International Castlemans Disease Organization

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10/26/2006 10:12 PM Jennifer Kifferly wrote:
Hello, I have been a member of this site for many years however I really only tend to post when things are not going well. I spoke to Dr VanRhee a few years ago and he had some suggestions on treatment. I am t wondering if he has any recommendations on Physicians in the Savannaha Georgia area as I have just decided to start looking for a new doctor. I again am having some issues with my mcd being active. I need a tricare provider as that is my insurance. I would also like to see if anybody has treatment suggestions however that seems to be in a different place now.Thanks jenn
Reply to this
1. 10/28/2006 4:35 AM Jim wrote:
  Jenn,
  
  The closest I know of is Florida, Boston, and ACRC. I will forward to Frits but these are the only physicians I know of.
  
  Regards,
  
  Jim Johnston, Executive Director
  Reply to this
2. 10/28/2006 2:52 PM Jim wrote:
  
  Reply from Frits an Rhee, M.D. ....
  
  She is very likely to benefit from anti IL6 ab therapy. Suggest that he comes to see me asap
  
  Dr. Frits van Rhee, MD, PhD, FRCPath, MRCP(UK)
  
  Professor of Medicine
  
  Director of Immunotherapy and Allogeneic Stem Cell Transplantation
  
  Myeloma Institute for Research and Therapy
  
  University of Arkansas for Medical Sciences
  
  4301 West Markham Street, #776
  
  Little Rock ,AR 72205
  
  Ph: 501-526 6990 Ext. 2425
  
  Cell Ph: 501-804-7020
  
  www.myeloma.uams.edu
  
  Reply to this
3. 10/1/2007 1:12 AM Cyglenda Stafford wrote:
  Hi, I just saw your request about needing a tricare provider. Dr Hufnagel at BAMC is my provider. (I am retired military). You can email me at cyglenda.stafford@us.army.mil
  Reply to this
2/15/2007 11:31 PM tanya wrote:
dr i live in boston mass and im being seen a dana farber i know that great for cancer. but what doctors in the north east of boston near me revere mass 02151 can help me. im scared i have so many huge hard lymph or tumors no clue and dont hurt im not set up for PET scan till 2-28 and to me its long time will a PET help diag.... me tanya p from revere mass/ and any help i greatly god bless you appreciate. one more ? can any castlemans cause BONE PAIN OR BODY PAIN .
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1. 2/15/2007 11:44 PM Jim wrote:
  
  Tanya,
  
  I am sending this email directly to Dr Munshi for follow-up. If you do not hear from him w/i 3-4 days, he may be out of the country at which time I will ask one of his colleagues to follow up with you. Please keep me informed as t your progress w/ Dana Farber.
  
  Regards,
  
  Jim Johnston, ED
  
  Reply to this
  1. 2/15/2007 11:52 PM tanya wrote:
    thank you , but isnt he a specialized dr in a diff cancer area, also thats who i have been seening for well since early 11/06 and just thousands of blood work and a reumo told me yeah but she saw another 1 of his patients and the blood work the other patient had went under i never got and that after 20 viles of my blood. so in that section reumotologist. sugg. another biopsy and pet not dr nikle munshi. and im in extreme pain deep bone pain like i have the flu, got ran over throbbing pain . i have an appt with pain specl. at bwh part of dana farber he knows that and i ask him to prescrib... like he did before hydrocodon just until i see pain dr. he still hasnt got back or anyone from his office ,, SO PLEASE NOT HIM HIS THERE ANYONE ELSE BLOOD SPECLIST IN MY AREA YOU CAN FIND ME. AND AGAIN DOES ANY CD CASUE PAIN LIKE THAT SOME DR'S SAY YES AND HE SAID NO..
    Reply to this
    1. 2/16/2007 12:15 AM Jim wrote:
      
      Tanya,
      
      Here are a few more specialists I have in the data base for your regiom. Please advise who works out.
      
      Dr. Brad Pohlman
      Cleveland Clinic
      9500 Eclid Ave Desk R25
      Cleveland OH 44915
      (800) 223-2273
      (216) 445-6070 clinic (Grace)
      (216) 444-9464 fax
      pohlmab@ccf.org
      
      Pulmonary & Critical Care Division
      Pulmonary Medicine
      University of Pennsylvania Medical Center
      3 Ravdin Building, Suite F
      3400 Spruce Street
      Philadelphia, PA 19104
      
      Dr. John Hansen-Flaschen
      Chief of Pulmonolgy-
      Hospital at the University of Pennsylvania
      1-800-789-PENN
      (215) 662-3202 clinic
      
      Dr. Larry Kaiser
      Chief of Thoracic Surgery
      Hospital at the University of Pennsylvania
      215-662-7538
      
      Roger K Strair , MD, PhD
      Director of Leukemia / Lymphoma
      Robert Wood Johnson University Hospital
      195 Little Albany Street
      Cancer Institute of New Jersey
      New Brunswick, NJ 08901
      strairrk@umdnj.edu
      hogangm@umdnj.edu
      (732) 235 8098 Fax
      (732) 235-6044 (Geraldine - Admin Asssist)
      
      Regards,
      
      Jim Johnston, ED
      
      Dr. Jan Jansen
      Indiana Blood and Marrow Treatment Center,
      St. Francis Hospital,
      Indianapolis, Indiana.
      Tx MCD and secondary lymphoma malignancy
      1600 Albany Street (6th Tower)
      Beech Grove IN 46017
      (317) 782-6316 (Fax)
      (317) 787-3311
      (317) 782-7338 - clinic
      
      Reply to this
2/28/2007 2:17 PM Liz wrote:
For Jim or Dr. van Rhee,
I wrote last week that my Mother-in-law was diagnosed with Castlemans. Now however, her oncologist is saying she still isn't sure. They installed a portocath for chemo (4 weeks ago), but have not started chemo yet, as they are "waiting" for more pathology results. I want to be sure that they are taking the right action.

My MIL has had 3 lymph nodes excised and all pathology comes back "reactive." I'm not sure what other pathology they are waiting for. They are currently treating her with prednisone. She has all the symptoms of Multicentric, but I would like to know more.

It has been nearly two months of tests and still no concrete diagnosis. Could you tell me what questions I should be asking the oncologist? How will they know definitively that it is CD?

This is a touchy subject for my MIL as she doesn't want to display any lack of confidence in her Doctor. Do most doctors refer their CD patients (or even patients they "suspect" have CD) to specialists, or is it common for them to just attempt to “figure things out" on their own?

I know timing can be crucial in good treatment outcomes. I would really like your advice or suggestions on what specific tests the Dr. should be doing, and questions I might ask to know whether or not they are doing an adequate job.

Thank you so much for your help! The information on this site is invaluable!!!

Liz

P.S. I have also read about the IL6 antibody therapy. Is that available for use only in Clinical trials? Is it currently being used to treat MCD? And with what outcomes? From what I've read, it seems results from that therapy have far better outcomes than prednisone, chemo, steroids, spleen removal and excision, but I would love to learn more. Thankyou!!!
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3/21/2007 1:04 AM tanya wrote:
so far pet scan down now they think castleman since november has grown into lympatic cancer or lukemunia lymphopathy now basically i have to wait and watch i have 2 pul 1 1 both armpits neck i can feel i just had a biopsy on the groin area so people and do what up
Reply to this
1. 3/22/2007 4:34 PM Jim wrote:
  
  Tanya,
  
  Please clarify your email and I will forward to a physician. When was CD first diagnosed (Dx)? What variant were you originally Dx with? What is the basis for the Drs thinking that it has grown into lymphatic cancer or Leukemia lymphopathy? Who made the decision to "wait and watch"? Although I am not a physician, I do know that aggressive measures need to be taken if the course of the disease has changed to lymphatic cancer or leukemia lymphopathy. Please advise and I can forward as soon as I hear back from you.
  
  Regards,
  
  Jim Johnston,
  Executive Director
  
  Reply to this
  1. 4/29/2007 4:25 AM tanya wrote:
    jim , My diag. was of nove 2006 before that for a year i had no insurence and quite didnt know what was happeing to me so free care first dr deff said my sed rate was hi 40 and she couldnt see anything. i had a fever hi or very low lots of body achs , but i just read through my babie records and noticed it could be link to then ch in boston i was born 1975 and i guess three days out came badk with turmor sized lymph the hold time my sed rate hi and whb high / total white count 343,000 my momo low and now from nov. till now i have alpher 2 . and notice alpa 1 . i had stap something aruiosis something lke that then they didnt take hold tumors out la nd fright of neck they treated with veirl one worked call domitis.. it was a strong antibiotic but after wards my appenix almost blue up so they had to remove it . long work so what i had since i was a babie stayp infectgion arousis. i just got back sexond biops my dr said second half of biop of second biop and he said all my paper work and me he thinks best for me to go see the lymphoma team . i tried email and calling him to find out for sure what the reason was for sure of moveing me up to the lymphoma teams what do you think tanya p
    Reply to this
    1. 5/2/2007 2:48 PM Jim wrote:
      
      RESPONSE FROM DR TRICOT (UAMS - Little Rock, AR)
      
      It does not sound like she has CD. What needs to be excluded is that she has lymphoma that will require treatment. If she was seen by Frits, I am sure he has addressed those issues.
      
      Guido Tricot, M.D., Ph.D.;
      Director of MTRC;
      (Myeloma Transplant Research Center);
      University for Medical Sciences (UAMS);
      4301 W Markham;
      Little Rock AR 72205;
      (877) 635-7240;
      TricotGuidoJ@uams.edu
      
      Reply to this
3/21/2007 7:32 PM Lori wrote:
Hi,
I have written before in "First Time Patient Inquiries". My son-in-law has been positively diagnosed with Multicentric Castleman's from a biopsy of a node removed from his groin. He also had a petscan that showed not only those lymphnodes enlarged and lit up, but nodes around his lungs as well. His spleen is extremely enlarged. His oncologist sent him to see a specialist at the University of NE Omaha Med Center. He told them nothing at all about the disease, took 2 additional blood tests, that turned out to be slightly elevated, but still fine. These results were found out only because my daughter called after 2 weeks of wondering about the out come of the lab work. My daughter was not impressed with the fact that she had spent 2 weeks gathering up all her husbands medical records, scans and lab reports, only to realize the specialist had not even reviewed them before the consult.

The specialist told him to book an appointmen with his original oncologist. That appointment was today. He said that he and the specialist concurred that no treatment was necessary. They would just watch it for awhile since there were no major symptoms. (fatigue) They would, however repeat a scan in 3 months. Is this normal treatment protocol? I think that NOW would be a good time to start some kind of treatment, prednisone at least, to reduce the size of the spleen. Why wait until a person is sick, and then make them become even more ill due to harsh treatments. Would you consider "no treatment" appropriate advice?

I think that when the specialist said no treatment was needed, my son-in-law was just so relieved, thinking that this can't really be too serious, that he doesn't need to get a second opinion. However, I do believe that if a Doctor that has had more experience with treating Castleman's would recommend at least a second opinion, he would listen.

I just don't want him to let this go unchecked, and then regret it in a few years. I will listen to anything you suggest. Thank-you in advance.
Reply to this
1. 3/22/2007 4:46 PM Jim wrote:
  
  Lori,
  
  As I have stated before, I am not a physician but I was given the option of "waiting and watching the clinical course of the disease" too. That is partially what started this web dialogue 15+ yrs ago. I was not going to sit with a tumor in my chest and just watch it grow.
  
  We know a lot more about the disease today. When I was Dx, there were no Tx options or new drug studies. We have four (4) facilities that we refer to as our "center of excellence" in the treatment of Castlemans Disease; Boston, Cleveland, Little Rock and Seattle. I would recommend getting a phone consult first from one of the major institutions and then let the physician tell you what course he thinks the patient needs. You probably may need to make a trip to one of these facilities but the expertise and specialty is well worth the trip - they save lives.
  
  Please advise if you need an address or name for any of these facilities.
  
  Kind regards,
  
  Jim Johnston,
  Executive Director
  
  Reply to this
6/14/2007 1:54 PM Gayelene wrote:
My Daughter had her castleman's tumor removed in February at UAMS in Arkansas with Dr. Van Rhee as the specialist that she saw. She lives in South Carolina where a doctor is working closely with Dr. Van Rhee on this. Her three month CRT scan was excellent with no signs of tumor (she had unicentric Castleman's. Anyway the blood work on her 4 month show her white blood count as low. Is this something that we need to worry about.
Gayelene
Reply to this
1. 6/22/2007 2:11 PM Jim wrote:
  
  Gayelene,
  
  I will email Dr vanRhee to seek a medical opinion for you. We need to seek the advice a physician that is familiar with your case. I am sure his office will be calling you shortly.
  
  Regards,
  
  Jim Johnston
  Executive Director
  
  Reply to this
8/30/2007 10:07 AM tanya wrote:
well my question to i just watch and wait so a 2.0 x0.8 cem. from 5 months ago 1.cm and before that no bigger then a pee and before that 1993 shadows were seen and my thymus area also now there telling me two in chest and 1.cm in neck now that was to small before to biop i already had two biops and 6 lumps taken out only to be left with well 2#biop same and looks to me progressed in some way not good weird. but because the second pathologist didnt put down findings of cd now its not cancer yet and not castlemans anymore i feel raped i never after 3 years lost my job and had so many ups and downs not knowing if i live or die now just left help please
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9/2/2007 3:07 PM Danica wrote:
I am family physician in FL. My 56 yo previously very healthy mother was recently diagnosed with Multicentric CD (hyaline-vascular type) with renal thrombotic microangiopathy. She lives in Orlando, FL. Because my sister lives in NY and she would have a place to stay, her hematologist recommended seeing Dr. Carol Portlock at Memorial Sloan-Kettering in NY- we are waiting for an appt. The association between MCD with glomerular renal disease is rare and I was wondering if you knew if Dr. Portlock would be the right physician to see or if you would recommend another physician in that area or elsewhere. I appreciate any help that you may have, Danica Alexander
Reply to this
1. 9/2/2007 10:09 PM Jim wrote:
  
  Danica,
  
  Actually, I have heard of Carol and but have not heard of any patients seeing her nor have I referred anyone to her. Due to the severity and rareness of MCD, I recommend you see a Specialist that has a history with MCD patients. There are three that work the midwest and east coast and actually one of them is the Castlemans Associate Medical Director*. Physician are as follows:
  
  Mohomad Hussein, MD*
  Director
  USF College Of Medicine
  12902 Magnolia Dr SRB-4
  Tampa, FL 33612
  (813) 745-8090
  
  Angela Dispenzieri, M.D.
  Mayo Clinic
  200 First Street SW
  Rochester, MN 58905
  Bus (507) 284-2479
  
  Nikhil Munshi, M.D.
  Adult Oncology
  Dana Farber Medical School
  44 Binney St., M557
  Boston, MA 02115
  (617) 632-5607
  
  Hope this helps. Please advise if I may be of further assistance.
  
  Kind regards,
  
  Jim Johnston
  ICDO Executive Director
  Santa Fe, NM USA
  
  Reply to this
  1. 12/7/2007 11:28 AM Therese wrote:
    My son was diagnosed with Castlemans a year and a half ago. The sample biopsy they did during surgery came back inclusive, however, once we received the results back from the lab, it was shown to be 'localized' castlemans. I was hoping this meant it was over. He is in some pain again, and constipated. We have scheduled another cat scan and a doctor's appointment for next week.
    
    After reading some of the information on this site, It seems like have bowel issues is not uncommon.
    
    Although I liked the Doctors we go to, it's so scary because no one seems to have a lot of experience with this disease.
    
    Does anyone know a Doctor in the Chicago, Illinois area?
    
    Thanks, Theresa
    Reply to this
    1. 12/12/2007 6:37 PM Jim wrote:
      Theresa,
      
      I would recommend you consult telephonically with one of our staff specialists in Boston. Dr Nikhil Munshi is my personal CD physician and has been seeing CD patients for as long as I have had contact with the University of Arkansas for Medical Sciences (where he previously worked). He is now with the Dana Farber Cancer Institute, Harvard Medical Center located in Boston, MA. He may be reached for a consult and potential office visit at (617) 632-6207. Please advise if I may be of further assistance.
      
      Regards,
      
      Jim Johnston
      ICDO Executive Director
      Santa Fe NM USA
      Reply to this
12/15/2007 10:04 AM Deborah Everson wrote:
I was diagnosed with mscd in March of o7. My husband and I went to M. D. Anderson and I was offered a slot in a trial testing a drug called CNTO. I go to University of North Carolina-Chapel Hill every 2 weeks for infusions. My first 2 CAT and PET
Reply to this
2/11/2008 2:13 PM Carolina Bruno wrote:
Hello, I'm an endocrinology fellow. I had a patient diagnosed with POEMS/ Castleman disease with panhypopituitarism. We found he had a pituitary macroadenoma. Have you seen pituitary pathology associated with this disease?
Reply to this
1. 2/15/2008 2:56 PM Jim wrote:
  Sir,
  
  Although I do not purport to be a physician, I have been studying this disease and associated auto-immune disorders for over 20 yrs. I would like forward your email to one of our SPecialists at the Mayo Clinic, Rochester, MN. Dr. Dispenzeri. She is a SPecialist in both Castlemans and POEMS.
  Reply to this
2. 2/15/2008 3:19 PM Jim wrote:
  Carolina, RESPONSE FROM DR DISPENZIERI
  
  Yes to pituitary hormone pathology, but no to structural abn. I'd be cuious to know if an incidentaloma rather than pathological abn.
  Angela Dispenzieri, M.D.
  
  Regards,
  
  Jim Johnston,
  ICDO Executive Director
  Reply to this
4/24/2008 1:19 PM Paige wrote:
I would like to know how to get Dr. van Rhee to look at my daughters records and pathology report which states "morphologic characteristics of castlemans disease". She has multiple enlarged nodes in her ant. mediastinum and a post mediastinal mass which we are supposing now is also a node. We need help with Jenna's diagnosis. Her pediatrician is like us in wanting some answers. We have been going to SHANDS at the Univ of Florida and since they have no answers for us they have stopped responding to our questions. What do I need to do to get a 2nd opinion for our little girl?
Thanks,
Paige Strickland
Tallahassee, Fl.
Reply to this
1. 5/2/2008 8:57 PM Jim wrote:
  Paige,
  
  I will forward your email to Dr Vanrhee as we speak and he will respond directly. You should hear from him within 24-36 hrs. lease advise if I may be of additional support.
  
  Regards,
  
  Jim Johnston
  Executive Director
  Castlemans Disease Organization
  
  Reply to this
4/29/2008 4:14 PM Laurie wrote:
As of this Thursday, I will complete 4 wks of rituxan treatments. My oncologist wants to continue with 4 wks of treatments every 12 weeks to try to keep my CD in remission. (I have the plasma cell variant.) I’m not quite sure for how long he's planning to continue with this cycle.

I have read that often drs will do a maintenance therapy of rituxan once a month. I personally would really prefer this. I have such a hard time with side effects when I’m on the Rituxan—extreme fatigue, diarrhea, shortness of breath, tingling in my legs, joint pain, and several other minor symptoms. These usually begin around the 2nd treatment.

The only problem I have when I receive the first infusion is I start to have a reaction about an hour into it and they have to slow it down. The first time I received Rituxan they ended up sending me over to the hospital to have it administered slowly. It took over 18 hrs. This time when I received my first treatment, I had the same reaction so they continued the infusion slowly until the office closed. I went back the next day to complete it. So, even though my infusion time will be long once a month, the side effects will be much less severe.

I’m curious as to the other doctors’ thoughts. Is one better than the other? Is there a criterion that determines which maintenance cycle to use? Does research show that maintenance therapy works with CD?

Thanks so much!
Reply to this
1. 5/2/2008 8:34 PM Jim wrote:
  Laurie,
  
  I cannot answer to the CD treatment utilizing Rituxan (Rituximab) but I have a family member that is currently having Rituxan infusions every 3-6 mos for Rheumatoid Arthritis (RA). They have not had ANY side effects to the drug therapy. Both nurses and the treating physician stated that every patient is different and side effects are from severe (as yours) to none (as my family member). Rituxan is currently authorized for the Tx of RA as-well-as Castlemans but as the physician has told me, the drug therapy is still new and they do not know what other ailments Rituxan will treat.
  
  I will pass this on to the physician for a clinical opinion of your Rituxin treatment and will send you an email as soon as I receive an answer. Please do not hesitate to write if further discussion is needed. Please also be advised that I am not a medical Dr. but merely a Patient Advocate with Castlemans Disease in remission.
  
  Regards,
  
  Jim Johnston
  Executive Director
  Castlemans Disease Organization
  Reply to this
2. 5/2/2008 9:08 PM Jim wrote:
  Laurie,
  
  Please check the following URL regarding side effects of Rituxan.
  
  http://www.rxlist.com/cgi/generic/ritux_ad.htm
  
  Regards,
  
  Jim Johnston
  Executive Director
  Castlemans Disease Organization
  Reply to this
5/3/2008 8:45 AM Laurie wrote:
Thanks for the website reference. I've been to it several times in the past just to make sure that the side effects I was experiencing were not uncommon for Rituxan.

My biggest question or concern is related to the maintenance therapy cycle. I've read different online articles that have stated they administered therapy once a month, once every three months, four times every 12 wks, etc. Again, I'm just curious as to the Castleman's specialists protocol for deciding which cycle to administer and/or are there other alternatives for maintenance therapy other than Rituxan.

Thanks so much,
Laurie
Reply to this
1. 6/3/2008 9:33 AM Laurie wrote:
  Hi JIm,
  
  Just wondering if you ever heard anything back from a dr concerning maintenance therapy for CD?
  Reply to this
  1. 6/5/2008 4:06 PM Jim wrote:
    Laurie,
    
    Will get a reading and get back to you as soon as I have word back.
    
    Regards,
    
    JIM JOHNSTON
    CD Executive Director
    Reply to this
  2. 7/10/2008 1:54 PM Jim wrote:
    Laurie,
    
    Regarding an earlier email pertaining to CD maintenance, I have sent a second request into the physicians for a response.
    
    Regards,
    
    Jim Johnston
    CD Executive Director
    Reply to this
  3. 7/10/2008 6:09 PM Jim wrote:
    
    LAURIE, RESPONSE FROM DR VANRHEE ON CD MAINT.:
    
    There are no studies addressing the frequency of rituxan maintenance. If you have such severe side effects it might be useful to go for once a month. Secondly you could take 20mg of dexamethasone for 4 days with the rituxan. Steroids are not always pleasant but could help and also are good to keep your disease in remission. Lastly I would see if you are making ab against the rituxan. This is unlikely but I would test for it anyway. The test is called HAMA
    
    I do recommend shingles prophylaxis in that case with acyclovir
    
    Dr. Frits van Rhee MD PhD MRCP(UK) FRCPath
    Professor of Medicine
    Director of Clinical Research
    Myeloma Institute for Research and Therapy
    laceType w:st="on">UniversitylaceType> of laceName w:st="on">ArkansaslaceName> for Medical Sciences
    4301 West Markham
    Mail slot 816
    Little Rock AR ostalCode w:st="on">72205
    ostalCode>
    cell: 501-8047020
    office: 501-5266990 ext 2425
    secretary: 501-5266990 ext 2467
    fax: 501-5262273
    
    Reply to this
  4. 7/10/2008 6:13 PM Jim wrote:
    LAURIE, RESPONSE FROM DR TRICOT:
    
    There are insufficient data on what the best way is to give rituximab to CD patients. If you tolerate rituximab once a moth better than 4 weekly doses every 12 weeks, you should receive it once a month.
    
    Guido Tricot, MD
    Director of MTRC
    (Myeloma Transplant Research Center)
    University of Utah School of Medicine
    30 North 1900 East, Room 5C402
    Salt Lake City, Utah 84132
    (801) 585-3229
    Fax: (801) 585-3432
    Reply to this
6/8/2008 6:19 PM Anne Hotta wrote:
Dear Jim
It is 3 years into my husband's diagnosis of MCD- plasma cyctic variant. A series of therapies have not worked, although the current anti-interleuken 6 (Toxcilimab?) is working very well on ESR, CRP and other blood constuents. CT scans have not shown great improvement yet in lungs and liver. The question I have is the intense pain in neck, shoulders, arms my husband has had for some time now and which does not seem to improve. We are reluctant to go back onto cortico-steroids- prolonged use and interference with the IL-6- for pain relief. Do you, or Dr van Rhee have any comments on this.

As always mny thanks, Jim
Anne Hotta
Reply to this
1. 7/10/2008 1:40 PM Jim wrote:
  Anne,
  
  When was your last follow-up with Dr. vanRhee? I will email him directly an get an answer for you w/i 24 hours.
  
  Regards,
  
  Jim Johnston,
  Executive Director
  Reply to this
7/2/2008 2:28 PM David Bertoncini wrote:
Any association seen between Castleman's Disease and Noncirrhotic Portal Hypertension? I am trying to manage a challenging patient with a confusing differential between SLE and Castleman's who is now ascitic.
Reply to this
1. 7/10/2008 12:53 PM Jim wrote:
  David,
  
  I will forward your request to our medical panel and let you know when a response is posted.
  
  Regards,
  
  Jim Johnston,
  Executive Director
  Reply to this
2. 7/10/2008 1:23 PM Jim wrote:
  CD v. SLE - RESPONSE FROM DR TRICOT:
  
  I have not seen a patient with CD and portal hypertension, but CD can be associated with so many other diseases that it is well possible that these two diseases are linked.
  
  Guido Tricot, MD
  
  Director of MTRC
  (Myeloma Transplant Research Center)
  
  University of Utah School of Medicine
  
  30 North 1900 East, Room 5C402
  
  Salt Lake City, Utah 84132
  
  (801) 585-3229
  
  Fax: (801) 585-3432
  
  Reply to this
7/14/2008 2:14 AM Anne Hotta wrote:
Dear Jim

Thank you for your help. Dr.van Rhee saw my husband's medical data in Nov.2006. (I sent his data over to you)Mabthera was then tried without success and then we began the process of obtaining anti-interleuken 6 for a trial period with the results I indicated.
Thank you, and Dr van Rhee,
Anne Hotta
Reply to this
8/4/2008 10:06 AM Rosy Kriengprarthana wrote:
Hello. I am a family/urgent care physician in southern California, and I have just found out yesterday that my 65 year old mother has Castleman's Disease, multicentric type. Besides the fact that this is not a good diagnosis, my other problem is my mom lives in Bangkok, Thailand. Do you know of any specialists in Bangkok or a nearby country that she could receive appropriate care at? And, if not, how much does average treatment cost on a cash basis in the US, and how long would she probably need treatment for? And how much longer, in terms of time/prognosis, can a specialist give to a CD patient vs. someone who treats her who is not as familiar with the disease? And is it possible for one of the experts here in the US to work in collaboration with another physician in Thailand (who can speak English, of course)? Thank you so much. Rosy
Reply to this
1. 8/6/2008 6:11 PM Jim wrote:
  Rosy,
  
  Although we have International physicians, we do not have anyone located in Thailand. In the past, we put the physician (stateside) in touch with the patient’s physician or patient directly in order to provide a telephone consult. This helps for the short term to get initial testing and basic radiography performed for visibility of the disease. Please write me offline if this is an avenue you wish to pursue.
  
  Regards,
  
  Jim Johnston
  
  Executive Director
  
  Reply to this

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