Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  07-02-2005

Topic:  Special Guest - CheunJu Chen, M.D.

Host: Terry Waite


Chat Participants:



Terryw: Hello Wolfman

wolfman: hello Terry

Terryw: We will see how many chatters we get today

LouLou entered the room.

Terryw: Hey there

murf entered the room.

Terryw: hi Murf

murf: Morning

LouLou: Hi guys--How are you?

wolfman: Morning Murf

murf: Hi Ron

Terryw: doing OK

murf: How's Canada This morning?

wolfman: picking up speed, not too bad

LouLou: Great--Did Sharu confirm coming on the chat?

Gopher entered the room.

Terryw: He registered for a sign on

LouLou: She!!!

Terryw: Hi Gopher

Terryw: she

murf: Terry - She's a she

Terryw: OK

Terryw: I had no details other than a name sorry

murf: Morning Gopher are you new?

LouLou: Gopher--where are you from and do you have Kennedy's?

murf: 81 deg already in Houston

Terryw: here also murf

Terryw: 7:30 am

murf: I think we're in for a warm day

LouLou: My lower back has been killing me. Any suggestions for relief?

Terryw: sharp or dull pain

murf: Yes but this is a public site so I can't say

LouLou: Mostly dull but sharp when trying to lift something.

Terryw: Hi Gopher, I know you. Thanks for joining the chat

Gopher has left the room.

Terryw: Sounds like a pinched nerve Murf

Terryw: Maybe Gophers typing was not working

murf: Ya may be a bone crusher may help

murf: bone

LouLou: Still swimming most days but can't find relief.

murf: My typing is not working

Gopher entered the room.

Gary_KS entered the room.

Terryw: hi gopher,

Terryw: hi Gary

cchen entered the room.

Terryw: Hello Dr. Chen

murf: Hi Dr Chen

Coak entered the room.

LouLou: No sweat Murf--we are used to reading between the letters.

Terryw: hello John

cchen: Hi everyone.

murf: Morning John

Coak: thlink.netnetHi all

Gary_KS: Good morning. Gary Uchiyama joined from Kansas City. It is nice day today.

Coak: Great day here in MD

Terryw: Gopher may be having the Java application typing issue

Coak: finngerss don'tt wannt to work & I can't spel today

Terryw: some people it does not let type for some reason

murf: Is everyone ready for the 4th?

Terryw: reason

doughboy entered the room.

murf: Morning TJ

LouLou: Dr Chen--will you have time to answer some questions about KD?

doughboy: Good morning everyone

cchen: Sure.

doughboy: Where are you from Dr. Chen

Coak: TJ - I apologize -- I owe you a call from 2 weeks ago.

Terryw: TJ I still need to call you, next week for sure

doughboy: That's okay buddy, I understand we all have something going on all the time

Coak: Dr. Chen: Good morning.

cchen: Well... I have been all over the country. Raised in California, did some schooling and training in NY and TX. And now I am in MD at the NIH working with Dr. Fischbeck

doughboy: Okay Terry I had to quit working so I'm free most of the time.

cchen: Hi John. How are you today?

Coak: We have heard rumblings about some possible upcoming trials at the NIH

Coak: Can you discuss any aspect of this?

Terryw: Dr. Chen what have you been working on in relation to Kennedy's

cchen: This is true John. We are in the process of planning a clinical trial with the drug dutasteride.

Terryw: what does that drug do?

LouLou: How is the testing for the upcoming trials coming along and how many of us will you be able to use?

Coak: How many people will be a part of that test?

cchen: I have been having some difficulties with my internet connection. So just in case I do not respond promptly. that is likely the reason

Coak: Us also

Terryw: Only connection problem here is between brain & fingers

doughboy: Hypothetically, if the drug did show signs of working, would it be safe to say that it would help our future generation and not us guys who have it now so much!

Coak: lol, Terry

cchen: So back to the trial. We are planning to enroll 40 patients with Kennedy's disease. And it will be a randomized-controlled study with 20 patients in the control arm and 20 patients in the treatment arm. The drug itself is an already FDA approved drug which is used for benign prostatic hypertrophy/ enlargement.

LouLou: Good to see this many on the chat being this is a holiday week-end.

murf: What is the main difference between Dutasteride and the first drug finasteride?

cchen: Geez, I type quite slowly in comparison to all you guys. By the time I am finished with my sentence, all these questions pop up.

Terryw: where will the KD patients come from for the study? We have over 600 individuals in our database that have Kennedy's Disease if you need any volunteers.

Terryw: local to the NIH?

Coak: Does the NIH have 40 with KD in their database at this time?

Chuck entered the room.

Coak: Dr Chen -- take your time -- this pace is normal for us who cant type or spell

murf: Sorry Dr. Chen, we're just so excited you joined us this morning

LouLou: Dr Chen--Is it possible the drug used for testing may interact with any drug we may be taking at this time?

cchen: Both dutasteride and finasteride are drugs that work on an enzyme called 5-alpha reductase. Both are FDA approved. Dutasteride is newer and acts on more of the enzyme than finasteride and thus exerts a more powerful effect.

murf: Great!

doughboy: Dr. Chen, I am 49 yrs old and I have alot of problems with pain in my chest all the time, my neurologist thinks it's my cartilage shrinking, have you seen this in other KD patients?

doughboy: Has anyone talked to Bruce lately?

cchen: Well.... currently I just talked with Alison, our genetic counselor, and she told me that we have around 20 patients on our data base at the NIH

Coak: We here at the KDA can assist if needed

doughboy: That's true John!

Gopher has left the room.

murf: We all have out hands up

Coak: TJ- Bruce got a good report & is in an air cast

cchen: Please don't apologize. I really do not mind answering your questions. It's just that with my slow typing and my slow computer system and slow internet connection, I feel as if I am missing most of the questions

doughboy: Thank goodness , I hope he's feeling better!

Coak: Dr Chen -- you can scroll back up the page and look at earlier //s -- then pick out some

doughboy: That's alright Dr., you'll find we are repetitive sometimes anyway!

Coak: That's ??s --- #$%^& fingers

cchen: So back to the patients. Once the protocol goes through the appropriate committees and the internal review board at the NIH accepts the protocol and say that we can start, then we plan to advertise the trial through the KDA

LouLou: Dr Chen--don't apologize--we are glad you joined us and we all have questions.....One at a time is all you can do...We will be patient.

Coak: Great!

doughboy: Is there any kind of time line to when you think this may happen?

Gary_KS: Dr. Chen, can we see the trail detail in NIH web-site?

FL-DON entered the room.

Coak: Hi Don

doughboy: morning Don

LouLou: Hey Don. How are you?


murf: Morning Don - We have Dr. Chen on board this morning

FL-DON: enjoying a beautiful day here in sunny fl

doughboy: We are too in Texas

cchen: The NIH usually does not post up the exact details of the trial. They usually will state that there is a trial with such a disease. And contact information. If you contact us, we would be happy to give you the details.

Coak: Dr Chen is at the NIH working with Dr Fischbeck

denny entered the room.

cchen: Doughboy....I have not seen anything with regards to cartilage shrinking causing chest pain in Kennedy's patients. This is not familiar to me.

LouLou: Hi Denny

doughboy: Of Course Don, Texas is sooo big that the reason your getting your sun today is because we actually extend over FL. LOL

wolfman: Hi Denny

denny: Good morning all.

doughboy: Could it be connected to the fact that I had my breast reduced when I was a teenager?

murf: Dr. Chen - Would we be able to get permission to publish up-dates / findings on the KDA web site?

Coak: TJ -- I has severe pain (it was in the breast, not the chest) -- It disappeared after the mastectomy

murf: LOL TJ//2

cchen: Back to the trial, I don't know how familiar you all are with the research going on in Kennedy's disease but the concept is based on some animal work which showed that lowering levels of androgens improves the symptoms.

LouLou: Dr Chen--as you see there is a very LARGE interest in the upcoming trial. I'm sure we can provide the men for the test.

doughboy: John, mine is on the side of mine and goes over to the right side also, my ribs get so sore that I can not lay on my side, I take pain pills everyday!

Gopher entered the room.

Coak: Tried more beer??

FL-DON has left the room.

LouLou: TJ--This pain has nothing to do with your heart does it?

cchen: doughboy... again, I have spoken with other men with breast reduction surgery, but they do not complain of chest pain. Have you discussed this with your primary doctor. It may not be related to the Kennedy's disease

doughboy: Have not ever drank because of my fear it will react to the medicine I'm taking. I'm also on 225mg of Effexor daily and Xannax.

murf: No TJ has a big heart

FL-DON entered the room.


doughboy: No Lou, can't tell you how many EKG's in the middle of the night I've had worrying about that, my neurologist tells me to quit worrying about that, that my heart is great.

LouLou: Big like Texas---Right? LOL

cchen: Doughboy, I would discuss this with your primary doctor.

doughboy: Right!//1 //3

doughboy: I have and he tells me its in my chest wall muscles

Coak: TJ -- Stop the worry - throw pills away - get a cold case of Budweiser

doughboy: I'm almost agreeing with you John!

cchen: I am glad to see that there is a large interest in the trial. we are all quite excited. Right now we just have to go through the paperwork. We are also trying to figure out which measures to look at. We are planning to conduct the trial over a two year period. Since the disease is a slowly progressive and chronic disease, it is difficult to tell if we would in fact see a change after two years of treatment

LouLou: Terry--remember talking about not having chats close to a holiday? Well this looks like a great chat.

doughboy: It sure appears to me that the last 6 months my symptoms have speeded up!

Coak: Then get 2 cases, not one

doughboy: I think this should help the future KDers and not us so much!

FL-DON: I arrived late, could u summarize the impending trial?

LouLou: I have a shirt which says 'help me--I"

doughboy: Lots of Luv, Johnnie boy//4

cchen: Can I ask you guys a question? Are there certain skills, functions, tasks you feel as if you have lost over a years period or two years period? These can be either related to mobility or ability to function. Either with ambulation, hand function, strength, speech....?

Coak: Chuck -- Is that you Charlie?

murf: Walking for me

Terryw: Balance

LouLou: Sorry---Have a shirt which says "help me--I've fallen down and I can't reach my beer....LOL

murf: Very difficult to walk today

FL-DON: I am using a wc more and more. also, gurgling speech.

Coak: Buttoning pants & shirt

Terryw: swallowing

murf: Don - I use one every day at work

Coak: speaking in whole sentences

doughboy: yes, I can't hardly write or type anymore arms and legs going numb, memory leaving me, legs hurting more and more, hard to walk but maybe 75 ft at a time., choking more and depressed more

Terryw: French fries are the worst to swallow

Terryw: & bread

FL-DON: I use 1 wc at home, scooter in car, and another wc at work.

murf: Low crab diet Terry!

Terryw: nope

doughboy: Hey guys I'm wanting to get a power chair, do I need a dr.'s prescription to get one?

murf: You need a low carb diet Terry

Terryw: yes doughboy

FL-DON: u do if u want Medicare or ins to pay 4 it

Coak: I can't walk more than 1/2 block now -- Need to stop & rest a lot.

doughboy: Dr. Chen, since I can't exercise, I have a Huge gut and no diet helps me get it off, also take steroids monthly for the last 3 years.

murf: John that reminds me of NOLA

FL-DON: I lose a little of my functions every year

Coak: I am getting hand controls for the car soon as leg strength is falling off

Coak: Sure does, Murf.

doughboy: I certainly do want insurance to pay for it. The ones I've looked at are expensive

murf: Me too John I got one picked out already

FL-DON: on this impending study, does it involve FDA approved meds????

Terryw: Yes Don

LouLou has left the room.

Terryw: 2 year trial

Coak: I ordered the knob for steering wheel -- I want to start with that & then go to full controls

FL-DON: ty terry

Terryw: 40 KD individuals

murf: TJ - I got mine with no money out of pocket (at no cost to me) do I sound like a commercial?

doughboy: Knob s are illegal in Texas Murf!

FL-DON: in what area terry? d.c. north east etc.......

Gopher: Will try again to get included-new member

Terryw: Not sure don?

FL-DON: ty

Terryw: Dr Chen?

doughboy: Hello Gopher, where are you from? We are glad to have you join us!

murf: How did you get here TJ? //2

Coak: Don & Terry -- all over included

LouLou entered the room.

Gopher: MN Husband just diagnosed

cchen: We are planning a 2 year randomized placebo-controlled trial with the FDA approved drug dutasteride. The drug is current FDA approved for benign prostate enlargement. A similar drug is used for male pattern baldness. The drug has minimal side effects. The main side effects are decreased libido, maybe breast enlargement. So we plan on enrolling 40 patients (20 in the treatment arm, and 20 in the placebo arm). So the patients that we are including are men with genetically proven KD who are symptomatic but who are not wheelchair bound. Or men who are able to ambulate at least 100-200 feet either on their own or with an assistive device. SO patients will come in every 6 months for evaluation. At the initial, 1 year, and 2 year evaluation patients will obtain a more thorough examination and also be seen by the physiatrist and members of the physical medicine and rehab department and obtain more thorough evaluation of changes in strength. At each 6 month visit patients will see the neurologist and undergo a neurological exam and also get some blood drawn.

Terryw: ty

LouLou: All right--which one of you guys kicked me off???

FL-DON: Dr. Chen, you'll love visiting us kd'ers here in sunny fl

doughboy: What do you mean Murf! By the way did you tell the guys how well you did last week in the game?//1

doughboy: Murf did it Lou Lou

Terryw: Don I think the travel will be to go to them

Coak: Dr Chen: That's really helpful & descriptive. Thank you.

FL-DON: doc, sounds great. thanks 4 the summary

Terryw: yw

murf: I made a donation to TJ's chair fund!

LouLou: Thanks TJ--I thought it was him.

Coak: Gopher- Not to worry. This is a great club with many benefits.

murf: //3

Gopher: Dr. Chen How many men at age 65 do you know that have been diagnosed

murf: I have an ejection button here.

FL-DON: doc may want to visit fl for study after we send pictures of girls in skimpy bathing suits//15

doughboy: Be nice Murf

Coak: Don: Dr Chen IS a girl

FL-DON: sorry doc, also Chippendales here

doughboy: DR. Chen, do you have any idea what side effects there are with this medicine

murf: Good recovery Don !

Coak: ur really fast today, Don

FL-DON: no warp speed anymore

murf: Dr. as you see we haven't lost our sense of humor.

cchen: If anyone wants more information, I would be glad to answer any questions. It's a bit difficult keeping up with all the questions. I do apologize if there are questions here that I did not answer. Not intentional.

LouLou: Murf--was that an ejection button or an erection button?

murf: Spelling yes, humor no

Chuck: John, yes, Charlie is here. You know he doesn't type and I was busy at both of my doors....Sorry.

doughboy: Take your time, no problem!

Coak: You are just fine

FL-DON: appreciate your info doc

Gary_KS: Dr. Chen, thank you for the detail.

cchen: I realized that there is a limit as to how much I can scroll back

FL-DON: how do we contact u doc?

Coak: Dr Chen -- Gopher wanted to know how many 65 yr old guys are diagnosed

doughboy: I was asking if there r any side effects that u know about with the trial medicine

LouLou: One at a time Sharu. We will wait.

doughboy: yes ya'll age before beauty, go ahead Murf!

Terryw: Gopher we have many in our database that have been diagnosed in their mid 60's

LouLou: Hi Anna Lea--Long time no see. How are you and Charlie?

FL-DON: doughboy, side effects in summary above

Coak: Charlie doesn't type? He should take up a class at the local CC

doughboy: Thanks DonnyBob

murf: //0

Chuck: We are doing ok. It seems to be Charlie's fingers.

cchen: You can call the lab 301-435-9288 if you would like to talk to me. If you would like to be seen in our clinic you can contact Alison at 301-496-8969. However, we are not seeing patients for the clinical trial yet. But once the trial is underway, I am sure you will hear from us.

LouLou: What is wrong with his fingers?

Gopher: My husband was not diagnosed until age 65...what I can find, this is unusual Thanks Terry

doughboy: Thanks Dr. Chen

FL-DON: ty doc

doughboy: We are really looking forward to the trial as we are all hoping for answers and help!

murf: Gopher - your husband is lucky, most of us got this much earlier.

murf: Me at about 35 yrs

FL-DON: mid 40's 4 me

Coak: 59 here

Terryw: Gopher, some many have been diagnosed earlier with other diseases and then re-diagnosed years later with KD as Neurologists became more familiar with KD & it's symptoms

doughboy: same for me, however now that I think back sighs were there much earlier in the 30's.

Terryw: so a KD diagnosis at 65 is not really that rare

FL-DON: ALS for 2 years, than KD

cchen: How many guys are diagnosed with KD at 65? I cannot give you an exact number. But much of the diagnosis does depend on when you first started having symptoms, what those symptoms are, were you misdiagnosed with some other disease first? It is difficult... there are some patients who have had symptoms for awhile but since this is a rare disorder, it is often missed or misdiagnosed until later. Or perhaps your symptoms were minimal until later in life?

doughboy: Me too Don

murf: Sorry Don, that must have been tough

Coak: I bet the ALS scared the $%^& out of you & yours

Coak: Sorry

Terryw: exactly Dr. CHen

FL-DON: longest 2 years of my and wife's life

LouLou: You lucked out Don--KD is the better of the two.

FL-DON: u betcha

murf: Ya, we could have it a lot worse

cchen: So in terms of the actual diagnosis, there are many factors involved. But you could have had symptoms for many years and just not know what they were attributed to

doughboy: Yes that's what my neurologist thought I had was ALS and I was sent to Dr. Stanley Appel at the Methodist Hospital and after a weeks worth of test he said I had KD

wolfman: 63 yrs for me

FL-DON: I walk in a wading pool 2 hours most every day. keeping muscles working for the cure

Gopher: Fortunately symptoms are mild, but it is hard to know what is KD and

Coak: Sure could have it worse. At least with KD our feet still can get in our mouth

murf: I though I was just lazy and out of shape (like a bowling pin)

Coak: Gopher, your husband could call me & talk if he ever wanted to

LouLou: On a regular basis John.

Coak: you were right, murf

doughboy: LOTS of LUV Murf

murf: We are always available to be an ear for anyone!

Gopher: Because he was first diagnosed with ALS and did lots of reading,

Gopher: he is not reading about KD, I am

doughboy: In the scheme of everyday life you're right John, however in reality it effects our life 24 seven

Coak: He needs to talk with one of us who are living with it

FL-DON: I was involved in the Ohio state study several years back where they injected us with luprolide. got extremely weak as the drug cut off our testosterone production. never saw the results of the study

LouLou: We all go thru times of depression about our situation. Try to get in touch with other KD'ers to talk thru your specific problem. IT HELPS!!!

Gopher: He is on gamapentin...anyone tried it?

doughboy: Good point Don, Dr. Chen will they keeps us informed about the results as they get them!

FL-DON: good 4 the doc

Coak: Gopher -- email me at This email address is being protected from spambots. You need JavaScript enabled to view it. with your husband's name & phone # and I'll call him (ONLY if you want me to).

Gopher: It has given him lots of relief from twitches

cchen: Many patients with KD are misdiagnosed with ALS. Because they both affect motor neurons and they produce similar symptoms initially. But KD is definitely a more benign disease

Terryw: Dr. Chen, The official chat will end in 5 minutes but everyone can remain in the chat room and chat past that time.

Gopher: ty Coak...he is not ready yet

FL-DON: ill stay till wife puts me 2 work

doughboy: Good ole John, always there to help! As well as we all our, but Johns our "Big Brother" at least for me as well as I appreciate all of you

Coak: 10-4 -- The offer stands forever

murf: When he is, we are all ready

Gary_KS: Don, it looks like the phase 2 study completed. I found it in site.

FL-DON: can u give me a site Gary?

FL-DON: sry, got it

Gopher: Thanks!! It is great to have a place to ask questions

Coak: Dr Chen: This has been great !! We all appreciate your being here today.

Terryw: Yes, Dr. Chen. Thank you from all of us

murf: More than we can say...thank you

cchen: Gopher.... and if he would like to be seen here at the NIH, please fell free to set up an appointment. We may not be able to provide any treatment at this point of time, but if he would like to learn more about the disease or if he had any questions about the disease itself.

LouLou: Dr Chen--How can we help you???

FL-DON: appreciate your time doc

doughboy: Dr. Chen, I have one more question, please. Would it benefit me to go to your hospital and be seen by you before the trial starts?

Gary_KS: Don, here you go.

doughboy: Great Chat today everyone

LouLou: Thanks for joining us Dr. Chen. Come on board anytime.

cchen: I do have one question for you. I asked it earlier. Are there any specific tasks, functions,.... that you feel that you cannot perform now which you could do 1 or two years ago? We are trying to come up with some sensitive measure in which we hope to measure changes in strength or function. Are there any specific things that you can think of? Either in the arms, hands, legs, anything in particular.

FL-DON: ty gary, may the force be with u

Coak: List coming, Sharu

doughboy: my top of the hands start hurting so I can't hold a fork. Choking and Swallowing

Terryw: My balance was fine 2 years ago

Terryw: now it's shot

murf: 5 years ago I was walking with a cane at work. I'm now in a chair and can't go to work without it.

LouLou: I definitely go thru times when I feel weaker now than two years ago. I also go thru spells when swallowing is more of a problem.

doughboy: memory slipping, balance, walking legs hurt and are so tired, feel like wood

cchen: No problem. I hope that you all found it somewhat helpful. AS I said, the trial has not started yet, so we cannot advertise it yet. And we have not yet started recruiting patients. But once we get the OK, we will advertise through the KDA. Thank you everyone. We are excited about the trial as well.

Coak: My wallet is thinner