| | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | I will begin a clinical trial today at Johns Hopkins; it is a deescalation study/my tumor will get the same amount of radiation but the surrounding tissue will get less. Purpose is to decrease negative effects of radiation. I feel a little nervous (will the decrease in radiation not get all of the cancer cells lurking there) but am hopeful I will have a good outcome. Has anyone else had experience with a clinical trial?
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Best of luck with your treatments. Im sorry but I have not been in a clinical trial. The one you are in sounds like it is a winner. Radiation will be targeted at your tumor so dont worry about it not being effective. Its the scatter radiation that we can do without. Thanks for helping in the trial. There are a few people here who have participated in a trial, hope they will answer your post.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Thanks, Christine. You have been through a lot and you really inspire me. Any difference between the quick reply and the reply?
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thanks. You can get thru this. It will be difficult and at times you may want to quit, but you must go thru this to be healthy again. Thank you for doing the trial, it will help patients in the future to hopefully avoid so many after effects.
I always type in the box without hitting either one.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2010 Posts: 111 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2010 Posts: 111 | If I were going to do it anywhere I would want to do it somewhere like Hopkins or Anderson. At least you know they know what they're doing!
Best of luck
my mom, age 59.
12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
| | | | | Joined: Dec 2009 Posts: 17 Member | | Member
Joined: Dec 2009 Posts: 17 | Sounds like a great choice in clinical trials at a excellent institution with an experienced treatment team. Also, thanks for participating in a clinical trial. Not enough people know about the unique opportunities presented in clinical trials. Let us know how things go during your treatment.
Linda
Hx of stage IV non-oral cancer tx with radiation, chemo & surgery in 2005. Currently a research nurse with National Institutes of Health working on a clinical trial using gene therapy for radiation-induced xerostomia. [email protected]
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