Re: [MOL] support/REPLY to Linda [00561] Medicine On Line


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Re: [MOL] support/REPLY to Linda



Dear Linda:

Welcome to our forum.  You have come to a good place, a home away from home.
You will find the most caring, loving and understanding individual that walk
the face of this earth.  Everyone is either on the cancer journey, a loved
one or caregiver and each has something of value to put in your  book of
knowledge.

For starters, when any of us get the first diagnosis that "It's cancer" we
go into a panic state.  This is very natural; however it instills a
paralyzing fear.  Fear and stress are our worst enemies.  FACT:  More people
live with cancer than die from cancer today.

You need to muster every ounce of strength you have and draw on your
spirituality.  This has to be done, because your roll is that of  pillar of
strength, the worlds best cheerleader for your husband and for yourself.
Count us to walk with you, to understand that you will need to rant, rave,
vent, cry and yes even laugh with you.

It is very important that your husband eats a healthy diet, to stay away
from fatty foods, sugar and such.

The fact that you are getting a second opinion is a definite right step.
The fact that you are trying to learn everything you can about your husbands
perticular cancer is also very good.  There will be much to absorb.

We always suggest that a patient take either their spouse, a friend, or a
tape recorder to the doctors office.  This is where one is able to truly
remember and yes even come up with some more valuable questions.

It is very important that your husband is happy and confident with his
doctor.  It is equally as important that your husband plays a roll in the
decision making process.  Right now he feels that he has lost control, and
by actively being involved he will regain some of that control back.  It
would be foolish to say anyone in life has total control of anything; but we
like to maintain a certain degree of control when it comes to our own
bodies.

There will be several treatments offered for this perticular cancer.
Sometimes the first treatment may not work and the doctor will go to another
treatment.  Sometimes a doctor will use a two or three prong chemo
treatment.  Sometimes they will use just radiation.  One of the newer
treatments in immunology is: P-53.  It is having very good success in
clinical trials; however I do not know if they are using it for MCL.  You
may want to ask the doctor about this.

Know that the cancer journey is like a roller coaster, ups and down's; just
keep in mind that no question is a dumb question.  You can do it, we are
counting on you.
Warmly, your friend, lillian
                                *************
A good site to help you and lead you to other sites on clinical trials.
http://www.lymphomainfo.net/therapy/clinicaltrials.html
                                *************
In his engaging and acclaimed new book, Second Opinions: =
Stories of Intuition and Choice in the Changing World of Medicine, =
Jerome Groopman, MD, tells seven life-and-death stories that illustrate =
the dangers of not listening or not speaking up. Groopman is the =
Recanati Professor at Harvard Medical School, a staff writer for The New =
Yorker, chief of experimental medicine at Beth Israel Deaconess Medical =
Center in Boston, and, as his writing reveals, a vulnerable human being. =


He begins his book with the cautionary tale of his own pigheadedness as =
a young patient. He then recalls his hesitance to speak up as the parent =
of a sick infant -- a reticence that almost led to his son's death from =
an intestinal obstruction. And in the course of a tale about saving a =
patient's life, he confesses his own medical mistake years earlier that =
resulted in a patient's death. In his only Internet interview, Groopman =
responded to questions from WebMD openly and with a research scientist's =
eye for detail.=20

WebMD: While each of the seven stories you tell in your book stands on =
its own, was there one main point you were trying to communicate?=20

Groopman: Yes. The point is really in the story about our son who almost =
died because of two sequential medical misjudgments. That was a =
transforming experience for both my wife and me. As the years went by, I =
thought about it more and felt it was very important to recount that =
story (and the others in the book) to give both patients and doctors the =
courage to come closer in terms of communication.=20

WebMD: The stories seem to be about there being a time to talk and a =
time to listen. You said your experience as a patient with a ruptured =
disc in search of a quick fix -- because you were determined to run in =
the Boston Marathon -- taught you more about listening than you learned =
in medical school. Where did you go wrong?=20

Groopman: I told that story about myself because I was a very bad =
patient. I was young and cocky and really determined to "doctor shop" =
until I found an orthopedic surgeon who told me, glibly, exactly what I =
wanted to hear. I've regretted that decision for the last 21 years. It =
changed my life, and not for the better, in terms of functioning. I =
would have benefited from listening more closely to the other physicians =
who offered more conservative approaches and also from having someone =
with me [in the exam room], because when you're a patient, you're =
confused and frightened. I was in pain and I made a mistake. (See How to =
Ask for a Second Opinion)=20

WebMD: It's pretty hard when you're young and healthy to imagine you can =
be permanently changed by not listening. Is there a way to teach people =
this?=20

Groopman: Yes, the power of stories. That's why I wrote in this format =
instead of a self-help book or "Ten Things to Ask When You Go to the =
Doctor." I hope that people who hear my story will think "Here's a =
highly educated and hard-driving physician, and he's still placed in =
this position." That can be very informative.=20

This is the greatest challenge for doctors -- when you have someone =
who's never been exposed to disability and he wants a quick fix and has =
this concept of returning posthaste to a former level. That illusion -- =
because healing doesn't work that way -- can be very dangerous. I had =
two close friends who recently had ruptured discs and were in a similar =
situation. I prevailed on them not to be impulsive.=20

WebMD: It seems as if we need to be most assertive and active when we =
feel sickest. How can we do that?=20

Groopman: We need a family member or friend or someone to be with us and =
advocate for us because it's very difficult otherwise. When I had my =
ruptured disc, if I had taken my wife with me, she might have said =
something like, "Look, Jerry's an impulsive guy who's addicted to =
running and isn't listening because he has his heart set on the Boston =
Marathon." That might have given my surgeon pause. It might have given =
me pause.=20

WebMD: In one of your stories, you touch on the privileged life of the =
academic/research doctor. The HMO doctor told you to "come down from =
your ivory tower" and complained about how many patients he has to see. =
What can we do about the fact that most of us are seeing doctors who =
have budgeted 10 to 15 minutes for us? (See How Do You Know Your Doctors =
Are Listening?)=20

Groopman: This is the key issue -- this and choice -- with regard to our =
health plans now. I think everyone is unhappy with the current medical =
system -- patients, doctors, nurses. We need to restore time for =
patients or we're not going to be able to deliver effective and =
satisfactory health care.=20

WebMD: You write about your spiritual life and belief in the unexpected. =
What did you learn from your patient who had a melanoma and lost a =
lottery to participate in the clinical trial of a drug you were =
researching? The patient ended up miraculously cured on a drug you felt =
might only hold him for a few months.=20

Groopman: As I said in the book, my colleague called me Pygmalion and =
said I was deeply in love with my own work. The drug we were so excited =
about ended up having no meaningful effect on human cancer. Men were not =
mice. I was intoxicated by laboratory science, when I should have =
scrutinized the research with humility.=20

WebMD: What do you do with the patient who has seen an alternative =
provider who's told him he doesn't need the established treatment you =
feel is necessary?=20

Groopman: I respond honestly. I'm open-minded. There are certain things =
like acupuncture which have been shown to be helpful. ... Alternative =
providers look in the patient's eyes and hold his hand and ask how =
stress is affecting this or that symptom. The doctors [working in =
managed care settings] don't ask about the patient's family and feelings =
and the social context in which the illness occurs. The patient feels =
he's a disease, a case. What we find is that people who flee traditional =
medicine do so because they feel they're not being listened to.=20

WebMD: Is there a "diagnostic test" to determine when your doctor is not =
listening?=20

Groopman: I go back to the story of my infant son. We had been driving =
cross-country on the July Fourth weekend and had already seen one doctor =
in Connecticut who dismissed my wife's concerns that Steve was seriously =
ill. Then when we got to the emergency room in Boston, the surgical =
resident seemed so tired and anxious to get some sleep. My wife [also a =
physician], who is a very organized thinker, gave a crisp and complete =
recitation of the last 24 hours. But when the resident started examining =
our son, he began asking, "When did you last nurse? When was his diaper =
changed?" -- all the things we had just told him. We knew he wasn't =
listening and that we had to go around him to save our son.=20

In the end, Groopman told WebMD, patients can tell if their doctor is =
listening to them by carefully listening themselves to what their doctor =
says. If the doctor doesn't recall something you said minutes earlier, =
politely point this out, and ask the physician if he or she is =
distracted. Some physicians may be offended, but you will grab their =
attention -- and perhaps save your life.=20

Alice Kahn, RN, NP, spent eight years as a reporter and columnist for =
The San Francisco Chronicle. She currently works as a clinician in the =
Chemical Dependency Recovery Program and as a research =
nurse-practitioner in the Women's Health Initiative Hormone Study at =
Kaiser Permanente in Oakland. She is the author of five books, including =
Your Joke Is in the E-mail.=20


We invite you to take a look at our Album.                               =
                =20
www.angelfire.com/sc/molangels/index.html=20

  ( Very informational, good tips, Molers pictures, art work and much =
more....


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<P><SPAN class=3Dnoanchor-headline>Speaking to Your =
Doctor</SPAN></P><SPAN=20
class=3Dsmall-black-headline>The key to health may be knowing when to =
talk and=20
when to listen. </SPAN><BR><BR>By Alice Kahn <BR>WebMD Medical =
News<BR><SPAN=20
class=3Dnormal>
<P>May 15, 2000 -- In his engaging and acclaimed new book, <I>Second =
Opinions:=20
Stories of Intuition and Choice in the Changing World of Medicine,</I> =
Jerome=20
Groopman, MD, tells seven life-and-death stories that illustrate the =
dangers of=20
not listening or not speaking up. Groopman is the Recanati Professor at =
Harvard=20
Medical School, a staff writer for <I>The New Yorker,</I> chief of =
experimental=20
medicine at Beth Israel Deaconess Medical Center in Boston, and, as his =
writing=20
reveals, a vulnerable human being.=20
<P>He begins his book with the cautionary tale of his own pigheadedness =
as a=20
young patient. He then recalls his hesitance to speak up as the parent =
of a sick=20
infant -- a reticence that almost led to his son's death from an =
intestinal=20
obstruction. And in the course of a tale about saving a patient's life, =
he=20
confesses his own medical mistake years earlier that resulted in a =
patient's=20
death. In his only Internet interview, Groopman responded to questions =
from=20
WebMD openly and with a research scientist's eye for detail.=20
<P>WebMD: While each of the seven stories you tell in your book stands =
on its=20
own, was there one main point you were trying to communicate?=20
<P>Groopman: Yes. The point is really in the story about our son who =
almost died=20
because of two sequential medical misjudgments. That was a transforming=20
experience for both my wife and me. As the years went by, I thought =
about it=20
more and felt it was very important to recount that story (and the =
others in the=20
book) to give both patients and doctors the courage to come closer in =
terms of=20
communication.=20
<P>WebMD: The stories seem to be about there being a time to talk and a =
time to=20
listen. You said your experience as a patient with a ruptured disc in =
search of=20
a quick fix -- because you were determined to run in the Boston Marathon =
--=20
taught you more about listening than you learned in medical school. =
Where did=20
you go wrong?=20
<P>Groopman: I told that story about myself because I was a very bad =
patient. I=20
was young and cocky and really determined to "doctor shop" until I found =
an=20
orthopedic surgeon who told me, glibly, exactly what I wanted to hear. =
I've=20
regretted that decision for the last 21 years. It changed my life, and =
not for=20
the better, in terms of functioning. I would have benefited from =
listening more=20
closely to the other physicians who offered more conservative approaches =
and=20
also from having someone with me [in the exam room], because when you're =
a=20
patient, you're confused and frightened. I was in pain and I made a =
mistake.=20
(See <A href=3D"http://my.webmd.com/content/article/1691.50348">How to =
Ask for a=20
Second Opinion</A>)=20
<P>WebMD: It's pretty hard when you're young and healthy to imagine you =
can be=20
permanently changed by not listening. Is there a way to teach people =
this?=20
<P>Groopman: Yes, the power of stories. That's why I wrote in this =
format=20
instead of a self-help book or "Ten Things to Ask When You Go to the =
Doctor." I=20
hope that people who hear my story will think "Here's a highly educated =
and=20
hard-driving physician, and he's still placed in this position." That =
can be=20
very informative.=20
<P>This is the greatest challenge for doctors -- when you have someone =
who's=20
never been exposed to disability and he wants a quick fix and has this =
concept=20
of returning posthaste to a former level. That illusion -- because =
healing=20
doesn't work that way -- can be very dangerous. I had two close friends =
who=20
recently had ruptured discs and were in a similar situation. I prevailed =
on them=20
not to be impulsive.=20
<P>WebMD: It seems as if we need to be most assertive and active when we =
feel=20
sickest. How can we do that?=20
<P>Groopman: We need a family member or friend or someone to be with us =
and=20
advocate for us because it's very difficult otherwise. When I had my =
ruptured=20
disc, if I had taken my wife with me, she might have said something =
like, "Look,=20
Jerry's an impulsive guy who's addicted to running and isn't listening =
because=20
he has his heart set on the Boston Marathon." That might have given my =
surgeon=20
pause. It might have given me pause.=20
<P>WebMD: In one of your stories, you touch on the privileged life of =
the=20
academic/research doctor. The HMO doctor told you to "come down from =
your ivory=20
tower" and complained about how many patients he has to see. What can we =
do=20
about the fact that most of us are seeing doctors who have budgeted 10 =
to 15=20
minutes for us? (See <A=20
href=3D"http://my.webmd.com/content/article/1691.50347">How Do You Know =
Your=20
Doctors Are Listening?</A>)=20
<P>Groopman: This is the key issue -- this and choice -- with regard to =
our=20
health plans now. I think everyone is unhappy with the current medical =
system --=20
patients, doctors, nurses. We need to restore time for patients or we're =
not=20
going to be able to deliver effective and satisfactory health care.=20
<P>WebMD: You write about your spiritual life and belief in the =
unexpected. What=20
did you learn from your patient who had a melanoma and lost a lottery to =

participate in the clinical trial of a drug you were researching? The =
patient=20
ended up miraculously cured on a drug you felt might only hold him for a =
few=20
months.=20
<P>Groopman: As I said in the book, my colleague called me Pygmalion and =
said I=20
was deeply in love with my own work. The drug we were so excited about =
ended up=20
having no meaningful effect on human cancer. Men were not mice. I was=20
intoxicated by laboratory science, when I should have scrutinized the =
research=20
with humility.=20
<P>WebMD: What do you do with the patient who has seen an alternative =
provider=20
who's told him he doesn't need the established treatment you feel is =
necessary?=20
<P>Groopman: I respond honestly. I'm open-minded. There are certain =
things like=20
acupuncture which have been shown to be helpful. ... Alternative =
providers look=20
in the patient's eyes and hold his hand and ask how stress is affecting =
this or=20
that symptom. The doctors [working in managed care settings] don't ask =
about the=20
patient's family and feelings and the social context in which the =
illness=20
occurs. The patient feels he's a disease, a case. What we find is that =
people=20
who flee traditional medicine do so because they feel they're not being =
listened=20
to.=20
<P>WebMD: Is there a "diagnostic test" to determine when your doctor is =
not=20
listening?=20
<P>Groopman: I go back to the story of my infant son. We had been =
driving=20
cross-country on the July Fourth weekend and had already seen one doctor =
in=20
Connecticut who dismissed my wife's concerns that Steve was seriously =
ill. Then=20
when we got to the emergency room in Boston, the surgical resident =
seemed so=20
tired and anxious to get some sleep. My wife [also a physician], who is =
a very=20
organized thinker, gave a crisp and complete recitation of the last 24 =
hours.=20
But when the resident started examining our son, he began asking, "When =
did you=20
last nurse? When was his diaper changed?" -- all the things we had just =
told=20
him. We knew he wasn't listening and that we had to go around him to =
save our=20
son.=20
<P>In the end, Groopman told WebMD, patients can tell if their doctor is =

listening to them by carefully listening themselves to what their doctor =
says.=20
If the doctor doesn't recall something you said minutes earlier, =
politely point=20
this out, and ask the physician if he or she is distracted. Some =
physicians may=20
be offended, but you will grab their attention -- and perhaps save your =
life.=20

> Hi,
> My name is Linda.  As of this week my husband was diagnosed with Mantle
> Cell.  We see another specialist next week.  I guess I don't know what
> to ask or anything.  I'm terrified for my husband!!!  After I read
> things about Mantle Cell.  It states that many people do not survive.
> Can you please send some words of encouragement.
>
> Thanks and god bless to you!
>
> Linda
>
> ------------------------------------------------------------------------
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