Castleman’s Blog

I was diagnosed with Castlemans 3 years ago. My mother died from Wegners Disease. Both are immune disorders. Are these related at all?Does this run in families and is it something my children should watch out for?

JT :I am a 29 male, married, two kids, and about about 11 years ago I noticed lumps/bumps in chest area- Spoke with Dr. and he said nothing to be concerned about. Since then have many more. Just from what can be felt, now have a 5 unit cluster in left breast/chest, one in left upper thigh, one center of chest on top of breast bone, one left side or lower armpit, one right side lower armpit, cluster on right side lower ribcage area, one in right side waist line. Other than the ones in left chest/breast area, most feel that not far under skin and can be seen visably. Sizes range from dime to Quarter size in diameter and equal in depth. From time to time they feel inflamed and slightly sore but not bad. The ones I lay or sleep on hurt when I wake up just from laying on them. Slow growing but looking back I notice an additional one each year and then they all slowly grow. Also looking back, when I first noticed back in 1997/98 my vision changed, my energy level dropped, my weight increased, was diagnosed with depression but never felt depressed just tired. Thought I was just getting older and maybe thats all it is. Breast size increased, noticeable by wife and kids but my weight and body size was same. Wanting to know your thoughts because I feel like I can live with these symptoms– my concerns are that maybe future health problems could arrise and I would rather address a small issue than a large one. And if I need to see someone, I would appreciate a reference in TN as my local Dr.’s just don’t know about this. Thanks!

Forgot to mention allergy to beef and pork at the same time 1997/1998 I know related to antibodies?

Hello,

My brother was diagnosed as CD patient. We realy no nothing about this disease. this site is probably the only address for information for us. Living in Israel, we tried to contact an expert doctor for second opinion and escorting. Can you recommend one working in Israel? Many Thanks

Hi!
I`m glad I found this page and hope to get some answers…
After four years of being sick I finally got a diagnosis in january 09: castleman, hyaline vascular
Here in Germany I`m not sure about any experts on CD and noone is sure about unicentric or multicentric type in my case.
I suffer from chronical fatigue, weakness, nausea, headache, overwhelming sweating, sometimes nightsweat etc
splenomagaly, mild hepatomegaly, CRP: 90, iron anemia, il 6: 28, high SAA and b-lymphocytes,
CT showed one mass axillary (biopsie from 2006 didn`t show cm) and one bigger mass in the mediastinum ( about 7 cm). after resection of the tumor dec 08 and path. result showing Castleman: CRP<1, il6<2, SAA<20 – except of microcytic anemia which is improving slower, the bloodstatus is at an healthy level now. But PET scan shows new masses with increased up-take, both sides axillary and both sides inguinal. My condition hasn`t improved that much yet which might be dued to the long term of the disease… My oncologist just wants to wait and, no biopsies of the new masses.
Are there any cases known of people suffering from these symptoms but having the unicentric one?
Trust the bloodstatus and be sure about uc or keep on testing about mc dued to the latest PET-result?
Sent an e-mail to B. Barlogie, thought he speaks german because he studied in Heidelberg, but I didn´t get any replay till now.

Hope to find some help here,

best regards Jani

Helloo all,

Thanks for responding. Curiously after a second opinion my Mayo in Rochester my father has had his diagnosis revised to Hodgkins disease. Is this unusual? I would think you would see a lot of reversals the other way. It makes me nervous that Univ. of Iowa says Castlemans and Mayo says Hodgkins.

Hi I am a 44 yr old male in Perth Australia, just been Dx with Castlemans disease I had my L/adrenal removed 2yrs ago ,a vascular tumor with no suggestion of CD,i have had a lymph node removed from the same area near my stomach early Dec 08 and was then Dx with CD,my doctor has referred me on to a hematologist but I do not see them until late March 08,should I be making enquirers to be seen earlier? I feel lost and don’t think anybody is taking this seriously

Tanya,

The physicians there at Harvard are some of the best in the country. Please, if you are not satisfied with a medical opinion, seek another opinion from a specialist  who is also familiar with Castlemans Disease.

Regards,

Jim Johnston,
ICDO Executive Director

Kerri,

The physicians name is Norihiro Nishimoto, M.D., Ph.D., professor, Laboratory of Immune Regulation, Graduate School of Frontier Biosciences, Osaka, Japan. It has been a couple of years since I have spoke to Dr Nishimoto but you can try and email him at (norihiro@fbs.osaka-u.ac.jp). Please advise if you need additional assistance or another contact.

Regards,

Jim Johnston,
ICDO Executive Director

i was diag. 2 years ago by dana farber with cd and was told in the end of the hole thing that there is no treatment even know i was still growing tumors and had ones to be watched now its 2 maybe longer is and should i be doing more then just sitting back

If you are a Christian believer, I suggest you go attend a ‘Revival Fellowship’ Group anywhere in your country or nearest and follow their directive to Repent, Baptise and Receive the Holy Ghost and you will be set free and healed, please visit this website, http://www.revival.org.co

Sorry…it was hard to tell if my original message was received.

Dear Jim,

I was reading in your blog of a centre for excellence in Japan, Do you have the name of a doctor I can contact. I am trying to gain patient/doctor information on Tocilizumab (Actemra)Anti-IL 6 treatment in English namely on the product, safety information etc. The Actemra website is in Japanese.

Many thanks Kerri

I’m first time to see this site. I’m a Chinese who live in HK and my husband just found he got Castlemans Disease after he stay in hospital 1 1/2 month. His doctors said he should be Multicentric Castleman disease because still need to wait for some report so not 100% sure now. But after I read this site, it seems true. Now, I’m very scare, especially in this hospital. I want to ask is there have any specialist in HK or nearby can help us? And I’d like to ask is MCD can affect to so many organs? Such as Liver, Kindly, Lungs and Platelet? Please help. Thank you very much.

JIM’S ADVICE IS EXACTLY RIGHT.
I’VE BEEN IN THE SITUATION YOU’RE
IN. I PRAISE GOD FOR THIS WEB SITE

Hello,

I recently was diagnosed with jejunal intussuseption and a failing gall bladder. It this a typical side effect of multicentric CD? I was diagnosed 18 years ago with it in my neck area. I had my gall bladder removed last week with many complications following it. I also have had extensive hair loss, massive night sweats and eradic mentral cycles since March 2008. They told me my CD may be transforming to lymphoma but test so far are not showing it (pet scan and MRI). I need help….anyone ever have any of the above sypmptoms? Also how did CD respond after gall bladder removal. The jejuanl intesussseption has not been solved and they can’t figure out a lead point to operate on but the diarrhea and nausea continues.

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

I would first caveat this email with the statement that I am the CD Executive Director, a CD patient myself, and not a physician. With that being said, I too had a mediastinal mass resected near the heart without radiation to shrink the tumor. My physician Dr Bart Barlogie determined that the tumor was safe enough to resect and I was sent to a cardio thoracic surgeon for a complete resection. I have been in remission since the surgery some twenty years ago and have routine maintenance test performed every year to check for recurrence.

Based on my personal experience, I would recommend a second opinion from a physician that is familiar with Castlemans Disease. I will copy he associated physician on the email I send you so you may contact them directly for a consult. Treating a tumor in the chest takes a experienced Castlemans physician. A needle biopsy will not give a clear-cut diagnosis of CD but according to Dr Barlogie, you need tissue to investigate the architecture of the tissue as oppose to cells.

CHOP is an abbreviated name for a combination of drugs used in chemotherapy for some common types of aggressive Non-Hodgkin Lymphoma (NHL). It consists of four drugs – Cyclophosphamide (also called Cytoxan/Neosar), Doxorubicin (or Adriamycin), Vincristine (Oncovin) and Prednisolone. The first three drugs of the CHOP chemotherapy regimen are usually given as injections or infusions in veins on a single day, while prednisolone is taken as pills for five days.Each cycle is repeated every 3 weeks for 6-8 cycles. CHOP chemotherapy is used for many of the common types of aggressive Non-Hodgkin Lymphomas including Diffuse Large B-Cell Lymphoma (DLBCL). Its is also often combined with Rituximab in the R-CHOP regimen.

Fortunatly, we do have a physician at MD Anderson who specializes in Castlemans Disease. Her contact information is as follows:

?         Razelle Kurzrock, MD
Professor of Medicine
Chair, Department of Investigational
      Cancer Therapeutics
Division of Cancer Medicine
Anderson Clinical Faculty Chair for Cancer Treatment and Research
M. D.  Anderson  Cancer Center, Unit 455
P.O. Box 301402
Houston, TX 77030
Cell: 713-628-9669.
Phone: 713-794-1226; Fax 713-563-0566
E-mail:  rkurzroc@mdanderson.org

I recommend you get in contact with Dr. Kurzrock for a consult and see if she what she recommend as far as treatment is concerned.

The key to successful treatment is finding a specialist that is familiar with the disease and getting it treated. Due to your history with MD Anderson it may be best you see the CD Specialist there as oppose to going to another facility. Please let me know if I can be of further assistance.

Regards,

Jim Johnston,
CD Executive Director

.

Katie,

When I had my mediastinal tumor resected some 20 years ago it was recommended that surgical resection was the treatment plan of choice (especially depending on the size, location, and variant). I will forward this email to our medical staff for a medical opinion and respond on this forum. THank you for your time here on the CD blog.

Regards,

Jim Johnston,
CD Executive Director

Hello,
I was diagnosed with hyaline vascular castleman’s disease in June. My tumor is 8 x 6 cm and is in the posterior mediastinum. During the biopsy I bled out. The tumor also made me cough up blood. I have recieved 8 weeks or rituxan and the tumor has shrunk some. I have also had the tumor embolized. I have not coughed up blood since the embolization. The surgeon at University of Chicago (where I am being treated) does not think that surgery is possible because of the risk for bleeding. My oncologist thinks that radiation should be the next step. However, I am only 20 years old and he worries about the risk of secondary cancers. I am seeing a second opinion about the surgery. Can someone tell me if surgery is even possible? Also, what kind of radiation is best for castleman’s and what has the least side effects? I’ve heard about proton beam treatment does that work for castleman’s? Also, exactly how great are the risks for secondary cancers? Someone also suggested IMRT radiation, what is that? Please help!!!!!

Hi lisa,
she has a multicentric Castelmans, a systemic one. In particular 3 limphnodes have been affected.
francesco

hi i have been diagn.. with castlemans dis.. in 2005 into 2006 i went to dana farber for a year and half straight. leaveing me with not cancerous yet maybe in one day or five years it will turn but not now then after a second biop it said realted to thretro so i called ,my oncol.. and ask him if it meant its same as first results from first biop he said yes. i just dont understand if second biop was ok then why did they dr oncologist make a call saying i need to get in there to the cancer client side to see another dr.. then bascailly after being told cd dis and maybe non hogdkins.. i dont know its been awhile and now im thinking should i get updated testing only because i had a mass in my chest area over heart.. and i already had one out in my med area and groin area a few but again on left side a little one is getting bigger over the last 8 months… and as time goes on more and more in size god knows maybe the one in my chest too.. any advice on my next step. and now im suffering hair lose and these bumps on my head hurt sting ich and seem to not get anybetter does this have something to do with cd or non or hodg. lymphoma

Francesco,  I am sorry for the delay. I have received your email and have forwarded it to staff for review and comment. I should have a comment from the phycisians within 24-36 hours. I will post the response here for your review. Regards,  Jim Johnston, CD Executive Director

Anabel,

Let me get a clarity on this Dx – is it “Paff Tiroide” (spelled correctly)? I did a quick google and what I did find was “Tiroide” was greek for a part of the anatomy pertaining to Thyroid. Please advise if this is correct

Regards,

Jim Johnston,
Executive Director

Thank you Jim, I look forward to hearing from Dr van Rhee.

Dear Dr Van Rhee,

I am not sure if my other entry was received so I will post another – hope this does not double up.

My father is currently in hospital on Saturday/Sunday 26/27 April his hameoglobin blood count was low 63 then to 57.

He is still experiencing extremely chronic anemia. His specialist mentioned the possibility of mabthera (Known as rituxan) in the USA to help kerb the anemia – the problem is the cost is extremely expensive and because my father does not have lymphoma ie Castleman he may not be able to obtain at a reduced cost. Can you tell me if Mabthera is a form of chemotherapy? or what function it has in combatting anemia?

His current blood count as at today is 91 after blood transfusion which unfortunately also results in antibodies being found Anti-E, Anti-K, Anti-JKa and Anti-Cw. I am not sure what they mean by this.

Do you know of any other treatment apart from Mabthera which we could obtain in Australia that may not cost as much?
Thank you Kerri

Dear Dr. Van Rhee,
Further to my email 3/18/08 Unfortunately the prendisone has not worked for my father. He is again in hospital with a blood count of 63 and is extremely unwell. He has been transfused with 4 units of blood and his levels still remain low. His current doctor is away until Monday 28 April and the haematology doctor on call at the hospital has said he is producing antibodies that are unfortunately rejecting the transfused red blood cells.

The haematology doctor who is filling in was worried about further transfusion due to higher iron levels becoming toxic and possibly making his heart weak (he had a bypass several years ago). There must be something to give him to help? We had early discussed obtaining Mabthera (which is marketed under the name of Rituxan in the USA) but this treatment is extremely expensive in Australia. I am now very worried. Can you think of any other treatment in the meantime until we try to obtain the funds for Mabthera?
Thank you Kerri

Fu? operada de un tumor en el mesentario con un dign?stico de Sindrome de Castleman?s, vivo en espa?a y desde hace 4 a?os no me han realizado ning?n control, tengo muchos s?ntomas y me imagino es derivado de este sindrome, agradezco me env?en informaci?n acerca de los nuevos avances, gracias

Keri,

Not being a physician, I cannot give medical advice but I can forward to one of our staff and seek their “opinion”. Please be advised that our physicians can not give a medical diagnosis without seeing the patient and all the labs. We should have an opinion by Tues.

Regards,

Jim Johnston
Executive Director

Dear doctor,
I’m writing you because my sister (40 yo) was recently diagnosed in Italy (Florence) to be affected by castleman disease.
She had a 5cm axillary biopsied lymph node and a second 3 cm one in the chest. They still don’t know if the second one is castleman as well. She is based in Italy and I would kindly ask you if you know about the existence of any reference centre or doctor specialized in castleman disease in Italy or in Europe. Her present onco-hematologist in his 31 years professional experience treated only 3 cases of Castleman. Thanks for your help and collaboration. Francesco

KAREN – RESPONSE FROM DR VANRHEE

Jim, the type of CD that I was diagnosed with was the HV type.

Thanks,

Clark

He was diagnosed by Dr, Jon Kaufman at Emory University. He was told it was unifocal HV and that after resection he would be cured, but we don’t understand why he has the pain attacks. His
white blood cell count is high too.

Clark,

REPLY FROM DR TRICOT

Vitiligo is an autoimmune disease and all types of autoimmune diseases are more common in CD. There may well be a link between the two. What type of CD does he have, the plasmacytic variant or HV? I would think it would fit better in the plasmacytic variant id it is related to CD.

Guido Tricot, Phd MD
Utah

Clark,

I am not a physician (as you know) but I have experienced hives which may be similar to Vitiligo (w/o the itching). I have forwarded your question to our medical staff for a professional opinion.

Regards,

Jim Johnston,
ICDO Executive Director

My husband had a 2cm mass removed from his pancreas in Dec 07. He was told he was cured of Castleman’s D, but 8 wks after surgery he is having severe attacks of abdomenal pain. CT scans show fluid in stomach area
and swollen lymph nodes in his neck, but the attacks usually last a day then go away. Is there
anyone out there that is experiencing this same thing?

Karen,

I need to caveat this email with the fact that I am not a physician. I will do all in my power to get you the proper information and refer you over to a clinician who specializes in your variant of Castlemans Disease (CD). Please advise if you do not get a response or hear otherwise here on the BLOG.

Regards,

Jim Johnston
ICDO Executive Director

I just got results from the removal of a left cervical lymph node found when trying to diagnose TOS ( thoracic outlet syndrome) during a brachial MRI: CASTLEMANS disease, hyaline vascular type. ANOTHER enlarged LYMPH node was located on my right, just deep to the trapezius muscle within the paraspinous musculature, but could not be removed because of its location. Could this be the cause of the TOS symptoms on my right side?
I have had symptoms of TOS for years and doctors wanted to do removal of rib, but now I am wondering if this condition could be the cause. Any comments/advice welcome. My ENT removed the lymph node. Who do I see? I live in Los Angeles area, and have gone to UCLA and Cedars-Sinai for TOS consultations. Many thanks, KAREN

MY DAUGHTER HAD LYMPHOMA 2 YRS AGO. THEY REMOVED A LYMPHNODE BY HER PANCREAS AND SHE WENT THROUGH 6 MONTHS OF CHEMO. THIS PAST APRIL HER FOLLOW UP SCANS SHOWED A GROWTH AND ACTIVEITY IN THREE NODES BEHIND HER KIDNEYS.SHE IS IN MAINE AND HER ONCOLOGIST SENT HER BIOPSY TEST TO BOSTON, TO DANA FARBER INSTITUTE.THERE SHE WAS DIAGNOSED WITH CD.THEY ARE NOT DOING ANYTHING AT THIS TIME EXCEPT SCANS TO SEE IF THERE IS ANY CHANGES IN GROWTH SIZE.IS THIS ENOUGH? SHOULD THEY BE DOING SOMETHING ELSE? SHOULD SHE BE TAKING SOMETHING TO BUILD UP HER IMMUNE SYSTEM? IT’S HARD TO SIT BACK AND WORRY ABOUT WHAT COULD HAPPEN. DON’T WANT TO SEE HER GO THROUGH CHEMO AGAIN.SHE IS 37 AND HAS TO YOUNG CHILDREN. I GUESS MY QUESTION IS , IS ENOUGH BEING DONE IN HER CASE?

For anyone that may be interested there is a clinial trial going forward and my wife is participating in it at UNC in Chapel Hill North Carlonia–
It is my understang that they need some additional patients that have Castlemans for the next level of the trial. It is to be open only to Castlemans patients in this phase. You can contact Dr. Vorhees or the trial nurse Rey Garcia for additional informatoon. So far the results with my wife have been very good and we are very encouraged. She was diagnosed by the team at MD ANDERSON in Houston Texas— Dr. Fayed in Houston was tremendous and my hat is off to him and his staff.

Elana,

Thank you for the lead. Good luck with Dr Gilbert.

Regards,

Jim Johnston
CD Executive Director
Santa Fem NM  USA

Elena,

I have had a few patients see Dr Ralph Gilbert at the Princess Margaret Hospital in Toronto. If you are able to reach him, please send me his contact information so that I may add it to his profile. Good luck and keep us posted.

Regards,

Jim Johnston
ICDO Executive Director

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Anukpr – REPLY FROM DR VANRHEE (UAMS)

If there is lymphnode swelling in one area only resection should do the job. I would suggest treatment with steroids eg prednisone 1-2 mg per kg in slowly tapering doses. Rituxan usually does not work in my hands in plama cell varaint of Castleman’s. ?Thalidomide or revlimid, if you have access to it, can be useful and you can add it to steroids.

If you fail this the next options are chemotherapy or autologous stem cell transplant.? I will be happy to advice your MD

Dr. Frits van Rhee MD PhD MRCP(UK) FRCPath



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Daniel,

Although I am not a physician but merely a patient of CD myself and patient advocate, I can attest to the fact pleural fluid may happen in the lung and chest cavity. I experienced a massive amount of pleural fluid in the lung after I had a mediastinal mass removed from the thoracic area. I had a chest tube in for bleeding and it was taken out before bleeding subsided. When I was released the next day, I returned home only to be readmitted and another chest tube inserted to relieve the bleeding that still occurred from the surgery one week prior.

The fact that you have ankylosing spondylitis for the past 46 years may have a bearing on your case based on the journals I have read. They state “Ankylosing spondylitis is also a systemic rheumatic disease, meaning it can affect other tissues throughout the body. Accordingly, it can cause inflammation in or injury to other joints away from the spine, as well as other organs, such as the eyes, heart, lungs, and kidneys.” Therefore, I feel you need a Castlemans Disease specialist that may be made aware of your additional condition if further surgeries are required.

As mention above, I am not a physician therefore all information provided must be sanitized and diagnosed by your specialist. If you need reference from my articles on ankylosing spondylitis, please advise and I will send the URLs from the appropriate journals.

Regards,

Jim Johnston
Executive Director

I was diagnosed with Castlemans disease in August 2006 based on an enlarged lymph node in the left supraclavicular region. The node was surgically excised and was the size of a lemon. It was of the hyaline variety. A recurrence in lymph nodes in the same region occurred in May 2007 and three nodes were surgically removed. CAT scans indicated no other nodes in the body have been involved. One coincident symptom that started to occur in late April and that has persisted after the latest surgery is shortness of breath. I went to my hematologist last week and she detected pleural effusates in the left lung. I had a thorocentesis followed by a cat scan of the lung. My queston is simply, “Would you expect fluid in the lung cavity as part of the Castlemans disease?” Perhaps it is pertinent for you to know that I have had ankylosing spondylitis for the past 46 years. I am age 66.

PAIGE – REPLT FROM DR VANRHEE

This is very difficult. We are happy to review the pathology. ?It is very difficult to say from a distance what exactly is going on here.? Review of pathology would be helpful.

Jim,
Hi. I am so confused!! My daughter who is 6 years old has been really sick lately and we still have no answers. Back in January 2005 we found a “mass” in her posterior mediastinum. We watched this with CT for a year and a half and there was no change. It was to dangerous to biopsy due to the location and the fact she was recovering from her 4th open heart surgery for CHD. She is a very highly functioning little girl with Downs Syndrome. On May 1st we did a CT and found multiple enlarged lymph nodes (3×9 cm ant mediastinal and many more). In her lungs are multiple small nodules one measuring 8 mm. She has interstitial lung markings. The hem/onc guy said they look like “leukemic lungs”. We had biopsy and bone marrow aspirations. She has been treated for the past two years with steroids for these “respiratory crisis”. She would develop fevers & wheezing with breathing problems that would respond in 24 hours to steroids. She would receive steroids about every 4 to 6 weeks for 5 days. Apparently these nodes have been there all along but can now be seen in hindsight on the previous scans just not as obvious. The biopsy showed reactive lymph tissue. We never got a sample of the original mass. Yesterday we saw the immunologist and she made a comment that the only thing that was seen was some characteristics of Castleman’s Disease. When I asked the hem/onc Dr.(Dr. Steve Hunger, Shands in Gainesville, Fl.) he said he spoke with the pathologist about this and they didn’t really think to much of it. But here we are almost two months later Jenna is still having fever and enlarged mediastinal, hilum, and periclavicular nodes. We are seeing pulmonary, ID, immunology, surgery and hem/onc. I feel we are guessing at this time. Should I request for the pathology slides be sent to UAMS for review?
We had a HIV test done today just for the fact she has had blood products with the past open heart surgeries. I know CD is rare in children but this has been the story with my little girl all her life. Can you make any suggestions or give me your thoughts.
Thanks,
Paige

It’ been a while since I checked in. I was so amazed to read your e-mails and also Kriste’s. My husband is going through the same thing he told me that he is tiring apart like old rag. He has CD and it’s so hard to get the doctor to listen to us. He doesn’t want to go back because he feels it’s just a waste of time to get them to listen. I think there is more then CD going on in my husband body, he have joint and bone pain, swelling and a general ill feeling. They sometime make him feel like it’s all in his head not in his body. I am indeed sorry to know that some else is going through this but it’s good to know were not alone. The problem for me is now my husband don’t talk much to me about his pain, out fear he is becoming a complainer. sometime after sitting for while he delay getting up so I would not see his pain. I have no idea what is going on with the doctors but I don;t feel like I can trust them. They say he’s ok but he is not. I think they don’t want to give a c word (cancer)diagnosis but not know is far worst. I saw how they beat around the bushes with my aunt who had cancer, after months so going around and around the bushes through an emergency room visit the ER drs discover 5 lesion in her brain the $%&%#%%cancer had Metastasized from her lung. Believe me she was at the dr’s office every month. So no I don’t trust them but what do we do?
I hope some breakthrough come our way.
Judy

My mother was just diagnosed with the Castle man disease after being very sick for 3 months. After allot of Mri’s and scans. They took a sample of lymph node under arm and then from neck and found the disease from sample in neck. She has enlarged lymph nodes in neck,chest,stomach. The problem is she is from another country and her doctor has only seen 4 other cases in her lifetime. The doctor started her on steroid treatment and she is not responding well. I know little about the disease and what kind of life my mother will expect with this and I feel her Dr in very unexperienced with this. So do you have any information for me and maybe ideas that would help her. She is 62 and not in a condition to travel and. I live in the US and feel very lost over this and unsure of what to do or what is normal. I would love your help

Clark,

Not to my knowledge but I will get a medical pinion and pass it along.

Regards,

Jim Johnston
CD Executive Director

Great news Lisa. Make sure she keeps up with her maintenance. Stay in touch.

Kind regards,

Jim Johnston,
CD Executive Director

hey i know how you feel if you want email me at reverema123@hotmail.com

Beverly,

I will pass this on to our medical staff for a professional opinion. We should have a response w/i 24/48 hrs at which time I will post all the assumptions and advice. Keep in mind that the physicians assisting here are going purely off the information provided in your email and for a clear-cut Dx, they would want to see the patient in clinic.

Regards,

Jim Johnston,
Executive Director

Hi Laurie, I would love to talk to you. My email is skymother@aol.com. Email me and I will talk with you either by phone or typing. You are not alone. Been there, still here, will continue. I would rather wear out then rust. I heard that somewhere. However, most of the time my body feels like rusting, my mind keeps me going forward.

Tammy

Kristi,

You have written a letter similar to the ones I’ve written more times than I can count. I, too, have PCCD. I?m 42 yrs old. It’s been 2 1/2 yrs since my diagnosis. I suffer from chronic joint, bone and muscle pain, fatigue, chronic diarrhea, edema, etc, etc… My CRP and SedRate are almost always elevated but since my treatments with Rituxan and steroids followed by surgery, my scans have been clear. They tell me that if it was the CD, it would show up on the scans. I’ve been to my oncologist, family physician and a rheumatologist many, many times. I always tell myself that I’m NOT going back because I’m tired of feeling like they think it’s all in my head. But, I always end up reaching the point that I’m tired of feeling like &*%$ all the time and I want to get to the bottom of it. I usually only leave feeling more frustrated than when I went in. I also feel like I’m becoming a hypochondriac, but I keep telling myself that “my head” can’t cause my CRP and SedRate to be elevated, edema, etc.

Please feel free to email me. I would love to talk to you.

Laurie

A random lymphnode was removed during thyroidectomy, plasma cell Castleman’s is found. CT’s Bone Marrow test all negative. CRP and ESR are still high. With the rest of my test normal or Negative. My WBC is normal for the first time in 10 years(usually 11-19)But I feel worse now than ever. I am afraid I will be in the hypochondria category again as in 1996. Has any one else had trouble getting Dr’s to listen to symptoms and not just the tests. I realize my pain may not be from Castleman’s, but it is constant.(varies in how much) How do you get a physcian to understand that a 40 year old female should not be stiff as a board in the AM. She should walk with a limp after working for a while or have bone pain. She should not have to take muscle relaxers every day to get thru the day. I am afraid with all the normal CT and bone marrow they will say “you are ok” This has been on and off since 1996. It makes you want to shake them and say I AM NOT OK. I hurt!

Jean,

I have requested a medical opinion from the University of Arkansas for Medical Sciences (UAMS) and have received the following response from Dr Tricot.

Dr Tricot writes:

It appears that this patient is very nervous about her lymph node and therefore, I would recommend to have it removed and examined so that she knows what is going on. If she would not be so nervous about it, waiting a few months to see if the lymph node decreases in size would be a perfectly reasonable option. If it does not decrease in size or increases, it should the be removed.

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

Dear Jim
I am sorry that you yourself have current health problems. I hope all goes well.
I emailed you about 6 mths ago, I was diagnosed with CD in 2005 56x 39 x48mm lobulated mass in the retroperitoneum above the iliac crest. It contained moderately extensive punctate calcification predominately in a central distribution. Anyway it was surgically removed and I have had 6mthly scans & bloods done since. Since surgery, I have had thyroiditis really bad, it took 6mths+ to settle now I’m on thyroid medication, and I recently find that I have a lump on the left side of my neck just above my collarbone, this has been scanned, I have seen a surgeon, who said not to worry as the lymph node was only 1cm.,and sent me to a orthopedic specialst because of the pins and needles in my hand (reasoning, I may have neck problems). My worry is that the lump, which is visible, is causing me to feel fulness in my ear and pressure in my neck. It feels rubbery. My ortho (who agrees I have a lump) is now sending me to see a neurologist to see about my nerve patterns in my arm. I am nervous about this, as I am also starting to feel tired, and achey. About 5 years ago I was diagnosed with fibromyalgia. Non of these doctors are familiar with CD, and have not heard of it.
Do these sound like part of the CD symptoms, because I have read such variations. Have you personally got any life messages on how to deal with all this. I try to live one day at a time, enjoy that day, get regular sleep, eat well etc., but as you know some days the thoughts just rush in, and can be very negative.
Take care of yourself
Jean Reed
New Zealand

David,

He just wrote me and I am sending him your email address.

Regards,

Jim Johnston,
CD Executive Director

David,

Consider it done – TODAY.

Regards,

Jim Johnston,
CD Executive Director

Clark,

Your physician is on the right clinical path for post-operative care of Castlemans. To answer your questions, CD may be a life altering event that require periodic check-ups to ensure no recurrence of tumors. Up until a few years ago, I did not have any evidence of recurrence. Then through blogs, a few patients started reporting recurrences.

The treatment plan of 6 mos radiology is on target with the treatment provided by the University of Arkansas for Medical Sciences (UAMS), Little Rock, AR. They recommend 6 mos CT for the first few years then if scans are clear, every year thereafter. Like I said, this is a change where you will be required to monitor blood work and radiology annually to check for rare recurrences.

Medication is usually used to shrink certain tumors so they may be excised. In other variants of Castlemans where surgery is not an option, drug therapy is used to treat and control the CD.

Hope this helps. Please advise if I may be of further assistance.

Regards,

Jim Johnston,
CD Executive Director

JUDITH M – REPLY FROM DR TRICOT (UAMS)

Does not look problematic.

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

Hello Jim I have not seen any new entry for a while. You suggested that you would send for some information me. My husband had some blood work and his WBC was a little low 3.7, his A.typical was high 4.3 and his nuetrophils was 1.61. I ask the dr for his opinion his said that no problem the blood is at baseline.
what do you think?
Thanks

JUDITH,

Would you like me to send your dialogue for another opinion? Please advise.

Regards,

Jim Johnston
CD Executive Director

Thank you so much for your help.. sorry this is a bit long.. I have read the response, my feeling is that there might be a mis-dx here or a typical case of the dr. not knowing about this phenomena. My husband did do a pet, the ct read ” well define mass with smooth edge with a small area of ill define margin that show local aggressiveness, and this is how the pet test read” Based on a review of Nuclear Medicine Annual 2000, the mean value for lung carcinomas Is 2.7 +/- 1.2 and a negative predicted value for nodules bigger than 1 cm is 97% using this test. Values less than 1.4 are felt to be unlikely to be carcinoma.
DETAILS OF CLINICAL FINDINGS:
On these images, there was no significant motion artifact At the site of the masses on CT, no definite FDQjuptake Is seen on fusion images. However there Is low grade uptake seen posterior to the left atrium with early T/B value of 2.77 and delayed T/B value of 2.72 Images, and In the posterior mediastinum with a maximum tumor to background ration of 2.38 Identified on the delayed images,
There is prominent uptake on both early and late images identified in the lower nasopharynx but this is in the midjlne, with an early value’of 3.69 and delayed value of 5.34, which may reflect a benign saliva mjdline symmetric activity slncenol mass [s seen in this area on the chest CT.
I appreciated the fact that you are not a dr. and also that the dr. who does read this can not give dx without seeing him but your opinions helps me to communicate with my dr. Thanks again and my God Bless every person blogs here.

I am HIV Negative, All the biopsy’s were read by another pathologist with the Cancer docotr and that’s when they told me I had CD but the slow growing kind. But I have to wonder, I have some more in my neck and in my left forearm. Can RA produce that many Lymph nodes? I know I have RA because of serve pain in the joints. I have been feeling pain like deep within my bones that tends to come and go,this is different from RA feeling. Now, if I am Ra and CD at the same time what can I expect. I am currently not on any medicatins for the RA except 2.5 mg predisone. And only Yaltrex for the CD. I was on very bad medication for the Ra but because I was told I had CD I cannot take the Medications for RA because of the side effects. I was on like Mobic, Vioxx, Remicade, Mexotrexate and others. These made me very sick. Cancer Doctor says I cannot take these medicatioms because I have two immune disorders. Now, I only get blood tests done at the Cancer Doctors, not sure what is being tested. Have had alot of MRI and CATS but without contrast I have a side effect to it. No pet so far. I was told I was doing the right thing by removing the masses. Some of them get very large and produes problems. The Cancer Dictor I’m seeing now says he has another Patient with it, how do I get biopsy’s from him and send to someone who knows CD (pathologist). He seems to know a about CD. He is the second Cancer Doctor I have seen. I was sent to him by my insurance company for a second opinion because the first dictor wanted to send me to Shands in Jacksonville, Florida. Been there years ago for one of the masses to be removed. Insurance Company said no sent me to the second. I am very worried about what is going on with me and have this feeling something is out of place.

LUCINDA. Response from Dr Tricot (ACRC)

I think the most important issue is to have all the biopsies reviewed by a center with experience in CD to see if the diagnosis is correct and go from there.

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
TricotGuidoJ@uams.edu

JUDITH, response from Dr Tricot (ACRC)

It is possible that the symptoms are related to CD, although it would be unusual unless new tumors have developed elsewhere. A pet/ct scan would be a good test to evaluate that. These tumors will not feed of the organs they are attached to. These tumors almost never turn into cancer, unless the initial diagnosis was incorrect. It would be best to evaluate if the tumors can be resected. This should be done by a competent thoracic oncologic surgeon.

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;
TricotGuidoJ@uams.edu

Lucinda,

First off, I need to caveat this email with the statement that I am nit a physician but a patient myself of 15+ years and CD patient advocate.

I am going to forward this email to our Plasmasitic Specialist at the Fred Hutchinson Cancer Center. Dr Corey Casper is our Specialist in the Plasma Cell variant. Providing he is not out of the country, we should hear back from him shortly on his recommendation.

Regards,

Jim Johnston,
CD Executive Director

I have been recently diagnosised for CD. I had Lipoma,left antecubital fossa. This is the fifth surgery for Mass/lymph node. Pathology reports reactive lymph node with follicular hyperplasia. Atypical follicles with hyalinized germinal centers and a background of plasma cells. On this fifth surgery is when I found out I had CD. Now, about Ten years ago is when the first was removed at about the same time I was told I had Rheumatoid Arthritis,I was never told I had CD. Since that point of time till now, I have had these masses/lymph nodes removed from right armpit, right forearm, left neck and also ovaries and tubes removed because of large cyst/mass. Also in the process I have also had to have surgery’s on both hands and had to fuse and plate them together. I have also been told I have thoracic outlet syndrome. I am seeing Dr. Sunnenberg at Sacred heart Hospital Cancer center in Pensacola Florida, have you heard of him. And, if you can tell me that here lately I have been getting very ill, from benign heart arithymias to cherst pains to dizzyness, and now some days I sleep for days at a time. The Dr. has me on Valtrex because of the shingle type rash I get im my left eye, sometime large cit sore on my face and ithcing (Skin rash I guess> Now some of these sytoms I have had before but not as much as now. Could all this be because of CD. Help?

Hi Jim, just a quick hello from this side of the pond. I was in hospital for 3 days last week for MRI scans but results were good.
I thought I’d let you know as it is ages since I last contacted you.
My CD seems to be kept in the background for the time being, but my general health is a little rough, but still on my feet.My regards to all my old friends State_side.Kind Regards Richard Cooke (England)

Are there any physicians at Vanderbilt that you know of? If not, I believe our attending physician will be aggreeable to a phone consultation with Dr. Van Rhee.

Thanks so much for your presence on the web!!! It really helps.

I am in Nashville, Tn and my Dad was just diagnosed with Multicentric Castlemans Disease. He had a sugical biopsy of chest lymph nodes and liver two weeks ago and we were just given the CD diagnosis yesterday .

Since Nov. 2006 he had two needle aspirates of lymph nodes and bone marrow biopsy with no conclusive results until now.

He is a patient at the VA but has a Vanderbilt Hematologist that is treating him. Dr. is not a specialist–in 30 yrs. has never seen a case like this.

My dad is 73 and has lost 70 lbs., is extremely weak/anorexic, and anemic. He has no edema, but spleen and liver are enlarged.

Could you give a referral for a specialist here? Any help would be appreciated. Thanks.

Louise,

We have had cases in Ireland but have not heard of any SPecialist there yet. Due to patient confidentiality and certain HIPAA requirements here in the states, I can not give out names but can only state the there have been cases. If I hear of any SPecialists there or of patients from Ireland read this blog and are familiar with any there, I am sure you will get a message here on the board.

Regards,

Jim Johnston,
CD Executive Director

Tracey,

Sorry for the delay in writing. I have been in the hospital for minor surgery.

As far as CD being hereditary, we have no clinical evidence that this is passed on to other generations. It is an auto-immune disorder that is considered in the non-Hodgkin’s family and is a rare disorder. My advice is to ask questions of your attending physician or Hem/Onc. If you are not getting the answers you need, get second and third opinions (if needed).

First order of business is to find the variant of the disease your relative has. What are the symptoms etc. and forward any test results performed by previous physicians to other atttendind MDs. Once the variant is Dx, a treatment plan will be identified by your SPecialist.

For further information on treatment plans, CD variants, or associated illnesses, please visit my website at http://www.castlemans.org.

Regards,

Jim Johnston,
Executive Director

Hello Jim,

I wanted to follow up and let you know what has transpired since we last communicated about mom. I did get to speak directly to Doctor VanRhree, what a pleasant and kind man! Shortly after actually being so close to getting mom out to see him, moms hematologist/oncologist that (I personally dont care for)saw her and my sister and I and told us mom was too weak for such a trip and that “they” meaning Dr VanRhree and UAMS couldn’t do anything more or different than what he was doing here for her.Told us to leave her be and that she had 4 months to a year left. I had asked about anti interlukin 6 and I was told it would kill her. He also said Dr.VanRhee sounded stupid. I am so disturbed with his attack on me and Dr. VanRhee as if I was wrong to even look into a specialist for mom.Anyway we went home that day heartbroken and setting up hospice for mom. Less than a week later mom who has had some of the worst edema I have ever seen since they treated her with high doses of prednisone and Etoposide and had ended up in the hospital with congestive heart failure and fluid in her lungs began to lose oxygen concentration which dropped to 80.
The Hospice nurse came and proceeded to tell us mom wouldn’t make it through the weekend.Well mom made it through the weekend and it is a good two weeks later and mom is in a skilled nursing facility having rehabilitation to help her get a little stronger before we bring her back home.She had been on 5 liters of oxygen and is now holding oxygen concentration at 95-100 at times with 4 liters of oxygen.She is doing so well and short of a miracle I am wondering if maybe now that the side effects of high steroid fatigue and edema as well as the oral chemo she was taking for about 3 weeks may have indeed helped in some way to have her come back to this degree from death.I am very concerned though about this “Flank Edema” which is also in her outer thigh area. All the leg and arm edema has subsided with 80 mg/day of Lasix being given her for the past gosh month at least, but this “flank edema worries me. I researched it on the net and find it may have to do with her kidneys and I was wondering what tests would be done first off if this is a symptom of the Castlemeans. I was told by this hematologist/oncologist that moms castlemans is multicentric but I truly cant stand his bedside manner and cocky attitude towards me after wanting to see a specialist.He did say “If anything you should send her records and samples to the mayo Clinic in Rochester”, I have moms permission to send her records to a specialist if not to help her to maybe help in the research for this disease so that one day maybe someone else can benefit from her case.

Sincerely,
Beverly

Dear Pt.

I too was diagnosed (Dx) with the Hyaline Vascular Variant of CD although when I was diagnosed, physicians did not know that much about this disease. I am not a physician and can not speak medically about your case but can tell you what I was told by my CD Physician. The HV variant is the less evasive of the variants and once the entire mass is resected the recurrence rate does drop. I can’t say that it won’t recur because we have clinical evidence that shows recurrence in a few patients. That is why post operative lab work and routine CT v. x-rays are important. Hopefully the entire mass was resected. My physician had me seen in clinic every 6 mos post-op for one year the annually thereafter. The same holds true with the frequency of lab work (blood drawn). If your physician is not familiar with the protocols for the lab work, please write back and I can send you what the University of Arkansas for Medical Sciences (UAMS) recommends to patients for this procedure.

I hope this answered some of your questions if not all. Being Dx with a rare disease such as Castlemans is tricky to treat and requires a physician that is meticulously familiar with the disease. If your Dr would like to correspond with our Specialists here in the states, please advise and I will forward their email address.

Kind regards,

Jim Johnston,
CD Executive Director

Liz,

Unless there are any other physicians that I do not know of in the mid west, Seattle or Little Rock would be your options. Depending on the diagnosis (Dx) and variant you would be referred to one or the other. Seattle primarily deals with the Plasma Cell Variant (PCCD) where the University of Arkansas for Medical Sciences (UAMS) can handle all variants but their specialty is Unicentric / Multicentric Castlemans Disease. The email addresses for the referring physicians are located on the main page of this CD website. If you need further guidance, please advise.

I do remember one patient speaking about a treatment facility in either Phoenix or Scottsdale. I will investigate and if I find a physician in that area, I will advise. You definitely want a physician that has experience with the various Tx plans as well as running specific tests and proper Dx as oppose to watching the clinical course of the disease.

Please advise if further clarification is needed.

Regards,

JIM, CD
Executive Director

Before your son-in-law visits this new physician, I wold have a telephone consult with him first, get his name and try and see how many Castlemans patients he has “treated”. Then ask him what variant of CD is he experienced?with and based on your son-in-laws prognosis and over-the-phone consult, can he recommend what treatment options you will have? We have Specialists that specialize in?only Plasma Cell variant patients (not to say they can not treat others) but their primary experience is in Plasma Cell Castlemans Disease (PCCD). This is important if you are treating a patient that has been diagnosed with Multicentric or Unicentric Castlemans Disease.

Castlemans is a specialty all of its own and does require a physician that is familiar with treatment modalities as well as symptoms.

Hope this helps. Please do not hesitate to write with any other questions or concerns.

Regards,

JIM, CD
Executive Director

Beverly,

You are correct regarding medical records. Sign a release?with your mothers current physician and get all her records and any films available to take with you. This will speed up the process of evaluating films and reports?with a comparison available. It’s best to keep copies of all your medical records so you have them in the event of a second opinion or alternative treatment is required by another physician.

First order of business is to call Dr van Rhee’s office and see what appointments are available. Then coordinate your mothers visit with the UAMS Social Worker (501) 296-1503 x1203 and the in-take coordinator (888) 693-5662. If there is any assistance?they can provide, ask them at this time. Since your mother is on Medicare, you may need a prior authorization from Medicare before traveling. Contact Medicare and ask about the prior auth. so they may arrange for an expeditious coverage without?having to waiting in Little Rock.

As far as follow-up, normally Dr van Rhee provides discharge instructions if surgery or treatment was provided. To follow up, simply give Dr vanRhee the name and telephone number of your current physician and ask him if he would consult with your local physician (unless specialized treatment is necessary) regarding special instructions, labs and appointments. This way, you may not have to make?the trip to Little Rock as frequent as needed and follow-up may be handled by your local physician with the assistance of Dr vanRhee.

Please do not hesitate to write if further clarification is necessary.

Kind regards,

Jim Johnston, CD
Executive Director

Beverly,

Castlemans Disease requires the intervention of a CD Specialist. I recommend you have a telephone consult first with one of our Specialists and follow-up with a clinic visit (as I am sure the Dr will request). There are two facilities with excellent CD physicians. University of Arkansas for Medical Sciences (UAMS), Little Rock, AR or the Mayo Clinic, Rochester, MN. Ask for Dr Frits vanRhee at UAMS or Dr Angela Dispenzieri at Mayo. Telephone numbers are as follows:

VanRhee?? (501) 296-1502 ext 1414

Dispenzieri?? (507) 284-2479

Please advise if I may be of further assistance.

Regards,

Jim Johnston, CD
Executive Director

Cindy,
I received the same email. I, too, have the PC variant. HMM?

Laurie

i have been diag. with castlemans too. i know how you feel. email me at reverema123@hotmail.com will talk more im from the boston mass area

Thank you Jim,
The combination of vague symptoms and a vague “disease” causes fear that prevents me from seeking help because something may be found that will mount into something later, even though it is relatively innocuous now. I will eagerly await a physician response.

Again, thank you, and you deserve much praise for your work on CD.

I THINK THAT I SHOULD HAVE POSTED THIS COMMENT HERE FIRST. I APOLOGIZE FOR THE CONFUSION

Hello: I posted what is below and would like to post it here because I am uncertain who gets what message and where. I am in LR (ie UAMS) and have easy access to those experts. However, I am on a student budget and do not know if CT is really all I need first before I go into Dr. Van Rhee, who requires a several day stay as i understand. Please respond as soon as you can as I have posted this same concern prior to the construction of this message board/site and never received a response. I feel that I am ignoring something that may harm me unexpectedly. Thank you:
I have unicentric CD diagnosed by removal of a LN from posterior cervical region in 2004. Only symptoms I have, that seem odd to me, are a rash in the subscrotal area and a patch of psoriasis on my chest. Fluiconide (spelling?) helps for the latter. Pramosone offers relief for the former.
Two follow-up CT scans since the surgery showed no abnormalities, except a spot on the thymus or thyroid that was not worrisome. Recently, I found a psoriatic type patch near my left elbow. I am getting concerned. I also notice consistent diarrhea and fissure in the anal region, which Dr. attributed to hemorrhoids and low fiber. I am very concerned, but Drs. never seemed to be. I have a history of mono at age ~12. What would be the next step? Are any of these symptoms of concern. I do not know where to turn, since my Dr. seems indifferent and I left the Heme/Onc Dr. who diagnosed it.

Lara,

There are a few physicisians in the?New Jersey?are none of who I have had any dealings with. I do know of Dr. Munshi who was my previous physician while he was in Little Rock but has since relocated to Dana Farber School of Medicine, Boston, MA. He is still seeing patients and is an excellent CD physician. Here is his contact informaton along with the other local physicians. Please advise if I may be of further assistance.

Regards,

Jim Johnston
CD Executive Director

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

Roger K Strair , MD Hematology
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)

Jim,
thanks for your fast response. Sorry about the storms. Here some answers to my questions:
a) KS stands for Karposi Sarcoma
b) I believe the doctor my partner is seeing is a specialist [from what my partner told me it seems that he has seen at least 3 CD cases last year - guess that counts as a specialist]
c) The doctor told my partner not to look up any information about CD on the web as most of it would be out-of-date and that he would have nothing to worry about.

This worried me slightly and didn’t seem very trustworthy to me. So I did some research and found your web site, which does indicate that CD is quite a serious disease. That’s also why I am asking for specialists in the UK and confirmation of what our doctor said. Better safe than sorry (-:

Best Regards
– Lars
P.S.: Thanks for forwarding the info to a medical team

Reply from Corey Casper, MD

Response from Guido Tricot, MD, PhD
University of Arkansas for Medical Sciences

Kieth,

I will pass your question to our medical staff and hope to have an answer by COB today.

Regards,

Jim Johnston
Executive Director
Castlemans Disease Organization
Santa Fe, NM

Hi April, I would love to talk to you, also. You can email me at anniekins_sidewalker @hotmail.com. I just started treatment a few weeks ago. I am on Thalidomide and Dexamethasone.

Carole, I was recently diagnosed with my 2nd episode of Castleman’s (1st time was in 2003). I have several masses throughout this time. I will be starting chemo & radiation soon. I would love to talk to you at length. Let me know how to get in touch w/you.

i am feeling just gassed all the time i do not have HIV or any of that stuff i have no symptons of mcd anymore other than one week i weigh 190 next week 175 weight fluuctuating crazy. i just need to live as long as i can im a single father of 2 little boys and the thought of leaving them is enough to kill me

Remissions are very variable in CD with some lasting a few months and others lasting for many years. If remissions last long, the disease is usually sensitive again when the disease relapses.

Guido Tricot, Ph.D., M.D.
Professor of Medicine and Pathology
Director of Clinical Research
University of Arkansas for Medical Sciences
Little Rock, AR

yes it is the same thing if you go to castlemans.org it is on the list as the same thing along qith 20 different other names

Dear Jim,
Thank You for responding so quickly. I am 29 years old and live in Southern
California. Can you refer me to someone close? My biopsi was done on the lymph node in the axilla. It has been 3 months since I first found the lump, and my doctor still has not done x-rays or any tests besides the biopsi.Then they diognosed me with Lymph Node Hyperplasia. Is this the same as Castleman Disease? Please help, I am very confused.

Christina

To Whom it may concern,
Today I was diagnosed with Giant Lymph node Hyperplasia. I had went to the doctor that told me that my lump under my armpit was a cyst at first. Nothing was detected in the biopsy, so they decided to remove the Lymph Node and check for Lymphoma. The doctor that I seen did not seem to even know what it was that I was diagnosed with, he stated that he would call me back after he talks to the pathologist. That was today and he of course he did not call me back and tell me what type or what to do. Should I wait? I am confused and have no idea what to do next. Do I get x-rays of my other lymph nodes? Please give me some advice.

Yours Truly,
Christina

Stacy,

Sounds like you have a treatment plan in order. Each case is dealt with differently and I would ask your physician what follow-up he requires after the scan. If he does truly Dx it as CD, then is surgically resecting the mass the preferred treatment?or can it be treated with drugs.

Hope this helps. Please let me know if I may be of further assistance.

Regards,

Jim Johnston, ED
Castlemans Disease Organization

Yes…that is what I want too. I originally went to Univ of Penn, which as you know, is a very good hospital. I thought THEY should have been able to correctly diagnois with such a large sample, they removed 2cm! Sloan Kettering wants to do their OWN biopsy, so I’m off to see another thorastic surgeon there. So, we’ll see.

Hi Jim,
I will be getting a CT scan next week, I asked about the PET scan though they said that was more expensive and felt that they would get enough info form the CT scan to proceed. I was also ordered blood tests.
I want to thank you once again for your wonderful site.
I just have a couple of questions for you.
When I go back to doctors after this what questions would you ask the doctor if you where me.
Also I was still wondering if you know an estimate of about how many people actually have this disease in the world or USA. Thats just me wondering, and I thought you might know.

Thanks, The doctors at my hospital have been very nice and it makes me feel good about having this disease.

Stacy

REPLY FROM Dr Frits Van Rhee:

I was recently involved in a car wreck. CTscan of chest revealed two very large lymph nodes, ant. mediastinal 4.5cn, and subcarnal, 3cm, and mildly prodominant spleen. Initially, they stated hodgkins, however, the biopsy proved undiagnoisic. Pathologist stated that “looked like castlemans, however, didn’t fit hyline or plasma, type, lack of clinical symptoms, strong arguement against plasma, rare mixed type, which this could be an example of, have been discribed.” I tested CD30+ CD20+ and CD45+. CD15negative. I have no symptoms. CBC was good. I have an appointment with SLOAN Kettering in NYC tommorrow, because the pathologist stated that, “of greater concern that this was a subtle or brewing lymphocyte rich classical hodkins” I didn’t even READ about the castlemans, until I GOT the pathology report from the dr. I asked him why he didn’t tell me about that before, he said he really didn’t think it was that. I did my own research, and I know that there is a really good chance that it’s that. SO, I spoke to Dr. Munshi in Boston, who said he would treat me. My question is: I read somewhere else here, I should only go to Munshi if I’m limited to boston area. I am in NJ. SO, who would be better at treating this, Dr. Munshi or that guy in OHIO? I know everyone says this but I REALLY need to live, I’m 33, and have two small children and I have to get better. I would love to go to Arizona, and could probaby go for a week, but am not sure if I have the financial funds to go on a regular basis for ongoing treatment. Could I go for a consultation and treatment plan and go to someone else for the actual treatments? Do you guys do that? And also, should I let my thorastic surgeon take them out in the meantime? He stated that if they were still there in 4 weeks, that he would remove them all? I’m not sure WHAT to do!

REPLY from Frits vanRhee, MD, PhD. :