International Castlemans Disease Organization

Comments

Display comments as (Linear | Threaded)

10/16/2006 5:27 PM Kelleigh R wrote:
I am curious as to what is happening with a CD conference? Last I knew was Madrid, but heard there may have been a change.
Reply to this
10/24/2006 3:37 PM Debbie Wiesel wrote:
Jim - I am going for a physical soon and cannot find a copy of the yearly bloodwork I should have done to check levels for Castleman's Disease -could you please provide me with a full list of the bloodwork my doctor should be testing for? Thanks
Debbie
Reply to this
1. 10/26/2006 6:44 PM Jim wrote:
  
  Debbie,
  
  Here are the test performeed at UAMS -
  
  *Castlemans Blood Work performed by ACRC*
  
  Complete Blood Count (CBC)
  
  Platelets
  
  Hemoglobin
  
  Electrolytes
  
  Bun / Creatnine
  
  24-hr urine total protein
  
  24-hr urine Myeloma protein
  
  Bone marrow aspiration*
  
  Serum pro elctro phresis
  
  Reply to this
10/25/2006 4:30 PM Hannah wrote:
Is there a test that detects elevated IL-6? My last bloodwork results showed I have increased Sedimentation Rate, C-reactive protein, and Fibrinogen and I read that those can indicate an elevation in IL-6.
Reply to this
1. 1/2/2007 5:55 AM tanya wrote:
  I HAVE CD I WAS SEEING A REG PC DOCTOR SHE DIDNT UNDERSTAND WHY MY SED RATE WAS HIGH AND DID ALL REGULAR TESTING NOTHING ELSE ONE CAME BACK WITH ECUVULANT LIME DIEASE. BUT 2ED TEST NEG. BUT I THIK SED RATE IS A SIGN WHEN THE DOCTOR CANT FIND ANYTHING LIKE ARTRITIS OR INFLAMTION FROM INFECTION ECT.
  Reply to this
10/27/2006 8:25 PM Dawn Randolph wrote:
i had a hard 3centimeter lymph node removed and a biopsy done that showed I had Mantle Cell Hyperplasia. My Dr told me that it could turn into Lymphoma.Does this sound like it could be Castlemans?
Reply to this
1. 10/28/2006 4:23 AM Jim wrote:
  
  Dawn, I will forward for a medical opinion.
  
  Regards,
  
  Jim Johnston, Executive Director
  
  Reply to this
2. 10/28/2006 3:01 PM Jim wrote:
  
  Reply from Frits Van Rhee, M.D.
  
  Suggest review of node at experienced lymphoma center eg. Omaha medical center. Nebraska. Special stains may help to determine whether this is lymphoma.
  
  Suggest full work up with CT PET. Bone marrow CT scan neck chest abdomen.
  
  I woulld consult Dr Julie Vose at the University of Nebraska.
  
  She is one of the leading lymphoma experts in the USA.
  
  Likely not to be Castleman's
  
  Reply to this
3. 2/16/2007 12:26 AM tanya wrote:
  dawn ,, i had a lymph node same size almost big enough to biopsy take out all. and my pathology report said something about mantle cell .. im not sure but i do think it was hyperplasia. did your report say positive for scartted plasma cells and large not cells they had a name but cells are refered to steinberg cells large cells seen. have you ever heard of dr munshi from dana farber. also in my biop report path. germ stain said rare plolys. my lymp node was in the left supraclavicular area left collar bone. and do you have any pain like all body deep throbbing bone pain that just never goes away with pain meds strong or rest
  Reply to this
10/28/2006 11:02 PM anne hotta wrote:
Dear Jim
It is wonderful to have you back. My husband has MCD-PC and we were on our way to see Dr Nishimoto in Japan when I wrote last( my husband is japanese and we live in Melbourne, Australia) The visit gave us a lot of knowledge but my husband continues to deteriorate. I sent Dr Van Rhee some test results by post about 3 weeks ago and am hoping he got them. I am sure he will give me his opinion. My question now is how long can a person continue on cortisone (prednisolone) or is it a trade off? My husband has stopped working, he has extreme fatigue, skin rashes, inability to move neck, shoulders and a malaise which is very worrying.
Thank you again and I am sure you know that you are our life line,
Anne Hotta
Reply to this
1. 10/29/2006 3:48 PM Jim wrote:
  Anne,
  
  I will forward your email address and dialogue to Dr vanRhee to make sure he did in fact receive your message. With this rare disease, he is very aware of how important an early medical opinion is. He almost always responds immediately (providing he is not on travel).
  
  With respect to your husbands deteriorating condition, I suggest you get to Dr Nishimoto stat for a consult. He is a fantastic CD physician and a good friend. Please give him my regards. As to the request for how long a patient may continue on prednisone, I will have to refer this medical opinion to the physicians and should have an answer for you w/i 24 hrs.
  
  Please keep me informed and if your husbands condition worsens before the Nishimoto visit, we may want to have Dr van Rhee help with discussion and also work with Dr Nishimoto on a treatment plan. Will advise .
  
  Regards,
  
  Jim Johnston,
  CD Executive Director
  Santa Fe, NM
  Reply to this
10/30/2006 11:58 AM Debbie Wiesel wrote:
I just saw my ENT for my yearly checkup on my neck following my mass removal two years ago giving me the diagnosis of Hylaine Vascular Castleman's Disease. The mass from my neck was removed compelete at that time. Following that surgery i had a Cat scan every 6 months for the past two years and now it's been a full year since I had one done so I will be having one sometime this month. My ENT was wondering if after this Cat scan, if everything looked fine - I could wait a few years before having another one done or did I really have to have one done each year - just wondering what the thought process was for the HV-CD type? Thanks.
Debbie
Reply to this
1. 10/30/2006 7:56 PM Jim wrote:
  
  Debbie,
  
  I am not a clinician but merely a patient of HVCD like yourself. I have to recommend that you speak to a physician that has a history of treating CD and is familiar with the disease. This way you get a good sound medical opinion.
  
  My physicians that treated me at the University of Arkansas for Medical Sciences specifically told me that there was protocol that needed to be followed to ensure there was not a recurrence of CD. If this requires annual CT's or alternating CT v MRI annually, that is what I will do. We do now have evidence that this disease (HVCD as well as the other two variants) may recur. This is a decision that you have to make with your physician. A diagnosis of CD requires an ongoing maintenance program that entails having annual lab work and radiology performed.
  
  Finally, listen to your body and watch for symptoms that you may have had before the first Dx of CD.
  
  Hope this helps but you do need to consult a medical physician that is familiar with this disease or at least have a telephone consult with one.
  
  Regards,
  
  Jim Johnston
  CD Executive Director
  Santa Fe, NM
  
  Reply to this
11/1/2006 12:50 PM Hannah wrote:
I had a 6.5 x 4.2 x 2 cm Castleman lymph node (thought to be unicentric HV) removed from my neck 10 months ago. The node was on the left side near the sternocleidomastoid muscle and the internal jugular vein. I am now having pain and swelling in my face and neck on the left side. I was diagnosed as having carotidynia. The pain is constant, not throbbing, and I have been running a 99.8 temp. Does this sound consistent with carotidynia or should I see another doctor?
Reply to this
1. 11/1/2006 7:55 PM Jim wrote:
  
  I would get a second opinion probably from a specialist. One problem with the resection of CD tumors is the fact that this disease tends to attach to organs that it feeds off of. My mass was a mediastinal mass near the phrenic nerve. During resection, there is a potential risk of nicking a muscle or tissue. In my case, the phrenic nerve was nicked and I have partial use of the left diaphragm. These are all risks that need to be taken into consideration before aggressive treatment. Also, the size of the mass has risks based on its location. The opposite side of the coin is you do not want these masses to continue to grow. That is why an aggressive course is required early in the stage of the disease while the mass(es) is still surgically resectable.
  
  As always, consult with your specialist and if you do not feel comfortable with the treatment plan or discussion, seek a second opinion.
  
  Regards,
  
  Jim Johnston
  CD Executive Director
  
  Reply to this
11/4/2006 8:07 PM Hannah wrote:
My question is if anyone had weird symptoms before finding they had a Castleman tumor. I ask this because I have been diagnosed with unicentric hyaline vascular type (hiv-) and before the node was found and removed I had been diagnosed with anxiety disorder, depression, fibromyalgia, ezcema, sleeping problems, and I had canker sores all the time. My surgery was last December and since then I have had no problems with any of those things. I was on Zoloft, Adderall, Nortriptyline, and ointment for my hands; two months after the surgery, I went off all those medications and have been off ever since with no recurrence. No medical doctor has told me that those things were from the node, but I know they had to be. As soon as I woke up from surgery, I felt different mentally. I just knew I was better.
Reply to this
1. 11/6/2006 6:21 PM Jim wrote:
  
  Hannah,
  
  I can only report that the symptoms you had may or may not be related to CD. I posed the same question to my physician and was told that the rarity of the disease sometimes has both patient and physician wondering if certain conditions are attributed to CD. If the symptoms are gone post operatively, I think you have answered your own question. Keep a maintenance program of blood work and radiology since we do have evidence of recurrences.
  
  Regards,
  
  Jim Johnston,
  CD Executive Director
  
  Reply to this
2. 11/8/2006 12:30 AM gary jeffres wrote:
  I have fibromyalgia that started 14 months before the hv castleman's was found.
  I have the symptoms that look like sjogren's syndrome and am trying to get a DX on that from the VA at this time. mouth ulcers and pain inside the mouth. dry eyes and mouth.
  Reply to this
  1. 11/11/2006 8:26 PM Jim wrote:
    
    Gary,
    
    I will forward this to our medical staff for an opinion and get back to you. Sorry for gettinh bsck so late.
    
    Regards,
    
    Jim Johnston,
    CD Executive Director
    
    Reply to this
  2. 11/12/2006 6:59 PM Jim wrote:
    
    REPLY from Dr. Guido Tricot:
    
    Sjogren,s syndrome should be diagnosed by a biopsy of involved tissue. I would also take biopsies and cultures from the ulcers to see if there is a specific infection.
    
    Guido Tricot, M.D., Ph.D.
    Director
    Myeloma Transplant Research Center
    University of Arkansas for Medical Sciences
    Little Rock, AR
    
    Reply to this
11/8/2006 5:59 AM Jennifer Kifferly wrote:
I was wondering if somebody might have side affects or a negative outcome of having lymphnodes removed?
Reply to this
1. 11/9/2006 7:54 PM Jim wrote:
  Is it possible? I will forward to our medical staff to see what affects if any are possible
  
  Regards,
  
  Jim
  Reply to this
2. 2/16/2007 12:52 AM tanya wrote:
  yes i only had 1 but castlemans alone takes good cells away cuz your own body attacks itself but just with 1 i felt more weak and unable to work as well now im on std... so its possible who do you see for a doctor.
  Reply to this
11/10/2006 6:14 AM George Mortimer wrote:
I have a 15yrs old daughter who has just been diagnosed with castlenmans she has no more lumps the one in her neck has been removed and was benign but she still has to have a bone marrow test and another scan of her lymph nodes is this normal george chesterfield england
Reply to this
1. 11/10/2006 9:57 AM Jim wrote:
  
  George,
  
  I am not a physician but am a patient myself and have been studying the effects of CD for over 15 years.
  
  According to protocols utilized in the USA, specifically, the University of Arkansas for Medical Sciences (UAMS), this is standard procedure and periodic check-up should be performed to ensure that a recurrence does not occur. A bone marrow is standard practice for UAMS for patients with CD. Scans should be performed every six mos post operative with annual CT v. x-rays including blood work annually thereafter.
  
  I hope this helps. Please advise if further guidance or a referral to a specialist in the U.S. is required for a consult.
  
  Regards,
  
  Jim Johnston
  CD Executive Director"Santa Fe, NM USA
  
  Reply to this
  1. 11/10/2006 3:27 PM Carole wrote:
    I am 39 and recently diagnosed with plasmacytic/multicentric Castleman's. When I was 15, I had a benign parotid tumor removed (5x3x2cm). This was in the early 80s ... it was not diagnosed as CD at the time, but reviewing the the old pathology report, it states there were 2 red nodules that "appear to be lymph nodes on the surface of the tumor" (the nodes were not biopsied).
    
    Five years prior to parotid tumor removal, I had developed intense itching, hives, & rash that I never associated with the tumor. However, now that I look back, the itching/hives went away after the surgery and did not return until 5 years ago, along with other symptoms.
    
    I do think my parotid tumor was caused by CD and I was in remission for 20 years. Of course, every case is different, but doesn't hurt to self-monitor for symptoms in the future.
    
    I also have Frey's Syndrome/gustatory sweating in the area as a result of the surgery. I hear they use different surgical procedures now to try and minimize the side effect?
    
    Carole
    Reply to this
    1. 11/10/2006 7:01 PM Jim wrote:
      Carole,
      
      I need to preface this email as always that I am not a physician but merely a patient and researcher of Castlemans Disease for over fifteen years. From your email, I too had the same symptoms as have other patients of CD. This seems to be one of the systemic problems patients encounter until receiving treatment whether it be drug therapy or aggressive surgical resection.
      
      I have been in remission for over fifteen years and continue to have annual CTs and blood work performed to monitor the CD. We do have evidence of recurrence so maintenance is important.
      
      Whether or not your paratoid tumor was caused by CD is still in the hands of the CD researchers to determine (at facilities Like the University of Arkansas for Medical Services- UAMS). As I have stated before, many CD patients tend to present more than one major illness. We need to request a medical opinion from one medical staff as to whether youe illnesses are relaated or not. I will present this c ase to our staff for an opinion.
      
      Regards,
      
      Jim Johnston,
      CD Executive Director
      Reply to this
      1. 11/11/2006 7:33 PM Jim wrote:
        
        REPLY from Guido Tricot, M.D., Ph.D.
        
        Carole,
        
        Here is the response from Dr Tricot. I suggest you coordinate sending the slides to UAMS for further diagnosis (Dx).
        
        Dr Tricot writes:
        
        It appears to me unlikely that her parotid tumor was related to CD, but only review of the slides of the tumor can answer that question.
        
        Guido Tricot, M.D., Ph. D.
        Director
        Myeloma Transplant Research Center
        University of Arkansas for Medical Sciences
        Little Rock, AR
        (877) 635-7240
        
        Reply to this
      2. 11/12/2006 7:41 PM Carole wrote:
        Thanks for the responses. My inguinal biopsy from last month is going to UAMS, diagnosed 3xs elsewhere as CD. As the parotid tumor was from 1982, I'm not sure if they would still have the slides? At this point, it doesn't seem to matter--there is enough to focus on just going forward.
        
        Carole
        Reply to this
11/14/2006 10:02 AM Stacy wrote:
Hi Jim,
I have already posted on the first time CD forum.
I am female 36 caucasian and I guess I fit the mold except for me being female.
The most info I have is from your site and it is greatly appreciated. Since this is such a rare disease how many people actually have it? I have read somewhere 200 in the US or maybe I am mistaken?
Since my CD was in a lymph node and I have not yet had a scan would that indicate that it might possibly be in another organ and the lymph node was just filtering out the invader and it started a tumor there?
I have so many questions, what about do you know of any help from the government or anyone for people without insurance for treatment of CD disease.
I am currently in Nursing school though will not graduate for about 1 1/2 years and have no insurance until then or when I am working. Do you think treatment of this can wait that long?
This episode came about during a pregnancy and I first noticed the lump in my parotid gland around 20 weeks into the pregnancy. Would this have shown up because of the pregnancy or would it have shown up anyways?
pregnant or not?
Well thanks for listening and for your earlier response.

The ENT (ears nose throat) doctors who treated me dont have any answers and only have said they are refering me to a medical doctor who will know about this and who will set me up for a scan, the medical doctor who ever it is has not yet called me or scheduled an appt.

Thanks I have gotten alot form your site.

Stacy
Oklahoma
Reply to this
1. 11/14/2006 7:48 PM Jim wrote:
  
  Stacy,
  
  I don't think you can wait 1.5 yrs but then I am not a physician. I am going to forward this to our medical staff and get a couple of opinions by tomorrow for you. Stay tunned.
  
  Regards,
  
  Jim Johnston,
  CD Executive Director
  
  Reply to this
2. 11/15/2006 4:46 PM Jim wrote:
  She should have a PET scan. However, if she hasno insurance and no particular complaints I would wait to do so until she has insurance.
  
  Guido Tricot, MD, PhD
  Director of Clinical Research
  University of Arkansas for Medical Sciences
  Myeloma Institute for Research and Therapy
  Little Rock, AR
  Reply to this
11/18/2006 9:14 AM amy wrote:
sorry this is so long. concerns over concurrent malignant disease or recurrent disease. I have a 12 yr history with diagnosis of HVC. Mass has proven to be inoperable and has been embolized. Constitutional symtoms have been minor and very intermittant. Long term anemia with low Fe levels. Pain, fatigue, and intermittant peroids with increased fatigue and sweats.
Recently pain and fatigue have become more persistant and bothersome. Repeat CT scan was performed with no major changes in the right retroperitoneum ( original location of mass ) but a pulmonary nodule was noted. Scan was of abdomin and pelvis so chest veiw was limited. Due to the pulmonary nodule I underwent a PET/CT with focus on the nodule and lymph nodes.
The results of the PET were inconclusive. The pulmonary nodule showed mild activity with a SUV of 1.9. The facility threshold is 2.5. Small areas of increased activity also appeared the left hilum. I do not have an uptake ratio for those.
The area in the right psoas originally diagnosed as HV type results are " there is noted to be a fairly prominent focus of uptake related to the right retroperitoneum near where there is being prior sugery..."
My concerns if this is multicentric disease wouldn't the areas of activity be more diffuse and constitutional symptoms even more severe ? Has any one had a PET for hyline vascular type. What type of metabolic activity is normal for HV. My biggest concern is that this is two concurrent disorders castleman disease and malignancy.
My appointment with my hemotologist is this friday. I've been a "frequent flyer" for over 10 years and can usually get information over the phone... so wanting to discuss results in person is new and rather stressfull.
Does anyone have suggestions for questions ????
Reply to this
1. 11/18/2006 6:57 PM Jim wrote:
  I will forward this to our medical staff for a cross examination opinion. Will advise as soon as its available and I will post the results here.
  
  Regards,
  
  Jim Johnston, Executive Director,
  Santa Fe NM
  Reply to this
2. 11/23/2006 6:26 PM Jim wrote:
  REPLY from Dr. Frits vanRhee, UAMS, Little Rock, AR
  
  I do CT-PET's regularly for Castleman's disease. The SUV related to lean body mass is usually not as high as in lymphoma. A SUV value of say >10 would certainly ring alarm bells in terms of malignancy.
  
  Nodules in the lung are a common finding on CT-scans and may not necessarily related to Castleman's disease, but could be due to old infection. Usually radiologist will ring the alrm bell very quickly if they feel a lung cancer has to be excluded.
  
  Regarding the foucs in the retroperitoneum. If there is a mass visible on the CTscan and signifcant uptake on the PET then percutaneous CTguided biopsy is indicated to 1) rule out persisten Castleman's disease and 2) rule out lymphoma.
  
  ESR and CRP and IL6 levels will tell you whether your pain, fatigue, and intermittent periods with increased fatigue and sweats could be due to Castleman's disease. However, ESR and CRP and IL6 levels can also be elevated in symptomatic lymphoma so some clinical judgement is necessary here.
  
  I would be quite willing to see you.
  
  Reply to this
  1. 11/30/2006 3:45 PM laurette wrote:
    I was diagnosed with Cattleman's in 2005 and had 5 Large nodes removed.I had been feeling a lot better and even gained back all the weight I lost but now I'm feeling poorly and have not found a doctor who understands this disease. I live in N Y and have been treated at Memorial Slone Kettering. Even they have a problem dealing and treating me. Can you please tell me where to find a doctor who knows Cattleman's and how to treat it.
    
    Thank You,
    Laurette
    Reply to this
    1. 12/1/2006 10:01 PM Jim wrote:
      
      Laurette,
      
      In the New York area, if you are not satisfied with the diagnosis or information received, please seek a second opinion from a physician that is familiar with diagnosing and treating the disease. The closest physician I have in your area is as follows:
      
      Dr. Niikhil Munshi
      Dana Farber Harvard Medical School
      44 Binney Street M557
      Boston, MA USA 02115
      (617) 632-2681
      Nikhil_Munshi@dci.harvard.edu
      
      Please advise if further information is required.
      
      Regards,
      
      JIM
      
      Reply to this
      1. 12/3/2006 11:58 PM MIA wrote:
        Dear Laurette,
        I live in Connecticut and spent three years with an oncologist at YALE N.H. hospital. I, too, also became frustrated with the ignorance regarding this illness! Everyone there tended to dismiss my complaints as just that, and not symptoms!
        My first pathology report stated that I had: Giant Lymphnoid Hyperplasea. Because CD is so rare, he must have mentally dismissed the report in a search futile search for other causes. I went through neurological torture, courses of steroid and radiation treatments all to no avail! My condition continues to slowly get worse.
        I agree with you that we need a local doctor willing to investigate the facts regarding CD. and who is up to date on how to diagnose and treat patients in the tri-state area.
        Every pathology report, aside from the first one, since reads: Transformation of the geriminal cell layers. "What does that mean?" I've asked numerous doctors, who respond: "It means you don't have cancer!" Like my illness is supposed to be some type of consulation prize for NOT having the big C.
        When I asked my current oncologist: "So there's still no definative diagnosis for me?"
        Dr. Edward Amorosi responds: "Not as yet, but I'll do my darnest!" in a reassuring tone. To be honest, he efforts haven't revealed any new insights, but he IS a good listener and very compassionate to my cause and that's tremendously important in order for one to heal.
        So, Laurette, my response to you is hopefully one of solice, compassion and understanding. I KNOW how unsettling it is to possibly have an illness that so many in the medical community have never even heard of! Since I went for a second opinion at NYU Cancer Institute on 160 East34th ST and 3rd AVE. in 2004, I have been treated wonderfully by everyone! The # is: 212-731-5187. The secretary Ellen is amazing and has a very soothing voice. My doctor there is a kind, "Marcus Welby MD", type of doctor (even though he hasn't been able to shed much light on finding a diagnosis for me, my PET scans continue to light-up like a pinball machine!) who might be from the old school, but he IS willing to learn more about Castleman's Disease.
        Maybe one of Jim's staff could forward some information to him on symptoms, diagnostic tests, treatments and how to determine prognosis stages. I think that would shed much light on OUR mission to obtain some local help. Then others could also benefit by having a knowledgable physician available to them in the New York area.
        Reply to this
        12/4/2006 7:31 PM laurette wrote:
        Hi,
        I really apreciate your input. I will give nyu a call. I need all the help I can get.
        Laurette
        Reply to this
        12/5/2006 9:00 PM Jim wrote:
        REPLY FROM DR VAN RHEE
        
        The pathology needs expert review.
        
        Transformation of germinal layers can progress to lymphoma. Special molecular work up in center of excellence may reveal whether there is lymphoma or not
        
        Frits Van Rhee, MD, PhD
        Professor of Medicine
        University of Arkansas for Medical Sciences
        Little Rock, AR
        Reply to this
    2. 12/19/2006 3:54 PM Karen P wrote:
      Laurette - I am under the care of Dr. Munshi, whom Jim has recommended to you. I was diagnosed with CD 14 yrs ago and never received appropriate treatment from any doctors I saw. Dr. Munshi has changed EVERYTHING for me. I will receive proper treatment at last. His CD knowledge is complete, his manner most caring. Under his supervision, I expect to be cured.
      Best of luck to you.
      Reply to this
11/28/2006 6:29 AM Mellisa wrote:
Hi,
My husband is currently is hospital where they found an enlarged lyph node, they did a biopsy to rule out hodgkins(they say it was came back begnin). His doctors are saying they dont know what it it he has and they have seen nothing like it. He has had serious infections, weight loss, apetite loss, lethargy, enlarged fibrous lymph node(in the tummy) and night sweats. On talking to my surgoen( i have had a lap band) he suggested it could be castleman's and it was very rare and not many docs knew bout it here ( we are from Australia. Is there someone in Aus you can recommend to see as his surgeon and oncologist is stumped and what sort of test should they do to rule out castleman's?
Reply to this
1. 12/1/2006 9:33 PM Jim wrote:
  
  Unfortunately, we do not have any physician referrals for the Australia area. Japan, Switzerland and USA are the only contacts I have. I recommend you speak with your physician and see if he is willing to have a telephone conference with a U.S. physician that specializes only in Castlemans. We have done this before and the patient has been monitored by both physicians as well as receiving treatment. If you are interested, please have your physician contact:
  
  Dr. Frits vanRhee
  Associate Professor of Medicine
  University of Arkansas for Medical Services
  Arkansas Cancer Research Center
  4301 West Markham
  Little Rock, AR USA
  (501) 296-1503 x1458
  vanrheefrits@uams.edu
  
  Regards,
  
  JIM
  Reply to this
12/16/2006 10:23 PM Reva Mirti wrote:
I was here a few years ago - looking for info when my husband was diagnosed with CD. He has not had any symptoms since, nor has he consented to the needed CT scans - as I have asked him to keep up with. The tumor was taken out of his neck lymphnodes. At one point since he had an enlarged prostate - not overly so. Recently he has begun having pain through out his body - granted he is four years older now - he's 56.5 - and this may play into it, but if this is a symptom of recurrence I'd like to know. You guys were wonderful before and I knew I could come back here and find you again. Has there been any updates on the recurrence rate for CD? What could the chances be for his to return? He does have a physical every year at the VA clinic - they are the ones who found the tumor to begin with - but as I said he will not get the CT scans. If there is recurrence would it be the same kind? Thanks for all your help

Reva Mirti
Reply to this
1. 12/17/2006 1:28 PM Jim wrote:
  
  Reva,
  
  Maintenance of CD is very important and the patient needs to take this aspect of the disease seriously. If they do not follow physician orders to have recurrent radiology and blood work testing, they do run the risk of having a recurrent tumor that may or may not be caught by a routine physical. There are protocols that need to be followed to look for CD markers in blood tests as well as x-rays or CT v MRI;s.
  
  As to the recurrent rate, I do not have a specific recurrent ratio until I complete the patient mapping that documents initial disease Dx, variant, Tx plan, recurrence and follow-up.
  
  Although I am not a physician, the symptoms your husband demonstrate will be flagged by one of our physicians as a concern and may or may not be representative of recurrent CD. It's best to follow physicians orders to be safe and proceed with recurrent follow-up to prevent or catch an early stage of recurrent CD.
  
  Please advise if this does not answer your questions or if you would like a medical consultation.
  
  Happy Holidays,
  
  Jim Johnston
  CD Executive Director
  
  Reply to this
1/2/2007 5:49 AM tanya wrote:
i just got told i have CD . AND I HAVE IN THE BEING FLU SYMTOMS. ALOST OF BONE PAIN FROM HEAD TO TOE. MY FREE CARE AT THE TIME CHECK FOR ANYTHING BASIC . I HAVE FEVER NIGHT SWEETS ACID FILLED STOMACH . I HAVE GERD SO WASNT SURE IF THAT WAS A PART OF IT. NOW ALMOS 2 YEARS LATER I HAVE A LYMPH NODE OUT IT RULLED OUT CD . BLOOD TEST ALSO, CAST SCAN HAVE BEEN DOEN . IM ALSO VERY WEAK WITH OUT PAIN MEDS BED IS THE ONLY PLACE I CAN BE. MY SYMTOMS ARE A 10 WITH ALL . SO WITH ONE LYMPH NODE OUT THEY SAID IF NO MORE LYMPH GROW ITS CURABLE AND ITS THE FIRST ONE NOT MULTICENTRIC OR PLASMA CELL ECT. BUT I HAVE MULTIPLE LYMPH ON MY NECK AND GROW EACH DAY IN SIZE . I HAVE TROUBLE BREATH CAUSE IT HURTS AGAIN WITH PAIN MEDS I CAN BREATH . I WAS TOLD I HAVE A THYMIC REGEMNET OF MASS NEAR MY LUNGS ON TOP OF MY HEART IN THE ANTIOR MEDITARSIAUM. IT JUST IS GETTING WORSE SINCE REMOVEL OF FIRST LYMPH. ALSO TESTING SHOWED PELVIC TUMOR SOLDID IM SCARED BUT IT SEEMS LIKE ITS THE BAD CD AND CHEMO OR RADIATION BUT, THAT JUST PUTS IT INTO REMISSION SOME POEOPL WITH CD THE BAD ONE I HEARD AND DID RESEARCH AND MORTALITY RATE NOT SO GOOD . I JUST WANT SOME INFO
Reply to this
1/30/2007 9:15 AM Tammy wrote:
I was diagnosed with HVCD in 2003. I was checked for 1 year and then the doctor released me. He said for me to contact him if I had any problems. I was sold that he was a CD/Lymphoma Specialist @ OSU. Problem is I didn't even know the first time that I had an enlarge lymph node. It was so deep in my right under arm you could not feel it. Now I am having problems with my left arm and leg with pins and needles and cramping in my arm and leg. But, I have a lesion on the right side of my brain and damaged areas on my left side of my brain that my neuroligist is not sure what caused this. My spinal tap from 3 years ago which I was unaware being abnormal, showed my cell count @ 100 and my lymphs at 97% which my neuro. says was not normal. I am not sure if this is all connected or not. My blood work has been fine. The CD doctor led me to believe that I was fine since nothing had shown up in a year.
Reply to this
1. 1/30/2007 10:55 AM Jim wrote:
  
  Tammy,
  
  My concern is of both the HVCD and lesson. I am not a physician but I have personal experience with both. In my dealings with both my HVCD case and others, if HVCD is not treated, it runs the risk of going and becoming inoperable unless shrunk to a size that it may be excessed. HVCD tends to attach itself to food supply; major organs which are major sources of blood, consequently the growth of the tumor (in a majority of cases). Text book literature calls for excising the tumor so it doesnt grow and become evasive. We now have documentation that once a tumor is removed, it may recur so periodic examinations of the chest, neck, abdomen, and pelvis are in order. Check with your HEM/ONC on the frequency of testing (both radiography and blood work) and if he recommends a bone marrow biopsy (which is University of Arkansas for Medical Sciences (UAMS) protocol for CD patients).
  
  My concern would be from 2003 to current can the physician tell you if the tumor has grown? If so where is it located and what is his plan? Watching the clinical coarse of this disease wold make me uncomfortable. Other than lesions, do you have any other symptoms; hives, night sweats, fatigue, wt. loss, loss of appetite, or enlarged spleen?
  
  As to the lesions, ask the Neurologist if the lesions are dormant or active. Also, ask him if he advises an Electroencephalogram (EEG). From your indications, the your motor problems are on the right side of the body which is guided by the left side of the brain. A CD Specialist can tell you if this is related. Mine is not. It is fairly common to see CD patients with more than one medical concern. I would get them both checked by accredited physicians that have expertise in this particular field.
  
  Please advise if this didn't answer your questions and if you feel a medical opinion is in order. I can forward your email to one of our staff MDs.
  
  Regards,
  
  Jim Johnston,
  CD Executive Director
  
  Reply to this
  1. 1/31/2007 7:08 AM Tammy wrote:
    Jim,
    Thank you for your reply. I did have the axilla lymph node in my right arm removed in 2003. They said that they felt it was unicentric hvcd. I am assuming that is why he decided to release me and with my blood work was fine and my mri and ct scans all came back the same during the one year span.
    
    There has not any changes on my brain in 3 years. It is just the pins and needles in my left arm and periodically in my leg that has sent me back to doctors office. Three years ago I had pins and needles in the same arm which is what cause them to do the ct scan and found the lymph node which came back as hvcd. That is how we found it then. Now, I am having to same thing but they are just watching my brain now. Thanks again for your quick reply. I will be sure to stay on top of this.
    
    Thanks,
    Tammy
    Reply to this
2/2/2007 8:24 AM laurette wrote:
Dear Tammy,

Jim is giving you some very good advise. I was diagnosed with CD in July 2005. I am being treated at Memorial Slone Kettering in NY. I have been seeing a doctor who was very vague about my prognosis so I complained to patient relations and they re-asigned my case. I am now being told that there should or could have been some treatments that my be appropriate for my C D..But first we need to get all the CAT scans. I had the last ones done in July 2006 and since then I have developed a new lump on my neck near where I had 5 large nodes removed in 2005. Then they will compare the scans and along with blood work determine if I need another biopsy. I feel getting a doctor to explain what they are doing and why is key to our understanding and accepting our disease. I amgoing for result on Feb.14. I will post the findings.

Sincerely,
Laurette
Reply to this
1. 2/5/2007 11:22 AM Tammy wrote:
  Dear Laurette,
  
  Thank you for you posting. I hope everything comes back okay. I will watch for your posting.
  
  Sincerely,
  Tammy
  Reply to this
2/7/2007 7:32 AM bronwyn wrote:
I was diagnosed with hyaline vascular castleman's disease HIV neg in Nov 2005. I had the enlarged lymph node in the left side of my neck removed in Dec 2005 with annual CT scans required after. I have had my check up with a low density area located in my right adnexal region adjacent to uterus located. I live in a country city with a delay on an ultrasound to investigate the mass. Is it likely this is related to the castlemans? I have to wait a couple of weeks for the ultrasound. I am worried about ovarian cancer as it has no symptoms in early stages.
Reply to this
1. 2/8/2007 11:02 AM Jim wrote:
  
  Dear Ms.
  
  You mentioned that you have orders for an annual CT scan. Was the orders written just to scan the neck area and/or neck and pelvis? In order to pass this information yo our medical staff, staff will need to know what areas they propose to scan (i.e. neck, chest, abdomen AND pelvis). When you had you check-up, was it an x-ray or CT? Did the Radiologist or physician tell you the size of the mass? And finally, has there been any follow-up blood work performed?
  
  These are all questions that will be routine if you are to seek a second opinion. You may want to begin keeping copies of your own medical records in the event you need to see another specialist. Specifically, all labs, radiology, and both surgical and pathology reports.
  
  I can run this email by our clinicians but I normally have CT v. x-rays alternating every year to ensure that there are no hot spots where my tumor was resected. I too had HVCD (mediastinal mass). Blood work is also important for Castlemans patients post operatively and in maintenance.
  
  I will check with the physicians to see if they recommend an x-ray before ultrasound.
  
  Regards,
  
  Jim Johnston
  CD Executive Director
  
  Reply to this
2/8/2007 11:46 AM laurette wrote:
Jim,

Thanks for your input. Yes the CAT scans are of all the areas, neck, chest, abdoman and pelvis. The blood work done was extensive. I will be going to see this doctor on Feb 14th. I will post the findings.

Thanks,
Laurie
Reply to this
2/14/2007 11:09 AM Laurie wrote:
Jim,
I just finished my annual CD tests(had been diagnosed with the PC variant two yrs ago). All blood tests results were within the normal range except for the CRP, and it was only slightly elevated. CT showed no lymphadenopathy, but did show a small noncalcified pulminary node. PET scan was clear except for the usual hot spot in the area of the uterus that has shown up on all PET scans. The radiologist did note that the node in the lung mentioned in the CT report was so small that the PET didn't pick it up and to follow-up.
My oncologist's nurse said that everything looked fine and he'd call if there were any concerns. Being the neurotic worry-wart that I am, should I just file this away or keep an eye on it?

Thanks, Laurie
Reply to this
1. 2/15/2007 10:10 PM Jim wrote:
  
  Laurie,
  
  Not being a physician, can only speculate based on what I have been told. Remission from CD is a life-long journey of annual check-ups to ensure that you do not go out of remission and to catch recurrences early enough. I will run this by the medical staff but I think your intuition is on track.
  
  Regards,
  
  JIM
  
  Reply to this
2. 2/16/2007 12:40 AM Jim wrote:
  
  RESPONSE FROM DR GUIDO TRICOT (UAMS);
  
  It would be best to have a repeat CT scan of the chest in 6 months to see if the nodule is bigger. It is unlikely that it will be bigger.
  
  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
  
  Reply to this
3. 2/16/2007 5:54 PM Jim wrote:
  
  REPLY FROM DR DISPENZIERI (MAYO CLINIC)
  
  I'm assuming the CD was removed? Its not clear to me what the "usual hot spot in the uterus" is. Has that been evaluated? How is the CRP now? If it is a tiny pulmonary node, I would not worry about it for now and would just follow.
  
  Angela Dispenzieri, M.D.
  Associate Professor of Medicine
  Mayo Clinic
  200 First Street SW
  Rochester, MN 55905
  Phone: 507 284-2479
  
  Reply to this
2/15/2007 3:53 PM Sasha wrote:
Jim,
I was just diagnosed with MCD, HIV neg. I'm 26 y/o and had a lymph mass removed from my left upper supraclavicular/neck area. The other mass is in my mediastinum.

Considering my ENT said he needs to look it up as he never had any dealings with CD, I'd like to know whether you could give me any contacts/info of any kind regarding CD specialists in Europe.

Another thing I was wondering... My ENT said that since it's benign I shouldn't worry about it. Does it mean that it (MCD) doesn't need any treatment whatsoever until it becomes severe (in terms of B symptoms)?

I apologize if my question seems a bit ignorant but I was too overwhelmed with information for 1 day.

Kindest regards,
Sasha
Reply to this
1. 2/15/2007 9:53 PM Jim wrote:
  
  Sasha,
  
  What specific country? There are specialists that I know of in Spain, England, Netherlands, and Sweden.
  
  Regards,
  
  JIM
  
  Reply to this
  1. 2/19/2007 3:12 PM Sasha wrote:
    Either of the German speaking countries (Germany, Switzerland or Austria) or the UK would be great. Thanks!
    Sasha
    Reply to this
    1. 2/20/2007 12:43 PM Jim wrote:
      
      Sasha,
      
      Will advise. just sent a note to our Medical Director who may have contacts in Germany (Dr Barlogie).
      
      Regards,
      
      JIM
      
      Reply to this
    2. 2/20/2007 4:08 PM Jim wrote:
      
      Sasha,
      
      I just received an email from Dr Bart Barlogie, Director, Myeloma Institute for Research and Therapy
      University of Arkansas for Medical Sciences and he recommeds Axel Zander at Univ. of Hamburg.
      
      Regards,
      
      JIM
      
      Reply to this
      1. 2/21/2007 3:04 PM Sasha wrote:
        Thank you for your help!
        Will get in touch with him.
        
        Regards,
        Sasha
        Reply to this
2/15/2007 7:03 PM Hannah wrote:
I had my Castleman lymph node removed December 2005 (HV, unicentric). I'm being seen by a hematologist-oncologist. I've had 3 rounds of CT scans of head/neck/chest/abdomen/pelvis and CBCs and iron tests since then. Everything is relatively normal except iron-deficiency with no known reason and low-grade fevers for the past 4 months. My doctor doesn't seem concerned about the low-grade fevers, but I am. What should be done?
Reply to this
1. 2/16/2007 12:51 AM Jim wrote:
  
  Hannah - RESPONSE FROM DR TRICOT (UAMS):
  
  I think that it would be good to have a Pet scan an CRP.
  
  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
  
  Reply to this
2. 2/17/2007 10:35 AM Jim wrote:
  
  REPLY FROM DR DISPENZiERI: (Low Grade Fever)
  
  This is not straight forward. Depends on how low grade the low grade temperatures are. If they are all under 100, I wouldn’t be concerned. If they are going higher, then I think it needs to be looked at. Your doctor could also check to see whether your ESR, serum protein electrophoresis, and interleukin-6 are elevated. It needs to be clarified whether your really have iron deficiency—i.e. what criteria are being used to make that diagnsosis?
  
  Angela Dispenzieri, M.D.
  Associate Professor of Medicine
  Mayo Clinic
  200 First Street SW
  Rochester, MN 55905
  Phone: 507 284-2479
  
  Reply to this
  1. 2/18/2007 3:34 PM Hannah wrote:
    My temp is usually running 99.7. The highest it has gotten is once at 100.5 and twice at 100.0. I had CRP done a year ago-1.99 MG/DL and ESR the same time was 19 MM/HR. My iron-deficiency was first diagnosed 8/26/2004. Iron was 14 (37-170) UG/DL. 9 months of iron pills to get it back to normal. Then, when checked again in March 2006, iron was 30. Iron Binding Capacity was 227. % Saturation was normal. 8 months to get back to normal-and just barely. Doctor blames it on menstruation, but I'm on Seasonal (4 periods a year) and they are very light and I'm definitely not a vegetarian. My doctor attempted to get a bone marrow sample but was unable so he said it wasn't necessary. I asked for an interleukin-6 test, but doctor refused. I am 20 years old and otherwise healthy.
    Reply to this
    1. 2/19/2007 10:17 AM Jim wrote:
      
      REPLY FROM DR. DISPENZIERI: (HANNAH)
      
      The inflammatory markers look good. She had the best type of CD, the unicentric, hyaline vascular, so the likelihood of all going well is excellent. A temperature of 99.7 is generally considered normal.
      
      I'm not sure what the numbness is, but my guess w/o seeing the patient is that it isn't something to worry about. I'd suggest getting into an exercise and stretching program and see if some of the symptoms go away. I'm very hopeful that things should work out well.
      
      Angela Dispenzieri, M.D.
      Associate Professor of Medicine
      Mayo Clinic
      200 First Street SW
      Rochester, MN 55905
      
      Reply to this
2/16/2007 2:16 AM LEENA wrote:
My fiance has been diagnosed with Castlemans disease months ago. There are a few other sickness involved such as chronic fibro, msn, bronchitis etc. The "specialtist" doctor seems to be hesitant in giving us information about what stage the CD is in, what treatments are helpful, won't give the go ahead for PET scans, futher blood testing, and is sending us to other specialists such as ruemotologist, because there is pain involved but different pain. The difference between the pains are plain as day, but he seems to think there is no pain w/CD. Can anyone confirm that they do have an undescribable deep gnawing pain that feels like it's coming from the center of every bone, having pain run through the veins.
Reply to this
1. 2/16/2007 8:04 PM Jim wrote:
  
  I will forward your email to our Specialists for a medical response. As to the pain in the bones, Dr Dispenzieri answered this in an earlier email ...............
  
  ..................... "And yes, CD can on occasion cause bone pain and aches."
  
  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. 2/16/2007 8:58 PM Jim wrote:
  
  RESPONSE FROM DR TRICOT: (Neuropathy)
  
  Neuropathy is not that uncommon in CD. It can be part of POEMS/CD.
  
  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
  (501) 296-1503 x1423
  TricotGuidoJ@uams.edu
  
  Reply to this
3. 6/3/2007 1:16 AM Bob wrote:
  I have that deep gnawing pain you described in my left hand. The bones feel like they're splintering or something and all the muscles feel like they are being stretched so tight they're going to snap. That's the only place I feel it regularly. When I'm really tired, my bones hurt from my shoulders to my finger tips. My CD was found on the left side of my neck, so I'm not sure if that's the culprit or not.
  Reply to this
2/16/2007 2:19 AM LEENA wrote:
Also, another question, the doc. we're seeing said it's definately CD, but something else is involved. When and what stages would be considered Poems disease? Not much help with this doc. Thanks
Reply to this
2/18/2007 4:01 PM Hannah wrote:
Some other things I've been experiencing along with the low-grade fevers are: intermittent numbness in my finger tips, weakness and pain in my shoulders and arms, and a very warm sensation going down the side of my calf lasting maybe 20 seconds 1-2 times a day. Perhaps completely unrelated, but I thought I should share.
Reply to this
2/20/2007 10:06 PM amy wrote:
This in reference to my 11/18 entry. RLQ area has had biopsy from open precedure ( mass inoperable ) and CT guided needle biopsy. Samples consistant with HVCD. Mass did shrink in size and symptoms improved post embolization. A course of steroids contributed to GI issues ultimately resulting with partial gastrectomy . Bleeding and anemia eventually resolved. Blood counts low normal with exception of FE. IV/IM FE needed periodically.
My concern something has changed... I do not feel well ( I can't describe it) Pain has been consistant in character over the last 13 years but currently much more intense. Pulmonary nodule (SUV 1.9) and lymph nodes on PET/CT have not appeared on any CT's or X-Rays taken over last 13yrs. I'M negative for TB/HIV and have no history of viral or bacterial infections (Flu/bronchitis ect) over the last 13 years with the exception of 2-3 head colds per year. Now I have a lump that feels attached to lower right rib cage that seems to be increasing in size and starting to cause pain.
I'm tired of surgeries/biopsies/blood test ect.but want to feel well again and want the pain to stop or at least stop progressing.
I'm Ok with watching if I know there is a plan/treatment algorithm , my concerns are acknowledged, and the pain would stop progessing.
Can HVCD progress to multiple sites- RLQ/ Right pulmonary nodule and right pulmonary lymphnodes/Right Rib area ? Again blood counts are low end of normal/ ESR & IL6 normal.
I'm tired of tests - what's the least invasive/painful algorithm to find out whats going on and to feel better.
Insurance limits referral options. I have an appointment with Dr. Blinder at Barnes in St. Louis in late March. Can anyone advise ?
Reply to this
1. 2/21/2007 10:13 PM Jim wrote:
  
  Amy,
  
  I will refer your email to our medical staff for an official opinion. Of the record, (I am not a physician but a patient of CD myself) I have been told by the medical profession that a needle biopsy is useless for the proper Dx of HVCD or any associated CD mass. Pathologists want to see the "architecture of the tissue" v. cells. Therefore, I would concern myself with the Dx of HVCD based on a needle aspiration.
  
  Again, I will confer with our medical staff.
  
  Regards,
  
  JIM, CD
  Executive Director
  
  Reply to this
2. 2/22/2007 8:29 AM Jim wrote:
  
  RESPONSE FROM DR. DISPENSIERI:
  
  Yes HV CD can affect multiple sites, but I'm sorry to say that you have a new enlarging, painful mass, it really should be biopsied. It could be CD, or it could be something else.
  
  Depending on the size of the pulmonary nodule and the extent of the lymphadenopathy, your doctor may want to investigate these findings further as well.
  
  Angela Dispenzieri, M.D.
  Associate Professor of Medicine
  Mayo Clinic
  200 First Street SW
  Rochester, MN 55905
  Phone: 507 284-2479
  Fax 507 266-4972
  
  Reply to this
3. 2/22/2007 9:01 AM Jim wrote:
  
  RESPONSE FROM DR TRICOT:
  
  The least invasive approach would be to repeat the PET scan and see if there is evidence of possible active CD. If that is the case, especially if the lymph nodes are bigger or more active, a biopsy is indicated to see if it is indeed CD.
  
  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
  
  Reply to this
4. 2/22/2007 9:07 AM Jim wrote:
  
  REPLY FROM DR. TRICOT:
  
  The least invasive approach would be to repeat the PET scan and see if there is evidence of possible active CD. If that is the case, especially if the lymph nodes are bigger or more active, a biopsy is indicated to see if it is indeed CD.
  
  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
  
  Reply to this
2/21/2007 9:07 PM Tammy wrote:
Hi, I have a question. I had CD removed from middle of chest 3 yrs ago. I am having a lot of nerve and chest problems. My oncologist not concerned about my ESR= 34, CRP= 8.19, IL-6 at 6. Said all are slightly elevated and are non specific. Could these numbers be elevated from ongoing infection not detected on CBC? Thanks, Tammy
Reply to this
1. 2/21/2007 10:16 PM Jim wrote:
  
  Tammy,
  
  I will need to confer with medical staff. Will post as soon as a response is available.
  
  Regards,
  
  JIM, CD
  Executive Director
  
  Reply to this
2. 2/22/2007 8:24 AM Jim wrote:
  
  TAMMY - RESPONSE FROM DR DISPENSIERI:
  
  Could be non-specific. I'd recommend rechecking in a few months.
  
  Angela Dispenzieri, M.D.
  Associate Professor of Medicine
  Mayo Clinic
  200 First Street SW
  Rochester, MN 55905
  Phone: 507 284-2479
  Fax 507 266-4972
  
  Reply to this
2/23/2007 3:05 PM Laurie wrote:
Jim,
I'm so surprised at all the new CD cases that have been indicated on this website. I'm figuring it's not because CD is becoming more prevalent but rather that pathologists are more aware of it. Do you think this is the case?

I know you've mentioned before the number of cases that you've kept track of through this site. Can you share how many cases of CD you're aware of and do you know how many of each variant? For example, how many PCCD vs the HV variant? And of those, how many of the plasma cell are unicentric vs multicentric? This is just for curiosity's sake

Thanks, Laurie
Reply to this
1. 2/23/2007 4:32 PM Jim wrote:
  
  Laurie,
  
  I have documented close to 200 cases in the US. Japan has close to 1000. I do believe it is the fact that patients are becoming more familiar with the disease which makes their HemOnc's uncomfortable and forces them to research. This in turn puts pressure on the Radiologists and Pathologists who are becominingh more and more familiar with the signs and symptoms of the disease.
  
  Regards,
  
  JIM, CD
  Executive Director
  
  Reply to this
3/12/2007 11:24 AM Donna wrote:
Hi - very informative site. My question is this: Over the last 10 years or so I have had 8 neck operations and one thigh surgery for enlarged lymph nodes, all of which came back with the same pathology results - reactive lymphoid hyperplasia. I've seen an infectious disease physician a few years ago who did multiple blood tests and who mentioned Castleman's disease but he never followed up. All blood work was normal. Last year I was sent to an oncologist who also did more blood work but questioned why I was sent to him. He told me "if you get any more lumps come and see me." I have now discovered 3 more lumps in my neck and am scheduled for a CT scan. First, could this possibly be Castleman's disease? Second, are there any particular questions I should be asked these docs, or specific tests they should be doing to look for this rare disease? This is really frustrating. I don't know where else to turn to find out what's is causing my lymph system to "run amok." Seems like every year or two I'm having surgery and it's always the same outcome. I feel at the age of 42 I've had enough surgeries to last ten lifetimes!! ANY information would be greatly appreciated. Thank you.
Reply to this
1. 3/12/2007 10:32 PM Jim wrote:
  
  Donna,
  
  The medical term for Castlemans Disease is also "Angio follicular hyperplasia" - which is giant lymph node. There may be other synonyms listed on my web site. Although I am not a physician but a patient and patient advocate of CD, you must see a Specialist and discuss your symptoms with them (preferably one that treats patients with CD and is familiar with the disease).
  
  The routine blood work performed by the University of Arkansas for Medical Sciences (UAMS) and Fred Hutchinson Cancer Clinic is as follows:
  
  Complete Blood Count (CBC)
  Platelets,
  Hemoglobin,
  Electrolytes,
  Bun / Creatnine,
  24-hr urine total protein,
  24-hr urine Myeloma protein,
  Bone marrow aspiration,
  Serum electrophoresis,
  C-reactive protein,
  Sedimentation rate,
  Interleukin 6 levels (looking for elevated IL-6 levels),
  Liver function,
  Immunofixation blood and urine,
  HIV test,
  PCR for HHV8,
  CD4 count,
  Clotting studies (PT, PTT, fibrinogen),
  Auto-antibody screen,
  Rheumatoid factor
  
  This is not a disease to just wait and watch the clinical course progress. Aggressive measures must be taken by SPecialists familiar with Castlemans Disease. Please advise if further clarification is necessary.
  
  Regards,
  
  Jim Johnston,
  CD Executive Director
  
  Reply to this
3/12/2007 11:10 PM Donna wrote:
Thanks for responding so quickly Jim. How can I find a specialist in my area who is familiar with CD? I live in Pennsylvania - about 25 miles north of Phila. Thanks.
Reply to this
1. 3/13/2007 6:36 PM Jim wrote:
  
  Donna,
  
  It's worth the trip - go see Dr Munshi at the Dana Farber Cancer Research Center. He was my physician while practicing at the University of Arkansas for Medical Sciences (UAMS) in Little Rock. Dr Munshis' contact information is:
  
  Dr. Nikhil Munshi, MD, PhD
  Associate Director of the Myeloma Center
  Dana Farber Harvard Medical School
  44 Binney Street, M557
  Boston MA 02115
  (617) 632-5607
  (617) 632-4218 Sec
  (617) 632-2140 Fax
  Nikhil_Munshi@dfci.harvard.edu
  
  Regards,
  
  Jim Johnston
  CD Executive Director
  
  Reply to this
3/13/2007 4:20 PM Donna wrote:
Hi Jim. I have not actually been diagnosed with CD. An infectious disease physician I saw a few years ago mentioned CD but never did any tests or anything. Should I still see a specialist for CD even though I have not actually been diagnosed with it? Thanks so much.
Reply to this
1. 3/13/2007 6:43 PM Jim wrote:
  
  Donna,
  
  The best thing to do is send all the work-ups, blood work, radiography etc. to Dr Munshi at the address provided and he can tell if there are any markers in the data (if sufficiently supplied). If not, he may ask you to see him in clinic for further testing. In any event, you will get a positive or negative result to whether you have Castlemans or not. PDF the files and send them email for expediency.
  
  Regards,
  
  Jim Johnston,
  CD Executive Director
  
  Reply to this
4/4/2007 7:33 PM tanya wrote:
jim i was wondering, if you could or already have talk to my dr or interact with dr nickhel munshi, on my path, blood work and symptoms also other test pet ct mri , i havent heard a word from him since jan 1 also, i had another path 12 march o7 so its been 7 months at that hosp and not really a good enough stright forward answer .. let me know also is that white blood cell count 5000 in nov and now 6100/ also a count of hemoglobin l some what and hemocrit l for some time now. and my platelet count was 203,000 in nov and now 343,000 k thanks for everything tanya p
Reply to this
1. 4/4/2007 10:51 PM Jim wrote:
  
  TANYA,
  
  I would be more than glad to interact with Dr Munshi. Before doing so, as a result of HIPPA requirements, I will need a statement to the effect that I have your permission to discuss your "specific" medical information with Dr Munshi or an alternate physician you deem in the letter. Please be specific as to what I am allowed to discuss. Send the email to my personal HMCONSULT@msn.com account and I will follow up with Dr Munshi.
  
  Regards,
  
  Jim Johnston,
  CD Executive Director
  
  Reply to this
  1. 4/5/2007 9:36 PM tanya wrote:
    i just got second biop result from the dr who did it and he said just the same as last hyper lymphnoid watch and wait game now what how can he just wait and watch two biops with hyper active lymph and i have already from head to toe have 10 node abnormel
    Reply to this
    1. 4/5/2007 10:10 PM Jim wrote:
      
      Tanya,
      
      I suggest you seek a second opinion. Due to the fact you are probably in or near Boston, I would contact University of Arkansas for Medical Sciences and ask for Dr Frits VanRhee. He will do a telephone consult and provide you with some options. He may be reached at (501) 296 1503 ext 1547.
      
      Regards,
      
      Jim Johnston
      CD Executive Director
      
      Reply to this
4/5/2007 9:29 PM tanya wrote:
hi its me tanya again jim , i at dana farber have now two dr two biops and i basically just got told my last biop this last month is a hyper lymphnode and him and m will just wait and watch now what please help
Reply to this
4/7/2007 9:40 AM tanya wrote:
after first half came back from second biop another throctic dr said same as before active hyper lymph node also in afternoon nex day got a messg from dr mun.... secrit. said dr is seding refering me over to the lymphoma team now so i will not be in the oncologist/path dr .. i will be in the dep for lymphoma cancer department. thats most recent biops just done results thanks
Reply to this
4/12/2007 5:55 PM Tammy wrote:
Hi Jim, I just got back from ACRC with Dr. VanRhee. Castleman gone and now going to see Rheumatologist for positive ANA with a various continuous symptoms. I am shocked. I went to see Dr. VanRhee after 3 yrs ago because I flet worse and am taking a lot more medication for my nerves and inflammation. I was shocked that it wasn't CD doing this to me. I was also releived. Any comments from anyone.
Reply to this
1. 4/13/2007 10:22 PM Jim wrote:
  
  Tammy,
  
  As you are aware, CD is an auto-immune disorder that affects the whole body. It s not surprisingly that there are other disease r chronic illnesses co-mingled with CD. I have seen this in many patients (myself included). I am glad that it is not CD and that the CD appears to be in remission. Please do follow-up with the annual CD check-ups, blood work, and radiology. This is all part of maintenance that catches flare-ups before they get out of hand.
  
  Please keep us posted on your progress.
  
  Regards,
  
  Jim Johnston,
  CD Executive Director
  
  Reply to this
2. 4/16/2007 4:14 PM Martha Garcia wrote:
  I had Castleman's back in 1999 and have now also developed rheumatoid arthritis. Doctors said this is not related to Castlemans, just another autoimmune disease. Any idea as to why autoimmune system would develop one disease and years later develop a completely different disesase?
  Reply to this
  1. 4/16/2007 10:30 PM Jim wrote:
    
    Good question. Our autoimmune system is very complex and as I am finding out, it affects different people with CD in different ways. The way I explain it to the lay person is that our autoimmune (AI) system is the DNA fingerprint to the way our bodies fight off sickness and diseases. Everyones fingerprint is different and where you might be immune to EMF, other patients may have bad reactions that even cause serious illnesses.
    
    Although RA is an AI disorder, there are many patients with RA but equally other diseases associated with CD as well. I am not an MD or PhD and cannot answer except what is currently being researched. We are trying to build a data bank of information for this very reason to validate commonalities between patients with CD.
    
    I hope this answered some of your questions. Please feel free to write back with any further concerns.
    
    Regards,
    
    Jim Johnston,
    CD Exective Director
    
    Reply to this
4/14/2007 9:32 AM tanya wrote:
hi i was and now going to a cancer inst department , so from a lump in superv... to hyper lymph node. and i just received a 2# biop i didnt see result but dr nurse called left a messg that dr went over other half of biop and is now sending me to lymphoma dr... so in a week and im afaired of whats to come and why would he just do that does it truely mean cancer
Reply to this
1. 4/16/2007 12:00 AM Jim wrote:
  
  Tanya,
  
  At one point you are going to have to put faith in the Drs and let them do their work-ups. All will come out ok. I am not speaking off the cuff but from my own experience. I haven't said anything to anyone but while I was in Baton Rouge, I was Dx wit bladder cancer. Two months ago I received a second Dx of prostate cancer. All I can do is stay positive and let they trained physicians do their job. I did my initial homework and am in the care of two great Drs. Please stay positive.
  
  Regards,
  
  JIM
  
  Reply to this
  1. 4/17/2007 6:25 PM leslie wrote:
    God bless you Jim for all you have done! I will keep you in my prayers.
    Reply to this
    1. 4/17/2007 9:38 PM Jim wrote:
      
      Thank you Leslie. I was quite over-whelmed by the double diagnosis.
      
      Regards,
      
      Jim Johnston
      CD Executive Director
      
      Reply to this
      1. 8/28/2007 12:25 PM Judy wrote:
        Hi Jim I have not check in for quite a while. How are you doing? I just read about your two dx, you are in my prayers.
        Reply to this
        8/30/2007 10:51 PM Jim wrote:
        
        Judy,
        
        Yes, it has been a long time. Please keep in touch. I will do just fine - positive attitude is everything. Thank you for the support.
        
        Regards,
        
        Jim Johnston
        ICDO Executive Director
        Santa Fe, NM
        
        Reply to this
5/29/2007 6:33 PM amy wrote:
St. Louis trip was not at all helpful - I think they just wanted to catalog the tissue samples. Over a month after the appointment and after MANY attempts to get information the recommendations were to do nothing and check back in a month if things continue. At that time they hadn't even bothered to get the PET/CT results from my physicians office or have them read at their facilities. I'm not sure if I was to check back a month from the appointment or from when they finely sent their recommendations.
In all seriousness I don't feel well. Yes I can still work and yes I can still sleep at night. I eat well but something has changed. Labs are basically normal slightly anemic ( Hbg much higher than it has been in years ) ALT elevated and strangely enough cyanocobalamine elevated ( 2503 Pg/ml ) even after partial gastrectomy and PPI therapy. I just recently found out the SUV of what is considered castlemans was 5.4. The area in the left lung showed SUV 2.6. The SPN in right lung which had SUV 1.9 was not apparent on most recent CT in May. At that time " so called " linear scar tissue was apparent in left lung. No correlation from radiologist with PET but description sounds like same area with elevated SUV on CT in May. Insurance limits consultation options beyond my March consultation at St. Louis.
My physician has offered steroids ( contributed to stomach problems and partial gastrectomy ) or Rituxan. IL-6 was normal and I'm not having any sweats, fever ect. My main complaint is pain, increasing fatigue, and some weight loss.
Would rituxan be of any benefit without constitutional symptoms. ? Could area in the lung be second area of Castlemans disease. Watch and wait ( but wait for what - things aren't getting better ) Any suggestions to pin down what is going on ?
Reply to this
1. 5/31/2007 11:16 PM Jim wrote:
  Amy,
  
  I am sorry for the bad representation and treatment in St Louis. Who did you see and at what clinic? I am going to forward your email to one of our Specialists in Castlemans. Did you ever get a variant of the disease from the physician or clinic? I will post the reply here from the physician unless I ear otherwise from you.
  
  Regards,
  
  JIM JOHNSTON
  CD Executive Director
  Reply to this
2. 6/1/2007 2:56 PM Jim wrote:
  Amy, Dr Tricot from UAMS responds:
  
  An SUV of 5.4 in a CD lesion is high. I would make sure it is not something else. I would repeat a CT scan of the lung with thin slices and see if thee is any lesion. If there is and the PET shows increased SUV I would propose to do a FNA of that lesion under CT guidance. Until these issues are resolved, no therapy should be instituted.
  
  Guido Tricot, M.D., Ph.D.
  Director of MTRC
  (Myeloma Transplant Research Center)
  University for Medical Sciences (UAMS)
  4301 W Markham
  Little Rock AR 72205
  (877) 635-7240
  TricotGuidoJ@uams.edu
  
  Reply to this
5/30/2007 3:51 PM Bob wrote:
I was diagnosed with unicentric HV CD in January 2006. I have never had an IL-6 test done because when I requested it, the doctor (hematologist-oncologist) said he didn't know how the test was performed and he didn't know what good it would do to know anyway. From what I've read, it seems that knowing your IL-6 level is important. Am I wrong?
Reply to this
1. 5/31/2007 11:29 PM Jim wrote:
  Bob,
  
  You are CORRECT in identifying the requirement for an IL-6 level. This would be one of the markers to identify CD (among other tests). If the physician is not aware of the IL-6 performance, he hasn't completed his research on Castlemans signs. This is one reason I refer patients to a Specialist that treats CD "daily".
  
  If you are interested in our CD Centers of Excellence, please let me know what City and state you reside and I can provide you with the closest physician.
  
  Regards,
  
  Jim Johnston,
  CD Exec

Back to Main Page

Category Archives

Recent Entries

Recent Comments

Subscribe

Monthly Archives

General Castlemans Inquiries

Trackbacks

Comments

Back to Main Page

Quicksearch

Quicksearch

Category Archives

Recent Entries

Recent Comments

Subscribe

Monthly Archives

General Castlemans Inquiries

Trackbacks

Comments