I was recently diagnosed with this rare form of lymphoma. I was originally misdiagnosed with Hodgkins. This form of cancer is hard to deal with for me because of the lack of numbers associated with it. When I was told Hodgkins I saw %90 survival rates and 40 year remissions. With this I'm just left in the dark and hpping for the best. I am fortunate to be close to NIH who have taken me in to a clinical trial. Hopefully my case along with the others will start to shed some light into this grey zone.
Diagnosed Feb 8 2011 Grey Zone Lymphoma
Just started first round of EPOCH March 12 2011
Hi Cat 911. I just did a brief google search and from what I see treatment and prognosis seem to be about the same as for Hodgkin's. One source I found gave cure rates of 50-90% depending on the exact sub-type of this cancer (DLBCL that looks like what other lymphoma?).
Well, I am sure others will know more on this subject than I so I will leave it at that . Good luck.
Dont worry about tomorrow, you will be Ok. Stats for GZL are similar to DLBCL. We have had people with GZL before, 2 from memory and if I find some time I will search for them. Joepet found one recently so it should be too hard. Stick around anyway your words here will help others in the future, mind you only if you feel up to it.
Diffuse Large B cell Lymphoma
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission reconfirmed 1st October 2008
Remission reconfirmed 17th June 2009
Remission reconfirmed 7th June 2010
Remission reconfirmed 6th July 2011
NED on the 2/01/2013
No more scheduled visits to the Prof http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget rule Number 1
Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.
I may not have gone where I intended to go, but I think I have ended up where I needed to be.
Hi Cat 911,
I am a Grey Zone survivor for 3 years now.. They treated me with MACOPB (also known as The Kitchen Sink).. it was a treatment every week for 12 weeks.. They followed up with 17 radiation treatments..
It's beatable.. There are several of us on FaceBook that are Grey Zone surviors and we are all freinds... We would love to have you.. It is a great place to get support and meet the other famillies.. just do a FaceBook search for Scott Bjerke..
Diagnosed with Grey Zone Lymphoma March 2008
Treatment: MACOPB and Radiation
Clean for 3 years. Praise God..
Age 51 (49 at diagnosis)
Grey Zone Lymphoma
Stage 2B located in the chest
12 weeks of MACOP
Finished Chemo June 2008
17 radiation treatments in July 2008
last scan Feb. 2010
I am also a GZL survivor and had my 1yr remission anniversary last month. I actually had my pathology sent to the NIH for analysis and considered doing the EPOCH-R trial there, but decided to go with the standard R-CHOP instead (6 rounds). I'm currently in complete remission and the mass I had in my stomach, which was originally approx. 10 cms, is now benign tissue of about 3 cms.
Hi Cat 911,
Glad to hear you're not planning to panic! I have a different , but rare type, of lymphoma which also had very little written about survival rates etc....I worked myself into a frenzy only to have my onc. tell me is was curable...although at a lower rate than something like Hodgkin's. Not that there aren't hoops to jump through....
Hang in there-there are so many great people here that understand. Are you a Lawson? I'm a Lawson too (by marriage).