Uzun süreli remisyon

Üyesi olduğum myeloma mail grubunda (Amerika'da bu grup) ilginç bir şey oldu. Dan Stephenson isimli bir MM hastası, 10 yıl civarında bir süredir remisyonda olduğu için, doktorunun artık muhtemelen iyileştiğini söylediğini yazdı. Doktoru on yıldır remisyonda olan başka bir MM hastası duymadığını da söylemiş. Bu haber, grupta moral ve sevinç rüzgarının esmesine neden oldu.

Aslında bu konu Temmuz ayında da konuşulmuştu ve gruba gelen mailler ile (İngiltereden, Japonya'dan gelen mailler de var) 16, 14,12,11 yıldır remisyonda olan MM hastaları olduğu ortaya çıkmıştı.

Bu mail grubundan öğrendiğim kadarıyla, yeni (adını hiç duymadığım) ilaçlar gönüllü hastalar üzerinde denenmekte. Bazılarının tedavi amaçlı olduğu da söyleniyor ama henüz tedavi eden bir ilaç yok ortada. Amerika'da kullanılan ilaçların biraz daha çeşitli olduğunu görüyorum, fakat önemli ilaçların hepsi burada da kullanılmakta. Örneğin Revlimid (Renalidomid) , Talidomid'in bir türevi. Yan etkilerinin daha az olduğu söyleniyor. Yakın zamana kadar Türkiye'de yoktu. Geçen ay doktorum bir şirketin bu ilacı ithal etmeye başladığını söyledi ama emin değildi.

Bu konularda bilgi sahibi olanlar varsa lütfen bu yazıya yorum yazsınlar.

Ben de uzun süredir remisyonda olan MM hastalarından "... yıl oldu, hala burdayım" türünden yorumlar yazmasını rica ediyorum. Hep kötü şeylerden bahsetmeyelim.

Aşağıda mail metinlerini (İngilizce) bulacaksınız.
Sağlıcakla kalın.

----------------------------------------------------------------------Date: Thu, 18 Dec 2008 23:07:58 -0600From: Bob and Val <prather64@VERIZON.NET>Subject: Re: Good NewsHey Dan! Congratulations! I'm sure we all want to hear what your treatmenthas been! You are an inspiration to everyone.Val in Texas----- Original Message -----From: "Susan Step" <Srstep@AOL.COM>To: <MYELOMA@LISTSERV.ACOR.ORG>Sent: Thursday, December 18, 2008 10:27 PMSubject: [MM] Good News>

I just came back from Arkansas and hear my doctor utter something I never> thought would be said. He said I was probably cured. He said he never has heard of someone being in remission as long as I have, almost 10 years, coming out of remission and relapsing. yeah yeah. Yes there is a cure. Merry> Christmas> to you all. Dan Stephenson.

> **************One site keeps you connected to all your email: AOL Mail,> Gmail, and Yahoo Mail. Try it now.> (http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom00000025)>> [To Join or Leave the list, go to => http://www.acor.org/myeloma.html ]> [Web Archives => http://listserv.acor.org/archives/myeloma.html ]> [International Myeloma Foundation => http://www.myeloma.org ]--------------------------------------------------------------------------------



------------------------------Date: Wed, 23 Jul 2008 10:20:27 +0000From: Debra Stern <pha516@ATT.NET>Subject: 16 years and still counting

I also have been very lucky - diagnosed 12 years ago in 1996 . No treatment to date except Aredia. I pray every day that it stays that way. I just have no time for myeloma!!!!!!!Debbie

------------------------------Date: Wed, 23 Jul 2008 06:31:24 -0400From: Priscilla Green Shaw <peashaw@COMCAST.NET>Subject: Re: 16 years and still counting. . . . and I was diagnosed 14 years ago, in 1994, at age 39, and spentapproximately 10 of those years (following a stem cell transplant in 1995)in complete remission taking nothing but Aredia / Zometa.------------------------------Date: Wed, 23 Jul 2008 12:11:11 +0100From: "Alison, London UK" <londonalison@GOOGLEMAIL.COM>Subject: Re: 16 years and still counting

I've noticed that quite a lot of the long time survivors seem to be onAredia/Zometa.As far as I know this medication is to prevent bone damage, but I justwondered whether it has some other therapeutic value for Myeloma over andabove that?On Wed, Jul 23, 2008 at 11:31 AM, Priscilla Green Shaw <peashaw@comcast.net>wrote:>

. . . . and I was diagnosed 14 years ago, in 1994, at age 39, and spent approximately 10 of those years (following a stem cell transplant in 1995)> in complete remission taking nothing but Aredia / Zometa.--Alison, London UK

------------------------------Date: Wed, 23 Jul 2008 21:06:09 +0900From: Susumu Ata <s406k307@KA1.KOALANET.NE.JP>Subject: Re: 16 years and still counting> I've noticed that quite a lot of the long time survivors seem to be on> Aredia/Zometa.>>

As far as I know this medication is to prevent bone damage, but I just wondered whether it has some other therapeutic value for Myeloma over and above that? Contrary to many long time survivors on Aredia/Zometa (only),my 10 years and 1 month MM wife has never been on Aredia/Zometaand or other bisphosphonates. Her hem doc declined our request forAredia based on the above normal bone density and probable riskto kidney. She has never got bone involved.Just for your info.Susumu, Japancaregiver to lambda light chain wife for 10 years and 1 month, who isin full remission

------------------------------Date: Wed, 23 Jul 2008 08:12:52 -0500From: Donna Finney <donnafinney@COMCAST.NET>Subject: Re: 16 years and still countingSubject: Re: 11 years and still counting.

. . . and I was diagnosed 11 years ago, in 1997, at age 54, and spentalmost all of those intervening years on one type of chemo then another(stem cell transplant in 1997) all chemo's worked for awhile--now I am on Zometa every three months. Wait for the next elevation innumbers--start the next round of whatever is new, next clinical trial ordraw my sword and slay the beast.Never thought there were so many of us .. wow we are gaining on it I love you all and know we are going to have a cure soon.

donna in Nashville TN