Chuck --

Just wanted to thank you again for the wealth of information and inspiration you have provided to us with this disease.  I can't begin to tell you how much your "old" postings helped me through the early dark days of diagnosis -- they made decisions about treatments so much easier.

Gratefully,

Cranky

Chuck --

When I was first diagnosed, docs immediately proposed double R-CHOP followed by auto transplant.  Because of the article you had found, I was able to proceed with confidence.  Although I achieved remission after a couple of rounds of chemo, I relapsed within 2 months of stopping while I was undergoing harvest conditioning.  Won't go into the many complications I then faced, but much to doc's surprise I again achieved remission on just prednisone.  Had mini-MUD-allo (very easy) 6 months later in 12/08.  Docs at my cancer center are finding it is having about same success rate (if not better) than auto -- but of course it does have the risk of GvHD.  It's 4+months (17 months since first symptoms) and so far, so good (fingers crossed,knock on wood).

You are right, though, about the difficulty of finding info -- both because of our disease's rareness and the fact that info is often buried in papers and studies on several kinds of NHL.  It takes a lot of digging and reading of technical stuff. There is more recent info (such as success rates with mini-allo), but it is definitely difficult to access since the main topic of the research paper is rarely AILT itself. That's why it's so important for folks with this diagnosis to seek treatment at major cancer centers, where docs have actually seen and treated it and other peripheral T-cell lymphomas before. 

Keep up the good work !

Cranky

Hey there, Joe --

Docs had me on prednisone as part of some new chemo regimen (starting 10 months ago) when I relapsed 2 months after ending R-CHOP (my docs have a gut feeling that some T-cell lymphomas may have a "hidden" B-cell factor that is triggering the T-cells, so they use some B-cell therapies,too). I had also been on some prednisone for a couple of months when I first became ill and it was thought I had allergic vasculitis from a bug bite. They ended the new chemo after one round (that's why I can't remember the name of it) because of tanking counts, but itching came back immediately, so they kept me on the prednisone component of the chemo (100mg!).  They didn't remotely think it would lead to remission and they remain baffled (although I have seen some reports of folks achieving long-term remissions with AILT on prednisone or cyclosporin alone).  However, the prednisone has done its damage by giving me drug-induced diabetes, a 35 pound weight gain,susceptibility to a massive MRSA infection,muscle weakening and bone thinning.  Generally not something you want to stay on long-term if there is an alternative. All the docs know is that my body came out on the other side of the two month battle with MRSA in remission. That's why I had a mini-transplant in December. Docs were convinced it would just be a matter of "when" not "if" I would eventually relapse or get a serious infection (which, of course, could still happen).Got prednisone down to 30mg a few weeks ago and then something started going on with my skin (but biopsies,scans and BMB were normal).  Couldn't halt progression of skin issue until back up to 60mg.  Am currently at 50mg and holding steady until the next reduction in a couple of weeks.

It is hard to have any cancer, but T-cell presents its own set of challenges because almost every case is different and there really are no tried and true treatments.Statistics are based upon such small samplings that they range from bleak to meaningless.  My docs are sort of taking "the kitchen sink" approach -- they're throwing everything in their arsenal at it and seeing what works.  Some of the more effective T-cell treatments are too toxic for me, which is also frustrating.

Sounds like you may face a challenge in getting a definitive diagnosis.  Looks like leukemia cells but is lymphoma without lymph node involvement? Bone marrow involvement and fatigue? Your counts are not good. What does doc expect to happen next and when? You just might want to give another look at getting a PET/CT scan (I wouldn't bother with a plain CT since nothing is showing on ultrasound) or at least a second opinion. I have a very aggressive lymphoma -- yours may or not be or it might be leukemia .  Getting an accurate diagnosis early can make all the difference in the world.  It took the pros at Massachusetts General and Dana-Farber ,who had at least seen and treated AILT before , to diagnose me. I had no nodes bigger than 1cm, slightly enlarged spleen, negative BMB, blood counts were fine except for lymphocytes, 3 negative lymph node biopsies, but PET scan lit up "like a Christmas tree". I did present clinically like AILT -- fever, rash, itching.... All auto-immune and infectious causes had already been eliminated, so they did 4th node biopsy and checked LDH -- BINGO !!

As rare as our conditions may be, there is no shortage of wonderful, supportive people here to provide us support and helpful advice,

Cranky

Hi ChuckLB,

My name is Patrick and I am new to the posting, but not to the old site which I have gone back and forth to for the past 2 years to read and see what others diagnosed with AILT have gone thru.  I wanted to thank you and the many others who have posted great information and their stories, they have all been informative and inspirational to me.

At 35 I was diagnosed with Stage IV AILT in June 2007 and began treatment July 2007. My treatments to date have been a full regimen of Hyper-CVAD, ICE, BEAM to get me ready for an Autologous Stem Cell Transplant,5 rounds of Oxaliplatin with Gemzar and currently 3 rounds of Dacogen with Valproic Acid. The reason for so many chemo regimens is that I have had short remissions of 1 and 4 months and after the Autologous stem cell transplant I developed GVHD (rare for an Auto transplant) and the lymphoma at one point had spread to my stomach. Miraculously after a few months the GVHD cleared up and after several biopsies and restaging the lymphoma in my stomach disappeared.  So for 4 months I was in remission then the AILT came back but not as aggressive and seemed to stay mostly in the neck region, but as I was completing the final restaging and bone marrow biopsies to start an Allogenic transplant it was discovered that I had developed Myelodysplastic Syndrome (MDS) and it would have to be treated first before any thought of the Allogenic transplant could be done. So now I am on the Dacogen with the Valproic Acid to treat the MDS and awaitng word on a possible new donor for the transplant or even the use of cord-blood for the transplant.

I really did not have any questions right now but just wanted to say thanks again for all the information.

Hi Chuck,

Thank you for that information on CCDRT, it will be something that I ask my doctors about on my next visit.  Again, thank you for all the great information that you have posted.

Patrick

Hey Chuck, not sure if you remember me. I posted about my dad on the old site. His cancer is back and they are trying a new treatment called: fludarabine. He was only in remission for 3 months, then the rash started coming back. They kept it at bay with prednisone all this time because his PET scans kept being clear. They finally did a biopsy of the rash and it confirmed the cancer was returning. This week his lymph nodes are swelling terribly and the doctor says we will have to start the fludarabine chemo on Monday. Have you ever heard of this treatment plan and the results?