Castleman’s Blog

My fiance recently was diagnosed with castlemans here in Alaska. He is currently undergoing rituxan treatments. We are very confused as to how he might have developed this. They have done bloodwork and does not have HIV. Is this hereditary or maybe something he got while in the Navy. Any information about how he might have contracted this and if he will have this all his life would be greatly appreciated. Thank you.

My brother has plasma cell CD, hemophilia and HIV and the doctors give him between 6 months till 2 years to live. Is there no proven cure for this disease.

During a thyroidectomy, They removed one lymphnode and found plasma cell Castleman’s. I saw Dr. Van Rhee in May of 07. Since then my doctor’s are calling it incidental finding and are not worried about any of my swollen lymph nodes in my neck or groin. I have recently been diagnosed and had surgery for Chiari Malformation which inproved some of my motor skills. It did not affect the Postural orthostatic tachycardia syndrome.(two failed tilt test. one before surgery one a year post surgery) Does POTS have anything to do with Castleman’s disease? I can’t go back to UAMS due to being on medicare and SC medicaid.I have asked for a PET scan but My doctors think it is not necessary due to the fact it was incidental finding and won’t return. Do you have any ideas on hoe to approach my Dr’s to get the tests done to make sure. I still have symptoms of Castleman’s.

Carole, I have Castlemans, hylane version but I also have systemic mastocytosis. There is literature suggesting a connection between the two.One of the first symptoms are the itching, hives & rash you described. Feel free to e-mail me, BMurphy375@aol.com if I can answer any questions for you.

Dear Anonymous,

Here is a response from Dr Tricot, University of Utah

I think all the right things have been done. Corticosteroids would be another option, but this also comes with a price. Radiation therapy has been successful in some patients.

Guido Tricot, MD, PhD< ?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

University of Utah School of Medicine

30 North 1900 East, Room 5C402

Salt Lake City, Utah 84132

(801) 585-3229

Fax: (801) 585-3432

guido.tricot@hsc.utah.edu

I have a long history of retroperitoneal castleman disease on right side. Mass is highly vascular and surrounded by iliac artery. It has been embolized with some resolution of symptoms but is in-operable. Pain usually low grade and persistent with increasing pain with activity. Constitutional symptoms sporadic with occasional episodes of fatigue and night sweats. In the same area of pelvis I have a history of sometimes large physiological cysts and at times of evaluation occasionally hemhorragic. Pain could be directly caused by cysts but is not altered by cycle or with resolution of cysts on sonogram. Occasionally I have sharp/persistent pain down the front of the thigh.Pain increases significantly for sometimes days at a time with jarring activity such as driving on bumpy road or riding a carnival ride but is still centered in right back and psoas area. Occasionally with this jarring activity my right foot will become numb or have the pins and needle sensation you feel when sensation returns to a limb that has “fallen asleep ” and the small muscles on the front of the shin will cramp. Lately this increased pain and change in sensation has occurred with out the jarring activity or long drives but has occurred while standing at work. Still always on right side and not necessarily new in nature but much more frequent and persistent. Last CT scan showed no change in mass. PET scan approximately 2yrs ago showed mass on right side with SUV of 5.4 and 2 masses in lung with SUV increasing on delayed scan above 2.5 range. A year ago I tried a course of rituxan. Weekly x4 weeks; monthly x 3, then 3 months out. Rituxan infusion caused severe pain in mass area (even rivaling pain of embolization) for about 24hrs but otherwise seemed to do nothing. Labs and stains indicated response to therapy but no change in mass or symptoms. Gastric issues prevent use of oral steroids.I have reached a point where attempts at treatment have caused more problems than symptoms or have been non-effective like rituxan. Now though, propoxy/apap for pain and iron as needed for anemia not currently as effective. Pain and discomfort has greatly increased. While I can effectively work and financially support myself,managing the household (cleaning, yard work, etc ) has become much more difficult. I have a follow-up appointment in January. Any suggestions to discuss at this up-coming appointment ?

Hi Jim:
I have been following this website off and on for the past three years. Thought I would share with other CD patients my situation. In a nut shell I was a very healthy individual playing college rugby, running 12 marathons and now at age 47 have been battling CD since August 2005. I have received two courses of prednisone treatments, two courses of rituximab, one high dose dexamethasone, six rounds chemotherapy of rituximab with vincristine and palonosetron. I will begin an Autologous Stem Cell Transplant on October 27th at the Lied Transplant Center in Omaha, NE.

Living with Multicentric Castlemans disease has become slightly challenging. Finding a treatment that will cure my Castlemans disease is slightly more challenging. For your readers of this note, every day it is important to wake up put your feet on the ground and tackle ones routine daily activities.

For me running became important back in 1978. Running here, there anywhere. My current running buddies have been very supportive during my treatment procedures. We are year-round outdoor runners. My wife chastises us that in the winter we will freeze parts that should not be exposed to a the weather elements. These Buddies have been training for a marathon while I struggle on three, four and five mile runs. Walking when there is little energy to lift the legs in a standard stride. Last weekend was a milestone, running Omaha’s Corporate Cup 10K race in 56 minutes not having to stop and walk at any time during the run. 56 minutes is a slow 10K time but I wonder how many of the 13,000 runners that beautiful fall Sunday morning were also going through Chemotherapy treatments.

I am being told that the average hospital stay is 10 days for the Stem Cell transplant and a week or two recover at home to gain strength before retuning back to work. Well, this treatment will be my marathon this year. Head up, chest out, relax the body, find your rhythmic stride, step…step…step… Each day will equate to another mile completed. It is a long race with a finish line 26.2 miles away.

Thanks for reading my note.

Lisa,

I have forwarded your email to the CD medical staff for a technical and medical opinion. As soon as it is received I will post it for you and other bloggers to read. Thank you for your comment and question.

Regards,

Jim Johnston,
CD Executive Director

Hi Jim:

My sister was diagnosed with HVCD about 7 years ago, and just found an enlarged lymoh node in her neck. She has surgery last week and sent out to pathology. It came back as a retroactive lymph node (BENGIN. Thank god – What does this mean? Is this a reaction to the castlemans disease? Thanks again for all you do for everyone.

Though I believe and Jim can correct me if I am wrong, this website deals more with the medical issues and current research into the disease. That having been said, I am a grad student with CD and can be very certain the answer is no, there are no scholarships to be found for someone with CD, as of yet. Please keep in mind this was only discovered (I believe) in the 60s by Dr. Castleman and is still considered rare. Only through this website I have seen so far that Jim has started, do the people find anywhere from a basic to indepth explanation of CD with a simple break down of the disease for the average person to understand.

Kelleigh R.

Jim,
Have read all comments with interest. I have mcd (dx after mediastinal lymph node biopsy) with apparent lung involvement and have had rituxan treatments (lately every 6 months) for 1.5 years with success. Lately, however, seems to be decreasing time between treatments before feel need of another. E.g., CRP is 125 after just a few weeks of last treatment and I have to increase prednisone to keep most constitutional symptoms at bay.
I am interested in tocilizmab treatment but cannot find where it is available. Also CNTO 328 seems to be a second alternative. Can you or someone comment on these treatment options and where they are available (I live in San Diego).
Thank you!

Dr. Frits van Rhee,
Dr. Guido Tricot
Jim,
Thank you all for your responses. I greatly appreciate you comments and the time you take to answer concerns of patients on this site. I will make sure to advise you all of the outcome. You are all a great comfort to me. Very sincerely, Gwen

Great news Gwen. Seems as if your physicians have opted for an aggressive approach (which is needed). The following response was just received from Dr vanRhee of Little Rock UAMS. He states . . . .

” . . . . HVCD recur as PCCD.  The answer must be yes.  Autopsy has shown that when you look at multiple sites the histology can vary from plasmacytic to hyaline vascular. Recommend CT neck, chest, abdomen, pelvis   Recommend biopsy nodes.  It could be something else or a reactive node.”

Thanks so much, Jim.
I saw my hematologist/oncologist and he sent me to see my surgeon today. I’m scheduled for surgery Tuesday to remove the largest node and the surgeon mentioned I might need to have a drain tube. (?) I think they’ll be sending the tissue to Mayo in Rochester for examination. I hope to have results in a couple weeks. Thanks for sending my first post to the doctors you know. I look forward to reading their responses. I really appreciate what you do for all of us with this medical/life challenge. Hope you are doing well. Best regards, Gwen

Hi Jim,
I was dx’d in 2003 with HVC. I had one inguinal lymph node removed. April marked five years w/o signs/symptoms. I recently discovered another enlarged inguinal node, but on the other side. Had a CAT Scan last week. It showed several nodes in that area 1.5 cm – 2 cm and two enhanced nodes more caudally located. The node I discovered is 2-3 cm. My questions are – is this considered multicentric? Can HV become plasma type? I see my doctor in a few days, but would appreciate your help. It’s always hard to wait! Thanks so much. Gwen

Is there another conference planned?

Does anyone know if there is any connection to Celiac’ disease?

Jim,

I’ve been having trouble off and on since my treatment with rituxan and tumor removal 3 yrs ago for PC/CD, but things have started to get even more troublesome. I’ve had every little bug that’s come along over the past couple of months. Starting about two weeks ago, I noticed that when I ate, I got full very quickly. Even with eating just a little, I would get an uncomfortable fullness in my upper abdomen and would have to sit leaning back just to be able to breathe normally. Trying to lay down was impossible. I didn’t go to the dr for it but did request my basic CD blood work done. My CRP was 14.2 and my white blood count was 3,000 (normal 5,000-10,000 per lab). My sed rate was normal at 15. My latest bug going on now has flu like symptoms. I’ve run a temp for 3 days along with chills and sweats. I have gotten an appt with my oncologist for the end of march. Should I be a little more proactive with this or just wait it out?

O.K., I have some more questions if any one can help, I would really appreciate it. I recently had my first PET Scan and I was able to get the report but no one to tell me what it all means. If anyone can translate the medical terminology, and/or the bottom line of what it all means, I thank you so very much. Here are the findings- 1-Asymmetric vocal cord activity, probably physiological less likely left vocal cord paralysis (could this be why I have been having so much difficulty swallowing?)2- Intense F18 FDG metabolism is seen involving a group of scalene muscles of the neck bilaterally. 3- Increased F18 FDG seen focally in subcarinal region which appears to be within the esophogus with SUV-m of 2.06. 4- Heterogeneous hepatic parenchymal activity seen with focal increased F18 at the portal confluence region, probably vascular in origin with SUV-m of 1.97. 5- several clips or calcifications are seen in the right external iliac artery region ( I don’t have any surgical clips). 6-within the L5 vertebral body centrally, an area of lysis is seen measuring 8.1 x 5.5mm with a central dot like density. 7- Increased metabolism is seen lateral to the left femoral greater trochanter, compatible with bruisitis. 8-hypoventilatory changes in the lung basis. 9- a small hiatal hernia is present. 10- a .3 hypodensity in inferior pole of the left kidney too small to characterize. 11- the bladder is incompletely distended (is this why I have problems using the restroom?. 12- there is a 3.6cm cyst on the right ovary. 13- uterus is diffusely heterogeneous in its enhancement pattern with a 3.6cm x 1.5cm AP fluid collection within the endometrial cavity. O.K. that was the last one. In response to a question from my last comment, I had the FNA first that came up monoclonal consistant with lymphoma and then had 2 lymph nodes from my neck removed that came back as castlemans.Also, for the last month my Platelet count, EOS%, LYM#, NEU#, LYMPHS/100 WBC, and EOS/100 WBC have been high as well as my WBC count been high. My WBC and LYM have been that way for months. My RBC CNT, HGB, HCT, Anion Gap, CREAT, MPV, and INR have been low. My CREAT, anion Gap , MPV and INR have been that way for months now though. Any ideas? I would appreciate any help that anyone can possibly give me understanding all of this.

Tony,

RESPONSE FROM DR NIKHIL MUNSHI

Theoreticaly true resected UCD would be cured and woudl be unlikely to recur.
Especially if all his tests are negative including PET-CT and other biochemical
tests then I would not consider recurrent UCD as a factor. To my knowledge links
between UCD and ALS is not described.

Tony,

RESPONSE FROM DR ANGELA DISPENzIERI:

Jennifer,

As you are aware, I am not a clinician but merely a patient advocate. I am willing to discuss any research I have found but will provide you with a contact number to discuss medical issues with Dr VanRhee. He may be reached at the University for medical Sciences (UAMS), Little Rock AR (501) 296-1502. If you wish to speak to me directly, please send me an email to hmconsult@msn.com with a call back number and I will respond.

Regards,

Jim Johnston
ICDO Executive Director
Santa Fe, NM   USA

No doctor has explained any thing to me, so I will just tell you what the reports say. Just FYI some of the reports were restricted. The Fine Needle Aspiration report said- The specimen consists predominantly of small, mature lymphocytes with scatterred neutrophils and occasional eosinophils. Scatterred atypical larger cells are also identified. A monoclonal process can not be excluded. The differential includes low grade lymphoma as well as benign inflammatory and infectious process. The “tissue” report said-I was negative for: CD 3/5/7/10/56+/57/ and 13. I was positive for: CD19/20/38/and 45. I was also positive for HLA-DR. It also says my Kappa to lambda ratio is 25:32. The gated population of B cells expressing CD20, CD38, HLA-DR, and dim CD19 account for 56% of cells. My plasma had low INR. Here is what the 1st pathology report said: The histological features are that of prominent follicular hyperplasia with extensive mantle cell hyperplasia. The immunoperoxidase staining pattern with CD20, CD68, EMA, OCT1, BOB2, CD3, CD57, CD43, CD5, BCL-1, kappa and lambda are most consistant with a reactive pattern. It also said a Hodgkins lymphoma ccan not be ruled out. Amendment comment-enlarged lymph nodes have preserved architecture with hyperplasia of lymphoid follicles, most of which are small and atretic (regressively transformed). Often there is more than 1 germinal center within a single follicle. Some show deposition of hyaline material within them. Many of the follicles show extensive mantle zone hyperplasia with a wide zone of concentric rings of mantle cell lymphocites in an onionskin pattern. Many of the vessels are hyalinized and radially penetrate the germinal centers. Immunohistochemical studies show B cells in the lymphoid follicles immunoreactive with CD20. T cells in the paracortical areas are positive for CD3/43/5. The germinal centers are positive for CD10, but negative for BCL-2. BCL-1 is essentially negative. CD23 marks the follicular dendritic meshworks. Well that is all I have and I do not know what ANY of it means. As I said before no doctor has been able to explain any of it to me. If you or any one else can help me understand what any of the above means, I would really appreciate it. Also, do you know of any specialists in the Walter Reed DC/VA/MD area?

Hi Jim,
My name is Jennifer Kifferly and I had some contact with you and Dr. VanRhee about three years ago.I live in Fort Stewart Georgia and have been having a very hard time finding a doctor who has any knowledge of Castlemans Disease, I have multicentric CD and have had for 13 with the last four being under constant meds. Anyway when I spoke to you all three years ago you were willing to speak with physicians regarding treatment options and I am wondering if you are still willing to do that. If you are I would appreciate any information on how my oncologist can contact the physicians their I appreciate your help and like what you have done to the website. Thank You

Jennifer Kifferly

I was diagnosed with a Unicentric CD retroperitneal mass 2003 which was partly removed due to being interwined with the scaral nerve. I then had radiation which was effective and have had 6 months bloods and CT which have been clear.
June this year I devloped an intermittent slur which is now present at all times just at differnet difficulties. My lips do not always stay together and blowing my nose is diffcult. I am also having trouble with swollowing and often choke, difficulty with excersie including lifting of heavy objects as it causes breathless, occasional muscle cramps. So far all tests have come back negative including CT Scan. I am now being sent for further bloods and an MRI of the brain and brain stem. The symptoms are fitting ALS although the Dr has not meantioned this or any other disorder.
As the is suggestion that ALS has auotimune links do you know of any links with UCD and ALS?

In july I had many palpable lymph nodes that were growing all over my head and neck. An FNA came back consistant with lymphoma. Two lymph nodes were randomly selected and removed that came back as Castlman’s disease. I was then refered to the hematology/oncology department who told me I did not need to be seen there because it was removed and that is that removal is the treatment. How can you know that the two that were randomly selected are the only ones that has the disease? Now I have atleast 3 times as many and a new one where the last two were removed. I even have a cluster of lymph nodes that weren’t there before.The doctor told me that whenever one of them becomes more than 1.5 cm then they will take them out because a lymph node is not pathalogically significant until they reach that size. That doesn’t seem right to me because that means that I might have to have 30 surgeries all over my neck and head. Can you please help me understand and tell me if that doctor was right?

Hi Jim my husband have Castleman tumor now two years that we know about. The first year we couldn’t do much about it because he was dealing with prostate cancer, that is over with now but i can’t seem to get him to start dealing with this. I believe his fearful. The location of the tumors are one is behind the left atrium of the heart and the other is next to his esophagus Actually it dents the esophagus a little to the side. If nothing is done about it what are we look in at. Can you give me some feed back that i can take to him that will get him out of this denial funk that he’s in. I know your not a dr but you have had to deal with this.

Hi, All

Thank you so much for doing this.

My husband was diagnosed with CD following an appendectomy in April ‘07. The er surgeon reffered us to a surgical oncologist at Northwestern Memorial Hospital, for diagnosis of a large (6-7cm tumor above the appenidx) and remowal due to the tumor growing extremely close to his right kidney. (originally it was noticed when he went to er with abdominal pain (busrted appendix)and the staff run the CT)
Biopsy and other tests did not show any indicators for cancer, but the surgeon pressed for removal of the tumor due to size and proximity to major organs. Once the pathology of the extracted tumor was performed he was diagnosed with Castleman’s .
As far as I can tell my husband never had any symptoms of the dieseae, and if not for the appendix he probably would still be unaware of the issue. He had a reg checkup just few weeks before the appendix bursted and all the blood work came back ok. One thing that has been bothering him is a spontaneous hair loss. That started about 2 yrs ago and he has seen various dermatologists and was told that its stress at first, not to worry and that the hair will grow back, they did not. We saw another dermatologist, and that one told him it can be some form of immune system disease, and gave him topical steroid to apply. That was still before the surgery.
He is 23 years old the CD type he was diagnosed with is the hv type- he is seing is dr again in feb for a ct and folloup.
I wanted to ask few questions:
is there a possible connection betwen the CD and his hair loss, and can they really be related? is it the Autoimmune system is out of wack? Anyone expiereinced patches of baldness? Being a young guy he is v. sensitive about it. Where do we look for help-dermatology, or other specialist-any recomendations are welcomed.
Secondly, just the other day a bump size of a plum appeared by his neck, but has now disappeared. Is this related to CD, do lymphnodes happen to inflame and then go back to normal? How concerned should we be with that? Is it a sign that the disease is spreading/shiftng from abdomen? Or does that happen occasionally. Could it be something other than a lymph?
Finally with all these questions, do you know any CD specialist in the Chicago area? Our Dr. is great, but we want to make sure we can get the best possible answer for all these wierd symptoms, and I am under the immpression that our hospital does not see a lot of CD cases.
PS. I am noticing that my husband is somewaht lethargic, and tiered is this pretty normal or cause for concern? His tummor was removed in late June, and last CT was done in August.Next CT is set for Feb.

Thank you all so much for all the help. Is really been hard to see him going through all of this as a newlywed.

Sasha,

Send me a private email with a number and time for Dr vanRhee to contact you. I will pass it on.

Regards,

Jim Johnston
ICDO Executive Director

Sasha,

Our medical team has and is more than willing to correspond electronically for the treatment of our patients. Please advise who you need and I will put them in contact with you.

Regards,

Jim Johnston
ICDO Executive Director

ANNE -  REPLY FROM DR. DISPENZIERI (MAYO):

Anne,

You are asking medical questions that I as a lay person cannot answer. I will forward the Q to our medical staff and hopefully have a response from a couple of physicians with 24-48 hrs.

Best regards,

Jim Johnston
ICDO Executive Director

Dear Jim
It has been a while and I thank you again for this life line.My husband was dx 2 years ago with plasmacyctic MDC. He has had chemo. cortico steroids and most recently ritaxumad (spelling?)and taken of steroids which were harming him too much for little return. At this point (3 mths later)the MabThera has not decreased the albumin, ESR or CPR measures at all- slight increase in fact. My question is, how damaging are these elevated inflammation rates and how long can they remain like this? How much pressure should I exert to have something else used? (ESR 121, CPR 99, albumin 29) Dr Van Rhee has looked at my husband’s charts and recommended other treatments and scans. Our doctor wished to leave this in reserve and tried MabThera. What do you think?
Thank you so much. ad everyone says, we are an isolated, desperate- at times- group and you help us so much.
Sincerely
Anne Hotta

i need help please get back email reverema123@hotmail.com

KRISTI – REPLY FROM DR VANRHEE

To be safe I would repeat CT of the neck.  It may show no change. I think you sense the muscle at the upper end of your esophagus (gullet), which closes it. Your symptoms will probably subside. It may be a viral episode

I was diagnosed with plasma cell castleman’s incidentally found during a thyroidectomy in March 2007. I saw Dr. Van Rhee in May and return to him in November. He found 3 nodes that were =/< 1 cm in my neck and one in my groin. I am to have these recheck in November. Recently I have had chest congestion for a month. 2 antibiotics,inhaler and inhaled steriods. These have not helped. Now I have the feeling of something in my throat, pressure and thickness. I saw two local Dr.’s one says my lymphs were NOT swollen and two days later my endocinologist says that they were. Now I have a constant feeling of a fist pushing against my throat and I have been choking at night, when laying down and occassionally on food and drinks. I have pain in my neck and to look in the mirror my neck looks thick and slightly swollen. My Dr’s (know little to nothing about Castleman’s) are stumped but won’t order a CT to check. Could this be related to Castleman’s?

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

has any one ever dies from Castleman disease?

Is there any relationship between CD and FDC Sarcoma. Can one turn into the other and/or are histological features similar. Would there be similar constitutional symptoms with either. Can CD occur in multiple sites (lung and retroperitoneum ) and not have high IL6 levels/ high sed rates or sweats.

JL,

Those are definite symptoms of Castlemans but you must be checked by a physician that is familiar with this disorder. Have you been Dx with this disease yet? If you need a referral to a specialist, please let me know what location you are writing from and I can direct you to the closest clinic that specializes in Castlemans.

Being a rare disease, it is prudent to seek a medical opinion ad attention from a physician that sees and is familiar with disease. I currently have a medical staff that consults CD patients in Seattle, Little Rock,?Cleveland, Rochester, MN., Boston, and Tampa. Please advise if further clarification or assistance is required.

Regards,

Jim Johnston
CD Executive Director

Jim – I am curious if there has been any data linking Castleman’s Disease to the mutation gene PMS2?
Thanks
Debbie

Dear Jim and Dr. Tricot,

Thank you for your prompt responses. I have experienced abdominal pain for the past six months. A gynecological exam, ultrasound and vaginal ultrasound were both unremarkable. I met with my ONC/HEM yesterday and he felt this merited a CT scan of my abdomen, which will occur today. I will let you know what those results are. I should hear from my ONC/HEM by Monday with those results. Again, thank you.

Gwen,

I have sent your email to our medical staff for a medical opinion. Depending on how long you have had the pain it may or may not be related to CD. I will post the medical opinion when received.

Regards,

Jim Johnston
Executive Director

I was dx’d w/HV Castleman’s in 2002, when I had an inguinal mass removed. I was wondering if CD tumors can cause lower abdominal pain which radiates to my back…kind of like continual menstrual cramping, but not related to my cycles at all.) I will be seeing my oncologist/hematologist next week and thought I’d check with you folks first. Thanks, G

Lori,

Please send me your daughters name and husbands name as well as their email address. Send?it to my hmconsult@msn.com account and I will follow up with Dr vanRhee.

Regards,

Jim Johnston
ICDO Executive Director

Tanya,

I am not a medical physician and these questions need to be directed to the physician treating your disorder. Like I stated in previous emails, if you are not satisfied, have asked all the questions and not satisfied with the answers – “Seek a second opinion”.

Regards,

Jim Johnston
ICDO Executive Director

Tanya,

Call the clinic at (501) 296-1502 ext 1428 and schedule an appointment with Dr vanRhee.

Regards,

Jim Johnston
ICDO Executive Director

if you want email me maybe we could chat i have same symptoms now im off to lymphoma team.

Bob,

As far as I know, Dr Frits vanRhee is taking new patients. All CD “centers of excellence” are accepting new patients. It depends on the availability of the physician at each facility as to how fast you will be seen. Some physicians (performing research) are traveling quite frequently therefore are harder to see. Please contact the clinic in Little Rock and ask for vanRhee’s availability.

Regards,

Jim Johnston
ICDO Executive Director

There are two physicians in your area with experience in treating?Castlemans Disease. We refer patients to the following (not in any order).?

Nikhil C. Munshi, MD
Associate Professor of Medicine
Dana-Farber Cancer Institute
44 Binney Street
Dana B106
Boston, MA 02115
Office phone: (617) 632-5607
Appointment phone: (617) 632-4166
Fax: (617) 582-7904
E-mail: nikhil_munshi@dfci.harvard.edu

Angela Dispenzeiri, M.D.
Professor of Medicine
Division of Hematology
Mayo Clinic
200 First St SW?
Rochester,? MN?? 55905
(507)284-2479
Fax (507)284-2479
E-mail: dispenzieri.angela@mayo.edu

Regards,

Jim Johnston
ICDO Executive Director

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.

Chicago area

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 Executive Director

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?

Thank you Leslie. I was quite over-whelmed by the double diagnosis.

Regards,

Jim Johnston
CD Executive Director

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

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

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

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

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.

Jim Johnston
CD Executive Director

?

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

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

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:

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.

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.

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

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

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

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

Thank you for your help!
Will get in touch with him.

Regards,
Sasha

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

Either of the German speaking countries (Germany, Switzerland or Austria) or the UK would be great. Thanks!
Sasha

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 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

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

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

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.

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

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

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?

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

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

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

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.

Dear Dr. Van Rhee,
Do you think your center can help me? I desperately need and expert to review my case, especially having such a comlpicated past medical history. I just had another CT series of the chest, abdomen, and pelvis. My doctor is mailing me the report, which now reveals involvwement of groin lymph nodes. If possible, I will forward the report along with recent blood work results and all PET/CT scan reports since 2001 to your office. Would you be interested in reviewing my case?
Also my legs are becoming affected (I believe) by my condition. Can this be possible? Initially in 1994 & 96 I had three very large nodules removed from the back of my left knee. They were dismissed as fatty lypomas, but I think this was a trigger point for the illness’ beginning.
In past scans of my legs it showed small tumors in L upper thigh and tiny nodes around both ankles. Furthermore, radiotracer concentrated under the ankle of my RT. foot and some toes. Lately, I have been experiencing shooting leg pains and have difficulty walking bare foot. I have not recieved any follow up care regarding my legs or feet because the last few PET scans only went from eyes to thighs,( not nose to toes.) Should I seek care from a podiatrist as a separate problem or can CD infect one’s leg lymph?
My last bloodwork results on 11/28/07 showed the WBC = 8.2, the RBC = 4.00, PLATELET = 389, MONOCYTE = .07, ESR = 34 and ANTI NUCLEAR AB Tit = 80. Does CD leave the lymphatic system and effect your blood after a time? . I’m scheduled for repeat blood work in three weeks. Perhaps there is a very specific blood test that my doctor can order? What are some of the symptoms that identify a malignacy?

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

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 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

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.

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

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?

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

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

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 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

I am 39 and recently diagnosed with plasmacytic/multicentric Castleman’s. When I was 15, I had a benign parotid tumor removed (5×3x2cm). 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

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

I was wondering if somebody might have side affects or a negative outcome of having lymphnodes removed?

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

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

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

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 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.

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?

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.

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.