Please use this Blog for inquiries or comments on Treatment Plans for Castlemans Disease (e.g., Radiation, Surgery, and Drug Intervention).
Thank you and enjoy.
Jim Johnston,
Executive Director
International
Castlemans Disease Organization
Santa Fe, NM USA
HTTP://www.castlemans.org
Email: HMConsult@msn.com
#1 by Elizabeth on January 29th, 2010
Hi Jim,
After reading some of your posts I see you were diagnosed with Unicentric CD and that it was in your chest is that correct? Well, I had a CT done for something else and they stumbled upon a left sided anterior mediastinal mass that they were convinced was lymphoma. Once the surgical biopsy was done it proved to be unknown pathology but it did have features of CD. I went on to have a PET scan and full body CT to be sure there were no other masses and there weren’t. They don’t have a 100% diagnosis of CD as they said they would have to take it out to do that but they worry that the area of where the mass is (basically ontop of my heart) that it may be too risky to take out. I ended up having phrenic nerve and left diaphragm damage from the surgery and have to follow up with that issue in a few weeks. It is terrible mostly when I fly or when I walk or excercise too much. Sometimes it can be painful just to sit but laying down is the worst. As far as the treatment of the mass goes, I have to wait 3 months to see if it grows. My Dr. did say that possibly low dose radiation may be a good route to take but will determine that once my three months is up and I get another CT. My question to you is – is this similiar to your experience and did they end up being able to take it out completely and where was yours located or did you end up having to do radiation?
Thank you for your advice!
#2 by Michelle H on December 2nd, 2009
I was diagnosed with Castleman’s Disease unicellular in 2004. My tumor is in my chest and is inoperable. I have been receiving Rituxin usually every 6 months which keeps the tumor size stable and me healthy. My question is, will I have to keep having Rituxin treatments for the rest of my life. I am 38 now and wondering if this will affect my life expectancy.
#3 by Jim on December 15th, 2009
Michelle,
I am sending your concern to one of our specialists. Will forward thier response here online.
JIM
#4 by Jim on December 21st, 2009
Michelle,
I have submitted your request to our physicians. WIll post response here.
JIM
#5 by Jim on December 21st, 2009
Michelle,
RESPONSE FROM DR FRITS VAN RHEE:
He should come and see me. 6-monthly rituximab worries me in terms of keeping tumor the same in size. There is also the risk of transformation to lymphoma over time. He should come and see me to see whether we can shrink his disease and make it operable. Also if has any symptoms then he might benefit from antiIL6 ab therapy
Dr. Frits van Rhee MD PhD MRCP(UK) FRCPath
Professor of Medicine
Director of Clinical Research
Myeloma Institute for Research and Therapy
University of Arkansas for Medical Sciences
4301 West Markham, Mail slot 816
Little Rock AR 72205
cell: 501-8047020
office: 501-5266990 ext 2425
secretary: 501-5266990 ext 2467
fax: 501-5262273
http://www.myeloma.uams.edu
#6 by cakers on August 26th, 2009
my uncle was recently diagnosed with mcd! and then at the same time they told him it had already turned into malignant lymphoma. on top of that, his hepatitis flared up. he hasnt started any therapy or medication that i know of. but it seems no one has given him a prognosis. and b/c this is a rare disease, i’m not finding too much about a prognosis for mcd….would any of you be able to help me out or point me to some more research options? i feel like i’ve exhausted all my resources. i’m a science major and i’ve even been tapping in to professors knowledge and books. thank you
#7 by Jim on September 8th, 2009
Cakers,
Please refer to our ICDO “centers of excellence physicians for specifics on prognosis and treatment. Every medical case of MCCD seems to be different and treatment options may differ a little too. You may begin with Dr VanRhee, Dr Munshi, or Dr Trcot (referenced on the ICDO website).
Regards,
JIM
#8 by Ann on April 23rd, 2009
Jim
Thank you for your prompt response. Her post surgery CT scan is due in June although no blood work was ordered to be done. Should we ask for blood work to be done and if so what should we ask for? We are from Indianapolis area. Depending on results in June we may need to get a second opinion. thanks
#9 by Ann White on April 20th, 2009
Dear Jim
My 23 yr old daughter was diagnosed with UCD after having a kidney stone attack. Found by CT area in abdomen. biopsy done with removal of
nodes in Oct of 2008 to confirm diagnosis. Surgery done in Dec. to remove rest of nodes and also had small intestine resection due to close proximity of CD. These are hyaline vascular. Surgeon said after surgery in Dec. that there are still small ones there that he didn’t remove. recommended CT again in June of this yr. to check them. Just want to make sure we are doing everything we should be by waiting to see if others are enlarging. Were told by surgeon and oncologist that this is Unicentric but is that true with several being in the abdomen area. CT chest was negative. thanks Ann
#10 by mainadmin on April 21st, 2009
Ann,
I am not a physician and cannot provide you with medical advice. That being said, I can tell you that I had Hyaline Vascular Castleman’s Disease (HVCD) and had a mass removed from my chest. My original treating physician at the University of Arkansas for Medical Sciences (UAMS) Little Rock recommended that I have recurring CTs of the neck, chest, abdomen and pelvis to make sure there was no recurrence of the disease. In addition to the annual radiography, I must have ongoing labs to check for irregularities. At the recommendation of my treating physician, I have routine exams yearly (blood work and scans of the neck, chest, abdomen and pelvis). All testing is reviewed by my treating physician in Santa Fe and sent to one of the ICDO “centers of excellence” for review. Your scans seem to be consistent with my medical treatment.
As a follow-up and from an advocacy point of view, I recommend that you obtain copies of all your procedures, labs and other testing. Maintain a copy of your own medical records in the event you need a second opinion or said documents are needed by one of your other physicians.
I hope this was of some assistance. Please advise if I can direct you to a physician at one of our centers of excellence.
Regards,
Jim Johnston
Patient Advocate
ICDO Executive Director
Santa Fe, NM
#11 by Alejandra on March 12th, 2009
Hi i am alejandra from honduras central america, 1 month ago i was diagnosed castlemans desease by cervical USG, because i have limphadenopathy one of them so big, so the oncology service took me a cervical biopsy and they confirm the castleman desease , hyaline vascular variant and VIH negative but i have many bilateral cervical nodules non touchables. i never had symptoms and i dont have now, this desease is not common here so i want to know if the i have to take steroids or what ? really the doctors here dont have alot experience with castleman desease and they said that i just need serologicals and radiologicals controls.
tell me please what should I do about it or what kind of doctor i should see (a oncologist, hematology or what?).
P.D. soorry my english.
#12 by Jim on January 1st, 2009
Kerri,
I will forward to our medical staff for an accurate opinion.
Kind regards,
Jim Johnston
ICDO Executive Director
#13 by Kerri on November 2nd, 2008
Hi,
A question regarding plasmapheresis- removing harmful or overactive antibodies by filtering blood. Have any of the doctors used this process to rid the blood of antibodies, namely Anti-E, Anti-K, Anti-Jka, Anti-Cw in patients with Castleman Disease and in turn hopefully stop the process of autoimmune hemolytic anemia occuring?.
Thank you
Kerri
#14 by Jim on October 20th, 2008
Kerri,
Before I continue, I must caveat this email with the fact than I am not a physician but a Patient Advocate
for those patients of Castlemans Disease. That being said, I will forward your email to our group of
medical physician that treat and manage CD patients everyday with this disorder. I will post responses
as soon as I receive them.
Regards,
Jim Johnston,
Executive Director
#15 by Kerri on October 19th, 2008
Dr Jim & Drs,
I have a question in relation to side effects of anti IL6 therapy. From your vast experience with Castleman Multi centric, is it possible to gain a rash from anti IL6 infusion treatment in addition to high bilirubin levels (126)? Or could it be from an immunosupressant taken at the same time ie-cyclosporin?
Thank you Kerri
#16 by Jim on September 29th, 2008
Deborah,
Please share your results or information ………. If you wish.
Regards,
Jim Johnston,
CD Executive Director
#17 by Katie Young on September 23rd, 2008
Does anyone know if proton beam therapy can be used for castleman’s?
#18 by Deborah on August 28th, 2008
I A
I AM TAKING PART IN A TRIAL STUDY WITH THE DRUG NON-INTERLUKING 6.THE STUDY NEEDS SOME MORE PEOPLE
TO TAKE THE DRUG SO IT CAN BE FDA APPROVED. IHAVE HAD GOOD RESULTS.
MY E MAIL ADDRESS IS altondeverson1@yahoo,com
#19 by Jim on August 13th, 2008
Thank you for the update Tony. I am going to research Myasthenia Gravis and see if the physicians have seen this neurological disorder which is also “autoimmune” with Castlemans Disease.
Regards,
Jim Johnston
CD Executive Director
#20 by Tony Lefeber on August 9th, 2008
HI FYI. I was diagnoised with unicentric Castleman’s disease which was removed.I have recently been diagnoised with Myasthenia gravis and have TypeII Diabeties, diet controlled.
#21 by Jim on July 30th, 2008
Tanya,
I am not a physician and I can only tell you who is treating CD. You have seen very good CD Specialists in the past. My recommendation is to go back to the physician(s) that you have seen and leave a message with that question for the physician. They will be in touch. Please remember that some of the physicians travel and may not be available.
Regards,
Jim Johnston,
Executive Director
#22 by Jim on July 30th, 2008
Kerri,
I have forwarded your kudos to both Dr vanRhee and Dr Tricot. I am sure they will be hitting the blog to see responses as well. Glad that everything is looking better. Please do not hesitate to contact one of the physicians if any future concerns arise.
Regards,
Jim Johnston,
CD Executive Director
#23 by Jim on July 29th, 2008
Chirag,
I have sent this off to staff physicians for review. I should have an answer within 24 hours and post it on the web.
Regards,
Jim Johnston
CD Executive Director
#24 by Chirag on July 21st, 2008
Hi. I have had a seizure on June 6th with no symptoms and after initial tests a lesion was discovered on right side of my brain. My Neurosurgeon does not think its a tumor but an inflammation or infection. I took a second opinion on the same and the other neurosurgeon also agreed with the above analysis. However, after 10 days of having a seizure I developed lymphnodes on my neck. I had biopsy done and was diagnosed with Castleman’s disease. Can CD occur in brain? My doctor’s think that the lesion in brain could be a CD. but they are not sure. I am seeing Dr. Munshi in Boston this week to see if neck CD is related to what I have in Brain. Also, to get his advice on the treatment of CD. My other question is can treatment of neck CD help the condition in brain? I really would hate to go for a brain biopsy.
Please advise. Your help is greatly appreciated.
#25 by tanya on July 18th, 2008
had a quest.. i have a lymph on left side of neck that was a small as a pea now in three months grew to a big size like three time bigger gum ball big one.. size i also a year ago had one in my anterior med area 2.0 x 2.8 cemt.. after a good year back and fourth to drs. i got so aggravated i never was told or on my own had a check up on lymphs and anyother biops after my first two about now 1 year and ahalf ago.. should i seek medical treatment now my lymphs are growing alot more and i dont live one day with some pain headaches have been really bad im breaking out more severe and now im bald on my head do to these weird lumps almost like pimples but hurt and itch and burn and numb all at once …
#26 by Kerri on July 17th, 2008
Dear Dr van Rhee and Dr Tricot,
Thank you for your invaluable advice regarding spleenectomy, he has lymph nodes not only in the spleen but more so in his chest and some in the pelvic region. I will look into anti-Il 6 treatment in an attempt to hopefully help anemia and reduce lymph nodes. Luckily, he is currently stable.
A hearty thank you to you both for the time you put in to answer my requests, the comfort it brings is invaluable.
Jim – a big thank you to you also!
Kind regards Kerri
#27 by Jim on July 11th, 2008
KERI, RESPONSE FROM DR TRICOT (UUMS)
It usually is not effective in correcting the anemia. If the spleen is the major source of CD disease with very little CD elsewhere and he has major symptoms related to CD, splenectomy may relieve the symptoms and the anemia may improve. In all other cases, splenectomy will not help.. < ?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
#28 by Jim on July 11th, 2008
KERI, RESPONSE FROM DR VANRHEE (UAMS):
MAIN site of disease which would be not useful or if he would have treatment refractory antibodies against red cells or platelets. The antibodies attach to the cells at get gobbled up by the spleen.< ?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
Splenectomy is only useful if this is the < ?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />
How old is your dad ? He might benefit from the anti-IL6 antibody.
Dr. Frits van Rhee MD PhD MRCP(UK) FRCPath
West Markham
Mail slot 816
Little Rock AR
Professor of Medicine
Director of Clinical Research
Myeloma Institute for Research and Therapy
4301
ostalCode>cell: 501-8047020
office: 501-5266990 ext 2425
secretary: 501-5266990 ext 2467
fax: 501-5262273
#29 by Jim on July 10th, 2008
Kerri,
I wil pass to our medical board and have a physician respond to your inquiry directly. I should see a response w/i 24 hours.
Regards,
Jim Johnston,
Executive Director
#30 by Kerri on June 20th, 2008
Hi Jim & Drs,
I have a question regarding spleenectomy.
My father has been on treatments for MCD including methyl prendisone, Octagam, Mabthera(Rituximab)(4 x 800mg)recently , over a few months now. He still experiences drops in his hameoglobin level then recovers for a few weeks after transfusion and drops slightly again. He recently suffered angina and (mild heart attack) due to low blood levels which are currently up again 88.
With your experience do you know if having a spleenectomy is an affective treatment for MCD. My father is a mature age with previous heart bypass history, and if spleenectomy is effective in reducing lymph nodes (chest, groin area)?.
Thanks Kerri
#31 by Jim on May 12th, 2008
Great news, Corey. Please keep us informed of your progress and keep your follow-ups with Dr Vanrehee.
Regards,
JIM
#32 by Corey on May 12th, 2008
Jim,
I just got back from Little Rock and it seemed that the 4 doses of Rituxan worked. All of my nodes are decreased in size and there is no uptake according to the PET scan. The Rituxan treatment were fairly easy for me. The next course of action is to wait until the fall and get every thing checked again. Dr. VanRhee seems fairly confident that with my spleen removed that I may have a good chance at all the nodes will continue to shrink.
Thanks.
Corey.
#33 by Jim on April 9th, 2008
Thank you for the update Corey. I will post for the benefit of the group. Good luck with your treatment regime.
Regards,
Jim Johnston
ICDO Executive Director
#34 by Corey on April 8th, 2008
Hi,
Just an update, In Nov. 2007 I had a spleenectomy in Little Rock in hope of taking out the biggest part of the disease. I think this helped, because I feel better than I have in several years. I went back to Little Rock recently, and we dicovered through PET and CT that my Lymph nodes were slightly growing. Started yesterday on Rituxan for 4 weeks. At this point, I feel no major side effects from the first treatment, some tiredness and a little joint pain, but that could be from sitting around all day. I will report on the next treatment. I hope someone finds this helpful.
Thanks again Jim.
Corey Schoenrock
#35 by Celeste DiDona on March 14th, 2008
Dear Laura,
We are so upset to hear of Phil’s condition. My wife and I were good friends of Phil’s from H.S. Please relay to him our email address. We would love to get in touch. Love, Steve (steve069@comcast.net and calise2@comcast.net)
#36 by Jim on January 2nd, 2008
I will forward this to our panel of experts and see if they have any comments.
Regards and
Happy New Year,
JIM
ICDO ED
#37 by Jim on December 29th, 2007
Thank you Anne for the kind words. I know that there are many patients that are sicker than I am and the one or two persons I am able to touch and provide advocacy for makes my day. This is for the patients and families and friends of the patients. We cannot lose track of the objective of this inter net site – patient advocacy and referrals to centers of excellence who are familiar with this rare disease.
Again, thank you for the kind words and my wishes to you and yours for a prosperous, happy and healthy New Year.
Regards,
Jim Johnston
ICDO Executive Director
#38 by Deborah on December 26th, 2007
JIM, I HAD SURGERY TO REPAIR VOCAL CHORD.I AM ASKING ABOUT THE TRIAL I AM IN AT UNC CHAPEL HILL.DO YOUR ADVISORS THINK THERE’S A BETTER CHOICE?
#39 by Jim on December 24th, 2007
Deborah,
Resection of CD tumors have been known to be risky depending on tier location. Mine was next to the phrenic nerve and has limited the use of my left diagram. Although I am not a physician, I cannot provide medical advice but guide you to the proper physician. We have fine physicians on staff that may recommend a referral to a specialist that deals with the vocal cords. Please try Dr Munshi or Dr vanRhee. There contact information is on the website under “contact us”.
Merry Christmas
Jim Johnston
Executive Director
Santa Fe NM USA
#40 by Anne Hotta on December 21st, 2007
Dear Jim
At this time of the year, many thanks for your wonderful support and the knowledge and encouragement your blog site presents to us all. There is no better example of the essence of Christmas for me than the self-less work you and the doctors in the USA do. You have been a life line again in 2007.
It is grealy appreciated,
Anne Hotta
#41 by Deborah on December 20th, 2007
my last pet scan showed a bit of uptake whitch could be a result of surgery to repair my l. vocal cord.Please reply, and give your dr.’s affiliated with your site’s opinion @ CNTO TRIAL.
#42 by Jim on December 13th, 2007
Laura,
RESPONSE FROM DR LUBOSH SOKOL
Best,
Lubosh Sokol, MD
Tampa, FL
#43 by Jim on December 13th, 2007
Laura,
RESPONSE FROM DR NIKHIL MUNSHI
His current lymph node enlargement is not behaving as classic hyaline vascular
CD. He must get a lymph node biopsy from any of the chest or pelvic lymph nodes
even if this requires surgery. The lymph node should be tested for heavy chain
rearrangement and for clonality. The lymphoma doctor would know what to do .
Nikhil Munshi, M.D.
Adult Oncology
Dana Farber Medical School
44 Binney St., M557
Boston, MA 02115
(617) 632-5607
#44 by Jim on December 13th, 2007
Laura,
RESPONSE FROM DR TRICOT
If the lymph nodes are too small to biopsy, a repeat PET/CT scan should be done 3 months after the last one to see if size and activity of the lymph nodes have changed. Unless a biopsy is done, there is no way to know whether this is lymphoma or CD.
Guido Tricot, MD, PhD.
University of Utah School of Medicine
Huntsman Cancer Hospital
Program Director
Utah Blood/Marrow Transplant and Myeloma Program
30 North 1900 East, Room 5C402
Salt Lake City, UT 84132
Main line: 801-585-3229
#45 by Jim on December 13th, 2007
Laura,
I have forwarded your concerns to our medical staff and will see what course they recommend you take. There is always an option of a telephone consult with one of our other specialists in Boston, Tampa, Seattle, or Rochester, MN if you wish a second opinion.
Regards,
Jim Johnston
ICDO Executive Director
Santa Fe NM USA
#46 by Laura Kukucka on December 5th, 2007
Hi Jim,
I’ve been reading a lot on this site today & am just beginning to dig through some of the info.
My husband (34) was dx with hyaline-vascular CD, localized pelvic tumor, in 2003. The tumor was surgically resected, but I don’t believe clear margins were obtained – the tumor returned less than a year later.
My husband (Phil Kukucka) saw Dr. VanRhee in 2004 and again in 2005, and underwent Rituxan, without any change to the tumor. Since then, we have taken the watch & wait approach.
Now, within the past 6 months, he’s had some enlarged lymph nodes in his chest which are demonstrating FDG uptake in the PET. Last week, he had his latest PET which showed new FDG uptake in pelvic lymph nodes.
He has a Lymphoma specialist here in Columbus, OH who is a great doctor overall, but has very little CD experience. She seems to think the lymph node activity may be follicular lymphoma rather than CD, but she’s not sure if any of the lymph nodes are enlarged enough for a biopsy. We’re at a loss as to our next steps. Any suggestions?
Thanks so much!
#47 by Jim on October 29th, 2007
Terry,
I have had no dialogue with any Specialists in your area that are familiar with CD. My recommendation is to travel to either Little Rock, AR., Rochester, MN., or Cleveland, OH. where we do CD Specialists. Those are the nearest facilities to you.
Regards,
JIM
#48 by Terry Welsh-Owara on October 26th, 2007
My sister has just been Dx with CD. We live in the Kansas City area. Are there any doctors in this area who specialize or have had success treating CD?
#49 by Jim on August 31st, 2007
Corey,
Thank you for the positive feedback. I will be sure to pass along accolades to Dr vanRhee and his Medical Director.
Regards,
Jim Johnston
ICDO Executive Director
Santa Fe, NM
#50 by Corey Schoenrock on August 29th, 2007
Jim,
I just wanted to report a few things about my treatment plan, in case anyone else was looking for info on the site. I am a 32 year old male. I was diagnosed with multicentric cd in March. I have an enlarged spleen that we were worried about for some time. When we finally got the diagnosis, I didn’t know what to do. My local oncologist and a doctor at UNO med center, wanted to “wait and see”. This didn’t sit well with my family. So at the suggestion of Dr. VanRhee, we took the trip to UAMS. What a great place. We could not believe the level of organization. These people are true saviors. My experience could not have been better. We decided to start treatment of Thalidomide, Dex, and some antibiotics. In order to try and shrink my spleen before removal in Nov.
I have been feeling better than when i first started treatment. So I think my body is adjusting. I guess my main reason for posting is to tell anyone who is diagnosed and is thinking of going to UAMS.
GO. You will not be disappointed. These people are the best.
Thanks for this website Jim.
Corey Schoenrock.
#51 by Brian Leonard on August 18th, 2007
I was diagnosed with cd in 2002, went through 12 treatments of retuxan, around thr 8th treatment my nerve in my left leg was in pain, lost the us of my leg in the next year then lost the use of my right leg a year later, I am in ex stream pain. I fake 120MG of oxycodone, still in pain.
any comments.
Brian Leonard
#52 by Anonymous on August 11th, 2007
Has anybody had intense tumor pain after rituxan therapy. In some warped way I suppose that it is a good thing?
#53 by Jim on June 8th, 2007
Aidee,
I am glad you were able to connect with Dr Munshi’s office. I did cc him on the email and he did notify me he was out of the country but would be back next week. I would ask his Secretary if you could make an appointment in advance that way you get in to see him right away.
With regard to other websites. I know of none – other than performing a search with the different medical facilities. Sometimes there medical terminology is hard to understand so I have converted their script into layman terms for the sake of the ICDO website.
As to terminal, everything we catch, inherited, or?is not detected by our immune system is susceptible to be a detriment to our health. Early detection and a treatment plan prescribed?by a seasoned CD Specialist like Dr. Munshi with periodic follow-ups reduce the risk of a chronic illness. This is not to say that you may have “other symptoms” which contribute to CD but Dr. Munshi will test for that as well.
Please let me know if I may be of further assistance and give Dr Munshi my best.
Regards,
Jim Johnston
ICDO Executive Director
#54 by Aidee on June 7th, 2007
Thank you so much Mr. Jim Johnson for your assistance. I called the Dana Farber Cancer Institute and was informed by Dr. Munshi secretary that he is out of the country and will be back next week. Thank you very much for everything. Is there any other website you could tell me of that could provide me with more information on Castleman’s Disease? Is these disease fatal? I am very confused and scared!!
#55 by Jim on June 7th, 2007
Aldee,
Please review this entire site and copy pages that you believe either mimic your symptoms. Everything we have is available online. As far as a physician is concerned. There are Six centers of excellence for Castlemans Disease in the U.S. I would recommend one of these facilities and the associated physician who works with Castlemans on a routine basis. This way you are getting the best of the best and the most up-to-date information available as well as the appropriate treatment plan. Physicians are located in Seattle, WA, Little Rock, AR, ?Rochester, MN, Cleveland, OH, Boston, MA and Tampa, FL. I would recommend the one closest to you which is Dana Farber Cancer Institute, Boston, MA. The physicians name is Nikhil Munshi and he may be reached at (617) 632-5607.
Please advise if further clarification or information is required.
Regards,
Jim Johnston
ICDO Executive Director
#56 by Aidee on June 6th, 2007
I am 27yr old female. I was currently diagnosed with multicentric CD. I am interested in getting morw information on these disease and to seek a medical doctor in the New York City area specializing in multicentric Castleman’s Disease to further help with my treatment plan. Could you please assist me?
#57 by Jim on April 16th, 2007
Tanya,
Please re-write the message. It is too fragmented to understand and I can not intelligently figure what you are asking.
Regards,
Jim Johnston
CD Executive Director
#58 by tanya on April 15th, 2007
hi jim , i had a had just look over my childrens hop.. record s when i was born i had three days home hot staph eraous ,, and i look up on it its stephoccico then i seen that i could possible carry it . the doc back then didnt know much. also they stated my other biopsy indicated mass on neck l and r.. anyinfo i appreciat it thanks tanya
#59 by Jim on April 11th, 2007
Carole,
I just received a message from our Medical Director and he has stated that your concern has been turned over to their medical insurance department for review and an explanation.? I?will report back as soon as there is?information from the pharmaceutical.
Regards,
Jim Johnston,
CD Executive Director
#60 by Jim on April 10th, 2007
So noted.
Regards,
Jim Johnston
CD Executive Director
#61 by Jim on April 10th, 2007
Carole,
Our pro tempore Medical Director is from Celgene. Let me email Dr Zeldis and see if he has data that would assist you. I too will check “clinical trials” to see if there are any links overseas.
Regards,
Jim Johnston
CD Executive DIrector
#62 by Carole on April 9th, 2007
Oops, sorry, I put the wrong drug name for Revlimide, it is lenalidomide. Please change the reference to avoid any confusion.
Thanks,
Carole
#63 by Carole on April 9th, 2007
I am currently having insurance coverage problems for drug treatment with Revlimid. Insurance previously covered Thalidomide, but there was no significant change in test results after 3 months, so Dr. Van Rhee (who is consulting with my local oncologist) has suggested trying Revlimid.
My insurance company (part of the blue cross/blue shield system) requested articles or data linking successful treatment of Castleman’s using Revlimid (bortezomib), but neither my oncologist or Dr. Van Rhee could find any clinical data.
My local doctor has also contacted Celgene, the drug company that manufactures Revlimid, but they did not have any information, either. I have registered with Celgene’s drug assistance program, but do not know if they will help.
Just wondering if you had any other ideas or resources for information. This is turning into a very lengthy process and very stressful.
Thank you!
Carole
#64 by Jim on March 19th, 2007
Francis,
Here is the information requested on Dr Dispenzieri:
Angela Dispenzieri, M.D.
Associate Professor of Medicine
Mayo Clinic
200 First Street SW
Rochester, MN 55905
Phone: 507 284-2479
Fax 507 266-4972
dispenzieri.angela@mayo.edu
Regards,
Jim Johnston,
CD Executive Director
#65 by Anonymous on March 18th, 2007
To Jim Thanks for your reply. I would really appreciate the email address of the specialist you mentioned. Hope I am sending this to the correct address.
Many thanks
regards Francis
#66 by Jim on March 17th, 2007
Alton,
We have patients that travel from Florida to the University of Arkansas for Medical Sciences (UAMS), Little Rock for treatment. We do have CD Physicians in Boston, Rochester, MN, Cleveland, and Seattle but I believe Little Rock would be the closest.
Dr Frits Van Rhee’s?contact information is as follows:
Frits van Rhee, MD, PhD, FRCPath, MRCP(UK)
Director of Immunotherapy and Allogeneic Transplantation,
Associate Professor of Medicine,
Myeloma Institute for Research and Therapy,
University of Arkansas for Medical Sciences,
4301 West Markham,
Room 416, mail slot 776,
Little Rock, AR 72205,?
Fax: 501-686-6442,
Secretary: 501-2961502 ext 1414,
Clinic: 501-2961502 ext. 1379,
Lab. 501-2961502 ext.1450,
vanrheefrits@uams.edu
Please advise if further direction is necessary.
Regards,
Jim Johnston
CD Executive Director
#67 by Alton on March 16th, 2007
who would be the closest Drs that have experience with cd to the aiken sc/augusta georgia area- my wife has just been diagnosed with Castlemans
#68 by Jim on March 13th, 2007
Francis,
Good luck with your procedure. In the event you would like to have a second opinion on anything related to your disease, I know of a great Specialist state-side that treats Castlemans with POEMS. Send me an email and I will send you her email address.
Regards,
Jim Johnston,
CD Executive Director
#69 by Jim on March 13th, 2007
Ray,
Dr. Munshi is now practicing at Dana Farber Harvard Medical School (Adult Oncology) in Boston, MA. He can be reached at the following numbers:
Dr. Nikhil Munshi, MD, PhD
Associate Director of the Myeloma Center
Dana Farber Harvard Medical School
44 Binney Street,?? M557
Boston? MA? 02115
(617) 632-5607
(617) 632-4218 Sec
(617) 632-2140 Fax
Nikhil_Munshi@dfci.harvard.edu
Hope this helps.
Regards,
Jim Johnston,
Executive Director
#70 by Francis Farmer on March 9th, 2007
I’m writing in to let you know I’m about to have a autologous stem cell transplant.I’m booked in for the 20th March.Just to remind you all I have Poems/MCD,will be in hospital for awhile but will let you know how I am doing as soon as I am able.I think I am the first Poems/MCD patient in N.Z. to have this done.
Again it is good to have this website to share our experiences of this rare disease.
#71 by Ray on March 9th, 2007
I have a 21 year old son who was diagnosed with unicentric casteleman’s in February 2000 (tumor removed). Unfortinately he was diagnosed with paraneoplastic pemphigus as short time later and received a double lung tranplant in Novemeber 2000 (we are told that he is the first living survivor of the combination of diseases). He has experienced minor complications from the castlemen’s since (although many ongoing issues relative to the transplant) until recently, when he was diagnosed with vasculitis derived from casteleman’s.
As part of our journey to find the cause of the issues in 2000, we visited University of Arkansas Medical Center and saw Dr. Munchie (sp?). I can no longer find a reference to him and desire to find an authority on castelmans’ that may have some answers regarding the vasculitis. We live in Chicago, IL. Any suggestions are welcome.
#72 by Jim on February 23rd, 2007
Tiffany,
None to my knowledge. We do have CD representation in Seattle, Arkansas, or Minnesota. Please advise if you need specifics on any of these locales.
Regards,
JIM
#73 by Tiffiany on February 23rd, 2007
Are there any doctors in Colorado that treat CD or have experience in this disease? My pathology report came back that I have similar changes seen in CD. I am on meds. for a month and if my lymph nodes don’t go down I will go to an oncologist, but want to go to an experience one.
Thanks
#74 by Carol on February 22nd, 2007
Thank you so very much. Carol
#75 by Jim on February 22nd, 2007
Carol,
I will give you a list of physicians that are either represented on the Castlemans Disease Board or are affiliates and were knowledgeable with Castlemans Disease. Please advise if further assistance is needed.
Guido Tricot, MD, Ph.D
Director of MTRC (Myeloma Transplant Research Center)
University of Arkansas for Medical Sciences (UAMS)
Arkansas Cancer Research Center
Little Rock, AR 72205
(877) 635-7240
TricotGuidoJ@uams.edu
Frits van Rhee, MD, PhD, FRCPath, MRCP(UK)
Director of Immunotherapy and Allogeneic Transplantation,
Associate Professor of Medicine
Myeloma Institute for Research and Therapy
University of Arkansas for Medical Sciences
4301 West Markham
Room 416, mail slot 776
Little Rock, AR 72205
Cell: 501-8047020
Fax: 501-686-6442
Secretary: 501-2961502 ext 1414
Clinic: 501-2961502 ext. 1379
Lab. 501-2961502 ext.1450
vanrheefrits@uams.edu
Corey Casper, M.D., M.P.H.
The Virology Research Clinic
Program in Infectious Disease, Fred Hutchinson Cancer Research Center
Department of Medicine, Division of Infectious Disease, University of Washington
600 Broadway, Suite 400
Seattle, Washington 98122
Office: 206/720-4340, Fax: 206/720-4371
206 731-5177? madison clinic
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
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
Dr. Nikhil Munshi, MD, PhD
Associate Director of the Myloma Center
Dana Farber Harvard Medical School
44 Binney Street, M557
Boston MA 02115
(617) 632-5607
(617) 632-2140 Fax
Nikhil_Munshi@dfci.harvard.edu
Regards,
JIM,?CD
Executive Director
#76 by Carol on February 21st, 2007
Thank you for your help. He has plasma cell type Castleman’s. He has an oncologist who has been talking with people @ the University of Alabama. Is there anyone else we can ask the docter to talk to? Thank you for your help.
#77 by Jim on February 19th, 2007
Carol,
There are physicians in Florida but I have not dealt with any of them. The patents I know of in the Florida area end up seeing a physician in Little Rock. But before you decide on a physician, you need to know what variant of the disease your brother-in-law has. If it is Plasma Cell, our specialists are on the west coast (in Seattle). This isn’t to say that you can commute or have your attending in Atlanta correspond with Pleasma Cell Clinical Director in Seattle.
Find out the variant first (e.g. Unicentric, Multicentric, or Plasma Cell). This directs not only the physician but the treatment plan and different protocols for treating the specific variant.
Please advise and I can direct you to the appropriate physician. If you go to the homepage?for the Castlemans Disease website, a listing of all the physicians and their locality (with numbers) are documented there.
Please advise if I may be of further assistance.
Regards,
Jim Johnston, CD
Executive Director
#78 by Carol on February 18th, 2007
My brother-in-law was recently diagnosised with castlemans. He is in the Atlanta area. can you recommend Doctors in that area.Thank you
#79 by Jim on November 10th, 2006
This is what this dialogue board is all about …. referrals to our medical staff. I will forward your email to Dr vanRhee but he needs to contact you. Please send me an email with your number and a time to reach you and I will fwd this too. If vanRhee cannot assist, we have others that we work with. Please advise.
Regards,
Jim
#80 by Jennifer Kifferly on November 8th, 2006
Thank you Jim I am on the hunt for a doctor again. I just want to find a doctor who is willing to work closely with another doctor if need be. I know not a lot of doctors know much about this disease and that is today as long as they are willing to learn and ask for help. Do you know if Dr. VanRhee is still willing to work with other doctors on treatment plans? I need to know that for sure before I start looking so I can inform whatever doctor I choose about him and his willingness to help. I appreciate all you do,I still feel guilty that I only come here when I’m having issues I feel I should be more regular. This is a great site and I should be more supportive.
#81 by Jim on November 7th, 2006
Jennifer,
I believe Dr van Rhee to be one of the best CD Specialist based on my own personal experience and others here on the web. The reason I refer patients to one of a half dozen CD Specialists in the nation is due to the fact that not too many MD’s are familiar with CD other than what they heard while in med school.
If you are not satisfied with a decision or opinion, seek a second opinion or change physicians. Make sure that the physician you choose is familiar with CD (in treatment not text book) and you are comfortable with both the physician and his Tx plans.
Regards,
Jim Johnston,
CD Executive Director
#82 by Jennifer Kifferly on November 5th, 2006
Hi Jim,
I am located in Georgia and treated out of Brunswick Georgia.I spoke to Dr.VanRhee about three years ago when he gave me a recommended treatment plan. I thought I would just see how things worked. Well like I said anything less than 10mg of prednisone daily makes my symptons return and my dr wants to take me off of it. I told him about Dr. VanRhee and his recommended treatment two years ago and could he call him. My doctor said he would not inniate a call like that,but I know it has to be the treating physcian to make the call and not the one we are seeking the advise from. It really doesn’t do anybody any good to tell me the suggested treatment plan because I can’t give myself the prescription,nor do I know what the drugs are. I would sure appreciate any advise you can provide. Thanks Jennifer Kifferly
#83 by Jim on October 29th, 2006
Melissa,
I will check with both physicians in that states and overseas to see if I? can find any information for you. Will Advise.
Regards,
Jim Johnston,
CD Executive Director
Santa Fe, NM
#84 by Melissa on October 29th, 2006
I have questions regarding the use of “all trans retinoic acid” in the treatment of castleman’s disease.
I have found blurbs here and there on the net about successful treatment and the dissapearence / remission of the disease after treatments.
Do you have any information on this drug, past trials, results or possible future plans regarding this drug involving Castleman’s. Can you point to studies I can read on the net or persons I may contact who may have information?
My husband was diagnosed early this year at 32,he has had one round of rituxmb and I am searching for answers. Thank you kindly.
Melissa
#85 by Jim on October 28th, 2006
I will forward for a medica l opinion but where are you located and wherewere you treated?
Regards,
Jim Johnston, Executive Director
#86 by Jennifer Kifferly on October 27th, 2006
I was originally dx in 1994 with MCD, I was treated a short time with prednisone and I went into an eight year remission. I have had active symptoms since 2003 we can’t seem to get me off medications.One of my main symptoms is ascites on my abdomen and weight loss. I loose weight but my belly gets big. I also am tired all the time. The thing that has always worked was prednisone. Now I currently take 10 mg of prednisone every other day and rutexin once a month. I have a golf ball sized mass in my pelvic area of lymph nodes that I need to have removed. Anyway I was on maintences doses for about 18 months (10mg of prednisone daily and rutexin once a month) since my oncologist has changed my prednisone to every other day I have had some symptoms return to include weight loss,enlarged abdomen,ascites,enlarged spleen and tiredness. It appears to mer to remain symptom free I have to be on prednisone however my oncologist wants to remove me off of it,however he has no other treatment ideas so I don’t know what he plans on doing. I am very concerned as to my knowledge he has no ideas how to treat me he got this plan from a different oncologist. I afraid he would put me on chemo next and I know their are other options but I don’t what they are.I would be open to suggestions. Thanks Jennifer
#87 by Jim Johnston, Executive Director on October 19th, 2006
REPLY from Dr Tricot (UAMS, Little Rock, AR)
The role of radiation in CD is minimal. It is sometimes used in unicentric CD where the disease is in a place that can not be resected surgically or in multicentric disease where one location is big and causes problems because of its size.
#88 by Jim Johnston, Executive Director on October 18th, 2006
Response from Frits van rhee MD PhD, UAMS, Little Rock AR
I would prefer not to irradiate a patient for a benign disorder. There are usually other options which are safer and without the side effects of irradiation.
#89 by Jim Johnston, Executive Director on October 17th, 2006
Awad,
Although I am not a clinician, sometimes it is necessary to reduce the size of tumors with radiation because of the size. One caveat is that the location of the tumor may inhibit the use if radiation. Therefore, conventional drug/steroid therapy is necessary.
You are correct with the comment of reducing the size of the tumor so it may be surgically resected. Surgical resection is the treatment choice if possible. There is a lesser recurrence rate of CD if tumors are resected.
Thank you for your comment and interest in this site.
Regards,
JIM
#90 by Awad Al Harbi on October 16th, 2006
I wonder what’s the role of radiotherapy in management protocol of CD? As far as I know, CD is a benign growth so for what they use radiation? is it to prevent transformation of the tumor into malignancy or is it to make the tumor smaller so it can be easily removed by surgery?
Thanks in advance!