Castleman’s Blog

Tania,

My advice is to ask Dr VanRhee exactly what his prognosis of your 18 y.o. patient is. If you still do not get an answer or are not comfortable, please advise and you can email another physician that specializes in MCCD and PCCD. He is Dr Corey Casper out of Seattle Fred Hutchinson.

Regards,

Jim Johnston
ICDO Executive Director

Tania,
You are absolutely doing the right thing by going to little rock. Dr. Van Rhee is a supreme Dr. and will know doubt set you on the right course. If you need any advise on anything in little rock you can e-mail me anytime, I would be glad to help. I have been seeing Dr. Van Rhee for a while and have been to LR several times.
good luck.
Corey.

TANIA – REPLY FROM Dr TRICOT (UU)

Tania,

Castlemans Disease dx and tx has made some progress since my diagnosis some 20+ years ago. I recommend that you seek an opinion from a CD Specialist that is familiar with diagnosis (dx) and treatment (tx) of the disease. I am going to forward your email message to a specialist and have them contact you directly.  BTW – is your son able to travel?

Regards,

Jim Johnston,
ICDO Executive Director

I had my Castleman’s tumor removed in February of 2007 at the UAMS facility under the direction of Dr. Van Rhee. They were able to remove the entire tumor located in my chest cavity. A CT scan done this week now shows 2 small tumors in my chest cavity. The Doctors here in Utah are recommending that we just keep an eye on them and have another CT scan done in May. Is this the procedure that you would follow.
thank you for taking the time to respond.
Candis Bailey

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

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.

< ?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />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

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

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< ?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

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

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.

Laurie,

Will get a reading and get back to you as soon as I have word back.

Regards,

JIM JOHNSTON
CD Executive Director

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

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

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!

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.

Jim Johnston,
ICDO Executive Director

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?

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

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

hi i dont know anymore since dx in nov of 2006 an now jen brown along with munshi who didnt want me to make an appt with him and tranfered all my paper work to jen brown who i saw on june 19 of 2007 walks in the room 140 my appt 1pm late and smirks and said why didnt dr munshi see you . i was so pissed after dealing with run around i have paper work of my own testing that said follicular pigment-epithloid and interfollicular positive b and t when this first started i had dr nath from stoneham part of partners who did my first biop and made sure it was sent out twice for a correct dx. castleman d findings. then brought all of this paper work to nickel munshi in november he was so so sure it was hylinvasur type nothing to worry then i developed more tumors including the two getting bigger as i type. so testing seeing drs from reumo. to gyns to mri to ct to xrays to more more blood now july 2007 he said ok now lets do 2ced biop five ok five removed and mind you he never called nor did the throactic surg. i waited about a week and half then called they told me dr nickle munshi said not castlemans but hes refering me to lymphoma team now from oh my god rare disease am i gonna die slow to cancer so now on june 19 i saw jen brown who walks in late chuckles at me and said well its not lymphoma and said as a cancer dr sent me back to work know i said i was ill still pain 13 being the worst and 5 on methodon and percocet and dr michna eward pain clinic precribes me i never ask for any of drugs i just wanted my long term hurt aggravation to go aways pain please now jen brown is saying oh blood test are find i dont know why dr munshi couldnt of told her 2 months ago i told her he made it seem or christine his sec. like get to a cancer dr quick its lymphoma. im now so meantally hurt upset aggravated and in pain still with no dianose now if someone tells you dr munshi is great maybe but i cant be the only lesbian white that had a bad exerperience with him comunicating with me and treating me like a person not a dog. in mean terms persay, i dont know what his issue was i care about my health and me and still who knows i couldd be slowly dying i stay up everynite wondeirng why did they just leave me with no diag. after this long. help help me put this to rest . and the people who didnt treat me like a person can be delt with and punished for there lies in my documentation with saying things i never would state and never curing or at least trying to . i saw dr munshi only becasue he let me twice in almost 2 years . i just want peace of mind and those who treated me like a nobody punshed for there words i dont know but this will get taken care of im hurt mad confused upset. and im not a lier drugie or drink liqure not at all . just wanted to make sure everyone at dana and other pt know sometimes you get treated by race or just by the way you look.

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

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

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

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.

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!!!

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..

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 .

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