International Castlemans Disease Organization

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10/3/2006 9:27 PM charris wrote:
has anyone ever seen castleman in an toddler and how does it present?? what are the symptoms and can a multicentric mom give the disease to her baby??
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1. 5/7/2008 5:14 AM Tonya wrote:
  I have wondered this same thing. My 6 year old just had a major brain tumor removed in November. Because not to many doctors know about castlemans disease they always say I dont think they are related. Does your toddler have castlemans disease or were you just inquiring?
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10/5/2006 3:36 PM Jacki wrote:
Hey Jim, thanks for getting this back up on-line. I look forward to connecting once again with folks that are dealing with CD, as I believe we can all learn something from each other.

Jacki
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10/6/2006 2:57 PM stephen parker wrote:
Wife diagnosed via mediastinal biopsy) with Castleman's (mediastinal lymph node mass, 4.2 cm. with adjacent mass 1,6 cm.) in 1992/3. Mass NOT resected. 2005 develops rash, 2006 develops enlarged spleen. Major Clinic, suggests possible lymphoma. CAT/PET performed. 6 cm. Mass lights up with up-take value of 8. Same Major Clinic performs broncoscopy biopsy & bilateral bone marrow biopsy. Results: NORMAL. NO lymphoma, no malaignancies. Mediastinal mass has normal cells. Benign hyperplasia. Castleman's sx. Clinic wants to remove spleen for examination. Although respectful of Major Clinic's Lymphoma Head Dr., directly in charge, we feel somewhat intimidated but believe more conservative and indicated course might be starting treatment with recently released Actemra, an IL-6 receptor anti-clonal, or pinpoint radiation, or other drug therapy, to see if mass shrinks, rash abates, spleen normalizes, before proceeding directly to operation,(futher compromising immune system) even if performed laproscopically. Major Clinic Head Pulmanologist, who performed broncoscopic biopsy, says flatly: diagnosis is Casteleman's.

(We have dimished confidence in this Major Clinic for further handling of this condition. Where should we go? What should we do?

Thank you in advance.

Stephen Parker, Ph.D.
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10/6/2006 3:02 PM stephen parker wrote:
Wife diagnosed via mediastinal biopsy) with Castleman's (mediastinal lymph node mass, 4.2 cm. with adjacent mass 1,6 cm.) in 1992/3. Mass NOT resected. 2005 develops rash, 2006 develops enlarged spleen. Major Clinic, suggests possible lymphoma. CAT/PET performed. 6 cm. Mass lights up with up-take value of 8. Same Major Clinic performs broncoscopy biopsy & bilateral bone marrow biopsy. Results: NORMAL. NO lymphoma, no malaignancies. Mediastinal mass has normal cells. Benign hyperplasia. Castleman's sx. Clinic wants to remove spleen for examination. Although respectful of Major Clinic's Lymphoma Head Dr., directly in charge, we feel somewhat intimidated but believe more conservative and indicated course might be starting treatment with recently released Actemra, an IL-6 receptor anti-clonal, or pinpoint radiation, or other drug therapy, to see if mass shrinks, rash abates, spleen normalizes, before proceeding directly to operation,(futher compromising immune system) even if performed laproscopically. Major Clinic Head Pulmanologist, who performed broncoscopic biopsy, says flatly: diagnosis is Casteleman's. (Thorocotomy considered too risky due to existing scar tissue and previously paralyzed hemi-diaphram, now recovered.)

(We have dimished confidence in this Major Clinic for further handling of this condition. Where should we go? What should we do?

Thank you in advance.

Stephen Parker, Ph.D.
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1. 10/6/2006 7:58 PM Jim wrote:
  Dr Parker, I need to caveat my email with the fact that I am not an MD but have been studying the effects and treatment of CD since I was Dx with a mediastinal mass as well in 1980. At that time, there was very little known about the disease other than what was posted in medical journals and treatment studies. I contacted the University of Arkansas for Medical Sciences after researching the disease and finding out that they were one of the few facilities that had an active CD program. My tumor was removed and I have been in remission ever since. Form al the literature I have read, the benign mediastinal hyaline vascular variant of CD is treatable if it is small enough to get in order to surgically remove the tumor. If not, the patient runs the risk of the tumor growing and attaching itself to other major organs. Treatment at this point (ACRC protocol) is to reduce the size of the mass so it is resectable. I suggest you consult with Dr Bart Barlogie and get his medical opinion on whether the tumor is resectable or not. I too have a compromised left diaphragm due to the tumor attaching itself to the phrenic nerve. Although I too had scaring, the risk of leaving the tumor in v. surgical resection was dealt with immediately. I too was offered radiation Tx but declined under the advice of my physician in Arkansas. I did not want to compromise any major organ or tissue with another form of disease which could potentially be malignant. If you would like to contact Dr Barlogie, please advise. In the meantime, I am sending your email to him for a consult. Let me know if I may be of further assistance. Regards, Jim Johnston Executive Director International Castlemans Disease Organization Santa Fe, NM
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  1. 10/10/2006 7:15 PM stephen parker wrote:
    Jim,
    Thanks VERY much for your swift & helpful response. Thanks, too, for your referral to Dr. Barlogie. What's the best way for us to contact him.
    Thanks again,
    Stephen Parker
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2. 10/10/2006 8:35 PM Jim Johnston wrote:
  Dr Parker,
  
  You may contact Dr Bart Barlogie or Dr Frits vanRhee at (501) 296-1504 x1639. They will be able to schedule a telephone consult for discussion and potential Tx Plan or referral.
  
  Regards,
  JIM
  Reply to this
  1. 10/12/2006 12:57 PM tania cowan wrote:
    I cannot get through on this number from the UK and urgently need advice. Could someone contact me either at taniacowan@hotmail.com or 0044 7771 576954?
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    1. 10/12/2006 7:53 PM Jim Johnston, Executive Director wrote:
      Tania / Dr Parker,
      
      Sorry for the inconvenience. Please try the ACRC clinic directly at (800)MYELOMA or (877)635-7240.
      Regards,
      JIM
      Reply to this
  2. 4/4/2007 4:09 PM tanya wrote:
    i just wanted to ask jim and who ever else experienced crazyness after have a meditasal mass removed and it say findings of castlemans then going to a big top hosp. you think answer would quickly come. well its about 5 months now and two biopsy one i still havent heard the result dr never called me yet .. im getting to where i just am not going to anymore dr surgs or appts and just let whatever take its course . im tired of some times people look at me and say well they havent found cancer yet its not it is but more so dieases rare very bad leading in to cancer and not getting anwser from any one of the drs im seeing all in one some group. well i know so far its deff castlemans are ct and pet and more blood but i do have my dr last said he thinks its gentic and something else so cuz i have germ cell and ploylitype b and t cells and more directed in other ways so .. jim if you can help maybe instead of hospt in boston maybe a castlemans or gene specialist. thanks tanya
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    1. 4/4/2007 11:02 PM Jim wrote:
      
      TANYA,
      
      Like I stated earlier, I would need a letter from you designating me permission to discuss your specific medical information with the hospital and / or physician. I will make a call and see where the biopsy results are. They do take time to process but your primary should stay on top of this. Especially if you are symptomatic.
      
      You have an option of having your slides and blood results sent to another specialist for review - sort of like a second opinion. This sometimes works in having the original physician expedite your readings. I know the feeling because I have been there many times. The waiting game seems like an eternity.
      
      Regards,
      
      Jim Johnston,
      CD Executive Director
      
      Reply to this
10/7/2006 11:28 AM R Jordan wrote:
Welcome Back! And thanks again for all of your work. It is much appreciated by all of us who have had to, and will have to, navigate the world of a rare disorder. Hugs to everyone. Hope you are all well. Robyn
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10/11/2006 6:16 PM Jim Johnston, Executive Director wrote:
Thank you, Robyn.

JIM
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10/16/2006 3:40 AM Awad Al Harbi wrote:
Thanks Jim for starting this dialogue. It should be of great help to both CD patients and medics who would like to learn more about this rare disorder.
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10/17/2006 3:43 AM Hanne wrote:
I would also like to say that I'm very happy and grateful to see this dialogue back.
I haven't posted much, but I'm a faithful reader.
Thanks for all the hard work, Jim.
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10/21/2006 9:24 PM stephen parker wrote:
Dear Jim Johnston:

My apologies for delay in thanking you for most recent information. We will contact the physicians you named for Tx Plan.
Happy to say, that, as a result of our recent (this past week) personal consult,current clinic now wants to cooperate in referral you suggested and will make all records, test results and specimens available to Dr Barlogie to aid him in making Tx Plan.

We are deeply appreciative of your help.

With warmest regards.
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11/1/2006 12:10 PM Cyglenda wrote:
I had surgery in Feb 2005 and had 5 masses removed. At that time, I also had numerous small masses that due to size and number, it was decided not the try to remove them. I contine to have Ct scans, every 6 months, and we recently informed the masses were smaller. Is this common? Other than the Ct scans, are there any labs I should have performed routinely?
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1. 11/1/2006 7:42 PM Jim wrote:
  
  I would question whether you actually received a Castlemans Disease diagnosis (Dx). Normally, CD tumors or masses will not get smaller without medical intervention. If you did get a Dx of CD, how was it Dx? tissue biopsy? needle aspiration? consult?
  
  Finally, where are you writing from so in the event of a referral I know which facility is closest to you?
  
  Regards,
  
  Jim Johnston
  
  CD Executive Director
  
  Reply to this
  1. 11/3/2006 1:33 PM cyglenda wrote:
    My labs specimens were sent to the Department fo Defense Pathogoly Lab in Md. I had 5 masses removed. My physican informed me that my latest CT should the remaining masses were smaller...Is this not possible?
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    1. 11/6/2006 6:00 PM Jim wrote:
      
      I will forward your email to our medical staff but they will need additional information. Did you have any treatment? Are you stating that the remaining masses were reduced or just appeared to be smaller? This is not clear in your message. Please advise further and I can forward for a medical opinion or refer you directly to the physician.
      
      Regards,
      
      Jim Johnston
      CD Executive Director
      
      Reply to this
      1. 11/8/2006 10:01 AM CYGLENDA wrote:
        I had several masses removed, but was recently informed the remaining masses for some reason appear smaller. (No treatment except for the initial surgery).
        Thanks, Cyglenda
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        11/9/2006 7:51 PM Jim wrote:
        I have forwarded oto our medical staff. Am awaiting a response.
        
        Regards,
        
        Jim
        
        Reply to this
        11/20/2007 5:00 AM Cyglenda wrote:
        US Department of Defense
        Armed Forces Institute of Pathology
        
        Tissue sample
        
        Live in Killeen Texas
        Reply to this
      2. 11/9/2006 1:53 PM cyglenda wrote:
        Jim,
        I was informed the remaining masses had beome smaller, not a reduction in number.
        Thanks, Cyglenda
        Reply to this
        11/9/2006 7:38 PM Jim wrote:
        The masses may have gotten smaller but there still there and could be reversed. I recommend you continue seeing your specialist.
        
        Regards,
        
        Jim
        Reply to this
11/1/2006 7:46 PM MIA Lipstick wrote:
I am 44 years young and was diagnosed with Castleman's or Giant Lymphnoid Hyperplasia in 2002 by Yale pathologists. I had Hodgekin's Disease in 1978 at the age of 16; it returned in 1981. Now I have been suffering from long term side effects perhaps from all the nuclear medicine that safed my life years ago. Today, my condition has spread over the last six years from the right axilary to all the nodes in my chest, the left side, my lower stomach, both groin areas and even my legs have enlarged nodes behind each knee, in my thighs and some small ones on my shins and ankles. The lymph nodes keep growing and spreading and this has created major distress for me, both mentally as well as physically. Is there anybody out there with a similar case????? All the MD's say they have never heard of Hodgkin's turning into Castleman's, although it has been documented to go from Castleman's to a lymphoma. Please, I have been threw it all and my pet scans confirm that my condition is becoming worse every six months. What can I do to find a place that deals with this challenging illness? Is there someone who can delineate how the disease eventually kills you? I'ld like to be better prepared for the inevitable, most information only states that the prognosis is poor and you have 26 months after its onset... When is the onset? When do I count my months? I don't qualify for chemotherapy because I've had it twice in the past. Also I have periacardal effusion or fluid around my heart and am told that another couse of treatment would literally blow my heart out! Is this true. I hope someone responds to this message with the facts or at least some "real" advice beside another biopsy or playing the "watch and wait" game.
P.S. Would you consider Rituxin as a good alternative treatment? Does it have a history of success? That is the current game plan suggested for me at NYU Cancer Institute. I'm thinking of taking a pass card because without true know-how about my illness, the doctors only seem to be complicating my condition everytime they preform an invasive measure! Biopsies cause new nodes to enlarge and eventually grow big enough to replace the one removed and the needle biopsies cause my nodes to become furthur infected. What to do??? Please advice.
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1. 11/1/2006 8:08 PM Jim wrote:
  
  With your previous medical history I would seek a medical opinion from a specialist that deals with Castlemans Disease. How was CD diagnosed? What symptoms are you experiencing? With CD being such a rare disease, anything is possible. But, as Dr vanRhee has stated numerous times before, CD is not a death threat. It does need to be treated aggressively. I take it from your email you are in the New York area. There are two great CD specialist in that area (or close by). Dr Nikhil Munshi practices at Dana Farber in Boston, and Dr Brad Pohlman practices at the Cleveland clinic. I have met both of them and they both have seen CD patients in the past. If needed and you cant get to Boston or Cleveland, University of Arkansas for Medical Sciences is an option. Both Dr vanRhee and Dr Barlogie are represented on the International Castlemans Disease Board of Directors.
  
  Please advise if this does not clarify some of your concern. I am going to forward your email to our medical staff for a second opinion and hope to have a response for you by tomorrow.
  
  Regards,
  
  Jim Johnston
  CD Executive Director
  
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  1. 11/2/2006 5:40 PM MIA wrote:
    Thank-God someone is listening in the universe beside the lord!
    I am in Connecticut, so Boston is not so difficult for me to travel to, however, it is hard to manage a medical relationship with a MD so out of reach in case of emergency. I will try to follow up with Dr. Munshi if I do not recieve any satisfaction at my next visit to NYU on the 28th.
    I am also hopeful to hear some feedback from your staff! Most members of the medical community say "Castle-what? Never heard of it." This only compounds my frustrations and faith in the medical community.
    Symptoms: Mild lyphodemea of the upper right arm w/tremendous nerve pain shooting into my arms, & hands, which numbs my fingers. Nodes are pressing on my brachialplexus.
    I have pain in my lower Rt. abdomen and experience discofort & naseau each morning. My chest hurts at times in the center, like tight pinching close to my heart. Occasionally, I'll feel something "clip" under my Rt. rib cage.
    I am continuously diagnoised with a urinary tract infection which nevers seems to resolve itself, even on meds! Also my lower Rt. backside hurts most of the time. If I don't take my pain meds. and energy pill, I can't function. Brushing the back of my hair is often a real chore! I try to remain active and am very happy to be alive to complain, but fear that another biopsy would only yield the same results and would furthur spread CD at a faster rate. My Rt.hip area is full of fluid causing my lower body to look lopsided.
    I wake up with night sweats, but not everynight. The disease seems to wax and wane. Recently, the radiologists have discovered a tumors between my Rt. ankle and foot. There is also positive PET uptake before my fourth toe and the planter section of my foot. Now, my leg seems to turn in when I walk. I cannot walk barefoot well without limping. In the past, before the CD diagnosis I had three tumors removed from behind my left knee. Now the scan shows a weird hot spot in the center of my left thigh. Could this be from the lyphangiagram dye preformed in the 70's?
    Somedays, however, are just plain "bad days." My body shuts down and I need to rest for about 72 hours. I hate feeling like an invalid, so those days are short lived.
    Occasionally, I'll have severe itching spells, especially when a new node is swelling, or an old one becomes inflammed. If I comsume any alcohol,(even a minute amount), my chest feels heavy like I can't breathe properly, so of course, I don't indulge.
    There was some weight loss in the beginning, (approx.20 lbs) but I try to keep and maintain a decent "fight" weight. To look at me, one would never suspect any physical ailment. I'm attractive and "appear" to be in good health.
    I am most concered about this lymphnode in my Rt.groin/stomach area. and at times can feel it. I cushion myself with a pillow when I sit or sleep.
    My FSH level proved that I went through menapause in my mid 30's. My last period was March 2000.
    I also recieved lowdose radiation at YALE 2002.
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    1. 4/4/2007 12:03 AM tanya pell wrote:
      i too have a simler symptom actually the same its been about 2yrs and all they do cuz i do have have in my bones deep and burning cramps in moring i always wake up and struggle to move all my limbs and still nect my glucons is 85 and total palete cout is 343,000 and that getting up there i found out most of this on nov 05 biopsy still deff very rare bad disease i have b and t cell phentotype but there in mutation so i know and i see dr munshi hes not so good i only say this cuz he nerver there and he doesnt stay in good contact .. i just had another biop and he still in3 called me i have to ask my pain speclist at bwh.. well answer back up to you and any ever had bad experience with this dr munshi nickel please i beg let me know thanks tanya.
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      1. 4/4/2007 11:15 PM Jim wrote:
        TANYA,
        
        If you are not satisfied with the Tx received, please seek a second opinion. Let me know where you are located and I can see if there is a physician specializing in CD in that area.
        
        Regards,
        
        Jim Johnston,
        CD Executive Director
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        5/7/2008 5:31 AM Tonya wrote:
        Does anyone know if there are CD doctors at the Mayo Clinic in MN? I had my last mass removed there and was very pleased but don't seem to here any mention of Mayo Clinic for CD.
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        5/12/2008 1:54 PM Jim wrote:
        Tonya,
        
        There is a CD Phisician at the Mayo in MN. Please contact:
        
        Angela Dispenzieri, MD
        
        200 First Street SW
        
        Rochester, MN 58905
        
        dispenzieri.angela@mayo.edu
        
        (507) 284-2479
        
        Reply to this
2. 11/2/2006 8:04 PM Jim wrote:
  
  Reply from:Guido Tricot, MD, PhD
                    Professor of Medicine
                    University of Arkansas for Medical Sciences
                    Little Rock AR
  
  Although not impossible, it is unusual to develop CD after Hodgkin’s disease. The most important issue is to exclude that what patient has is non- Hodgkin’s lymphoma. I would strongly urge patient to have the lymph node reviewed at a place with a large experience in lymphoma and CD. I do not understand why patient can not have more chemotherapy if that is the indicated treatment. There is certainly a way to help this patient and there is no reason to give up hope. We will be more than happy to see him in our clinic.
  
  Reply to this
3. 11/2/2006 8:10 PM Jim wrote:
  Reply from: Frits vanRhee
                     Professor of Medicine
                     University of Arkansas for Medical Sciences
                     Little Rock AR
                     (501) 296-1503 ext 1547
  
  In order to advice you properly I would suggest you come and see me with all your biopsy material and your past medical history. I agree that one cannot biospy every single node to see whether it is Hodgkin's or Castleman's Disease. Sometimes one has to make a practical decision with the best available data. Your case is obvious complex and an independent opinion can sometimes help, particularly from some one who sees both Hodgkin's and sees amny patients with castleman;'s disease You will certainly need treatment even if it is Castleman's disease. If it is hyaline vascular variety then you may benefit from rituxan and steroids.   If you have high IL6 levels you may benefit from anti-IL6 antibody therapy.   Plasmacytic variant would require a duifferent approach. if the weight of the evidence points to Hodgkin's then you would require chemotherapy and a stem cell transplant.
  
  Again, I will be happy to advice.
  
  Reply to this
2/16/2007 3:00 AM Soren wrote:
Is there an association between Castleman, POEMS and Langerhans Cell Histiocytosis?

For me it all started with numbness in toes 2000.
Blood test 2002 revealed MGUS IGG lambda 5 g/l, bone marrow biopsy showed 2 % plasma cells, over arm and duodenum biopsies were negative on Amyloidosis.
2003 skin rash - biopsy showed eosinophilia granulocytes.
2004 enlarged lymph nodes in armpits - fine needle biopsy sparse material no malignant. New skin biopsy - histiocytosis, distinct reactive to CD1a, with lymphocyte infiltration and eosinofils - dx LCH.
2005 CT-scan thorax and abdomen - negative, worsened polyneuropathy, dx POEMS no endocrinopathy.
2007 Jan new CT no answer yet.
M-component unchanged over the years. Planned starting corticostertoid treatment.
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1. 2/16/2007 6:36 PM Jim wrote:
  
  Soren,
  
  I have forwarded your email to Dr Dispenzeiri for review. She is both a CD and POEMS Specialist and will be able to clearly provide a medical interpretation for you.
  
  Regards,
  
  JIM
  
  Reply to this
2. 2/17/2007 10:25 AM Jim wrote:
  
  REPLY FROM DR DISPENZIERI (Poems v Langerhans Cell Histocytosis):
  
  This is a tough one. The key is being 100% certain of one’s pathology. Some histiocytes don’t always mean LCH. Neuropathy is distinctly unusual for LCH. You don’t mention your age or whether you have bone lesions. About 3% of patients over age 50 will have a MGUS with an increasing incidence with every decade, so that could be a reason for the monoclonal protein.
  
  You may need a second opinion with regards to the pathologic specimens (you can have sent to a center of excellence w/o accompanying them) or perhaps a full second opinion at a tertiary facility.
  
  Angela Dispenzieri, M.D.
  Associate Professor of Medicine
  Mayo Clinic
  200 First Street SW
  Rochester, MN 55905
  Phone: 507 284-2479
  
  Reply to this
2/19/2007 3:20 AM Soren wrote:
Thank you for your quick reply!

I am born 1950.

A skeletal X-ray was done 2002 – “one suspected Myeloma destruction in right lower part of pelvis”.
New X-ray 2004 of hips and pelvis – “no artrosis or sign of myeloma”

The rash started 2002 with small itching blisters coming and going at various places (arm, neck abdomen, back, groin, thighs and legs). First biopsy in lower abdomen was done at the Dermatology institution at Falu hospital 2003 – suspecting morphea – interpreted as inflammatory (eczema) with eosinophils and granulocytes.

In 2004 I also got nodules and rash in the scalp with seborrhoeic like crusts – still have it. A new biopsy in left thigh was done at Sophiahemmet in Stockholm – suspicion papular mucinosis – interpreted at Karolinska University Hospital, Department of Pathology by Bengt Sandstedt – “skin punch that centrally contains a superficial focus of bright, histiocytic cells that partly infiltrate basal epidermis. In the surrounding slight infiltration with lymphocytes. Otherwise eosinophiles are found. The histiocytes show distinct reactivity for CD1a, which taken together with the overall picture actually address that the patient (despite age) has got a Langerhans Cell histiocytosis that requires further evaluation” (not sure for the exact translation).

My immunoglobulin’s are:

IgG Poly ~0,35 g/dl
IgG Mono ~0,55 g/dl
IgA ~0,06 g/dl
IgM ~0,03 g/dl
with slight reduced background gamma.

With best regards
Soren
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4/3/2007 9:07 PM PARBATIE SAMAROO wrote:
I WAS DX WITH CD IN APRIL 2003. SPENT 3 MTHS INPATIENT IN AND OUT OF ICU, SEVERAL BLOOD BORNE INFECTIONS,TREMENDOUS WEIGHT GAIN, CHF, RENAL FAILURE, DM, HTN, I DEVEOPLED THE WHOLE NINE YARDS AND THEN SOME. I WAS PARALIZED FROM THE WAIST DOWN, DIDI THE REHAB THING WENT BACT TO ICU, HAD PLASMPHERESIS, EVENTUALLY SENT HOME WITHOUT A PROGNOSIS, DIDI RESEARCH, FOUND DR. AT DANA FABER, STILL NO EXPLAINATION HOW I GOT THIS DISEASE, SINCE THEN HAS SEEN ANOTHER SPEACIALIST AT NY PRES HOSP, SAME UNANSWERED QUESTIONS, HAVE TO TAKE STRONG PAIN KILLERS, ANXIETY NEDS, SLEEP MEDS, DIABETIC MED, HYPERTENSION MEDS AND DEPRESSION MEDS, IN ORDER TO HAVE SOME SORT OF A NORMAL LIFE. I CAN'T WALK MORE THAN A BLOCK I GASP FOR AIR, MY ANKLES GET SO SWOLLEN I NEED ASSISTANCE TO WALK BACK. BEFORE CD I WAS AN AVID RUNNER, LOVE EXERCISE, CROSS COUNTRY SIGHT SEEIGN LOVED LIFE IN GENERAL. NOW AFTER 4 YRS I CAN'T SIT STILL FOR MORE THAN 2 MINUTES I GET CHRONIC BACK PAIN AND GENARAL JOINT SWELLING. I HAVE ACCEPTED MY DISEASE BUT IS THIS WAS I HAVE TO LOOK FORWARD TO FOR THE REST OF MY LIFE. I AM ONLY 36YEARS FEMALE.PLEASE HELP ME SOMETIMES I THINK I AM GOING OUT OF MY MIND.
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1. 4/4/2007 11:22 PM Jim wrote:
  PARBATIE,
  
  My first question is have you ever been given a clear-cut diagnosis? Although I am not a physician but patient myself, it seems as if you have may things going on; each needing different Tx plans. I am going to refer your email to one of our Specialists and see what they think. Are you up to traveling? And, where are you located?
  
  Regards,
  
  Jim Johnston,
  CD Executive Director
  Reply to this
10/20/2007 7:02 AM Tom Holmes wrote:
Jim, I was wondering if there has been a new count on the number of CD patients? I was told I was the 16th person when I went to ACRC and was diagnoised in 1992. I went through the anti IL6 treatment 3 times under Dr. Munshi's care and Thank God I'm still here. Just wanted to know if there was a new listing with the number of CD patients. Thanks! Tom Holmes Oxford, Ga.
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1. 10/28/2007 6:12 PM Jim wrote:
  Tom,
  
  I believe you might have been the sixteenth patient there at ACRC. Overall, including international, there are roughly 4K CD patients. The U.S. makes up about 1500 (which I can account for) over the past twelve years of the CD Org.
  
  As to the registry, yes you are there. Since the new page is up, I will be sending out another survey to populate the "NEW" CD database so that all info is accurate. This should happen in the first quarter of the new year.
  
  Regards,
  
  JIM
  Reply to this
  1. 10/28/2007 8:59 PM Laurie wrote:
    Jim,
    
    Just out of curiosity, in your database, how many of the CD patients have the plasma cell variant?
    
    I really like the new home page
    Reply to this
    1. 11/13/2007 11:13 AM Jim wrote:
      Laurie,
      
      Sorry for the lag time in response but I have been dealing with my own medical crisis here at home (unrelated to CD but just as serious as Multicentric).
      
      I am in the process of working with a database manager that has the knowledge to convert Excel data to Access. In the meantime, I am gathering every bit of evidence, and data for the new database so we may have an "accurate to the site" count of the disease. As of now, I can only guesstimate that 10-15% of the overall CD population are Plasma Cell or mixed with Plasma Cell.
      
      Regards,
      
      Jim Johnston,
      ICDO Executive Director
      Santa Fe, NM
      Reply to this
      1. 11/15/2007 6:36 AM Anonymous wrote:
        Sorry your having problems with your health again. Seems like it's always something even if it's not the CD. Do you think this is because our immune systems are weakened or is there some other underlying "thing" going on?
        
        I've started having new problems--other than the usual ones I've been having that they say AREN'T the CD. I've been having facial numbness and tingling just on the right side of my face. It feels like it does when you get novocain and it starts to wear off. There have been a couple of times when I've had difficulty with swallowing. They've tested for a multitude of autoimmune diseases, but everything comes back fine. I just feel like a medical anomaly.
        
        Laurie
        Reply to this
        11/16/2007 7:58 PM Jim wrote:
        Laurie,
        
        Thank you for the concern. I have not said too much here on the site but I underwent chemo 4 mos ago to reduce the size of the prostate so we could proceed with the radiation seed implants. Dx - prostate cancer (stage one), undetectable by a Gleason r PSA score. biopsy mapping found it during a routine exam after a bout with malignant carcinoma of the bladder. Bladder is unremarkable.
        
        I am truly convinced (non medical opinion) that the compromised immune system has something to do with this just as it plays a part with other patients that contract other auto-immune disorders before being Dx with CD.
        
        As far as the numbness, check with you Neurologist and see if it is attributed to CD or may also be related to MS or Bells Palsy (from a personal experience and the symptoms you are describing. Hope this helps. Please advise if further clarification is necessary.
        
        Regards,
        
        Jim Johnston
        ICDO Executive Director
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7/7/2008 11:39 AM kerry wrote:
i was wondering if there has been any causes found that cause this disease my daughter was diagnosed when she was only 3 yrs old. she is now 9 and we have found more tumors
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1. 7/10/2008 12:24 PM Jim wrote:
  Kerry,
  
  I will forward your email to our physicians. I hope to have a response posted within a few days.
  
  Regards,
  Jim Johnston,
  Executive Director
  Reply to this
2. 7/10/2008 1:20 PM Jim wrote:
  Response to causes of CD.
  
  Guido Tricot MD (University of Utah) WRITES:
  
  Very little is known about the cause of CD. It is more frequent in patients with HIV, but also occurs also in non-HIV patients. It is probably an immune system malfunction.
  
  Guido Tricot, MD
  
  Director of MTRC
  (Myeloma Transplant Research Center)
  
  University of Utah School of Medicine
  
  30 North 1900 East, Room 5C402
  
  Salt Lake City, Utah 84132
  
  (801) 585-3229
  
  Fax: (801) 585-3432
  
  Reply to this
7/19/2008 7:55 AM Bekka wrote:
My daughter at the age of 9 mo. old had experienced edema on both sides of her neck. The ER Dr. suggested that I take her to specialist. It was suggested from the oncologist for her to be brought to the "Children mercy hosp.", (in KC, MO.) Missouri is the state that we live in. The Dr. Dx her with infected lymph nodes and the Tx plan was IV antibiotics. She stayed for 2 wks.
Nothing else occurred until she was about 9 yrs later. I took her to the ER room. She complained of her left side hurting. ER Dr. Tx was to consume H2O and so she could eliminate her bowels. At the age of 14 we went through the same thing.
Then at the age 17 she starting experiencing a lot of sleeping and having no energy. Also she had edema on the right side of her neck.
I am thinking to myself, (OMG here we go again). Our PCP kept prescribing her antibiotics. After the 3rd dose I asked the Dr. to order a ct. scan. I needed and wanted clarification. I felt we had been getting the run around for yrs. The Dr. order ct scan. It showed she had several lymph nodes that looked abnormal. So the ENT preformed the biopsies. Dr removed 3 lymph nodes that was told to me was the sizes of 2 golf balls. I was told that there was other lymph nodes that were enlarged but not enough to removed. We played the waiting just like everyone else. They said that they would send the biopsies off and we should hear something in about 7 days. Well, they ended up having to sending it to the University of Missouri. No diagnoses at this time. Not having success finding Dx they sent the biopsies to the Mayo clinic in Mn. Finally received a Dx of CD. Of course I had never heard of it. I did as much research as I could. My daughters Dr. explained that the treatment plan for unicentric CD was surgery. Which we already completed. They advised ct scans every 6 mo. and visits to the oncologists.
I forgot to mention that my daughter had Dx with a learning disability, with short term/long term memory lost. This affected from the 4th grade to present time. So I have to be her voice and advocate. She's now 20 yrs old.
In the last 6 mo. she has experiencing fatigue, night sweats, pains in her lower abdomen, pains in left side of her stomach, pain in her chest. The testing that has been done in the last 6 mo. is 3 ct scans of her lower right side, left side of her stomach. A PET scan from her neck to the pelvis area. Also lab wk. has been done. The results of the PET scan was told to us that they concerned the CD may be in the area of her appendix and right ovaries. Her GYN Dx her with having a sm. cyst on her right ovaries. So they want to do a biopsies. The Dr. also told us that there was a rather large area in her upper stomach area and her chest area is a large black spot. Ct. scan and possible biopsies of that area of the chest.
Now since I've explained her case to you, my question is.
With what they found from the PET scan results could the big black spot be a cluster of lymph nodes with CD?
TY
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1. 7/28/2008 9:09 AM Jim wrote:
  Bekka,
  
       I will caveat this email with the caption that I am not a physician but like yourself, I am a patient advocate for patients Dx with Castlemans Disease (CD). It appears that you have been keeping a thorough journal of your daughters medical attention but there seem to be a few things missing from my experience with CD).
  
      Testing is critical to the Dx of CD and your notes do not reflect any specific blood work or Pathology reports other than those that Dx CD. There are specific blood tests that the CD SPecialists at various facilities throughout the U.S. perform to test for variant of CD and other auto immune disorder that may mask the CD Dx. Was there any specific blood work performed on your daughter while she was in the care of physicians? This will be important t read when she is seen by other CD physicians. Please see if you can obtain any report (Pathology, Radiology, or blood work) that any be used for reference any Dx purposes. In the meantime, I will pass this email to a team of our Specialists to seek a "medical opinion" of what you have written. I will be back in touch.
  
      Regards,
  
      Jim Johnston,
      CD Executive Director
  Reply to this

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