CancerCompass message board discussion started by Jugumo on 3/5/2007 http://www.cancercompass.com/message-board/message/all,10100,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am a 52 yr. old female recently diagnoses with T-PLL.  Waiting treatment until symptoms appear or WBC's increase.  Very hard to find information on T-PLL.  Wondering if anyone would be willing to share their story. Jugumo Mon, 05 Mar 2007 00:00:00 GMT There are several Web sites for this, I learned about t-cell when learning about b-cell for my Dad. If you need help I can give you some thoughts on where to go, it will be OK, knowledge is power and remember that.  There is a lot out there for you, more than there was for my Dad, so let me know. I'm at --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. take care. Darlinggsx Mon, 19 Mar 2007 00:00:00 GMT my wife has t-pll leukemia being treated at m.d.anderson houston texas.she was diognosed in 2005. getting ready for transplant. John Flash Sat, 19 May 2007 00:00:00 GMT i was first diagnosed in may 2005 with tpll. I had a 16 weeks course of campath, then a bone marrow transplant in feb 2006. Just found out that  tpll has come back. Elliotsus Mon, 11 Jun 2007 00:00:00 GMT  On 3/5/2007 Jugumo wrote:I am a 52 yr. old female recently diagnoses with T-PLL.  Waiting treatment until symptoms appear or WBC's increase.  Very hard to find information on T-PLL.  Wondering if anyone would be willing to share their story.I was 53 when dx'd with T-PLL.  Went though 3 months of Campath treatments then had to quit due to low blood counts.  Am currently in remission but not without several problems.  I was hospitalized in Feb with a Pulmonary Embolism then 2 months later had my gallbladder removed then 2 weeks later back in hospital with infections and pnuemonia then a week later my spleen ruputured with additional blood clots so that was removed also.  I am certain it is all related to the chemo treatments.  I have not had the transplant yet and wont consider it until I come out of remission.  I don't know of alot of people that have what we do but the longest survivor I have heard of is going on 5+ years.  He has a journal of his treatments on line.  Google Dennis Prytz and you should find him or I think he is on the lls web site too.  Reebs Tue, 07 Aug 2007 00:00:00 GMT My father was diagnosed today with t-pll and I am hoping to find out more from those of you currently battling this disease. My dad just turned 70 in June and he hasn't had any health problems in the past. The leukemia was discovered after routine blood tests revealed his white blood cell count was elevated. We just got the news today and we're all just scrambling to find information. He received his first dose of campath today. The doctor is optimistic about his treatment and that he will be able to achieve some sort of remission. She also spoke about the bone marrow transplant that some of you have mentioned. I wasn't there for any of this mind you so I'm just passing along what I was told. If he doesn't have a sibling available to donate can one of us, his kids, donate the marrow? Please respond and tell me about your experiences and what advice you have. We're all very positive right now and hoping that we can continue to enjoy my wonderful dad for many years to come. jlineson Thu, 09 Aug 2007 00:00:00 GMT  On 6/11/2007 Elliotsus wrote:i was first diagnosed in may 2005 with tpll. I had a 16 weeks course of campath, then a bone marrow transplant in feb 2006. Just found out that  tpll has come back.How are you doing? Reebs Wed, 22 Aug 2007 00:00:00 GMT Another web site to read about Dennis is caringbridge.org/in/dpyritz/history Reebs Tue, 18 Sep 2007 00:00:00 GMT Hi, sorry to hear about your relapse.  I am told that if you have had an autologous (own cells) transplant you can still have an allogeneic (donor) after that (if you relapse).My husband was diagnosed in Dec 06 with TPLL and had fully matched unrelated donor (PBSC)transplant in June 07. Hope you are doing ok, try to keep your mind very strong and get as much info as you can.  Its hard not to totally freak out when hearing the word relapse esp after all you've been through.   Elle on b Sat, 01 Mar 2008 00:00:00 GMT  On 3/1/2008 Elle on b wrote:Hi, sorry to hear about your relapse.  I am told that if you have had an autologous (own cells) transplant you can still have an allogeneic (donor) after that (if you relapse).My husband was diagnosed in Dec 06 with TPLL and had fully matched unrelated donor (PBSC)transplant in June 07. Hope you are doing ok, try to keep your mind very strong and get as much info as you can.  Its hard not to totally freak out when hearing the word relapse esp after all you've been through.  Hi!My father was diagnosed a month later than your husband and is now facing a allogenic transplant. I am so afraid of what to expect. My father is only 62 and so sporty and in good shape. He has done 12 weeks of Campath with great results.I would like to know how your husband felt during the transplant and even of course how he is feeling now./Thanks  alma76 Tue, 25 Mar 2008 00:00:00 GMT I am 60 and am 78 months out from diagnosis after a Campath induced remission in  '02, relapse and remission in '04, followed by a non-myeloablative (mini-) allogeneic stem cell transplant in '04 also.  There is very little literature because this is a rare disease and not many peoiple are working on it, plus it is hard to compile data with such few subjects (maybe 125-150 US new cases per year).  There was a scattering of studies out in '02 - '03 highlighting success with Campath.  Campath remains the treatment of choice, sometimes paired with drugs in the Pentostatin family. The disease, as far as I know, is still considered uncurable.  But 78 months months is certainly simething to aim for.  I have been blessed. utriumph Wed, 21 May 2008 00:00:00 GMT My husband was diagnosed with T-PLL in December 2007. Watch and wait up to now. Last week treated for pneumonia and had to have fluid removed from outside of the left lung. Dr. is now talking about possibility of starting treatment. Spleen is slightly enlarged, some lymph node involvement. Not sure where to turn and want to hear from others about what to expect. He has mentioned Campath along with Pentostatin(sp?) and Flurodobine (sp?) HangingIn Sun, 21 Sep 2008 00:00:00 GMT