Re: Coordination of CLL Specialists with Local Doctors

[Guest guest]

Dear Tim,

At treatment (tx) time, it's a good idea to get a second or even third

opinion from an " expert " or two.. Once you decide on a plan, you often

can find a local hospital or cancer center equipped and willing to

carry it out. The way to find out is to come right out and ask. You

can call local cancer centers and speak with the chairman of the

hem/onc dept. Or sometimes I find it's good to speak with the nurse in

the dept—they can be really helpful. If the treatment you decide on is

fairly " routine " it should be possible. Also bear in mind, Tim, tx

regimes vary in terms of how often one has to go. You may end up with

a plan requiring only 1 day/week or 3 days/week for only 1 week per

month. All things considered, if it results in your getting the best

treatment and you explain it to your children, they'd be best off with

you healthy and thriving. U. Mich (my freshman year school) has a

great facility. Hope this helps a little.

-Ellen Diamond

> I've been reading in the background for the last year since I was

> diagnosed with CLL and have got so much information from this site.

> I'm 49 and W & W. After a bad overall experience with my first

> oncologist and general lack of trust, rapport and confidence, I

> started to see a CLL specialist at University of Michigan which is

> about an hour and a half from my house. This guy is great, he explains

> things, great manner, he's a CLL researcher, same overall philosophy,

> this is the guy I want making the detailed decisions about my

> treatment. However, after taking the day off from work in December and

> my trek to Ann Arbor turned into a 10 hour round trip excursion due to

> heavy snow and traffic, I finally faced up to the reality of my future

> treatments (which likely won't be more than 1 or 2 years away). Since

> I work and my kids are young, it will probably be extremely difficult

> for me to be running back and forth to U of M for chemo and for that

> matter to be hospitalized in the event of an infection. There is a

> decent local hospital in my community although it has no affiliation

> with U-M.

>

> I know that many people posting here use a CLL specialist at some

> distance from their home but also have a local oncologist as well as

> an Internist. What I wanted to know is how do you go about getting all

> of these doctors to cooperate and coordinate with each other in a

> timely way, especially if you should require hospitalization during

> chemo or due to infection? How does the CLL specialist monitor you at

> a distance? Do any of these doctors resent having to coordinate

> outside their own hospital or with an expert some distance away? Do

> you or a family member have to do the coordination? I have heard of a

> good local doctor who I would want to be my hematologist in this area

> but I know my Internist has no experience with CLL.

>

> Any input on how you make all this work would be appreciated. Thanks,

>

> Tim

>

>

[Guest guest]

I too carry a binder with me when I go to any and all my physicians. It contains a copy of any tests performed by any physician or lab. Even if I think it might not be related to my CLL, I show it to the doctor I am with and make them a copy for them to keep in my files. Often times doctors need to be reminded not only who you are, but what conditions you have. They are not neglectful or malicious they are just overwhelmed. You need to be your advocate and keep copies of every single thing that is done on or for you. Even ask the doctors for a copy of their notes to take with you as well. Most are glad to oblige, if not they are not the doctor for you.

May God Bless.

Helen K. A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

Several thoughts re: coordination among Md's. What has become clear

to me in my own continuing journey through CLL-land is that (1) all

doctors are very busy, and hence have limited time to focus on my

case. This being the case, I find it absolutely necessary to bring

whatever fruits of research I have done on current treatment options

to his attention, and to bring up potential alternative scenarios,

including seeing other care providers, etc. (2) unless the oncologist

is a specialist in CLL, he or she may not be able to pinpoint the

best course of action for your particular sitation at a particular

point in time (itself a moving target, as are all aspects of dealing

with CLL, as I find each day). Hence, there is indeed great wisdom in

having a variety of treatment resources. One way to get these

resources to better cooperate is to find someone in each office who

has the time, skills, inclination and willingness to be your

advocate. For example, last year I traveled 1800 miles to see a CLL

specialist at the MD Center in Houston. While there, I was

given the name of the doctor's assistant who is essentially the

conduit for communication with the doctor. I have had great success

in communicating through her. At the same time, I have become enough

of an individual to my local oncologist's assistant that I feel I can

gain the oncologist's ear by communicating through her. I have also

taken the step of making sure each care provider sends whatever

information is generated during my visit to each of the other care

providers (including my primary care physician). In sum, I have found

that an essential part of dealing with my CLL requires me to take a

very active role in the entire scenario.

>

>

> I've been reading in the background for the last year since I was

> diagnosed with CLL and have got so much information from this site.

> I'm 49 and W & W. After a bad overall experience with my first

> oncologist and general lack of trust, rapport and confidence, I

started

> to see a CLL specialist at University of Michigan which is about an

hour

> and a half from my house. This guy is great, he explains things,

great

> manner, he's a CLL researcher, same overall philosophy, this is the

> guy I want making the detailed decisions about my treatment.

However,

> after taking the day off from work in December and my trek to Ann

Arbor

> turned into a 10 hour round trip excursion due to heavy snow and

> traffic, I finally faced up to the reality of my future treatments

> (which likely won't be more than 1 or 2 years away). Since I work

> and my kids are young, it will probably be extremely difficult for

me to

> be running back and forth to U of M for chemo and for that matter

to be

> hospitalized in the event of an infection. There is a decent local

> hospital in my community although it has no affiliation with U-M.

>

> I know that many people posting here use a CLL specialist at some

> distance from their home but also have a local oncologist as well

as an

> Internist. What I wanted to know is how do you go about getting all

of

> these doctors to cooperate and coordinate with each other in a

timely

> way, especially if you should require hospitalization during chemo

or

> due to infection? How does the CLL specialist monitor you at a

distance?

> Do any of these doctors resent having to coordinate outside their

own

> hospital or with an expert some distance away? Do you or a family

member

> have to do the coordination? I have heard of a good local doctor

who I

> would want to be my hematologist in this area but I know my

Internist

> has no experience with CLL.

>

> Any input on how you make all this work would be appreciated.

Thanks,

>

> Tim

>

[Guest guest]

In sum, I have found that an essential part of dealing with my CLL

requires me to take a very active role in the entire scenario.

I'll second that. Obviously lots depends on the individuals involved,

the specialist and the local doc. So you go about it trying to be

respectful of everyone's time by preparing and providing the contact

info (phone, email, fax) and summarizing your main questions and the

salent points and sharing with each. You then make clear what your

current understanding is regarding therapy when needed, and the main

open questions ... subject to change as circumstances and available

options change.

Also,don't forget to bring a loved one or signficant other with you to

sit in on the consults. I think this simple step has been proven to

improve the quality of the consult, and likely the cooperative spirit

going forward as well.

Karl

[Guest guest]

I have a similar problem in that I have gone through kidney failure

and a TIA, which requires/required a neurologist and a nephrologist,

in addition to my GP and osteopath and Traditional Chinese Medicine

practitioner. I have also been getting second opinions at Dana

Farber. My approach is to keep as complete a file on myself as I am

able. I get copies of all lab tests and do not assume they are

shared. I bring copies with me whenever I go to another appointment

and provide them to the treating physician. SOmetimes I send them

ahead of time. I check to make sure whatever tests ANY of them want

are on the agenda at each appointment. I have a good personal

relationship with the drs' staff so I can get them to forward records

or make sure test orders include everything that should be included.

In your situation, I would suggest using your Michigan Dr as a second

opinion, and make sure that copies of records are sent to him. Find

a local oncologist who feels comfortable regularly consulting with

him. That will minimize the number of trips to Michigan, yet still

provide the comfort and access to his opinion. (When all medical

records are computerized, this will be less difficult.) Scans and

such can be reduced to CD's now and probably can be emailed as files,

assuming compatability.

Hope this helps.

Toby Hollander

Portland, ME

>

>

> I've been reading in the background for the last year since I was

> diagnosed with CLL and have got so much information from this site.

> I'm 49 and W & W. After a bad overall experience with my first

> oncologist and general lack of trust, rapport and confidence, I

started

> to see a CLL specialist at University of Michigan which is about an

hour

> and a half from my house. This guy is great, he explains things,

great

> manner, he's a CLL researcher, same overall philosophy, this is the

> guy I want making the detailed decisions about my treatment.

However,

> after taking the day off from work in December and my trek to Ann

Arbor

> turned into a 10 hour round trip excursion due to heavy snow and

> traffic, I finally faced up to the reality of my future treatments

> (which likely won't be more than 1 or 2 years away). Since I work

> and my kids are young, it will probably be extremely difficult for

me to

> be running back and forth to U of M for chemo and for that matter

to be

> hospitalized in the event of an infection. There is a decent local

> hospital in my community although it has no affiliation with U-M.

>

> I know that many people posting here use a CLL specialist at some

> distance from their home but also have a local oncologist as well

as an

> Internist. What I wanted to know is how do you go about getting all

of

> these doctors to cooperate and coordinate with each other in a

timely

> way, especially if you should require hospitalization during chemo

or

> due to infection? How does the CLL specialist monitor you at a

distance?

> Do any of these doctors resent having to coordinate outside their

own

> hospital or with an expert some distance away? Do you or a family

member

> have to do the coordination? I have heard of a good local doctor

who I

> would want to be my hematologist in this area but I know my

Internist

> has no experience with CLL.

>

> Any input on how you make all this work would be appreciated.

Thanks,

>

> Tim

>