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.
2/15/2007 10:42 PM
tanya wrote:
i am a first time castlemans d patient, i had one lymph size of a cherry took drs a year to find it and after told i had this disease. now dr i am seeing does nothing i have multiple lymphs in groin, arm pit neck chest , now leading to elbows , my dr still till i ask set up a full pet scan .. i just want to know if there are any other people in boston mass, with same disease like me. im scared i have all the symptons of plasma cell varient. maybe even hodgkins please answer me. Reply to this
Have you seen Dr Munshi at the Dana Faber Cancer Clinic? He is one of our advisor's for CD and has been treating the disease for many years. If you need answers, let me know and I can provide you with a contact number. Dr Munshi has been treating this disease in the Boston area for over 5 yrs now.
6/6/2007 11:02 PMtanya p wrote:
thats the thing i saw dr munshi and from nov 06 to jan 07 after second biop he sending me to diff area cancer lymphoma malignacy dr at dana farber . how come dr m doesnt see me for my lymphoma now , he does treat lymphoma. my last biop has words like pigmant ladin, langerhan cells . mature b positive tcells ect and the he sends me to cancer team i ask why the suddent change twice and only answer is hes sounds sure its lymphoma but he said a lymphoma team has to diag. it is that true. Reply to this
I cannot speak for Dr Munshi. I suggest you schedule a telephone conference with him and ask him these questions. If you are still not satisfied - get a second opinion. We have other CD physicians in the network.
2/18/2007 11:22 PM
Tom Holmes wrote:
My name is Tom H. I was diagnosed in 1992 with castlemans disease. Dr. Munshi was my doctor. I was having trouble with swollen lymph nodes in my chest area, along with the IL6 level in my blood being extremely high levels. They asked me if I would be willing to try a experimental drug called anti IL6. My wife and I talked and prayed about being the first C.D. patient to ever take this drug. It was given to me three different times starting 3-98 everyday for 28 days each time. The second time was in 9-98 and a third time 12-98. I had a bad reaction the third time, but I can proudly say that today in 2007 I'm doing as well as can be expected. I'm not in full remission but I have not had that high of a IL6 reading in 9 years now! I thank all the doctors and staff at ACRC they saved my life and give the best cars anywhere for castlemans disease.I was diagnosed in 1992 with high line vascular CD and I'm still here today because of God and the doctors and staff at ACRC. Tom H. Reply to this
I found your name on the Castleman’s Disease Homepage.
My son is a Marine and just diagnosed with Castleman’s. He has had 3 surgeries since October. First for a biopsy, second to control a staph infection and third for another biopsy. His samples have made it to the Mayo Clinic, Johns Hopkins, the Cleveland Clinic and every place in-between.
My question for you is as follows: He has one more swollen lymph node in the top part of his neck. The surgeon here in town (Columbus Ohio) indicates wanting to shrink the swelling with prednisone. A longer period of time than before (we already did this, the swelling went almost all the way down, then returned after the treatment was over). After that, if not successful, they want to try a low dose radiation.
My son and his command want one last surgery to remove this so he can go on and get out of this limbo state he has been in since October. The surgeon here fears the facial nerves may be affected.
Any thoughts from you?
Thanks in advance for taking the time to talk with me.
I need to caveat this dialogue with the fact that I am not a clinician but a patient myself and Patient Advocate for the International Castlemans Disease Organization. My journey started much the same as your sons except I had a mediastinal mass attached to the phrenic nerve. After a needle biopsy (which later I was told is useless concerning a mass), a tissue biopsy was sent off for review. I was later Dx with the hyaline vascular variant of Castlemans restricted to the chest. Drs wanted to just watch the clinical course of the disease and I wasn't happy with this option. I did some investigating and found Dr. Barlogie at the University of Arkansas for Medical Sciences (UAMS) and he recommended aggressive treatment. I relayed this to my local Oncologist and he advised me that I was to undergo radiation therapy to shrink this "benign tumor". After conferring with Dr Barlogie, he recommended that I get to Little Rock STAT for a clinic visit. within 48 hrs after my visit, I was in surgery to have this mass removed.
Since this surgery, I have found that for a benign mass, surgical resection is the treatment plan of choice (if the mass is small enough). If not, they may shrink with drug therapy but according to physicians at UAMS, radiation is risky due to running the risk of forming other tumors as a result of radiation. Also, in my case, due to the fact the mass was near the heart, that compounded the risk.
I have been in remission and tumor free for almost 20 years. And faithfully have blood work drawn and a CT v. MRI annually. A Dx of Castlemans Disease is not a critical Dx if it is caught and treated correctly by an experienced Castlemans specialist [in time]. In your area, we have an affiliate who is familiar and treats Castlemans Patients at the Cleveland Clinic. I recommend you start with a telephone consult with Dr Brad Pohlman. His office address and telephone number is as follows: Brad Pohlman, MD, 9500 Euclid Ave, Desk R 35, Cleveland, OH 44195, (800) 223-2273.
Please let me know if this is beneficial and if you were ably to get into see Dr. Pohlman. I will copy him on this correspondence so he is aware of your pending call. If I may be of further assistance, please advise.
4/4/2007 12:14 AM
tanya pell wrote:
well i think oppiste of dr munshi ,, i saw him maybe since novem 3 and i just hat another biop its been three months no call and still waiting on groin ingular i think and at first my neck was to be done but my surg and thoratic dr rapheal bourn couldnt feel then pless i cheack after surg on my ct and mri tons how up in cm size 2.0 is beggist so far now sit back to they get bigger and treat pain sever . so im so so keen i need a dr to cofined in and who takes me seriouly . like he should no appt then words then by no much so i dont see how he knows it all and he is the one that said oh they shrink and get bigger with cmd so if anything i do need more info and i do have i palet total count 343,000 and high glcouse 86 also b and t phentotype germ mutation first biop thanks tanya Reply to this
In order to discuss anything with Nikhil Munshi, I need your permission to do so. Please send me an email as specified in previous blogs to HMCONSULT@msn.com and I will make the call to Nikhil. Please keep in mind, these are competent physicians and also travel a lot but I will make the call and if he is available and if not, leave a message with his Secretary.
4/6/2007 7:13 PM
tanya wrote:
hi jim actually i just got my call back from dr munshi today last night the other dr told me same as last biopsy phentotype b and t cell seen germ also then today afternoon scert of munshi called there sending me to a diff dapartment now i have lymphoma .. so thanks Reply to this
3/9/2007 9:01 PM
Tammy wrote:
I am going to Dr. Vanrhee in April, I have ongoing symptoms since 2003 with elevated esr, crp and il6. What level was your il6 and do you have any side effects from the anti il6 and is that the same as il6 ab therapy? Sincerely,
I have been in remission for over ten+ years and would have to pull my medical records from archives. The normal range for IL6 (based on St Vincents Radiology, Santa Fe NM) is "IL6 level" 0 3.1 pico gm / mill -normal. As to the side effects of IL6, I will consult one medical staff and get back to you.
3/14/2007 1:14 PMDeborah wrote:
I was diagnosed with Castleman's Disease last year in March after I prematurely went in to labor and delivered my first born daughter. I was having some breathing problems the night after I had given birth and the nurse called the Dr. and they had me go down for a CT Scan and there was a mass on my left lung. At that time no one knew what the mass was until i went to see the pulmonary specialist and he told me it was Castleman's disease. I'm still quite confused as to exactly what the disease is but so far the mass has not returned, but I'm following up with a cancer Dr. for Castleman's disease. Reply to this
I have a few concerns with respect to the way the diagnosis (Dx) was performed. First of all, was there any surgical procedure to define the Castlemans cell structure or was there just an office visit and or blood work? Without knowing the results of a biopsy from Pathology, it is quite hard to define a CD Dx let alone pin point the variant of the disease and determine a proper treatment plan. Was there any biopsy performed? If so, do you have the result? Finally, are you willing to seek a second opinion from a Specialist that is familiar with both treating the disease and determining the variant based on symptoms and tests? What part of the country are you located? I can set up a telephone consult with a Specialist that would enlighten you on the various Tx options available and may request to see you to determine the growth rate. If this is something you would like to pursue, please advise and I all put you in contact with a premier Specialist close-by.
4/16/2007 7:17 AM
Kristi wrote:
I have recently had a thyroidectomy, during surgery a lymph node was removed containing plasma cell variant castleman's disease. I have a 29yr history of hashimoto's. I do not know much about this disease. I am not sure yet if it is unicentric or multicentric. I don't know what kind of Doctor to go to or what test need to be ran. I was hoping you could help me with information. My Doctor's seem to think it is local but are planning more lymph node biopsies. Reply to this
I am going to need more information for our medical staff to go on. What (if any) symptoms were you experiencing prior to surgery? How was the mass detected? Did you have any treatment and if so, what kind, where and how long? Who is the treating physician and what facility are you seen at? Do you have access to blood work, labs, and radiology? Physicians looking at a second opinion will need to see thee.
There are routine labs that may be performed (based on UAMS protocols). I would be more than glad to wither pass this information to you or pt your physician in contact with our medical staff for any inquiries or long-distance treatment (as they decide).
I recommend you send confidential and medical information under a separate cover to my private email address. this way your records stay confidential.
4/21/2007 5:30 AM
Kristi wrote:
Jim, My symptoms were trouble swallowing,breathing,range of motion in neck,coughing,muscle pain,bone pain,gerd,lymphopathy and a substernal goiter. After a thyroidectomy I still have stiffness in my neck, swollen lymph node in neck and under arms. Pathology findings were plasma cell variant Castleman's found in the one lymph node removed during surgery. Further testing shows negative for PCR methodology for the clonality of the immunoglobulin heavy chain gene on chromosome 14. Other labs that chronically are abnormal.. WBC 11,300-19,000, ESR,CRP highly elevated. Liver and hepatic panels are all normal. Vitamin D levels were 18 but was increased with high doses of vitamin D.. I am uncertain of the course of this disease. The information on this disease is very limited. My doctors are taking the wait and see route now. Is this wise? They only removed one lymph node. I live in Spartanburg/greenville SC area are there any doctor's in the area that are familiar with this disease? Reply to this
I have received your medical dilemma in a previous email and have forwarded it to our medical staff for review. As I am typing I see that one of the physicians have already responded so I will forward the unsanitized data to you under a separate cover.
As to physicians in Spartanburg SC, I know the area well. I did an audit of SPartanbug Steel 3 years ago and was on location for two weeks. With respect to physicians in your immediate area, there are none that I know of. They are primarily located in Little Rock, Boston, Cleveland, Rochester, MN, and Seattle. Please advise of any of these academic facilities are of interest to you. They may be research on my homepage at www.castlemans.org
This could all be related to multicentric CD. If that is the case, she will need treatment. She needs a proper work-up for CD.
Guido Tricot, M.D., Ph.D. Director of MTRC (Myeloma Transplant Research Center) University for Medical Sciences (UAMS) 4301 W Markham Little Rock AR 72205 (877) 635-7240
JIM WRITES:
I have since responded to Dr Tricot asking to clarify the testing (type, urgency, etc.).
4/29/2007 5:43 AM
tanya wrote:
hi im tanya boston mass i just wanted to say every symptom your experiening i have and getting worse yestering i woke up like clikomma patient with only limbs no moveing and stuck feeling pain recently i been have trouble seeing far away or in front of me i feel both my eyes need some help i cant see there weak and close and some time most of blurred vission paind befor not Reply to this
8/3/2007 8:57 AM
Michael wrote:
I was diagnosed with MCD about a year ago. For two years before that I was diagnosed with lupus until my docs decided to review my case since drug treatment wasn't improving my situation. Pathology reviewed at Stanford. After MCD diagnosis, I have had two 4-session treatments of Rituxan. Blood count hadn't changed much until i started on regiment of Aranesp which has helped energy level a lot. Protein in urine has gone down from 1200 to 800, but no improvement in lymph nodes. I'm being treated at UCSF by Dr. Lloyd Damon, and he's suggesting we try thalidomide. I'm a little concerned about side effects, but it seems like a reasonable next step before moving to other treatments. Do you have thoughts on thalidomide as a treatment for non-HIV, MCD. My IL-6 levels are normal. Reply to this
REPLY FROM FRITS VANRHEE (UAMS): Arkansas Cancer Research Center
I would try revlimid instead particularly if he has plasmacytic variant disease. Please note that revlimid has potent immunomodulatory actions and his lupus will warrant close monitoring the lupus may get worse, same or better
Depending on the severity of his lupus one could treat both disorders with an autologous stem cell transplant, but I would have to know a lot more about this patient before recommending this
I am please that he is satisfied with his local doctors. I still strongly advise an opinion with a MD converse with Castleman's Disease in view of complexity of case and lack of response to rituxan
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 Sciences 4301 West Markham Room 416, mail slot 776 Little Rock, AR 72205 Fax: 501-686-6442 Secretary: 501-2961502 ext 1414 Clinic: 501-2961502 ext. 1379
11/20/2007 11:29 AM
amy wrote:
my husband just dx plasma cell variant mcd had 4 rutuxan treatment w/no response just recieved first chop chemo treatment response not yet known,he has extreme symptoms plueral effusions and belly fill with fluid constantly has to go to cath lab to drain he has been in hospital at dhmc in new hampshire for 3 straight months became ill 6 mo. ago his labs are all over the place hes had many blood transfusions fevers;night sweats; he has lost over 100 lbs. and now needs aggressive dialysis. his lymphnodes in neck are hard as a walnut and swollen as are many others throughout his body.he recieves daily steroids and his potassium is hard to control Reply to this
Anti-IL 6 therapy is therefore not indicated. I would again reiterate that this patient needs to be seen by one of us. This may not be straightforward. I have seen proteinuria but this was in a patient with POEMS and Catelman's and in another patient with Castlemabn's and amyloidosis. I agre with Nikhil that as always the first thing is to ascertain the correct diagnosis.
Dr. Frits van Rhee MD PhD MRCP(UK) FRCPath Professor of Medicine Director of Clinical Research
Myeloma Institute for Research and Therapy University of Arkansas for Medical Sciences 4301 West Markham Mail slot 816 Little Rock AR 72205
Although Thalidomide has been used in Castleman's sporadically its role remains unclear and the toxicity especially neuropathy can be a problem. Lenalidomide will be preferable although it has not been clearly evaluated in this disease. About this patient I am not sure what are we treating. I am not convinced from the data here that he has CD. Proteinuria is not a common association with CD. I would also consider doing molecular study to r/o clonality.By treatment are we looking at decreasing lymphadenopathy, decrease symptoms, or lab changes. He will not be eligible for anti-IL6 study as his IL6 is normal.
Hope this helps
Nikhil Munshi, M.D. Adult Oncology Dana Farber Medical School 44 Binney St., M557 Boston, MA 02115 (617) 632-5607
8/6/2007 9:39 AM
Michael wrote:
Thanks to all of you for your comments. A bit more information on me. I'm supposed to start Thalidomide today, and I'm not sure what to do: 8/2/07 WBC COUNT 9.6 RBC COUNT 4.2 HEMOGLOBIN 10.9 HEMATOCRIT 34.2 MCV 81 MCH 25.9 MCHC 31.9 Platelets 533 NEWUTS 7.84 LYMPHS 1.05 MONOS 0.65 EOS 0.04 BASOS 0.03 SEDIMENATAION RATE 180
PROTEIN CONCENTRATION 40 PROT TOTAL PER DAY 817
Original Pathology: Roger Warnke, MD Stanford Hematopathology Consultants 9/6/06
"Lymph node biopsy shows prominent interfollicular plasmaccytosis. Many germinal centers appear atrophic an depleted of germanl cells, although classic hyalinized vessels of hyaline-vascular CD are lacking. Some residula reactive germinal ccenters are present peripherally. The pattern of marked interfolicular plasmacytosis raises suspicion oof the plasma cell variant of CD vs a lymphoproliferative disorder w/ marked plasmacytoid differentiation.... In summary, the findings are compatible with a diagnosis of plasma cell vcariant of CCD, in the absense of demonstratable evidence of HHV-8 infecction, clinical correlation is suggested to confirm the diagnosis."
Comments from most recent PET CT after 2nd round of Rituxan 7/3/07
"Chest: low level FDG uptake within exillary lymph nodes bilaterally. ... the largest left aux l.n. measures 1.7ccm in short axis, while alrgest right l.n. measures 1.2 ccm in short axis. No interval change in PET-avidity on the right, while there is decreased interval PET activity on left where prior max standardized uptake value was 2.5..... ABDOMMEN/PELVIS Again seen is borderline lymphadenopathy w/n the retroperitoneum, left external iliac and left inguinal region. Compared to prior study, there has been interval increase in size and prominencce of left adrenal/retroperitoneal soft tissue mass measuring 2.3 x 1.6 cm. with uptake value of 3.3.... Small pericardial effusion, slightly more prominent than on 3.9/07 study....." Reply to this
8/27/2007 7:37 AM
ALTON EVERSON wrote:
my wife is involved with a clinical trial in Chapel Hill North Carolina at UNC. It involves the interluken 6 treatment. We have had great results and the diesease seems to be under control We understand that they are going to add more castleman patients to the study in coming months. Dr. Vorhees and those on staff here have been wonderful. I do have to give credit to Dr. Fayad at MD Anderson in Texas for connecting us with this clinacal trial when we were in Texas back the last of March. Reply to this
Good luck to you and thank you for the informtion on what sounds like a great clinical trial there in No Carolina. I would like to touch base with Dr Vorhees and see how big of a CD Tx program they have there at Chapel Hill. Would you please send me a number where I may reach him or email address? Much appreciated.
8/30/2007 9:35 AM
tanya wrote:
this is all concering one comment stated a biop and what readings mine was almost if not like my first and that stated findings castleman d second same but didnt state it i still dont understand now still with tumor 2 in chest and neck getting bigger 1cm l of neck and boston dr are not saying or dong anything help Reply to this
I have not seen the biopsy report or Dx. As I have referenced to you in the past, if you are not satisfied with a particular Tx plan, physician, or facility, you always have the opportunity to seek a second opinion. At this juncture, I recommend you obtain a second opinion.
8/30/2007 9:45 AM
tanya wrote:
tanya again when i was born 1975 i had staph disease really severe they didnt remove tumor just fin needle biop drained but, knowing that i would of thought drs whould be thinking more into my case it is now 6 months after 2# biop and there doing testing on it now how or why ketro something nameed that testing but never let me know the diag of the scond biop except i have lymphendpathy and a small chance of lymphoma but as of june nothing cancerous i still think this has something to do with staph cause after i had my appendix burst then gerd problem 2 uclcers still lactose intoleranc and extream pain head to toe my sed rate for the past three years has been abnormel i need better advice or dr n munshi or another 2# op.. or my left lymph in medical papers 1cem i think it should be biop or at least have a chest xray 2.8 x0.8 cm in left anterior meditastium and 1 more so two in chest and left and right neck area my first was in the collar bone area . Reply to this
9/11/2007 6:43 PM
Ron wrote:
my wife has been diagnosed with castlemans disease. Is there anyone who specializes in it in the Chicago area or in nearby states. Currently they want to watch her with no treatment. Symptoms were enlarged lymph node in chest---biopsy performed to determine castlemans, high platelets, some anemia and high protein in her blood. Reply to this
There are three (3) options in your vicinity. These three centers of excellence are staffed with physicians that are familiar with Castlemans Disease and can see your wife immediately or provide a telephonic treatment plan to her Oncologist or Hematologist. Locations and physicians are as follows:
Nikhil Munshi, M.D. Adult Oncology Dana Farber Medical School 44 Binney St., M557 Boston, MA 02115 (617) 632-5607
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 Sciences 4301 West Markham Room 416, mail slot 776 Little Rock, AR 72205 Cell: 501-8047020 Fax: 501-686-6442 Secretary: 501-2961502 ext 1414
Angela Dispenzieri, M.D. Mayo Clinic 200 First Street SW Rochester, MN 58905 Bus (507) 284-2479
Hope these help. Please advise if I may be of further assistance.
9/24/2007 7:19 PM
Mike wrote:
Based on the title of this section,"Success", and having recently undergone treatment for Unifolcal Castleman's Disease, I feel compelled to share my success with you. There is no question that your site and information is helpful to me and my desire is to provide another voice to your already extensive resource. I was originally diagnosed with Hodgekins disease after a minor accident at work required a chest x-ray to clear me from the workers comp claim. A golf ball size mass was found between my lungs at the top of my chest (my upper left media steinum) and was biopsied via a mediasteinoscopy(incision at top of chest opening next to trachea). The results of the pathology were disappointing in that they thought it was Hodgekins disease but could not be conclusive, thus we decided to send it to Mayo Clinic for a second opinion. Mayo Clinic concluded it was CD, and we went back to the first pathology clinic for consensus. After an agonizing few weeks with no conclusion, we sent the slides to Boston, where they concluded it was Unifocal Castleman's and scheduled me for surgical resection. They performed a mediansternotomy (split the chest cavity) and removed this lump which had become rather tangled up with some vital componentry in the area. All of which had been identified as potential problems via a CT scan with contrast. During the operation, they discovered my left laringal nerve ran right through the lump and had already been paralyzed by the lump or the biopsy or both. So they had to cut it out which prevents the left vocal chord from activating, thus my voice is now hoarse sounding. The good news is that the docs were able to prevent any other nerve damage, or damage to the esophagus, or arteries, or any of the other areas this thing was connected to or close to. I'm healing now and have just had a follow up CT scan about two and a half months after surgery with no obvious signs of recurrence. I've had recommendations to go for a CT every 6 months and recommendations to do one every year. (Any suggestions from your panel of experts would be appreciated) My understanding is that with a removal of this lump, there is a very low recurrence of the disease and I certainly hope so. I had an excellent team of doctors that I cannot speak highly enough about and they treated me with compassion, professionalism and expertise. I have obviously simplified what they did, but this much is true... they are a top notch bunch at the Beth Israel. My advice to anyone going through this trying time - as impossible as it may seem, be strong, be positive, keep asking questions, keep living and loving. Best of luck with your challenges. Reply to this
GREAT success story. Although there were some complications during surgery, you have your health back and CD is behind you[ [per se]. I too had a mediastinal mass that did damage to the phrentic nerve. Nothing I cannot live without.
Castlemans Disease is not a death sentence as portrayed by many. There are clinical trials, new drugs, and informed physicians at our "Centers of Excellence". With regard to recurrence and continued check-ups, I strongly recommend it. I am post CD (unicentric resection) and still have my annual CT of the chest, neck, abdomen, and pelvis. It has become routine due to the fact that we have no evidence that unicentric AND multicentric CD may recur.
Congratulations on the news and please keep us informed on your progress.
Regards,
Jim Johnston CD Executive Director Santa Fe, NM USA
11/13/2007 3:48 PM
Allison Gudmunson wrote:
I was diagnosed with Castlemans Disease 1/90, at the age of 25. I was having back pain and a mediastinal mass was found. First , I was told to have Hodgekins, but after a thorocatomy was diagnosed with Castlemans. A year later the mass began growing around my windpipe and radiation treatment was tried and was successful. I have been in remission since. I do have some occasional labored breathing. lately i have been having pain in the chest area, especially when eating. Not sure if it is acid reflux type problem or more. Having my yearly CT scan next week and hoping all is well. It was interesting that your first symptom seems to be similiar to what I'm experiencing. Reply to this
I would be interested in finding out what facility ordered radiation for a mediastinal [benign] mass instead of the textbook surgical resection. Although I am not a physician, I had the same mediastinal mass some 20 yrs ago and had it surgically resected. I have been in remission but have no guarantee that it will NOT return. Surgical resection is chosen as a less evasive Tx as oppose to an external beam of radiation.
Although I do not know your case or the histologic path of your disorder, most benign masses are resected unless they are in a place that cannot be resected then steroids are normally used to reduce the size of the tumor for resection. Every case is different and I do not know the particulars of yours but this is my best stab as a layman.
11/23/2007 4:47 PM
Allison wrote:
Jim, The mediastinal mass I had was inoperable without taking out my right lung . One year later when the mass began to grow radiation was tried. My Thoracic surgeon was(David Sugarbaker) at Brigham & Womens hospital in Boston. The radiation tx was done in manchester NH, where i was living at the time. At this time I was told to be the first case of Castlemans that was inoperable and also tx with radiation Reply to this
I am sure everyone was told that there case was the first case of CD due to the fact that these physicians have never seen case of CD before. ALthough you may have CD in a rare and hard place to treat, there IS a physician there at Dana Farber that is on our Board of Directors and sees CastlemANS patients regularly. Please ask for Dr Nikhil Munshi (he can be located on the Castlemans web). Tell him I referred you and I will follow up with him to make sure he gets the message you need Tx.
11/26/2007 6:42 AM
Allison wrote:
Jim, I'm currently under the care of Dr.Raphael(hematologist) at NYU cancer center. If there is anyone else in the NY area, you have heard good things about ,please let me know. Thanks Reply to this
The closest physician I have had dealings with for a very long time is Dr Munshi out of Boston, Dana Farber Cancer Institute. Please try to arrange a telephone conversation w/ Dr Munshi to get things moving.
11/20/2007 9:25 AMRichard Cooke wrote:
Hi Jim, just thought I'd write and say I'm still alive after my first diagnosed with my Castlemans in June 1998. After getting Short Bowel Syndrome due to multiple bowel resections due to my Castleman's & still under constant threat of recurrent thromboelism I still inject my stomach every morning with Heparin. I came out of hospital only yesterday after a blood clot caused a instant panic!! but then dispersed without having me to under go surgery I thank God for this act, but am always thankfull that I still continue to live a happy life with my wife Carol and three sons Adam,Andrew and Daniel. I am forever in debt to my medical team at St Richards Hospital Chichester England who continue to keep me "Firing on all Four like a good old ford car" Please pass on by best to all my old buddies stateside who beat to the same old Castleman's Drummer, but remember to NEVER GIVE UP. Kind regards Richard Cooke England Reply to this
THank you for the update and the note that you are still fairly well. Thats all we can all hope for (peaceful quality of life). I am sure there are many other patients that share your same sentiments with respect to multiple diagnosis of other auto-immune disorders after Castlemans (me included). Please stay in touch and hope your new year brings peace.
