Message from Medical Director: Bart Barlogie, M.D., Ph.D., is director of the Myeloma Institute for Research and Therapy at UAMS and Medical Director for the International Castleman's Disease Organization. The Myeloma Institute provides advanced medical training for oncologists with a specialization in multiple myeloma from around the world, conducts pioneering research in this field, and offers state-of-the-art treatment for patients from around the world. The institute is the only program of its kind in the world dedicated exclusively to multiple myeloma.
Please use this Blog if you are a first time user with inquiries or wish to request information on Castlemans Disease (CD), treatment facilities, physician referrals or general CD inquiries.
Thank you and enjoy.
Jim Johnston,
Executive Director
International
Castlemans Disease Organization
Santa Fe, NM USA
HTTP://castlemans.org
Email: HMConsult@msn.com
10/10/2006 5:41 PM
Carole wrote:
I had an inguinal lymph node biopsied and the path report came back saying proliferation of plasma cells consistent with Castleman's Disease.
The doctors are wondering if it could be a connective tissue disorder instead, so yesterday I saw a rheumatologist who is doing bloodwork.
I've had neck, chest, abdominal, & pelvic CTs--only abnormal finding has been multiple pulmonary nodules indicating current inflamation, as well as fibrotic and linear scarring on my lungs. An endoscopy found cell infiltrates in my stomach lining that is causing gastritis.
I have "upper limits" lymph nodes in the neck, armpits, & groin areas. Been having a lot of itching & hives for the past 5 years, along with fatigue and a number of low-grade infections, and multiple other "strange" symptoms.
I'm 39 now, but when I was 15 I had a benign parotid tumor (saliva gland behind the ear) that was removed--no mention of any unusual pathology findings on the tumor at the time.
I'm in Hawaii and wonder if there are others I can turn to for a definitive diagnosis or other individuals with Castleman's here.
----- Original Message ----- From: Van Rhee, Frits To: Jim Johnston Sent: Wednesday, October 11, 2006 2:09 PM Subject: RE: NEW CD Patient -- Asst needed
Can she come to see me? That would be the best.
Van Rhee, Frits MD PhD UAMS Little Rock, AR Reply to this
12/25/2006 11:37 AM
April Camillo wrote:
Carole, I was recently diagnosed with my 2nd episode of Castleman's (1st time was in 2003). I have several masses throughout this time. I will be starting chemo & radiation soon. I would love to talk to you at length. Let me know how to get in touch w/you. Reply to this
1/6/2007 6:31 PM
Carole wrote:
Hi April, I would love to talk to you, also. You can email me at anniekins_sidewalker @hotmail.com. I just started treatment a few weeks ago. I am on Thalidomide and Dexamethasone. Reply to this
10/12/2006 11:29 AM
Carole wrote:
Thanks for the response. It would be stressful to travel unless I absolutely must. I feel so uncomfortable all the time and the thought of sitting on a plane for hours seems unbearable.
Can you tell me if a low total cholesterol level is common among Castleman's patients? Mine was 87 at the end of July (LDL 39/HDL 38).
Also, I notice changes in my vision. Graininess, flickering, and temporary blurring. Sometimes when I wake up I can feel throbbing behind 1 or both eyes, but this usually goes away quickly. I asked my oncologist if it could be related to any Castleman's symptoms and he said not that he was aware of.
11/12/2006 7:02 AM
Bonnie wrote:
My mother was experiencing blurred vision. She was sent to a neurologist. He discovered that her spinal fluid pressure was high and diagnosed her with "Pseudotumor", however, after several lymph node biopsies, she was diagnosed with castlemans. After she started treatment for the castlemans, the blurred vision went away. Now after many years of remission, the blurred vision returned and she is being treated for castlemans again. Her initial treatment was cytoxan (chemo pills) and acyclovir. She is now just back on the cytoxan. Hope this info. helps you. Reply to this
ALthough I am not a physician, I can refer you to a medical Dr at UAMS that specializes in the Dx and Tx of Castlemans Disease. My initial question and one that the Dr will want to know is where are you located? Is your mother transportable? Do you have access to her previous Tx medical records? and how old is she? Next, what was the initial Tx that was provided to your mother that caused her to go into remission? And, was she provided with a variant of the disease or just told she had Castlemans? Finally, The initial symptoms your mother had that caused the physician to Dx her with Castlemans, has they recurred (other that the vision)? And where was the CD tumor located initially? Is the new CD Dx located in a different location? Or has the physician defined that? What tests since the recurrence of the blurred vision recurred has the physician taken to establish whether this is a recurrence of CD or something else.
I need to caveat this statement again, with the fact that I am not a clinician but merely a patient of 20+ years and researcher / web master of CD and Executive Director of this International CD website and Foundation. Although we are dealing with a rare disease, We do have evidence that Castlemans may recur even if the tumor, nodule, or mass has been resected. I suggest you gather every medical record you can on your mothers medical CD history (incl. radiology, slides of biopsies - if available, and blood test results). The medical staff at the University of Arkansas for Medical Sciences (UAMS) Little Rock, AR., and Castlemans Clinical Director, Dr Frits vanRhee will want to review this data and e prepared for a telephone consult.
Please advise if you are able to answer these questions and I will forward to our medical staff for an official medical opinion.
Cytotoxan is achemotherapy agent and can be used for Castleman's. As single agent it may not be as effective as in combination chemotherapy. Acyclovir is used for prophylaxis and therapy of herpes simplex and herpes zoster (cold sore and shingles respectively). It is usually given to prophylax against shingles and cold sore virus in patients receiving chemotherapy.
I will be delighted to see her.
Frits van Rhee, MD, PhD, FRCPath, MRCP(UK) Director of Immunotherapy and Allogeneic Transplantation, Associate Professor of Medicine Myeloma Institute for Research and Therapy University of Arkansas for Medical Science
Cyclophosphamide kills the plasma cells and/ or the B cells that secrete the cytokines which cause all the problems in CD. Acyclovir would only make sense if CD was induced by one of the DNA viruses and is probably not the best drug for that.
Guido Tricot, M.D., Ph.D. Director Myeloma Transplant Research Center University of Arkansas for Medical Sciences Little Rock, AR Reply to this
10/22/2006 11:51 AM
Barbara Blandford wrote:
I have just been dx with hylaine vascular CD based on excisional biopsy of a 4 cm R. axillary lymph node, and lack of other sx except for generalized bilateral axillary lymphadenopathy on CT scan and MRI. I want to consult someone knowledgeable re: further w/u and surveillence recommendations. Also, as I am a Nurse Practitioner and am aware of the rarity of this condition, I would like to be involved in some long term f/u program in the Boston, MA area. I have obtained the names of Dr. Nakhil Munshi @ Dana Farber and Dr. Ronald Takvorian @ MGH. Any recommendations / input on selecting someone to consult would be greatly appreciated. Thanks, Barbara Blandford Reply to this
10/22/2006 6:35 PMJim Johnston wrote:
Barbara, Dr. Nikhil Munshi is very familiar with Castlemans. If you are restricted to the Boston area, Dr Munshi is your CD Specialist. Prior to practicing at Dana Farber, Dr Munshi was with the University of Arkansas for Medical Sciences, Little Rock, AR. They too are a good resource for a second opinion on a Dx. Dr Bart Barlogie or Dr Frit’s vanRhee may be reached at UAMS (501) 686-8230. Finally, Dr Brad Pohlman of the Cleveland Clinic is also familiar and has seen patients with Castlemans at the Cleveland Clinic. Dr Pohlman may be reached at (216) 445-6070. As tissue is one of the ways to get a clear, cut Dx of CD, from the literature I have posted on the web, surgical resection of the mass is one alternative (based on location and size). A specialist that is familiar with CD and Tx plans is a good start. Dana Farber Cleveland Clinic and UAMS will be a good start for recommendations on a Tx plan. Please advise if I may be of further assistance. Regards, Jim Johnston, ED Reply to this
10/23/2006 3:26 PM
Barbara Blandford wrote:
Thank you for your help. I will start with Dr. Munshi. My 4cm lymph node was excised (totally but in pieces) on Oct. 3rd. Path report took awhile as results were sent into MGH for their input. Relieved it was not lymphoma, and the breast lump incidentally picked up on CT scan was neg for malignancy on stereotactic bx. It has been a long 5 weeks! After seeing Dr. Munshi, my husband and I may travel to Arkansas, if only to help data collection and tracking of this rare disease. Has a central clearing path lab been started for CD to your knowledge? Thanks again for all your help. And for your rapid response. Barbara Reply to this
11/3/2006 9:25 PM
Jean Reed wrote:
I am a 55 year old female and I was diagnosed with benign single cell Castleman's disease about 18 months ago. It was discovered after I had surgery for what was thought to be a retroperitonel cancer. What a relief! I would like to know if I should be getting any kind of monitoring apart from a yearly scan. As you can understand not many doctors know about this disease here in New Zealand Thanking you Jean Reply to this
I am not a physician but a patient like yourself with the same type of nodule removed. I was instructed that I have CT v x-ray every 6 mos post operative for the first yr. Thereafter an annual CT v x-ray (ct every other yr) as a precaution since we DO have evidence of recurrence. I also have lab work performed annually too. Below is what my physicians at the University of Arkansas for Medical Sciences request.
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
Currently my husband and I cannot travel to UAMS. I have found though a physcian at M.D. Anderson / Orlando a doctor that has seen/ treated castleman's. At least that what the front desk lady tells me . His name is Jose E. Sarriera.
We are going in for test results tomorrow with our current oncologist ( who has never seen a case besides my husband)- I was going to ask for a refferal to at least meet with this other doctor.
I am wondering if he is known in the Castleman's community?
11/8/2006 12:33 PM
Sue wrote:
My daughter just had a growth removed from her parotid artery. Today the lab results showed Castleman's Disease. She has been scheduled for a scan.
In reading the blogs I do not see where this is something where there might be a future problem or what causes this to develop.
If you have any answers it would be appreciated. She is in Oklahoma and surgery was done at OU Medical Center.
Your daughter needs to be monitored post operatively to prevent a recurrence. The lymphatic system goes throughout the body. CD tumors are known to attach themselves to major organs, arteries, etc. to feed off the organ. REmoval of the tumor was a good choice. Prevention and maintenance is now follow-up therapy. Hope this helps.
11/12/2006 10:32 AM
Stacy wrote:
Jim, I have a question I had a lymph node removed from my parotid gland and was wondering since the path report showed it is castlemans, is this a disease that just showed up or is this something I am now cured of after I get a scan or is this something that is with me the rest of my life? Why did this happen I am healthy 36 years old. I have no insurance and really cannot afford much more than a scan. Any help would be appreciated, is this something my children can get like is it genetic?
WHen I was diagnosed, I too was healthy. Since this is an auto immune disorder and a rare one at that, there is not too much anyone can tell you about where it came from or why. Physicians have told me that it is NOT genetic and according to literature, it affects males more than females, caucasian and in their thirtys. Each year we are finding out more and more about this disease but where it derives is not one of the answers.
As far as maintenance, as you will read in each of my emails, I harp that maintenance is so important. It wasn't until recent that we found evidence that even though a benign tumor is resected, there is a "possibility" of recurrence. That being said, annual maintenance is important.
Hope that this was some help. If you need a medical opinion, please advise and I will forward to one of our medical staff for an opinion.
11/22/2006 3:39 PM
Sue wrote:
Jim, Thank you for your response, since writing my daughter is getting follow up at OU medical center and it sounds like they will monitor her closely.
4/29/2007 4:40 AM
tanya wrote:
k since i got sick its been i feel after seeing my babie records i had stap infection , my mother still had no clue how and what it was , i got all my med records and notes said due to metrobolic but could be linked to alot of medical thinks i had mild hyper reative lymph and more .. so i thin my born infection from mother happend then virel mono then rare disease then lymphoma but again im not a dr and my dr all of a sudden change his direction . diff in uptodate bio flagerhan cells and more Reply to this
11/13/2006 8:58 AM
Dawn wrote:
I was recently involved in a car wreck. CTscan of chest revealed two very large lymph nodes, ant. mediastinal 4.5cn, and subcarnal, 3cm, and mildly prodominant spleen. Initially, they stated hodgkins, however, the biopsy proved undiagnoisic. Pathologist stated that "looked like castlemans, however, didn't fit hyline or plasma, type, lack of clinical symptoms, strong arguement against plasma, rare mixed type, which this could be an example of, have been discribed." I tested CD30+ CD20+ and CD45+. CD15negative. I have no symptoms. CBC was good. I have an appointment with SLOAN Kettering in NYC tommorrow, because the pathologist stated that, "of greater concern that this was a subtle or brewing lymphocyte rich classical hodkins" I didn't even READ about the castlemans, until I GOT the pathology report from the dr. I asked him why he didn't tell me about that before, he said he really didn't think it was that. I did my own research, and I know that there is a really good chance that it's that. SO, I spoke to Dr. Munshi in Boston, who said he would treat me. My question is: I read somewhere else here, I should only go to Munshi if I'm limited to boston area. I am in NJ. SO, who would be better at treating this, Dr. Munshi or that guy in OHIO? I know everyone says this but I REALLY need to live, I'm 33, and have two small children and I have to get better. I would love to go to Arizona, and could probaby go for a week, but am not sure if I have the financial funds to go on a regular basis for ongoing treatment. Could I go for a consultation and treatment plan and go to someone else for the actual treatments? Do you guys do that? And also, should I let my thorastic surgeon take them out in the meantime? He stated that if they were still there in 4 weeks, that he would remove them all? I'm not sure WHAT to do! Reply to this
11/14/2006 5:06 AM
Melissa wrote:
I am just replying to dawn's post and offering support.
My husband and I are both in 30's (31 and 33) and have two young children. My email is lokissa@gmail.com if she would like to contact and talk.
It can be scary and overwhelming trying to make all these desicions.
Dr. Munshi is a very competent MD and knows Castleman's disease. However, based on the information you provide the first thing to do is to exclude Hodgkin's disease which ever Dr. you choose to see. The CD30+ cells would tend to point to Hodgkin's disease. If there is real doubt about the diagnosis then you could go see a MD specialized in Castleman's disease. Hodgkin's disease is eminently treatable and there are many competent physicians out there. Go to Memorial Sloan-Kettering. If there is real concern about Castleman's go and see Dr.Munshi or you may choose to come to see me, but Dr. Munshi is closer.
Dr. Frits van Rhee, MD, PhD, FRCPath, MRCP(UK)
Professor of Medicine
Director of Immunotherapy and Allogeneic Stem Cell Transplantation
11/22/2006 8:50 AM
Dawn wrote:
Thank you. I saw a dr at Sloan-kettering. His D/D is 1-reactive lymph nodes 2-hodgkins (nodular) or 3-large diffuse b-cell non hodkins. Repeat Ct scan at 2 months shows no change in those 2, and none in abdom. or pelvic region, so they are going to repeat biopsy to see. Thank you for answering I feel better about that CD30+ thing. Even if I dont have Castlemans, I will ever be connected/interested in this rare disease, and I hope the research that you are doing on IL-6 proves to be fruitful. I read on the FDA site that the monoclonal IL6 antibody is on the "orphan list" for the treatment of castlemans, does that mean that the government/FDA is providing $ to do research since it's such a rare disease? Do you already treat with it? I read so much material about advances in treatment such as this and also rituxian, but I was wondering, do you only treat with these med's in clinical trials, or are they using them as "off label" uses already...and that the research is for dosing? Just confused about it. Also, I would like anyone diagnoised to know that I will keep you in my prayers. Reply to this
The first thing to do is to know what the real diagnosis is. The slides need to be reviewed by a center with experience in CD and hodgkin's disease. Memorial Sloan Kettering should be able to resolve this issue.
Guido Tricot, MD, PhD Director of Clinical Research University of Arkansas for Medical Sciences Myeloma Institute for Research and Therapy Little Rock, AR
11/22/2006 9:03 AM
Dawn wrote:
Yes...that is what I want too. I originally went to Univ of Penn, which as you know, is a very good hospital. I thought THEY should have been able to correctly diagnois with such a large sample, they removed 2cm! Sloan Kettering wants to do their OWN biopsy, so I'm off to see another thorastic surgeon there. So, we'll see. Reply to this
11/23/2006 6:37 PM
Jim wrote:
Good Luck and let me know how it proceeds.
11/22/2006 7:32 AM
Stacy wrote:
Hi Jim, I will be getting a CT scan next week, I asked about the PET scan though they said that was more expensive and felt that they would get enough info form the CT scan to proceed. I was also ordered blood tests. I want to thank you once again for your wonderful site. I just have a couple of questions for you. When I go back to doctors after this what questions would you ask the doctor if you where me. Also I was still wondering if you know an estimate of about how many people actually have this disease in the world or USA. Thats just me wondering, and I thought you might know.
Thanks, The doctors at my hospital have been very nice and it makes me feel good about having this disease.
Sounds like you have a treatment plan in order. Each case is dealt with differently and I would ask your physician what follow-up he requires after the scan. If he does truly Dx it as CD, then is surgically resecting the mass the preferred treatment or can it be treated with drugs.
Hope this helps. Please let me know if I may be of further assistance.
Regards,
Jim Johnston, ED Castlemans Disease Organization Reply to this
12/1/2006 7:31 PM
Christina wrote:
To Whom it may concern, Today I was diagnosed with Giant Lymph node Hyperplasia. I had went to the doctor that told me that my lump under my armpit was a cyst at first. Nothing was detected in the biopsy, so they decided to remove the Lymph Node and check for Lymphoma. The doctor that I seen did not seem to even know what it was that I was diagnosed with, he stated that he would call me back after he talks to the pathologist. That was today and he of course he did not call me back and tell me what type or what to do. Should I wait? I am confused and have no idea what to do next. Do I get x-rays of my other lymph nodes? Please give me some advice.
You are going to need to know more information and my advice is if your current physician is not familiar with this disease, get a second opinion from a physician that can provide an adequate treatment plan and perform follow-up maintenance for this rare disease.
The first thing to do is make sure you have a clear-cut diagnosis of CD from the Pathologist. If he can't provide a diagnosis (including variant of CD), I recommend you get the slides to a proper CD professional. Depending on where you are located, I can refer you to a physician that treats CD on a routine basis.
Surgical resection is the treatment plan if it is a resectable tumor but you need to know the variant and how many nodes are affected. Be sure that all affected areas are x-rayed or CT'd (neck, chest, abdomen, and pelvis). Then there is routine blood work to be performed along with radiography to ensure that a recurrence does not happen.
Please advise where you are located and I can refer you to the proper research center. Finally, this is not to be construed as medical advice but a recommendation. I am not a physician but patient of 20+ years and have been down the same road.
12/2/2006 8:32 AM
Christina wrote:
Dear Jim, Thank You for responding so quickly. I am 29 years old and live in Southern California. Can you refer me to someone close? My biopsi was done on the lymph node in the axilla. It has been 3 months since I first found the lump, and my doctor still has not done x-rays or any tests besides the biopsi.Then they diognosed me with Lymph Node Hyperplasia. Is this the same as Castleman Disease? Please help, I am very confused.
12/14/2006 10:26 AMkeith wrote:
I am a 26yr old male with multicentric castlemans disease i had 13 chops 39 wks of rituxan im in remission for 1 yr now it was diagnosed when i kept getting DVTs in my legs ive been working fulltime since after my 2nd chop i feel ok yet always tired and Ive read many reports with grim endings what is the longest reported remission for mcd? i read only 50% of mcd peeps make it past 26 months could you tell me the longest you have knowledge of ? i need a goal lol i was treated by a normal cancer Dr that is affilated with Vanderbuilt in nashville Reply to this
I will forward your concerns to both the University of Arkansas for Medical Sciences and the Cleveland Clinic for a medical opinion. I will post as soon as responses are received.
12/15/2006 8:20 PM
Jim wrote:
Remissions are very variable in CD with some lasting a few months and others lasting for many years. If remissions last long, the disease is usually sensitive again when the disease relapses.
Guido Tricot, Ph.D., M.D. Professor of Medicine and Pathology Director of Clinical Research University of Arkansas for Medical Sciences Little Rock, AR
Reply to this
I share his concur, which is justified. I would like him to come and see me. 13 chops is quite excessive. If he has had so many difficulties in going to remission he is likely to relapse. He may benefit from either anti-IL6 ab therapy or alternatively peripheral blood stem cell transplant. In any case he needs to be seen by some experienced in Castlemans disease. If properly managed his prognosis should be good. I will be happy to see him
Dr. Frits van Rhee, MD, PhD, FRCPath, MRCP(UK)
Professor of Medicine
Director of Immunotherapy and Allogeneic Stem Cell Transplantation
12/16/2006 6:06 AMKEITH wrote:
i am feeling just gassed all the time i do not have HIV or any of that stuff i have no symptons of mcd anymore other than one week i weigh 190 next week 175 weight fluuctuating crazy. i just need to live as long as i can im a single father of 2 little boys and the thought of leaving them is enough to kill me Reply to this
I am writing to you as my partner was recently diagnosed with CD in London, UK.
My partner has HIV and had a couple of KS lesions removed. The KS occured at a CD4 count of around 400 and treatment with Truvada and Sustiva was started 16 months ago. He is of Middle Eastern origin. Since then he had several episodes of high fever at night, nightsweats, swollen lymph glands and sleeplessness. The episodes last approximately 3 weeks and occured approx. every 3-4 months. However since October the frequency of the episodes has increased to about every 3-4 weeks (3-4 weeks wellness and 3 weeks illness), the latest one started two weeks ago.
In the middle of November he was diagnosed with CD (after a lymph node biopsy). See the following quote from his medical report: "On examination he had bilateral cervical inguinal lymphadenopathy but there was no hepatosplenomegaly. Mouth, tongue, fauces were normal, there was no neurological deficit, there was no bone tenderness, chest was quite clear, pulse was 76 regular, there were no murmurs."
So far he is being treated with Prednisolone (50 mg per day) during episodes, which makes the symptoms manageable. The doctor will arrange for staging procedures and "we will need to think carefully about whether intensive chemotherapy would be helpful or whether we should try Rituximab, perhaps in combination with Ganciclovir". There is also the possibility of using an anti IL6 antibody therapy, should a European study be approved.
He was also told not to investigate CD on the internet in order to avoid unnecessary worry/stress.
This is where my questions come in: a) Which variant of CD does the above diagnosis describe? b) Who are the specialists for CD in the UK (particularly London), at which hospitals? c) How much should I by worried (the web site does state that prognosis is poor for the plasma cell variant and very poor for MCD). d) Should we avoid travelling (we just came back from a three week trip to Australia to visit my partners family during which an episode of symptoms started, assuming no other episode was due until February)?
Sorry for the delay. We have been hit with four major snow storms (5th and 6th pending in the wings) and dealing with travel to clients has been a struggle. I will attempt to guide you in the right direction but I need to caveat this dialogue with the disclaimer that I am not a physician but merely a patient myself (in remission 15+ years from HVCD). I will direct your questions to our medical staff where they see CD patients daily and have a better handle on drug therapies and treatment plans. It's going to be rough since we do not have a colleague in the UK but we do have an International CD correspondent and International Medical Director in Osaka, Japan (who I will copy on your email as well).
The questions you asked are valid and should be answered by your attending physician (provided he has a Castlemans background). If not, you still need to pose these questions to your primary care and ask if he can get an answer. In most cases, patients research this rare disorder and are more familiar with the disease than the physician that has only seen 1 or 2 patients.
The first question I have for you is what is the abbreviation you used stand for --"KS". I assume it may be Karposi Sarcoma (which is seen in CD patients and mimics CD variants). As to the drug therapies, you need to consult your physician due to the fact that depending on the variant and symptoms you may require aggressive treatment modalities and additional blood work. Without seeing the entire Pathology Report along with the various blood work performed and having it examined by our staff, it would be extremely difficult to Dx a variant. They may want to see you in clinic for a thorough examination.
As to physicians in the UK, I correspond frequently with one patient in the UK and he has had a good response and treatment from the following physician. Enclosed is the physicians data for your reference.
Dr.Malcolm Hamilton and Dr. Matthew Lumley Hematology Department Good Hope Hospital Sutton Coldfield, West Midlands. Intl tele 0121 378 6206 Email : malcolm.hamilton@goodhope.nhs.uk
As to concern about the patient, anytime a rare disorder that physicians are not familiar with is involved it makes me uneasy. Therefore, I revert to email correspondence and dialogue with seasoned professionals in that particular field.
Just keep in mind that CD affects the lymphatic system and radiography should be performed routinely on the neck, chest, abdomen and pelvis. Along with proper blood work, physicians should have an overall view of the disease based on symptoms and ht spots.
Please advise if this was helpful and if any additional assistance is necessary.
Regards,
Jim Johnston CD Executive Director Santa Fe, NM USA hmconsult@msn.com
1/15/2007 12:12 PM
Lars Kurth wrote:
Jim, thanks for your fast response. Sorry about the storms. Here some answers to my questions: a) KS stands for Karposi Sarcoma b) I believe the doctor my partner is seeing is a specialist [from what my partner told me it seems that he has seen at least 3 CD cases last year - guess that counts as a specialist] c) The doctor told my partner not to look up any information about CD on the web as most of it would be out-of-date and that he would have nothing to worry about.
This worried me slightly and didn't seem very trustworthy to me. So I did some research and found your web site, which does indicate that CD is quite a serious disease. That's also why I am asking for specialists in the UK and confirmation of what our doctor said. Better safe than sorry (-:
Best Regards -- Lars P.S.: Thanks for forwarding the info to a medical team Reply to this
1/6/2007 8:05 AMkeith wrote:
I have a medical question is it possible for me to have mulitcentric castlemans disease and not have Kshv or hiv or the castlemans virus? according to where i got all the chemo treatments my dr says they do not know how i got it and my case is so rare b/c i do not got all those viruses . ive asked him on several occasions if i could spread the castlemans disease to anyone like my two little boys threw saliva like them drinking AFTER ME he said i cannot pass it on is this true? Reply to this
Response from Guido Tricot, MD, PhD University of Arkansas for Medical Sciences
The majority of patients with CD are HIV negative and are KSV negative. The frequency of KSV positivity is only high in the HIV positive patients. With the increase in HIV positive patients there has been a rapid rise in CD. This points to the fact that CD is most likely initiated by a virus and is probably an overreaction of the body to the virus. However, in the majority of the HIV negative patients the virus causing the disease remains unknown. It is extremely unlikely that you can spread that virus to other people. By the time you develop CD your body has dealt with the virus and overreacted to it.
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
Up to 30% of people with MCD have no virus detected as the cause. In many cases, this is because Doctors don't have access to the best tests for KSHV (also known as HHV-8, or as the blogger calls it, "the Castleman's virus"). In other cases it may be because there is another factor which is causing the disease. In some this may be genetic, and in others we don't know the reason (environmental?).
Even in those with KSHV (which is indeed passed through saliva), there have been no family clusters of MCD (to my best knowledge).
-CC
Corey Casper, MD MPH
Assistant Professor of Medicine, University of Washington
Assistant Member, Fred Hutchinson Cancer Research Center
Medical Director of Infection Control, Seattle Cancer Care Alliance
1/10/2007 8:51 AM
Kimberly Roberts wrote:
I was wondering if I could get information sent to me about Castleman's Disease. My grandmother was diagnosed about 2 years ago. Lost her spleen, went through prednisone treatments and chemo. She was in remission until December 06. She only knows information about CD through what her DR. tells her in the 15 min appt. I would like to learn more and to be able to pass it on to her. Thank you. Reply to this
The website is a fantastic tool for gathering information to take to the physician that is not that familiar with CD. I would recommend copy segments of the site to take to your next Drs. visit. If the physician wises to speak to a treatment specialist (MD), we have 5-6 physicians in the U.S. that specialize in CD. I would be pleased to forward you their information for an initial consult.
1/17/2007 9:02 AM
Lara wrote:
I developed one large growth and two much smaller ones in a lymph node on the left side of my neck when I was 18. They were biopsied and I was diagnosed with Castlemans. The tumors were left in place, as my doctor at the time thought it would me more trouble to remove them than to leave them be. Now, 16 years later, the larger of the growths seems to have increased in size. I have moved and have a new doctor who is re-investigating my condition. However, none of the specialists I have visited here in New York City are familiar with Castlemans first hand, and I would like to go to someone who has some previous experience with it. Can you recommend anyone in or near New York? Thank you for you help and your very informative site. Reply to this
There are a few physicisians in the New Jersey are none of who I have had any dealings with. I do know of Dr. Munshi who was my previous physician while he was in Little Rock but has since relocated to Dana Farber School of Medicine, Boston, MA. He is still seeing patients and is an excellent CD physician. Here is his contact informaton along with the other local physicians. Please advise if I may be of further assistance.
Regards,
Jim Johnston CD Executive Director
Dr. Nikhil Munshi, MD, PhD Associate Director of the Myloma Center Dana Farber Harvard Medical School 44 Binney Street, M557 Boston MA 02115 (617) 632-5607 (617) 632-2140 Fax Nikhil_Munshi@dfci.harvard.edu
Roger K Strair , MD Hematology 195 Little Albany Street Cancer Institute of New Jersey New Brunswick, NJ 08901 strairrk@umdnj.edu hogangm@umdnj.edu (732) 235 8098 Fax (732) 235-6044 (Geraldine - Admin Asssist)
1/26/2007 8:49 PM
DT wrote:
I THINK THAT I SHOULD HAVE POSTED THIS COMMENT HERE FIRST. I APOLOGIZE FOR THE CONFUSION
Hello: I posted what is below and would like to post it here because I am uncertain who gets what message and where. I am in LR (ie UAMS) and have easy access to those experts. However, I am on a student budget and do not know if CT is really all I need first before I go into Dr. Van Rhee, who requires a several day stay as i understand. Please respond as soon as you can as I have posted this same concern prior to the construction of this message board/site and never received a response. I feel that I am ignoring something that may harm me unexpectedly. Thank you: I have unicentric CD diagnosed by removal of a LN from posterior cervical region in 2004. Only symptoms I have, that seem odd to me, are a rash in the subscrotal area and a patch of psoriasis on my chest. Fluiconide (spelling?) helps for the latter. Pramosone offers relief for the former. Two follow-up CT scans since the surgery showed no abnormalities, except a spot on the thymus or thyroid that was not worrisome. Recently, I found a psoriatic type patch near my left elbow. I am getting concerned. I also notice consistent diarrhea and fissure in the anal region, which Dr. attributed to hemorrhoids and low fiber. I am very concerned, but Drs. never seemed to be. I have a history of mono at age ~12. What would be the next step? Are any of these symptoms of concern. I do not know where to turn, since my Dr. seems indifferent and I left the Heme/Onc Dr. who diagnosed it. Reply to this
If you have access to the UAMS email system, I recommend you either consult with Dr Van Rhee directly or see if a telephone consult is in order. He will probably will want to see your most recent blood work and compare it with new labs if your recent lab work was performed sometime ago.
As to the rash, we do not have any clinical evidence that these hives are related to CD but I experience the same thing. I was Dx with HVCD almost 20 yrs ago. Since CD is an auto immune disorder, it manifests diferently in patients (varuious symptoms). This may or may not be related to your 2004 experience with CD. I will forward your email to the physicians there at UAMS and should get a response w/i 24-36 hrs. Let's see what they and recommend.
2/15/2007 10:46 PM
tanya wrote:
i have been diag. with castlemans too. i know how you feel. email me at reverema123@hotmail.com will talk more im from the boston mass area Reply to this
I have forwarded all your correspondence to our physicians who will respond STAT. Hopefully we can get you seen ASAP by the closest physician (Dr. Nikhil Munshi); Dana Farber Cancer Center. Please advise if you do not receive a response w/i 24-48 hrs. I can than make personal contacts. You may need to be seen STAT. Are you able to travel? Any restrictions?
1/28/2007 2:28 PM
David wrote:
Thank you Jim, The combination of vague symptoms and a vague "disease" causes fear that prevents me from seeking help because something may be found that will mount into something later, even though it is relatively innocuous now. I will eagerly await a physician response.
Again, thank you, and you deserve much praise for your work on CD. Reply to this
2/15/2007 9:37 PM
Cindy Chavez wrote:
Hello, I received an odd e-mail today from someone with the name Tanya Pelligrino, the subject stated "concern castlemans disease". Of course knowing that a limited amount of people know that my son has this disease I opened it, it had a reference to "asap me please". I came on to the Castlemans site to see if there was anyone with that name on here, and I could not find anyone. I guess I was wondering if anyone else received this e-mail, I'm not sure what it is for, it just concerned me. I don't believe that it is a legitimate e-mail from someone. Thanks. Cindy Reply to this
2/16/2007 12:28 AM
Laurie wrote:
Cindy, I received the same email. I, too, have the PC variant. HMM?
2/17/2007 11:21 AM
Beverly wrote:
My mom was dx Plasma cell type CD back in august sept of 2006. Mom has had many health issues for many years from heart disease, copd, diabetes.The diagnosis came with a biopsy of an enlarged lymph node in her chest that she had for a while that finally changed.Her health has declined steadily since this diagnosis was made.She was sent home on 3 liters of oxygen and a regimen of 80 mg of prednisone daily which in turn sent her diabetes out of control and she filled up with fluid in her legs and left arm.her skin split open in her legs and we are treating her for infection. She had ben on lowered dosing of the pred. and started on Etoposide 50 mg daily which she endured for about 3 weeks and had to be stopped due to the outbreak of infection in her rashes/wounds in her leg.We are in the dallas/fort worth area. She recently ended up in the hosp with congestive heart failure and is now home.At the present time her oxygen is up to 5 liters, she is taking prednisone 10 mg daily plus several other meds for her heart,diabetes,depression etc.she is 69 years old.She is weak, her abdomen is quite distended, she is having difficulty making from her bed to a comode without losing her bladder.he hematologist oncologist she has been dealing with is not experienced with CD has never treated it before! We are currently praying she makes it to see a "specialist" Dr. houston holmes from Baylor medical center.have you heard of him , do you know of someone in this area that has experienced CD patients? Mom is a very sick lady and all we are hearing from her md, pulmonologist, and hematologist/oncologist is that they are doing all they can and there isn't anything else they know to do.For mom when she is active in the slightest way usually her oxygen concentration had been dropping to 80 and her heart rate is shooting up to 140's since the increase in oxygen ,that has gotten a little better, les stress for her.We take her to the hospital they keep her a week or so and are sending her out?!???!She hasn't given up and we are exhausted trying to find the best possible dr. and treatment to try and get her stronger and maybe in remission, they claim due to her low oxygen she is in right heart failure.She recently had some fluid in her lungs as well. They had wanted to do a lung biopsy but tell us they are afraid she will die during that procedure,In my reading, I see a pet scan is recommended, I only know of catscans of her lungs, it is like they have not checked her for tumors elsewhere. Please help us , guide us to someone that will help us. Beverly Reply to this
Castlemans Disease requires the intervention of a CD Specialist. I recommend you have a telephone consult first with one of our Specialists and follow-up with a clinic visit (as I am sure the Dr will request). There are two facilities with excellent CD physicians. University of Arkansas for Medical Sciences (UAMS), Little Rock, AR or the Mayo Clinic, Rochester, MN. Ask for Dr Frits vanRhee at UAMS or Dr Angela Dispenzieri at Mayo. Telephone numbers are as follows:
I discussed this information with mom and she is willing to take the trip if we can arrange medical transport from dallas Tx to Arkansas. So I will be contacting Dr.VanRhee within the next few days to get an idea of what we will need to get her there to see him. I am sure we will need all her medical records forwarded to him. I was wondering if anyone may know of the process or who to contact to arrange a medical transport and wether or not medicare would cover any of that expense? How would the Dr. follow her care after the intitial visit, considering the distance between mom and him? Do we simply bring her reg. MD in on this to assist the specialist with her care from affar? I know the Dr. can answer these questions,I am just thinking someone on site here may have experienced this dillema already and could shed some light for us.
Thanks again and thanks in advance to anyone that may have some info to help us plan for moms trip.
You are correct regarding medical records. Sign a release with your mothers current physician and get all her records and any films available to take with you. This will speed up the process of evaluating films and reports with a comparison available. It's best to keep copies of all your medical records so you have them in the event of a second opinion or alternative treatment is required by another physician.
First order of business is to call Dr van Rhee's office and see what appointments are available. Then coordinate your mothers visit with the UAMS Social Worker (501) 296-1503 x1203 and the in-take coordinator (888) 693-5662. If there is any assistance they can provide, ask them at this time. Since your mother is on Medicare, you may need a prior authorization from Medicare before traveling. Contact Medicare and ask about the prior auth. so they may arrange for an expeditious coverage without having to waiting in Little Rock.
As far as follow-up, normally Dr van Rhee provides discharge instructions if surgery or treatment was provided. To follow up, simply give Dr vanRhee the name and telephone number of your current physician and ask him if he would consult with your local physician (unless specialized treatment is necessary) regarding special instructions, labs and appointments. This way, you may not have to make the trip to Little Rock as frequent as needed and follow-up may be handled by your local physician with the assistance of Dr vanRhee.
Please do not hesitate to write if further clarification is necessary.
I wanted to follow up and let you know what has transpired since we last communicated about mom. I did get to speak directly to Doctor VanRhree, what a pleasant and kind man! Shortly after actually being so close to getting mom out to see him, moms hematologist/oncologist that (I personally dont care for)saw her and my sister and I and told us mom was too weak for such a trip and that "they" meaning Dr VanRhree and UAMS couldn't do anything more or different than what he was doing here for her.Told us to leave her be and that she had 4 months to a year left. I had asked about anti interlukin 6 and I was told it would kill her. He also said Dr.VanRhee sounded stupid. I am so disturbed with his attack on me and Dr. VanRhee as if I was wrong to even look into a specialist for mom.Anyway we went home that day heartbroken and setting up hospice for mom. Less than a week later mom who has had some of the worst edema I have ever seen since they treated her with high doses of prednisone and Etoposide and had ended up in the hospital with congestive heart failure and fluid in her lungs began to lose oxygen concentration which dropped to 80. The Hospice nurse came and proceeded to tell us mom wouldn't make it through the weekend.Well mom made it through the weekend and it is a good two weeks later and mom is in a skilled nursing facility having rehabilitation to help her get a little stronger before we bring her back home.She had been on 5 liters of oxygen and is now holding oxygen concentration at 95-100 at times with 4 liters of oxygen.She is doing so well and short of a miracle I am wondering if maybe now that the side effects of high steroid fatigue and edema as well as the oral chemo she was taking for about 3 weeks may have indeed helped in some way to have her come back to this degree from death.I am very concerned though about this "Flank Edema" which is also in her outer thigh area. All the leg and arm edema has subsided with 80 mg/day of Lasix being given her for the past gosh month at least, but this "flank edema worries me. I researched it on the net and find it may have to do with her kidneys and I was wondering what tests would be done first off if this is a symptom of the Castlemeans. I was told by this hematologist/oncologist that moms castlemans is multicentric but I truly cant stand his bedside manner and cocky attitude towards me after wanting to see a specialist.He did say "If anything you should send her records and samples to the mayo Clinic in Rochester", I have moms permission to send her records to a specialist if not to help her to maybe help in the research for this disease so that one day maybe someone else can benefit from her case.
You are not cocky, Dr Van Rhee is not stupid, and the lack of medical attention provided your mother by this (so-called) physician is just the reason why I tell patients we now must begin to take responsibility for our own health care.
You as a patient advocate for your mother have every right to seek alternative opinions from outside sources. If this current physician does not want to work in a collaborative healthy patient-physician relationship, then I would seek treatment somewhere else. To blatantly discredit another colleague in front of a patient is not only unprofessional but rude. Needless to say the physician is probably not a SPecialists and should not be trusted to provide assistance for family.
I am going to forward your email to Dr VanRhee and let him consult with you regarding further long distance treatment. I am glad to hear your mother is feeling better. Let us get her on the road to recovery from Castlemans. I have enclosed a list of the routine blood work performed by UAMS on patients seen with Castlemans. Please advise if this was of any help.
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
I am planning on continuing my communication with Dr.VanRhree,I know if there is anything that will help mom it will be a specialist that will know.Mom has bounced back incredibly and is actually beginning to walk as well. She says she just cant believe how well she feels. The Flank Edema has just about resolved and I truly believe that maybe the Castlemans has gone into remmision. Would doing all these tests you mention confirm a remmisive state of the disease and are there maintenance treatments for it when in remission? Mom is still taking 10 mg of prednisone daily.I imagine I should try and connect with Dr.VanRhree and see if I can hook up moms MD with him. Moms regular MD seems to be willing to work with Dr.VanRhee to organise moms treatment for the Castlemans.This is my quest!
I am so relieved this resource is here to depend on, thank you!
2/22/2007 5:53 PM
Lori wrote:
My son-in-law has just been diagnoised with CD. The lymph node was positive but the staging of the diease is not yet complete. His petscan showed "hot" nodes in his lungs and groin. His spleen is also 10 times the size it should be. His labs have been "out of wack" for over a year. He has had montly labs and cat scan for a year now. The bone marrow test preformed in August 2006 was negative. His oncologist is sending him to University of NE Omaha Med Center. But I am not sure of the doctors name. He has a six week old baby, my only grandson, and of course I am very worried. Please let me know if there is a good Dr. at UNO that deals with CD and what the prognosis or treatment might be. Any help would be appreciated! Reply to this
Before your son-in-law visits this new physician, I wold have a telephone consult with him first, get his name and try and see how many Castlemans patients he has "treated". Then ask him what variant of CD is he experienced with and based on your son-in-laws prognosis and over-the-phone consult, can he recommend what treatment options you will have? We have Specialists that specialize in only Plasma Cell variant patients (not to say they can not treat others) but their primary experience is in Plasma Cell Castlemans Disease (PCCD). This is important if you are treating a patient that has been diagnosed with Multicentric or Unicentric Castlemans Disease.
Castlemans is a specialty all of its own and does require a physician that is familiar with treatment modalities as well as symptoms.
Hope this helps. Please do not hesitate to write with any other questions or concerns.
2/22/2007 11:23 PM
Liz wrote:
I am in Utah. My Mother-in-Law was just diagnosed with CD. Can you give me the location of the nearest CD specialist? Thanks in advance! Reply to this
Unless there are any other physicians that I do not know of in the mid west, Seattle or Little Rock would be your options. Depending on the diagnosis (Dx) and variant you would be referred to one or the other. Seattle primarily deals with the Plasma Cell Variant (PCCD) where the University of Arkansas for Medical Sciences (UAMS) can handle all variants but their specialty is Unicentric / Multicentric Castlemans Disease. The email addresses for the referring physicians are located on the main page of this CD website. If you need further guidance, please advise.
I do remember one patient speaking about a treatment facility in either Phoenix or Scottsdale. I will investigate and if I find a physician in that area, I will advise. You definitely want a physician that has experience with the various Tx plans as well as running specific tests and proper Dx as oppose to watching the clinical course of the disease.
3/4/2007 7:05 AM
Louise wrote:
I am 19 years old. I got a 4cm mass removed from my lung (right side abuttin r hilum)and lab reports said it was hyaline Vascular Castlemans Disease. I had PET/CT scan which showed clear. Am now awaiting six week after operation check up. I have a few questions?? Firstly is this lightly to come back again. Because it has been romoved does that mean that I no longer have CD. I'm from Co Kildare Ireland are there many more cases in Ireland that are known of. Reply to this
I too was diagnosed (Dx) with the Hyaline Vascular Variant of CD although when I was diagnosed, physicians did not know that much about this disease. I am not a physician and can not speak medically about your case but can tell you what I was told by my CD Physician. The HV variant is the less evasive of the variants and once the entire mass is resected the recurrence rate does drop. I can't say that it won't recur because we have clinical evidence that shows recurrence in a few patients. That is why post operative lab work and routine CT v. x-rays are important. Hopefully the entire mass was resected. My physician had me seen in clinic every 6 mos post-op for one year the annually thereafter. The same holds true with the frequency of lab work (blood drawn). If your physician is not familiar with the protocols for the lab work, please write back and I can send you what the University of Arkansas for Medical Sciences (UAMS) recommends to patients for this procedure.
I hope this answered some of your questions if not all. Being Dx with a rare disease such as Castlemans is tricky to treat and requires a physician that is meticulously familiar with the disease. If your Dr would like to correspond with our Specialists here in the states, please advise and I will forward their email address.
3/12/2007 7:38 AM
louise wrote:
Hi Jim Just a note thank you for the information you gave me. I will speak to my doctor on my next appointment and hopefully he is familiar with CD if not I may be back on to you. Have you heard are there any specialists in Ireland? or has there been many cases reported??
We have had cases in Ireland but have not heard of any SPecialist there yet. Due to patient confidentiality and certain HIPAA requirements here in the states, I can not give out names but can only state the there have been cases. If I hear of any SPecialists there or of patients from Ireland read this blog and are familiar with any there, I am sure you will get a message here on the board.
3/7/2007 8:50 AM
tracey jensen wrote:
my relative was just diagnosed with CD. how did he get it, is it hereditary? he is scared, lost approx. 100 lbs in 2 months and now getting IV treatment with some meds. at a hospital that even the docs do not know much about the disease. any help would be great, as far as info, support, web sites, or where doctors that specialize in CD are located. thank you. march 7 2007 Reply to this
Sorry for the delay in writing. I have been in the hospital for minor surgery.
As far as CD being hereditary, we have no clinical evidence that this is passed on to other generations. It is an auto-immune disorder that is considered in the non-Hodgkin's family and is a rare disorder. My advice is to ask questions of your attending physician or Hem/Onc. If you are not getting the answers you need, get second and third opinions (if needed).
First order of business is to find the variant of the disease your relative has. What are the symptoms etc. and forward any test results performed by previous physicians to other atttendind MDs. Once the variant is Dx, a treatment plan will be identified by your SPecialist.
For further information on treatment plans, CD variants, or associated illnesses, please visit my website at www.castlemans.org.
3/22/2007 1:04 PM
Vickie wrote:
I am in Nashville, Tn and my Dad was just diagnosed with Multicentric Castlemans Disease. He had a sugical biopsy of chest lymph nodes and liver two weeks ago and we were just given the CD diagnosis yesterday .
Since Nov. 2006 he had two needle aspirates of lymph nodes and bone marrow biopsy with no conclusive results until now.
He is a patient at the VA but has a Vanderbilt Hematologist that is treating him. Dr. is not a specialist--in 30 yrs. has never seen a case like this.
My dad is 73 and has lost 70 lbs., is extremely weak/anorexic, and anemic. He has no edema, but spleen and liver are enlarged.
Could you give a referral for a specialist here? Any help would be appreciated. Thanks. Reply to this
I do have a VA Specialist in the area of Castlemans Disease but I do not believe he sees patients. I will forward this to Dr Rose and see if he is seeing patients now. He is in Research for the VA in Washington, DC.
My recommendation to you at this time would be to correspond with closest facility; University of Arkansas for Medical Sciences, Little Rock, AR. I refer many patients to Dr Frits Van Rhee. His email address can be seen on the first page of this web site. He is a Clinical Medical Director for the Castlemans Organization and sees this type of patient routinely.
Please advise if further clarification or information is necessary.
3/23/2007 7:26 AM
Vickie wrote:
Are there any physicians at Vanderbilt that you know of? If not, I believe our attending physician will be aggreeable to a phone consultation with Dr. Van Rhee.
Thanks so much for your presence on the web!!! It really helps. Reply to this
I recommend a phone consult with VanRhee to get the ball rolling. I need to do some homework with Vanderbilt and will have to wait until Monday. A phone consult is the most expedient measure at this point.
3/27/2007 6:25 AM
Richard Cooke wrote:
Hi Jim, just a quick hello from this side of the pond. I was in hospital for 3 days last week for MRI scans but results were good. I thought I'd let you know as it is ages since I last contacted you. My CD seems to be kept in the background for the time being, but my general health is a little rough, but still on my feet.My regards to all my old friends State_side.Kind Regards Richard Cooke (England) Reply to this
Jim: I have been battling Castlemans for two years. Had three surgeries to remove benign tumors in the neck, groin and underarm. The doctors diagnosis has been a combination of hyaline-vascular and plasma cell type castle man's. First treatment was heavy doses of prednisone that stifled the disease for 5 months before symptoms reoccured. Next treatment was four weeks of rituxamed. Again the genie was put back in the bottle for another 4-5 months. Recently, my IL-6 has increased, hemoglobin decreased and other tests reflecting a return of castleman's. I had a choice of trying retuximed again or a stem cell transplant. We are trying the retuximed again before stem cell transplant. Looking for additional treatment suggestions and options. Thank you for the time.Richard,
Thank you for the update. I am sure this is encouraging for patients newly diagnosed or undergoing treatment.
3/27/2007 7:24 AM
Judith Missick wrote:
Hello Jim, My husband has been dx with CD in 2005. He has two tumors in his chest one next to his heart vena cava and the order is pressing against his esophagus. Our dr doesn't seem to know much or too concern, he told us to take a wait and see approach. This was from 2005 every six month ct was done with no changes. Now we have no insurance. My husband does not feel well he has pain in every joint but we not sure if it is related to CD. Can the tumor cause the pain and the general ill feeling? also i heard it said that the tumors that attach's to the organs can feed off them is that so? and lastly can this turn to cancer? The dr said "its like having a time bomb in your body" those are his actual words. His dr is an oncologist. I know you not a dr but your feed back will be helpful. Reply to this
I will send this off for a multiple medical opinion. We should hear back w/i 24-48 hrs. Historically, clinicians want to take an aggressive approach for treatment due to the multiple locations of tumors. In this case, waiting and watching the cynical course of the disease is NOT an option. I need to caveat this statement with the fact that I am not a physician but a patient myself and was given the same medical advice when they dis not have a treatment plan or knowledge of the disease.
My tumor was in the general area (mediastinal mass). They have the potential of growing large and attaching to vital organs which become life-threatening. Surgical resection was my treatment plan of choice. I have been in remission for 15+ years but due to the fact that this is a rare disease and attacks the lymphatic system, auto-immune deficiencies may arise. I ave had my share of that.
I will post any medical advice I receive here on the blog. Please advise if I may be of further assistance.
4/4/2007 12:11 PM
Judith Missick wrote:
Thank you so much for your help.. sorry this is a bit long.. I have read the response, my feeling is that there might be a mis-dx here or a typical case of the dr. not knowing about this phenomena. My husband did do a pet, the ct read " well define mass with smooth edge with a small area of ill define margin that show local aggressiveness, and this is how the pet test read" Based on a review of Nuclear Medicine Annual 2000, the mean value for lung carcinomas Is 2.7 +/- 1.2 and a negative predicted value for nodules bigger than 1 cm is 97% using this test. Values less than 1.4 are felt to be unlikely to be carcinoma. DETAILS OF CLINICAL FINDINGS: On these images, there was no significant motion artifact At the site of the masses on CT, no definite FDQjuptake Is seen on fusion images. However there Is low grade uptake seen posterior to the left atrium with early T/B value of 2.77 and delayed T/B value of 2.72 Images, and In the posterior mediastinum with a maximum tumor to background ration of 2.38 Identified on the delayed images, There is prominent uptake on both early and late images identified in the lower nasopharynx but this is in the midjlne, with an early value'of 3.69 and delayed value of 5.34, which may reflect a benign saliva mjdline symmetric activity slncenol mass [s seen in this area on the chest CT. I appreciated the fact that you are not a dr. and also that the dr. who does read this can not give dx without seeing him but your opinions helps me to communicate with my dr. Thanks again and my God Bless every person blogs here. Reply to this
4/5/2007 8:46 AM
Judith Missick wrote:
Yes by all means send it where ever you can, we been starving for information for, too long. I though we were alone in this I am so happy to find someone out there who knows or can direct us for help. I live in Miami Fl and its seem the doctors have no clue about what is going on, not putting them down but I leave their office with more question then answer every time so we got to the point of not even asking any more. Thanks Judith Reply to this
It is possible that the symptoms are related to CD, although it would be unusual unless new tumors have developed elsewhere. A pet/ct scan would be a good test to evaluate that. These tumors will not feed of the organs they are attached to. These tumors almost never turn into cancer, unless the initial diagnosis was incorrect. It would be best to evaluate if the tumors can be resected. This should be done by a competent thoracic oncologic surgeon.
Guido Tricot, MD, Ph.D; Director of MTRC (Myeloma Transplant Research Center); University of Arkansas for Medical Sciences (UAMS); Arkansas Cancer Research Center; Little Rock, AR 72205; TricotGuidoJ@uams.edu
3/29/2007 12:12 PM
Lucinda wrote:
I have been recently diagnosised for CD. I had Lipoma,left antecubital fossa. This is the fifth surgery for Mass/lymph node. Pathology reports reactive lymph node with follicular hyperplasia. Atypical follicles with hyalinized germinal centers and a background of plasma cells. On this fifth surgery is when I found out I had CD. Now, about Ten years ago is when the first was removed at about the same time I was told I had Rheumatoid Arthritis,I was never told I had CD. Since that point of time till now, I have had these masses/lymph nodes removed from right armpit, right forearm, left neck and also ovaries and tubes removed because of large cyst/mass. Also in the process I have also had to have surgery's on both hands and had to fuse and plate them together. I have also been told I have thoracic outlet syndrome. I am seeing Dr. Sunnenberg at Sacred heart Hospital Cancer center in Pensacola Florida, have you heard of him. And, if you can tell me that here lately I have been getting very ill, from benign heart arithymias to cherst pains to dizzyness, and now some days I sleep for days at a time. The Dr. has me on Valtrex because of the shingle type rash I get im my left eye, sometime large cit sore on my face and ithcing (Skin rash I guess> Now some of these sytoms I have had before but not as much as now. Could all this be because of CD. Help? Reply to this
First off, I need to caveat this email with the statement that I am nit a physician but a patient myself of 15+ years and CD patient advocate.
I am going to forward this email to our Plasmasitic Specialist at the Fred Hutchinson Cancer Center. Dr Corey Casper is our Specialist in the Plasma Cell variant. Providing he is not out of the country, we should hear back from him shortly on his recommendation.
LUCINDA, Response from Dr Dispensieri (MAYO CLINIC)
Having reactive lymph nodes is not uncommon in patients with rheumatoid arthritis, so I can understand how there could be confusion (and perhaps many of your masses were all related to rheumatoid arthritis and not CD). Certainly the surgeries on the hands sound typical for patients with rheumatoid arthritis (RA).
It is difficult to know whether your dizziness and/or itching are related to the CD.could be. Are you taking medicines for your RA? The immunosuppressants used for that condition certainly can put you at risk for herpes outbreaks. Since many side-effects can occur due to the RA itself and the medicines used to treat it, it difficult to know what is due to that disease versus the CD.
To sort this out you would need an office visit with your doctors or another doctor who specializes in CD.
To answer your question about the doctor you mention, I do know him, but there are a lot of doctors in this world.
Angela Dispenzieri, M.D.; Associate Professor of Medicine; Mayo Clinic; 200 First Street SW; Rochester, MN 55905; dispenzieri.angela@mayo.edu
I think the most important issue is to have all the biopsies reviewed by a center with experience in CD to see if the diagnosis is correct and go from there.
Guido Tricot, MD, Ph.D Director of MTRC (Myeloma Transplant Research Center) University of Arkansas for Medical Sciences (UAMS) Arkansas Cancer Research Center Little Rock, AR 72205 TricotGuidoJ@uams.edu
. His name is Jose E. Sarriera.
I feel better about that CD30+ thing. Even if I dont have Castlemans, I will ever be connected/interested in this rare disease, and I hope the research that you are doing on IL-6 proves to be fruitful. I read on the FDA site that the monoclonal IL6 antibody is on the "orphan list" for the treatment of castlemans, does that mean that the government/FDA is providing $ to do research since it's such a rare disease? Do you already treat with it? I read so much material about advances in treatment such as this and also rituxian, but I was wondering, do you only treat with these med's in clinical trials, or are they using them as "off label" uses already...and that the research is for dosing? Just confused about it. Also, I would like anyone diagnoised to know that I will keep you in my prayers.
i was treated by a normal cancer Dr that is affilated with Vanderbuilt in nashville