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I just want to know if you can help a myeloma patient in india

I had BMT in Feb 2010. Kappa Free now 23.23, which is double 12-16 in October 2011. What does it mean? what damage does it cause? What are treatment options? I see my UCSF doctor, Jeffrey Wolf, on 4-24-12 but would like to prepare.

Aprpeciate all you do.

Me gustaria que me informen si tienen o conocen algun grupo de apoyo en Buenos Aires, Argentina, ya que la Fundacion Argentin de Mieloma no tiene nada ni deja que los armemos y yo como paciente necesito intercambiar ideas con algun grupo de apoyo ya que hace 6 a�os que tengo mieloma, tambien estoy trasplantedo, pero ahora estoy en recaida y no encontramos el remedio que me haga bien.
Les dejo esta inquietud y espero una respusta ya que de la Fundacion Argentina no tengo respuesta y de la Latinoamericana tampoco me dan respuestas a las notas que les escribo.
Gracias.

Ricardo, contactaste a la IMF Latin America? Ellos están trabajando en el nuevo sitio web que estará listo en Diciembre y quieren organizar grupos de apoyo en Argentina. Envíe un correo electrónico a la presidente Christine Battistini imf@myeloma.org.br

Hello,

I would like to give you all the information we have on the care for myeloma, treatment and support in Buenos Aires. It would be best done by personal email at hotline@myeloma.org or by phone at 800-452-2873. Please give us your address so we can send you an information packet as well.

Thank you, Judy

Hola,

Me gustar�a darle toda la informaci�n que tenemos sobre el cuidado para el tratamiento de mieloma, y apoyo en Buenos Aires.

Ser�a mejor hacerlo por correo electr�nico personal en hotline@myeloma.org o por tel�fono al 800-452-2873.

Por favor d�nos su direcci�n para que podamos enviarle un paquete de informaci�n tambi�n.

Gracias, Judy

I'd like to know if someone can help me decipher my lab results. My doctor has not explained anything to me, all he tells me is that my labwork looks good. Especially since I've been having a lot of bone pain over the past 2 months, it's really frustrating when all the doctor is looking at is lab results.

Thanks so much.

Hi Jackie,

If you provide me with your email I can set you up with someone at the hotline. Email me at cphillis@myeloma.org or you can email the hotline your question directly at hotline@myeloma.org.

Thanks!
IMF Web Editor
Christina Phillis

Thanks so much. I now have another question. I was told that during a MRI I had done two weeks ago, it came back positive for 2 lesions on my right arm. What does that mean? What are my options?

I am having a hard time understanding my husbands 24 hour urine test. The doctor says he is not in kidney failure, but his total protein is 624. He has free light chain, IGg type myeloma and has had it for 10 years now. Here is the component results of his 24 hour urine tests. Total Vol. 2150; collection time 24 hrs; Tprotein, Urine 29.0 mg/dl; TOT Protein, UR 624 mg; Albumin, Urine 36.56%; Alpha1, Urine 5.87%; Alpha 2, Urine 16.72%; Beta, Urine 17.37%; Comment: Beta M-spike=22.17% or 6.43 mg/dl or 138 mg/24hrs;
Gamma, Urine 23.16%; PROT ELP E UwINT-comment: Monoclonal spike in the beta-gamma region.

Eric's Lambda Free Lt Chain, S 63.9 mg/dl; Be Microgloubulin 3.23 mg/dl; M-spike= 1.98g/dl

I hope you can help me I am worried since his Free Lt Chains has been this high for over a year, what it is doing to his kidneys. He also has heart failure and COPD and Diabetes. His treatment as of right now is Velcade, Revlimid, and Dex, he has been on this regiment for over a year.
Thanks
Diana

Hello,

Can you provide me an email so we can get in touch with you? Mine is cphillis@myeloma.org. Or contact the hotline at hotline@myeloma.org.

Thanks!
-Christina
IMF Web Editor

Hello, Diana:

Please call in to the Hotline, and we can talk about what information the 24 hour urine test gives us. It is also relevant to look at your husband's serum Creatinine and BUN as well as the specific gravity of his urine in conjunction to the urine values.
Has the doctor given you his GFR (glomerular filtration rate) as well? Take care, and look forward to hearing from you.
Judy IMF Hotline 1 800-452-2873

I see details about the June 28th webcast but I do not see how to register for the webcast with Dr. Brian Durie. I would appreciate assistance. Thanks, Linda

Hi Linda,

Here are the details for the call. On the date and just before the time of the call, dial in using the number provided below. You will be prompted to put in the passcode which will then give you access to the teleconference.

DATE: Thursday, June 28, 2012
TIME: 4:00 PM (Pacific); 7:00 PM (Eastern)
SPEAKER: Brian G.M. Durie, MD
DURATION: 60 minutes (presentation and Q & A)

Toll Free Dial-In Information: 877-441-5676
Event Passcode: 75699472
(Note: The EVENT PASSCODE is required to access this free teleconference)

I'm currently on velcade, subq,weekly.About a month ago, I had a small fracture in my pelvis and it's quite painful. I'm wondering if the velcade will mend the break or will I need to seek other treatment. Please respond. Thanx! R Charlton

My mother has multiple myeloma and thankfully her treatment is going well, but I feel she is getting depress and feels lonely. She only speaks spanish. Do you have any spanish speaking support groups she can either attend or call. I feel she also needs phychological help with dealing with this decease.We live in Indiana.

Thanks,Silvia

I want to know that can you help multiple myeloma patient in Pakistan.
He is in advanced stage myeloma and he is only supporter of his family,
Please if your answer is yes than reply me fast, may we can save his children's smile. Please consider!

annie

Hello,

Please contact the IMF Hotline at 800-452-2873
M-Th: 9-4 PST
Fri: 9-2 PST

Thanks
-Christina Phillis
IMF
Web Editor

Hello,

My sister has been diagnosed last year with MM and she's still very young, 38. She's reacting well to the treatment. I'm pregnant, and at the hospital they propose me to give my umbilical cord blood after the birth. I wonder if that could help my sister in her treatment? Can you use umbilical cord blood to treat Multiple Myeloma?

Regards,

Johanna

my husband was diagnosed on Sep. 28th-29th 2010, in the ER. He was 40years old,and very ill when we went to the ER,they said a few more days he would have died!
He had 3months of treatment& was in remission,did 2more treatments.His DR sent him to a BMT hospital.
He had an auto transplant in April 2011& by Oct.2011 his cancer came back. Jan. 2012 he started new chemo for 2months,switched to another chemo for 4months,was in remission,he did velcade for 8treatments.
Now his cancer is back again.The treaments only work for a while& the MM comes back.
His DR is starting Kyprolis on Tuesday. He has a very aggressive form of MM,he wants to do a Allogeneic Stem Cell Transplant.His DR is a great guy but he is saying with out the allo stem cell transplant there isnt many options left for my husband.He isn't pushing us, its my husbands choice,he is leaning toward NO!
We are very leery of this because its just not done often. There really are not any stats on it.
Has anyone had an allo stem cell transplant? Can anyone give us stats on this?

Please call the IMF Hotline:
800-452-2873
M-Th: 9-4 PST
Fri: 9-2 PST

Thanks!

Dear Sir/Madam,

Recently my father has been diagnosed as MM. The symptoms are like MM. We are in Mongolia and want to find out where we can do treatment for my father. His arm was broken then his shoulder and now he has got pain on the back. MRI reported as MM. But blood tests are being done now. They say MM is treated in Isreal and N. Korea well. Is it true can you please give some advice?

Thanks!

Anat M.

To contact the hotline directly, please call 800.452.CURE (2873) or email at hotline@myeloma.org.

Hi,
I did a stem cell transplant about 60 days ago and just got the results of a bone marrow biopsy from a week ago. The biopsy showed that I still have cancer cells in my marrow; 5-10%. Apparently the transplant didn't work. I'm trying to understand why and what this means. Please advise.
thanks

i as diagnosed w/ MM in nov. 2012. i'm currently on RVD treatments. my question is regarding information that turned up on FISH test...deletion of 17p, amplification of 1q, trisomy 9 and monosomy 13. I would like your assistance interpreting these results. I understand that monosomy 13 results in poor prognosis.
thanks

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Hallo, mein Name ist Dascha, ich bin 17 Jahre alt, Ich lebe in Russland in St. Petersburg. Mein Gro�vater ist krank f�r eine lange Zeit mit multiplem Myelom. Er ist oft im Krankenhaus, weil der Chemotherapie Kurse. ihn vor der Krankheit hatte ein schwaches Herz, und jetzt Probleme mit Blut. Er f�hlt sich schreckliche Schmerzen in den Beinen, fast nicht gehen. K�rzlich Nacht, als er sehr krank wurde, wurde er in die Intensivstation aufgenommen. Bitte sagen Sie mir, wie die Dinge, die Krankheit zu entwickeln? Wie komme ich nach meinem Gro�vater zu leben? Ich frage aber Sie Neuqu�n.


My husband and I are considering a move to Costa Rica and wanted to know if there are any doctors in that country who would be familiar with Multiple Myeloma. My husband has been diagnosed with this 6 years ago, had a tandum stem cell and so far he is in remission. We just need a doctor in the country who would know about this. R

can you help me in finding a helping hand for myeloma treatment in india

Are you an indian diagnosed with MM? My father too was diagnosed with MM last month.Can you pls mail me at surbhijain93@gmail.com. i reallywould like to now about your treatment and if you went stem cell transplant. thnx

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