Castleman’s Blog

hi I am Percy 42 years old at west palm beach fl I recently diagnostic with Castle man’s disease
all stared with back pain and they found mass tumor located next
to my lung they decided to do a biopsy they did two without an answer after that they tried to removed the tumor with a surgery in order to know what kind of tumor it is and analyzed they operate and they cant removed because it was a vascular tumor and i was bleeding too much they told me that they don’t know what i have and whats going on with me after that they did an immobilization’s of the tumor they reduce it part of it but the doctor told me that i was the best procedure and after we are going to monitor the tumor because if it is growing part of the lung can be removed before this all happen i had an oral infection with bumps in my palate but the doctors said that it is not related and i not sure because now i getting it back I am scare i don’t know where to go because my surgery doctor said that i could live with it only we have to checked if is not getting bigger but i strongly believe that it is not the correct answer i need a doctor who really tel me that i have this an what could i do if i live in west palm beach Florida please giv memeirecin because i dont know what couldi do
thnks percy

My daughter at the age of 9 mo. old had experienced edema on both sides of her neck. The ER Dr. suggested that I take her to specialist. It was suggested from the oncologist for her to be brought to the “Children mercy hosp.”, (in KC, MO.) Missouri is the state that we live in. The Dr. Dx her with infected lymph nodes and the Tx plan was IV antibiotics. She stayed for 2 wks.
Nothing else occurred until she was about 9 yrs later. I took her to the ER room. She complained of her left side hurting. ER Dr. Tx was to consume H2O and so she could eliminate her bowels. At the age of 14 we went through the same thing.
Then at the age 17 she starting experiencing a lot of sleeping and having no energy. Also she had edema on the right side of her neck.
I am thinking to myself, (OMG here we go again). Our PCP kept prescribing her antibiotics. After the 3rd dose I asked the Dr. to order a ct. scan. I needed and wanted clarification. I felt we had been getting the run around for yrs. The Dr. order ct scan. It showed she had several lymph nodes that looked abnormal. So the ENT preformed the biopsies. Dr removed 3 lymph nodes that was told to me was the sizes of 2 golf balls. I was told that there was other lymph nodes that were enlarged but not enough to removed. We played the waiting just like everyone else. They said that they would send the biopsies off and we should hear something in about 7 days. Well, they ended up having to sending it to the University of Missouri. No diagnoses at this time. Not having success finding Dx they sent the biopsies to the Mayo clinic in Mn. Finally received a Dx of CD. Of course I had never heard of it. I did as much research as I could. My daughters Dr. explained that the treatment plan for unicentric CD was surgery. Which we already completed. They advised ct scans every 6 mo. and visits to the oncologists.
I forgot to mention that my daughter had Dx with a learning disability, with short term/long term memory lost. This affected from the 4th grade to present time. So I have to be her voice and advocate. She’s now 20 yrs old.
In the last 6 mo. she has experiencing fatigue, night sweats, pains in her lower abdomen, pains in left side of her stomach, pain in her chest. The testing that has been done in the last 6 mo. is 3 ct scans of her lower right side, left side of her stomach. A PET scan from her neck to the pelvis area. Also lab wk. has been done. The results of the PET scan was told to us that they concerned the CD may be in the area of her appendix and right ovaries. Her GYN Dx her with having a sm. cyst on her right ovaries. So they want to do a biopsies. The Dr. also told us that there was a rather large area in her upper stomach area and her chest area is a large black spot. Ct. scan and possible biopsies of that area of the chest.
Now since I’ve explained her case to you, my question is.
With what they found from the PET scan results could the big black spot be a cluster of lymph nodes with CD?
TY

Kerry, 

I will forward your email to our physicians. I hope to have a response posted within a few days.

Regards,
Jim Johnston,
Executive Director

All interviews are available at http://megauploadfiles.com/

Does anyone know if there are CD doctors at the Mayo Clinic in MN? I had my last mass removed there and was very pleased but don’t seem to here any mention of Mayo Clinic for CD.

US Department of Defense
Armed Forces Institute of Pathology

Tissue sample

Live in Killeen Texas

Jim,

Just out of curiosity, in your database, how many of the CD patients have the plasma cell variant?

I really like the new home page:)

Jim, I was wondering if there has been a new count on the number of CD patients? I was told I was the 16th person when I went to ACRC and was diagnoised in 1992. I went through the anti IL6 treatment 3 times under Dr. Munshi’s care and Thank God I’m still here. Just wanted to know if there was a new listing with the number of CD patients. Thanks! Tom Holmes Oxford, Ga.

listen to your heart, sounds like me and you on same boat but dont think dr at dfinst. are anybetter . i wasited 3 years firs thinking rare diseas death then same med pul to nodual 2.0cmx0.8 cm and this still in march wasnt big enough email me and maybe we can talk ill help reverema123@hotmail.com. talk to you i hope ive been where you are and now left in the dust by one of the recommended drs on here not saying anyones fault .

PARBATIE,

My first question is have you ever been given a clear-cut diagnosis? Although I am not a physician but patient myself, it seems as if you have may things going on; each needing different Tx plans. I am going to refer your email to one of our Specialists and see what they think. Are you up to traveling? And, where are you located?

Regards,

Jim Johnston,
CD Executive Director

TANYA,

Like I stated earlier, I would need a letter from you designating me?permission to?discuss your?specific medical information with the hospital and / or?physician. I will make a call and see where the biopsy results are. They do take time to process but your primary should stay on top of this. Especially if you are symptomatic.

You have an option of having your slides and blood results sent to another specialist for review – sort of like a second opinion. This sometimes works in having the original physician expedite your readings. I know the feeling because I have been there many times. The waiting game seems like an eternity.

Regards,

Jim Johnston,
CD Executive Director

i too have a simler symptom actually the same its been about 2yrs and all they do cuz i do have have in my bones deep and burning cramps in moring i always wake up and struggle to move all my limbs and still nect my glucons is 85 and total palete cout is 343,000 and that getting up there i found out most of this on nov 05 biopsy still deff very rare bad disease i have b and t cell phentotype but there in mutation so i know and i see dr munshi hes not so good i only say this cuz he nerver there and he doesnt stay in good contact .. i just had another biop and he still in3 called me i have to ask my pain speclist at bwh.. well answer back up to you and any ever had bad experience with this dr munshi nickel please i beg let me know thanks tanya.

Thank you for your quick reply!

I am born 1950.

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

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

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

My immunoglobulin?s are:

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

With best regards
Soren

Soren,

I have forwarded your email to Dr Dispenzeiri for review. She is both a CD and POEMS Specialist and will be able to clearly provide a medical interpretation for you.

Regards,

JIM

I have forwarded oto our medical staff. Am awaiting a response.

Regards,

Jim

Jim,
I was informed the remaining masses had beome smaller, not a reduction in number.
Thanks, Cyglenda

I will forward your email to our medical staff but they will need additional information. Did you have any treatment? Are you stating that the remaining masses were reduced or just appeared to be smaller? This is not clear in your message. Please advise further and I can forward for a medical?opinion or refer you directly to the physician.

Regards,

Jim Johnston
CD Executive Director

Reply from: Frits vanRhee
?????????????????? Professor of Medicine
?????????????????? University of Arkansas for Medical Sciences
?????????????????? Little Rock AR
?????????????????? (501) 296-1503 ext 1547

Thank-God someone is listening in the universe beside the lord!
I am in Connecticut, so Boston is not so difficult for me to travel to, however, it is hard to manage a medical relationship with a MD so out of reach in case of emergency. I will try to follow up with Dr. Munshi if I do not recieve any satisfaction at my next visit to NYU on the 28th.
I am also hopeful to hear some feedback from your staff! Most members of the medical community say “Castle-what? Never heard of it.” This only compounds my frustrations and faith in the medical community.
Symptoms: Mild lyphodemea of the upper right arm w/tremendous nerve pain shooting into my arms, & hands, which numbs my fingers. Nodes are pressing on my brachialplexus.
I have pain in my lower Rt. abdomen and experience discofort & naseau each morning. My chest hurts at times in the center, like tight pinching close to my heart. Occasionally, I’ll feel something “clip” under my Rt. rib cage.
I am continuously diagnoised with a urinary tract infection which nevers seems to resolve itself, even on meds! Also my lower Rt. backside hurts most of the time. If I don’t take my pain meds. and energy pill, I can’t function. Brushing the back of my hair is often a real chore! I try to remain active and am very happy to be alive to complain, but fear that another biopsy would only yield the same results and would furthur spread CD at a faster rate. My Rt.hip area is full of fluid causing my lower body to look lopsided.
I wake up with night sweats, but not everynight. The disease seems to wax and wane. Recently, the radiologists have discovered a tumors between my Rt. ankle and foot. There is also positive PET uptake before my fourth toe and the planter section of my foot. Now, my leg seems to turn in when I walk. I cannot walk barefoot well without limping. In the past, before the CD diagnosis I had three tumors removed from behind my left knee. Now the scan shows a weird hot spot in the center of my left thigh. Could this be from the lyphangiagram dye preformed in the 70’s?
Somedays, however, are just plain “bad days.” My body shuts down and I need to rest for about 72 hours. I hate feeling like an invalid, so those days are short lived.
Occasionally, I’ll have severe itching spells, especially when a new node is swelling, or an old one becomes inflammed. If I comsume any alcohol,(even a minute amount), my chest feels heavy like I can’t breathe properly, so of course, I don’t indulge.
There was some weight loss in the beginning, (approx.20 lbs) but I try to keep and maintain a decent “fight” weight. To look at me, one would never suspect any physical ailment. I’m attractive and “appear” to be in good health.
I am most concered about this lymphnode in my Rt.groin/stomach area. and at times can feel it. I cushion myself with a pillow when I sit or sleep.
My FSH level proved that I went through menapause in my mid 30’s. My last period was March 2000.
I also recieved lowdose radiation at YALE 2002.

I am 44 years young and was diagnosed with Castleman’s or Giant Lymphnoid Hyperplasia in 2002 by Yale pathologists. I had Hodgekin’s Disease in 1978 at the age of 16; it returned in 1981. Now I have been suffering from long term side effects perhaps from all the nuclear medicine that safed my life years ago. Today, my condition has spread over the last six years from the right axilary to all the nodes in my chest, the left side, my lower stomach, both groin areas and even my legs have enlarged nodes behind each knee, in my thighs and some small ones on my shins and ankles. The lymph nodes keep growing and spreading and this has created major distress for me, both mentally as well as physically. Is there anybody out there with a similar case????? All the MD’s say they have never heard of Hodgkin’s turning into Castleman’s, although it has been documented to go from Castleman’s to a lymphoma. Please, I have been threw it all and my pet scans confirm that my condition is becoming worse every six months. What can I do to find a place that deals with this challenging illness? Is there someone who can delineate how the disease eventually kills you? I’ld like to be better prepared for the inevitable, most information only states that the prognosis is poor and you have 26 months after its onset… When is the onset? When do I count my months? I don’t qualify for chemotherapy because I’ve had it twice in the past. Also I have periacardal effusion or fluid around my heart and am told that another couse of treatment would literally blow my heart out! Is this true. I hope someone responds to this message with the facts or at least some “real” advice beside another biopsy or playing the “watch and wait” game.
P.S. Would you consider Rituxin as a good alternative treatment? Does it have a history of success? That is the current game plan suggested for me at NYU Cancer Institute. I’m thinking of taking a pass card because without true know-how about my illness, the doctors only seem to be complicating my condition everytime they preform an invasive measure! Biopsies cause new nodes to enlarge and eventually grow big enough to replace the one removed and the needle biopsies cause my nodes to become furthur infected. What to do??? Please advice.

I had surgery in Feb 2005 and had 5 masses removed. At that time, I also had numerous small masses that due to size and number, it was decided not the try to remove them. I contine to have Ct scans, every 6 months, and we recently informed the masses were smaller. Is this common? Other than the Ct scans, are there any labs I should have performed routinely?

I would also like to say that I’m very happy and grateful to see this dialogue back.
I haven’t posted much, but I’m a faithful reader.
Thanks for all the hard work, Jim.

Tania / Dr Parker,

Sorry for the inconvenience. Please try the ACRC clinic directly at (800)MYELOMA or (877)635-7240.
Regards,
JIM

Thank you, Robyn.

JIM

Jim,
Thanks VERY much for your swift & helpful response. Thanks, too, for your referral to Dr. Barlogie. What’s the best way for us to contact him.
Thanks again,
Stephen Parker

Dr Parker,

I need to caveat my email with the fact that I am not an MD but have been studying the effects and treatment of CD since I was Dx with a mediastinal mass as well in 1980. At that time, there was very little known about the disease other than what was posted in medical journals and treatment studies.

I contacted the University of Arkansas for Medical Sciences after researching the disease and finding out that they were one of the few facilities that had an active CD program. My tumor was removed and I have been in remission ever since.

Form al the literature I have read, the benign mediastinal hyaline vascular variant of CD is treatable if it is small enough to get in order to surgically remove the tumor. If not, the patient runs the risk of the tumor growing and attaching itself to other major organs. Treatment at this point (ACRC protocol) is to reduce the size of the mass so it is resectable.

I suggest you consult with Dr Bart Barlogie and get his medical opinion on whether the tumor is resectable or not. I too have a compromised left diaphragm due to the tumor attaching itself to the phrenic nerve. Although I too had scaring, the risk of leaving the tumor in v. surgical resection was dealt with immediately.

I too was offered radiation Tx but declined under the advice of my physician in Arkansas. I did not want to compromise any major organ or tissue with another form of disease which could potentially be malignant.

If you would like to contact Dr Barlogie, please advise. In the meantime, I am sending your email to him for a consult.

Let me know if I may be of further assistance.

Regards,

Jim Johnston
Executive Director
International Castlemans Disease Organization
Santa Fe, NM

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

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

Thank you in advance.

Stephen Parker, Ph.D.

has anyone ever seen castleman in an toddler and how does it present?? what are the symptoms and can a multicentric mom give the disease to her baby??