, lymphoma, myeloma, myelodysplastic syndromes, myeloproliferative
disorders and other diseases.

Click here for a printable question guide to help you in choosing a
specialist. In addition to these questions, you can ask anything else you
want to know about your diagnosis, treatment, support and personal issues.
You may find it helpful to bring a family member or friend to participate in
the discussion, take notes and provide support.

It is important to get cancer care in a center or practice that specializes
in treating the patient's disease. Some people choose a treatment facility
first, while others choose the oncologist they want to be in charge of the
treatment. Healthcare coverage and location may play a role in the decision
process.

Click here for more information about choosing and communicating with a
cancer specialist.

Click here for more information about choosing a treatment center.

Return to top
Treatment

You will want to ask questions and discuss any concerns you have with your
oncologist throughout your treatment. Your treatment options will depend on
your diagnosis, age, cytogenetic analysis, overall health and other factors.
Treatment approaches for blood cancers may include chemotherapy, radiation
therapy, stem cell or marrow transplantation, or immunotherapy. Read
more...

Click here for a printable question guide for discussing treatment options.

Click here for a printable question guide for discussing treatment side
effects.

Click here for a printable question guide for discussing at-home
medications.

Return to top

Clinical Trials

A clinical trial can be designed to test new treatment(s) that improve
response or quality of life for newly diagnosed patients. In other words,
clinical trials are not only for people with the most advanced disease. Read
more....

Click here for a printable question guide for discussing clinical trials
with your oncologist.

Return to top
Complementary and Alternative (CAM) therapies

Many cancer centers now offer integrative medicine (IM). IM uses CAM
therapies that have been found to be safe and helpful. CAM is used with
standard cancer care such as chemotherapy, radiation therapy and
immunotherapy. CAM therapies include therapeutic massage, acupuncture, yoga,
herbs, meditation, and music therapy, among others.

It is important to talk openly with your oncologist about any CAM therapies
you are currently using or considering using. Your oncology team can advise
you about CAM therapies that are safe to incorporate with your treatment.
Some CAM therapies have been studied and may help some people with treatment
side effects (for example, nausea or fatigue). To date, there is no
scientific evidence that any CAM therapies will slow cancer progression.
Your physician can give you more information.

Click here for a printable question guide for questions to ask

To view or print the Society's information about CAM therapies click here.

Return to top
Second Opinion Consultations

You may decide to that having a second physician review your case will help
you make a more informed treatment decision. Read more

Click here
for a printable question guide for a second opinion consultation.

It is a good idea to start a file of all your medical records and it's
important to have your records sent to the consulting physician ahead of
time if you are seeking another physician's opinion. Read more...

Be sure to check whether your health plan will pay for a second opinion.

Click here for a printable question guide for discussing your of
second-opinion- consultations-health insurance coverage.

For more information to help you coping with your diagnosis you can order
free booklets from the Society including Each New Day, Coping: Support for
People Living with Leukemia, Lymphoma or Myeloma, and Financial Health
Matters.



From: bgl on 24 Sep 2008 12:41
"terry" <electronicmail(a)telus.net> wrote in message
news:48D9B02F.24DBD442(a)anonymous.com...
>
> I have short term memory problems so I am going to have to take notes
> when I see my doctors. Any good ideas on how to take notes as a
> beginner guy getting the big diagnosis in minute detail from the
> hematologist? For example get drug names, test names? As a new guy I
> am not sure what all to ask, and of course, that would depend on what
> they have to say, but I would appreciate any thoughts on your
> experience
> in the context of me being a beginner. I am to book with my GP
> following that a few days later so he should have the same tests and
> reports, too.
>

Get paper copies of all tests, etc. that have already been done & be
sure to start "training" all your doctors to just send them
automatically -- shouldn't be a problem, but not all patients want this
so docs may not volunteer it.

When I'm getting ready to see the doctor, I make notes & questions on a
big yellow-pad, leaving plenty of room to put in answers, arrows,
additional notes/questions/to-do's, followup plans, prescriptions
needed, etc. I start this "homework" well enough ahead that I have time
to add things in as I think of them in the days leading up to the
meeting. Then the day before I organize it all into whatever kind of
order/outline I think makes sense. Sometimes I need only a small piece
of paper, but for major checkups it's Big Yellow Pad & I'm not shy about
it! Doctor has been known to chuckle at the sight, but it does make the
meeting go more efficiently & you're less likely to have an "oops I
almost forgot" at the end.

Some people will take tape recorders to doctor meetings. For followup
meetings, if they have a list of questions/concerns, sometimes they'll
send them in ahead for the doctor to see before the meeting.
Best wishes.
bj




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