U.S. Clinical Trials
Hi everyone, if you are in need of a search tool for seeking a clinical trial in the U.S., the following are worth your time:
http://clinicaltrials.gov/ (this one is actually a worldwide database)
Good luck and good health to all,
Last edited by Kermica; 01-08-2012 at 02:32 PM.
When the world says, "Give up," Hope whispers, "Try it one more time."
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
Thanks Kermica. I wish I'd had this from the start when we started looking.
PS to anyone from what I gather, any U.S. trial at least I have heard is supposed to be registered at clinicaltrials.gov, but it is poorly designed - prepare for what may be a labor-intensive effort - !
Does old clinical trials matter here? I was in Dr. kaplan's clinical trials with the Linear Accelerator for Hodgkins at Stanford University in 1970 when I was 21. I was stage 1A. I am now 63, RCA opening stented in 2005 (found "accidentally") and Aortic Valve Replacement in April 2011 at USC with Dr. Starnes, Surgeon.
Have never met anyone this far out from treatment, even online, yet. I am VERY FAR OUT from treatment, most get my symptoms 20-25 yrs earlier.... Am 42 years out now. Michelle
Originally Posted by Michellemar
This thread is for current trials for the benefit of those among us who may need the help Its alright no harm done with your post.
Last edited by ChemoMan; 10-29-2012 at 10:56 AM.
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 AND DECLARED CURED on the 2/01/2013
No more scheduled visits to the Prof
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.
For those dealing with leukemia or lymphoma, The Leukemia and Lymphoma Society has a *free* clinical trial help service. They will provide you with a personalized listing of clinical trials specific to your situation. Could save a lot of time and aggravation!
Researcher, advocate, and caregiver to my son, age 24
Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin, July, 2016
Studies show young age (<40) is the great equalizer between ALK-negative and ALK-positive, with ALK neg at similar outcomes as positive when adjusting for age
Third round of E-CHOP completed Sept 2016; PET scan NED Sept 2016!
Sixth and final round of E-CHOP completed Nov 2016
Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
Continued to live alone and work two jobs through chemo!
PET scan NED, Dec 2016!
Second opinion at Seattle Cancer Care Alliance and Dr. Shustov: Active Observation, no auto stem cell at this time