International Castlemans Disease Organization

Comments

Display comments as (Linear | Threaded)

10/12/2006 12:04 PM Francis Farmer wrote:
I would be interested in any comments or would like to know if there are there any trials on stem cell transplants for MC Castlemans with Poems syndrome.
Reply to this
1. 10/12/2006 7:56 PM Jim Johnston, Executive Director wrote:
  I have submitted your email for a medical consult.
  
  Regards,
  JIM
  Reply to this
10/13/2006 6:12 AM Dr Frits van Rhee wrote:
There are no formal clinical trial on stem cell transplantation in Castleman's disease and POEMS although we have performed a number of transplants for these disorders

Dr. Frits van Rhee
Reply to this
1. 10/26/2006 3:43 PM Francis Farmer wrote:
  I would like to thank you for your reply. You say you have performed a number of transplants for these disorders, could I ask how successful these were and what the procedure was. I am currently undergoing chemotherapy, my specialist is considering a stem cell transplant. He mentioned that it can be risky for people with castlemans.
  Reply to this
2. 5/16/2007 3:27 AM Jan wrote:
  First of all, thank you to Jim and all involved with this informative, well-researched website. It's an inspiring example of someone handed lemons and making lemonade! (Although I prefer the line, "when life hands you lemons, have a tequila!")
  
  I do not have Castleman's (to my knowledge) but I do have POEMS syndrome and I am currently trying to decide whether to go ahead with a stem cell transplant. I have my stem cells harvested and cooling their heels at the ready but I'm terrified!
  
  I am interested to know your doctors' experience with stem cell transplants for POEMS. The 16 patients from Mayo study was rather alarming for the morbidity and mortality levels. Five patients had to go onto mechanical ventilation (temporarily, but it still sounds very scary) and one died. I have been in touch with Dr Dispenzieri at Mayo and she said their morbidity/mortality rates have improved with subsequent POEMS transplants. She said she has observed that POEMS patients appear to have a greater propensity for periengraftment syndrome, and now if there is any sign of this, they give large doses of corticosteroids and that seems to overcome the problem. However, I would be interested to know of other docs' experience re out-of-the-ordinary morbidity/mortality with any POEMS transplants they have conducted. I would also be interested in patient response re peripheral neuropathy, as this is my worst symptom.
  
  It would be great to contact the New Zealander, Francis Farmer, who was undergoing a stem cell transplant for POEMS. I am a neighbour downunder in Australia.
  
  Thank you again for your exceptional work Jim, and I send my best wishes in facing your own health challenges.
  
  Jan
  Reply to this
  1. 5/21/2007 3:37 PM Jim wrote:
    
    JAN - REPLY FROM UAMS, Dr GUIDO TRICOT:
    
    I agree that there is an increased morbidity and mortality in POEMS and such patients should routinely receive steroids. If your major problem is neuropathy, I am afraid that only transplantation will be able to improve these symptoms. You should have your transplant done in a center with experience with such patients.
    
    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
    
    Reply to this
  2. 5/21/2007 4:00 PM Jim wrote:
    
    JAN - REPLY FROM UAMS, DR VANRHEE:
    
    Dear Sir,
    
    The high morbidity/mortality rate of the publication of the Mayo clinic reflects that these patients had advanced POEMS syndrome. The earlier you treat the easier the transplant is!!!!!!!!! In some patients POEMS advances slowly in others more rapidly. POEMS can be a deadly disease. The most important thing is not to loose the window of opportunity for transplant when you are still in reasonable condition. Do not hesitate and proceed to transplant. I also give steroids at the time of transplant in sicker patients and this helps to “cool down” the cytokine storm and makes the transplant much easier.
    
    I have seen patients with advanced POEMS syndrome ‘resurrrect from the dead’ with transplant without going on the ventilator etc.
    
    Please trust your doctor’s advice. Please go ahead with transplant if you are seeing Dr. Dispenzieri. If you are seeing a MD less familiar with POEMS then I am certain that Dr.Dispenzieri or I would be happy to transplant you.
    
    Finally, in very sick patients a brief period of pre-treatment with drugs can optimize their condition and maximize the chance of success.
    
    Kind regards,
    
    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
    
    cell: 501-8047020
    office: 501-5266990 ext 2425
    secretary: 501-5266990 ext 2467
    fax: 501-5262273
    www.myeloma.uams.edu
    
    Reply to this
    1. 5/22/2007 12:26 AM Jan Walker wrote:
      Jim and doctors,
      
      Thank you so much for this advice.
      
      I am being treated in the haematology department of a large, reputable public hospital in Australia where they do a lot of successful high dose chemo/stemcell transplants for myeloma, lymphoma, etc. However, I will be their first POEMS transplant so they are a little cautious.
      
      My doctor has contacted Dr Dispenzieri at Mayo and she has passed on the protocols and steroid dosage they use.
      
      I have considered travelling to the US for treatment but I think the downsides of the marathon air travel, cost issues, and lack of support systems and familiar environment would outweigh the benefits. I believe the transplant here in Perth, Western Australia, with the benefit of advice from experienced international experts, is my best option.
      
      Thanks again.
      Reply to this
      1. 5/22/2007 8:40 PM Jim wrote:
        Jan,
        
        Please do not hesitate to write if there are any concerns or questions you may have. e are glad to be f assistance.
        
        Regards,
        
        Jim Johnston
        ICDO Executive Director
        Santa Fem NM 87508
        (505) 660-1036
        HMConsult@msn.com
        http;//www.castlemans.org
        
        Reply to this
10/13/2006 3:32 PM Valerie Evans wrote:
Mayo Clinic, Rochester, MN conducted a study of 16 patients with POEMS Syndrome, treated with autologous stem cell transplantation. Two of these patients also had MC Castlemans disease. Both patients (of whom my husband was one) showed remarkable improvement. My husband is 4 1/2 years symtom free. The study was published in the American Blood Journal in October or November 2004.
Reply to this
1. 10/26/2006 3:53 PM Francis farmer wrote:
  Valerie thanks for your reply, you have given me some hope.
  Reply to this
11/29/2006 5:48 PM Wendy chapman wrote:
my father was diagnosed with multi centric castlemans disease about a year ago. He was treated with rhetuxibum(Sp?)Without much luck.He now has POEMS.Neuropathy in his legs. They want to treat him with Thalidomide next, which is being denied from the insurance we are currently appealing. Has anyone had any experience with this treatment choice? Is it true that life expentacancy is only 2 years after diagnosis? please help
Reply to this
1. 12/1/2006 10:03 PM Jim wrote:
  
  Wendy,
  
  I will send this off for a medical opinion from one of our medical staff. Will get back to you here as soon as information is available.
  
  Regards,
  
  JIM
  
  Reply to this
2. 12/2/2006 1:28 PM Frits van Rhee MD PhD wrote:
  Thalidomide may cause neuropathy and is not a good choice for a POEMS patient with neuropathy. Single agent thalidomide is not likely to be effective in any case. Recommend assesment in center experienced with POEMS.It is posssible that your father may need stem cell transplantation.
  >Dr. Frits van Rhee, MD, PhD, FRCPath, MRCP(UK) Professor of Medicine
  >Director of Immunotherapy and Allogeneic Stem Cell
  Transplantation
  >
  >Myeloma Institute for Research and Therapy University of Arkansas for
  >Medical Sciences
  >4301 West Markham Street, #776
  >Little Rock,AR 72205
  Reply to this
  1. 12/27/2006 12:24 PM Bobby Haig wrote:
    I have had CD and POEMS since 1994. I was treated with a high dosage of prednisone (I am currently off prednisone). I'm now being treated with Cyclosporine & Cell Cept with good results (meaning stabilized). My question is, do the people who get the stem cell transplant regain the use of their nerve damage parts. My feet are damaged bad enough that I need AFO's to walk. Plus, I have had stomach problems since day one. Thank You, Bobby
    Reply to this
    1. 2/5/2007 1:56 PM Valerie Evans wrote:
      My husband had virtually no feeling in his legs from the knee down due to neuropathy. Approximately 1 year post stem cell transplant he has recovered the feeling in his legs with the exception of his toes.
      Reply to this
      1. 2/5/2007 4:00 PM Jim wrote:
        Response from Dr Guido Tricot (UAMS) Little Rock:
        
        If your disease is stable on the current treatment I would not change it. If your neuropathy clearly worsens and more conventional treatments can not control it anymore, then it is time to think about a stem cell transplant. With a transplant, further nerve damage is likely to be halted and recent nerve damage may recover, but long-standing nerve damage is unlikely to recover.
        
        Guido Tricot, M.D., Ph.D.
        Director of MTRC
        (MyelomaTransplantResearchCenter)
        University for Medical Sciences (UAMS)
        4301 W Markham
        Little RockAR 72205
        (877) 635-7240
        TricotGuidoJ@uams.edu
        
        Reply to this
1/26/2007 8:31 PM DT wrote:
I have unicentric CD diagnosed by removal of a LN from posterior cervical region in 2004. Only symptoms I have, that seem odd to me, are a rash in the subscrotal area and a patch of psoriasis on my chest. Fluiconide (spelling?) helps for the latter. Pramosone offers relief for the former.
Two follow-up CT scans since the surgery showed no abnormalities, except a spot on the thymus or thyroid that was not worrisome. Recently, I found a psoriatic type patch near my left elbow. I am getting concerned. I also notice consistent diarrhea and fissure in the anal region, which Dr. attributed to hemorrhoids and low fiber. I am very concerned, but Drs. never seemed to be. I have a history of mono at age ~12. What would be the next step? Are any of these symptoms of concern. I do not know where to turn, since my Dr. seems indifferent and I left the Heme/Onc Dr. who diagnosed it.
Reply to this
2/9/2007 11:14 PM Tanya wrote:
Hi I was just diagnosed with plasma cell variant castlemans disease. can anyone please help me. From all the things I have been reading it just sounds like a death sentence. I am only 31. I just want to know about possible treatments. I am the 1st ever diagnosed case here in my city and the doctors are pretty stumped. i am getting a 2nd opinion from UCLA here in the next couple weeks and I think that is just so my doctors can confer with the docs there. If anyone has any information on my strain of castlemans please email me at holliesmom2001@yahoo.com thank you
Reply to this
1. 2/11/2007 7:07 PM Jim wrote:
  
  Tanya,
  
  I have just sent you an email with information pertaining to the various physicians tha are available and that "treat" Castlemans Disease. FOr the variant that you have (PCCD), Dr. Corey Casper of Fred Hutchinson is our expert on the Plasma Cell Disease. If you are interested in seeing Dr Casper, his email address and number is on the main page of the Castlemans Disease website. If getting to Seattle is a problem, I suggest a telephone consult between yourself and Dr Casper initially. Then put your treating HEM/ONC in touch with Dr Casper and they can work together for a long distance treatment plan.
  
  I was in San Diego when I was initially diagnosed and contacted UCSD for treatment options. They immediately referred me to Little Rock (University of Arkansas for Medical Sciences) where I was successfully treated. I do not know of any west coast physician that specializes in CD other than Dr Casper. Please advise if more information is needed.
  
  Regards,
  
  Jim Johnston
  CD Executive Director
  
  Reply to this
  1. 2/15/2007 11:25 PM tanya wrote:
    i thank you for getting back soon, is there any doctors in the east cost. also if i have huge lymph after only 1 and removed and spreading does that sound bad , like my dr never told me after 1st apt what cd i had , but on pathology exam biop.. it stated large cells postive and scattered plasma cells. also, i have a few lesion on my liver. it stated accompanying immunohistochemical stains of lymphoid cells for LCA, WHAT IS LCA. it also confused me by statement saying secondary follicles composed of atrophic sppearing germinal centers surrounded by expanded mantel zone. with slight increase in vascularity. basically all stains positive were. 1.plasma cell 2.atrophic secondary follicles for b- cell ? also dendritic reticulum cells and sparse germinal centers and interfollicular area's for t-cell antigens and mantel zone cells. but stain for bcl was non-contributory. also biopsy of full lymph/ was post.. for occasional large cells (immunoblast) and the immunohistochemical stains done bmc revealed + for scattered plasma cells but (approx 5%) of cellularity . prominate blood vessels seen. then it states clear-cut hyalinized blood vessels with germ centers were not readily apparent (what does this all mean ) is it plasma cell or hylinvasular or it was one lymph so it was the 1st CD then now after removel it spread to plasma cell / mc castlemans. im lost ...
    Reply to this
    1. 2/15/2007 11:34 PM Jim wrote:
      
      Tania,
      
      Since I am not a physician I can only recommend a physician in your immediate area. I have copied Dr Munshi and asked him to get in touch with you for a telephone consult and potential visit in clinic. If you do not hear from him w/i 2-3 days, please advise and I will see if he is i the country. He may be busy at which point he has a colleague that can take the information for him and get you into see a CD Specialist.
      
      Regards,
      
      Jim Johnston, Executive Director
      
      Reply to this
      1. 2/16/2007 12:03 AM tanya wrote:
        ok i appreciate it and a 2ed chance with his colleague instead . BUT, IS THERE ANYONE THAT CAN RELATE TO WHEN I SAY IN PAIN EXTREMLY ALL OVER.
        Reply to this
        2/16/2007 12:20 AM Jim wrote:
        Tanya,
        
        I have ust sent over 5-6 other referrals. Please advise if any work for you.
        
        Regards,
        
        Jim Johnston, ED
        
        Reply to this
    2. 2/16/2007 1:11 AM tanya wrote:
      WITH ALL THE POSITIVE STAINS WHAT CD DO I HAVE
      Reply to this
      1. 2/16/2007 1:18 AM Jim wrote:
        
        I have not seen the slides nor have reviewed the blood work. Lets wait until we get a legal medical opinion before we speculate. This Dx must come from a CD Specialist. Get some rest and I am going to do the same.
        
        Regards,
        
        JIM
        
        Reply to this
2/16/2007 12:01 AM tanya wrote:
well please ask is colleague first. for a 2ed opinion please ,, thank you
Reply to this
1. 2/16/2007 12:24 AM Jim wrote:
  
  Will do - but please try these other referrals first. On a scale of 1-10 (10 being extreme pain requiring medication and intervention) how would you rank your pain.
  
  Regards,
  
  JIM
  
  Reply to this
  1. 2/16/2007 1:04 AM tanya wrote:
    pain 13.. and thats no meds i have gerd so tylenol over counter all i can do ,, and now i practically have to beg for pain releif from munshi. he even sent me to a pain cancer dr maureen lynch. she tried patch fentanyl 25 did do much i never tried such a strong opiod and patch for so she said up it 50 2 patch. and i slept all the time . so i recommended what dr munshi did in the beging hydromorphone ER tabs.. now he has me takeing hydrocodon. (vicodin low dose ) and its not working that well . weres of fast. pain a 12
    Reply to this
    1. 2/16/2007 1:15 AM Jim wrote:
      
      Tanya,
      
      Lets wait ans see what response we get from the other physicians in the AM. I will call Munshi's colleague and see what he can do.
      
      Regards,
      
      JIM
      
      Reply to this
      1. 2/16/2007 2:46 AM tanya p wrote:
        ok but , i know i can get 2ed opioin but, dont want to hurt dr munshi feelings please get back to me asap reverema123@hotmail.com thank you god bless. but yes or no does castleman in what percentage casuese extream pain .
        Reply to this
        2/16/2007 6:42 PM Jim wrote:
        
        REPLY FROM DR DISPENZIERI:
        
        I would say Dr. Munshi is this patient's man for CD in that area of the country. It is not clear to me that this patient has been diagnosed yet with CD. A biopsy is needed to make the diagnosis. PET can't make diagnosis, but it can help stage once the diagnosis is made.
        
        And yes, CD can on occasion cause bone pain and aches.
        
        Angela Dispenzieri, M.D.
        Associate Professor of Medicine
        Mayo Clinic
        200 First Street SW
        Rochester, MN 55905
        Phone: 507 284-2479
        
        Reply to this
        4/4/2007 12:34 AM tanya pell wrote:
        my diagnose came with my first biopsy of my left supervasculer area .. and the pet was second so.. but thank you for any info and everything your helping me with
        Reply to this
        4/4/2007 11:03 PM Jim wrote:
        
        TANYA P,
        
        No problem
        
        Regards,
        
        Jim Johnston,
        CD Executive Director
        
        Reply to this
3/19/2007 2:26 PM Jim Johnston, Executive Director wrote:
NEW CASTLEMANS CLINICAL TRIALS :
Please visit

http://www.clinicaltrials.gov/ct/search;jsessionid=A2AB9402A17B1DD5F6EAA308C9B6AEBB?term=Castleman&submit=Search

for an update and information on the four clinical trials.

Regards,

Jim Johnston,
Executive Director
Reply to this
3/26/2007 6:25 PM Steve Zalkin wrote:
Jim: I have been battling Castleman's for two years. Had three surgeries to remove benign tumors in the neck, groin and underarm. The doctors diagnosis has been a combination of hyaline-vascular and plasma cell type castleman's. First treatment was heavy doses of prednisone that stifled the disease for 5 months before symptoms reoccured. Next treatment was four weeks of rituxamed. Again the genie was put back in the bottle for another 4-5 months. Recently, my IL-6 has increased, hemoglobin decreased and other tests reflecting a return of castleman's. I had a choice of trying retuximed again or a stem cell transplant. We are trying the retuximed again before stem cell transplant. Looking for additional treatment suggestions and options. Thank you for the time.
Reply to this
1. 3/29/2007 3:10 PM Jim wrote:
  
  Steve,
  
  First off, I need to caveat this email with the statement that I am nit a physician but a patient myself of 15+ years and CD patient advocate. In reviewing your email, the first thing that was glaring was were was the treatment provided and was the clinician a Specialist in Castlemans DIesaes treatment?
  
  The Organization has established "Centers of Excellence" throughout the US that specialize in the treatment and care of Castlemans Disease patients. I recommend that you seek an opinion from a SPecialist who is well-known in the treatment of CD.
  
  As to your initial comment, I will forward your email to our medical staff for review and will have a response w/i 24-48 hrs. They can recommend a treatment plan or facility to work with in controlling this diesaes.
  
  Regards,
  
  Jim Johnston,
  Executive Director
  
  Reply to this
  1. 3/30/2007 5:43 AM Jim wrote:
    
    STEVE, Reply from ACRC:
    
    Dr Tricot writes
    
    Before proceeding with a transplant, I would suggest to try the IL-6 antibody therapy and if that fails chemotherapy with a regimen like VDT-PACE for a few cycles and collect stem cells with the first round,in case you need a transplant later.
    
    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
    (501) 296-1503 x1423
    
    Reply to this
2. 3/30/2007 5:49 AM Jim wrote:
  
  STEVE, Reply from ACRC, Dr VanRhee writes:
  
  He should come to UAMS stat. We can avoid transplant with anti -IL6 antibody therapy
  
  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
  vanrheefrits@uams.edu
  
  Reply to this
6/6/2007 5:39 PM Jan wrote:
Hi Jim

I contacted you about stem cell transplants for POEMS a couple of weeks back and very much appreciated you accessing the advice of Dr Tricot and Dr van Rhee for me.

At the end of Dr van Rhee's message he said:

"Finally, in very sick patients a brief period of pre-treatment with drugs can optimize their condition and maximize the chance of success."

I'm not sure whether I qualify as "very sick" but my condition seems to have deteriorated slightly in the last couple of weeks. My neuropathy is marginally worse (although I can still walk) and I have been having some suffocation sensations when breathing. However, it is difficult to know what's POEMS and what's anxiety and being hyper-vigilant about my bodily functions.

I would like to know what kind of drugs he uses for this "pre-treatment" before SCT and for how long so I can pass on the information to my haematologist in Australia.

Regards

Jan
Reply to this
1. 6/6/2007 8:37 PM Jim wrote:
  Jan,
  
  I have forwarded your "request for clarification" to Dr vanRhee. I should here back within 24 hrs. Will advise when his information arrives.
  
  Regards,
  
  Jim Johnston
  ICDO Executive Director
  Reply to this
6/6/2007 11:19 PM tanya p wrote:
i know alot of these drs are great just by comments left i know at some point i need to put my faith but come my dr saw alot of patients and gave them medicine and helped them asap me he she left me waiting from 11 of 2006 to 1/07 no meds other then cover up of severe pain. why is my question
Reply to this
1. 6/7/2007 10:23 PM Jim wrote:
  Tanya,
  
  Please let me know exactly what you would like me to assist with. By your email, I am only getting bits and pieces of the story and I need to know exactly what your plan is - and what your local physicians recommendation is or was.
  
  Regards,
  
  Jim Johnston
  ICDO Executive Director
  Reply to this
6/24/2007 2:30 AM Jan wrote:
Jan wrote:
Hi Jim

I hope you are well. Sounds like you have been busy and on the move!

I am reposting the following message because it appears to have been overlooked...

I contacted you about stem cell transplants for POEMS a couple of weeks back and very much appreciated you accessing the advice of Dr Tricot and Dr van Rhee for me.

At the end of Dr van Rhee's message he said:

"Finally, in very sick patients a brief period of pre-treatment with drugs can optimize their condition and maximize the chance of success."

I'm not sure whether I qualify as "very sick" but my condition seems to have deteriorated slightly in the last couple of weeks. My neuropathy is marginally worse (although I can still walk) and I have been having some suffocation sensations when breathing. However, it is difficult to know what's POEMS and what's anxiety and being hyper-vigilant about my bodily functions.

I would like to know what kind of drugs he uses for this "pre-treatment" before SCT and for how long so I can pass on the information to my haematologist in Australia.

Regards

Jan
Reply to this
Reply to this
1. 6/25/2007 6:32 PM Jim wrote:
  
  Jan,
  
  I have forwarded the chronology of emails to the three physicians to request further patient clarification. I will post their responses as soon as ther are received. Sorry for the delay - I was on travel.
  
  Regards,
  
  Jim Johnston
  Executive Director
  
  Reply to this
2. 6/27/2007 9:31 AM Jim wrote:
  
  JAN - REPLY FROM DR VANRHEE (UAMS)
  
  Please use Methyprednisone 1mg/kg for 5 days prior to transplant and 5 days after transplant. Do not wait. Go for transplant. I have just transplanted two patients with POEMS who have had stunning improvements. Both of them were very, very sick.
  
  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
  office: 501-5266990 ext 2425
  secretary: 501-5266990 ext 2467
  fax: 501-5262273
  
  www.myeloma.uams.edu
  
  Reply to this
3. 6/27/2007 10:14 AM Jim wrote:
  
  JAN - RESPONSE FROM DR TRICOT (UAMS)
  
  It is very difficult to decide what treatment to give prior to a transplant if that is indicated. Transplantation for CD is only indicated if everything else fails and patient's condition clearly deteriorates. In those cases chemotherapy like we give for lymphoma are usually necessary to control the disease. It also tells you if patients respond to such therapy that a transplant will be helpful.
  
  Guido Tricot, M.D.
  Director of MTRC
  (Myeloma Transplant Research Center)
  University of Arkansas for Medical Sciences
  4301 W Markham
  Little Rock, AR 72205
  (877) 635-7240
  (501) 686-7071 Fax
  TricotGuidoJ@uams.edu
  
  Reply to this
4/2/2008 5:03 PM Anabel wrote:
i want to know what type of test i could do, because I have three years that I didn´t do anything, I´n a patien with castleman´s dosease from 16 years ago.
Reply to this
1. 4/6/2008 1:21 PM Jim wrote:
  Anabel,
  
  I cannot provide a legal or medical advice and will only offer my opinion based on my previous history with this disease. Let me forward this email to one of our medical staff for an opinion. I will be back in touch.
  
  Kind regards,
  
  Jim Johnston
  ICDO Executive Director
  Reply to this
2. 4/6/2008 1:51 PM Jim wrote:
  ANABEL, RESPONSE FROM DR VAN RHEE
  
  CTPET or CTs. Rputine blood work eg
  CBC sed rate. Albumin, fibrinogen, IL6, and LFTS.
  
  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
  
  Clinic: 501-2961502 ext. 1379
  
  Lab. 501-2961502 ext.1450
  vanrheefrits@uams.edu
  Reply to this
5/10/2008 7:21 PM Kerri wrote:
Dear Jim and Doctors,

I have made previous contact on ICDO website regarding my father who was diagnosed with Castleman Disease multi-centric late last year.

My father has since January of this year received regular transfusions as he is chronically anaemic. His blood count back in January was at around 112-106 lasting around 5 weeks. Since this time he has had several other transfusions as his blood levels keep dropping.

We only just found out that back in January 31 he has had antibodys show up in his blood which currently seem to reject the transfusions he is now having. The antibodies are:ANTi-E-K, AntiJka, Anti-Cw and this now presents another problem in cross-matching appropriate blood to his own.He was recently discharged from hospital at a hb (haemaglobin count) of 76.

I have a detailed discharge summary which outlines my fathers past medical and present history if this would help including diagnosis of: Castleman's, Anaemia and Pneumonia. He is currently on 50mg of Prendisone daily and insulin to control the high sugar levels.

Whilst in hospital they treated him with 600mg per day (200mg x 3)over 5 days of Octagam (Intravenous Immunoglobulin (IVIG)which kept his hb levels fluctuating between 84-80, as at discharge (9 May 08) he was hb76 which is still very low.

He was given Aranesp Sureclick due to reduced levels of EPO (erythropoietins) in his kidney and is currently on trial with this to help anemia levels.

He is due to go back for Blood tests on Monday 12 May to check his hb. The haematology specialist is due to start Mabthera(Rituximab) but is waiting to check on his current progress.

He has had methyl prednisone to reduce frequency of transfusions but this was not successful (April 08).

It is such a vicious circle he is facing with this chronic anemia. Unfortunately the anti -IL6 drug is not available in Sydney, Australia - I have researched via pharma company the name of one Actemra R which we could possibly apply for on compassionate grounds. The only problem is it takes up to 8 weeks and he may not be accepted for Clinical Trial.

So this leaves us to the current position of what else can be done for my father? Is surgery to remove a large lymph node/s - (his spleen is enlarged) an option, given his low hb?

Is there anything else you can suggest as the haematology specialist who is doing a good job as much as he can as he has not seen Castleman Disease before. There does not appear to be any CD Specialists in Sydney.

Thank you for your help.
Kind regards Kerri
Reply to this
1. 5/12/2008 1:22 PM Jim wrote:
  Keri,
  
  I will send this out to all Staff in the hopes of getting a US Physician to contact your Sidney MD directly and make sure all CD testing protocols have been met. They can also shed light on any new Tx plans that may be utilized. Please keep in mind, it is very hard to Dx, treat and monitor patients long distances. They will need the Tx Physicians email address and number to get in contact with the treating MD>
  
  Will stay in touch.
  
  Regards,
  
  JIM
  CD Executive Director
  Reply to this
5/11/2008 12:46 PM Katy Allen wrote:
I was diagnosed with castlemans a few yrs back. Dr Fritts VanRhee was my Dr throughout my treatments..
Anyway my symptoms started back when i was pregnate with my son in 2000, (or so i think) I had a knot on my ribs that constantly hurt.. But when he was born it went away, till 2002 when i got pregnate with my little girl.. after i had her they done a routine chest x ray and found the spot on my lungs.. i had surgeries and chemo and it was all gone and to my knowlegde still is.. But now i am pregnate again and i am having the same pain i had during my other pregnacies.. i was wondering if there is a chance of it having returned since i have become pregnate and any suggestions you could give would be nice.. thank you
Reply to this
1. 5/12/2008 1:12 PM Jim wrote:
  Katy,
  
  Since Dr Vanrhee saw you in clinic and was your Tx physician, I am going to forward this bac to him. He will be in contact with you directly for a course of action.
  
  Regards,
  
  JIM
  CD Executive Director
  Reply to this
7/3/2008 8:55 AM Deborah wrote:
I was diagnosed with mcd in 3-07.
THE IL6 TREATMENTS HAVE SAVED MY LIFE. BUT,WAITING FOR MY DISABILITY HEALTH COVERAGE HAS NOT SAVED OUR BUDGET. MY HUSBAND HAS CHANGED JOBS TO ACCOMODATE 2 TRIPS A MONTH 5 HRS EACH WAY. IS THERE ANY FUNDING AVAILABLE? THIS TREATMENT IS HELPFUL,BUT WE ARE STRUGGLING .
DEBORAH
Reply to this
1. 7/10/2008 12:43 PM Jim wrote:
  Deborah,
  
  I am familiar with the federal SS Disability process and the request for medical coverage needs to go through at the same time the request for disability funds are requested. Once submitted, there is a two year waiting period for medical benefits under Social Security. I recommend you contact your state legislation and request intervention to assist in obtaining SS medical benefits. There is no other way except petitioning Social Security yourself in Washington DC.
  
  As to financial assistance through ICDO, there is not a budget yet for this request. If there is a need for medication, I do know that many of the pharmaceuticals have budgets that handle this type of assistance.
  
  Please advise if further clarification or assistance is needed.
  
  Regards,
  
  Jim Johnston,
  Executive Director
  Reply to this

Back to Main Page

Category Archives

Recent Entries

Recent Comments

Subscribe

Monthly Archives

Clinical Trials for Castlemans Disease and associated disorders

Trackbacks

Comments

Leave a comment

Back to Main Page

Quicksearch

Quicksearch

Category Archives

Recent Entries

Recent Comments

Subscribe

Monthly Archives

Clinical Trials for Castlemans Disease and associated disorders

Trackbacks

Comments

Leave a comment