| | Joined: Mar 2002 Posts: 4,916 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 57 | There is a swallowing trial going on at several institutions, and they primary investigators have asked OCF if we have anyone who might be interested in participating. Here is the information and contacts. Boston University Medical center is currently conducting a multi-site (VA Boston Healthcare, Beth Isreal Deconess Medical Center, Lahey Clinic, Brigham and Women�s Hospital, Dana Farber Cancer Institute, New York University School of Medicine, Lenox Hill Hospital, Beth Isreal Hospital New York, Northwestern University, University of Wisconsin, Greater Baltimore Medical Center, and J. Phillip Citta Regional Cancer Center) NIH/NCI funded clinical trial entitled, �Efficacy of Electrical Stimulation for Dysphagia in Head and Neck Cancer Patients.� We are currently enrolling Head/Neck cancer survivors at least 3 months post-radiation treatment suffering from swallowing problems (known as dysphagia). Interested people should contact me for more information, or visit our trial website estimclinicaltrial.com. The clinical trial is 4 months long and includes a home-program for a new approach to therapy for swallowing problems. Nicole Johnson Regional Recruitment Coordinator Boston University Medical Center Department of Otolaryngology 820 Harrison Avenue, FGH Boston, MA 02118 p. 617.414.1761 f. 617.638.7965 e. [email protected]
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Brian
Thanks for posting that. This clinical trial is much more open than the other E-stim trials run by NIH/NCI since it does not list any restrictions like having more than half of your tongue removed as a disqualifier. Unfortunately, the one disqualifier is any prior E=stim, and since I've already had over 30 of those as well as done all of the home exercises in this trial, I am disqualified.
This is a great opportunity to get E-stim and get paid unlike how I did it, paying them. It is a very promising technique as long as you did not have more than one series of radiation and Chemo.
So I urge any OCF members who qualify to jump on this chance as I know from personal experience just how important swallowing is.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Mar 2002 Posts: 4,916 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 57 | Bringing this back to the active topics
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Mar 2002 Posts: 4,916 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 57 | A couple of people have mentioned that the link did not work properly. Here is the comment from those taking the survey.
Please instruct any interested respondents to call us to see if they qualify. Our toll-free number is 1-888-620-2301 and our interviewers are in the office from 8:30am-5pm. When calling in, please have them refer to job # 350 so that they're transferred to the proper interviewer.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Brian
Simple mix up: you meant to post this in the Introduce yourself forum on the PMR survey. The link in that post indeed does not work.
I'm not aware of any problem with the links to this swallowing trial. Since I am one of the ones who notified you about the survey link not working, I was going to cut and paste your post to the appropriate thread in the right forum but it's locked down. The swallowing trial is a great opportunity as well as the survey. Thanks for offering them to us.
Just a note to OCF members, the survey is only for those with ACTIVE disease as I verified with PMR a few minutes ago during the intial questionaire. If you are in remission, or NED, then you will not qualify. I have never been so happy in my life to be disqualified from making money.
Charm
Charm
Last edited by Charm2017; 10-25-2010 02:25 PM. Reason: update on call
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | I just spoke to Nicole Johnson regarding the swallowing study. This is something that could greatly benefit anyone who suffers from difficulties in swallowing. There are several locations so its fairly easy to get to one of their places in the Northeast US. You do not need to go anywhere daily or even weekly. It can only help you, no drawbacks to this. The worst outcome would be if your swallowing remained the same. I was disappointed to hear that I was the first person she had spoke to who was referred by OCF. I cant wait to see an improvement in my swallowing capabilities. So anybody who is in the northeast and complains about problems swallowing, give this a try, it sure cant hurt! Here is the link to their website. http://estimclinicaltrial.com/index.php?pr=Home_Page
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 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 | Another site was just added to the above locations. Toms River NJ will also be participating in the study.
Hope anyone who struggles with swallowing takes advantage of this trial.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Just curious Christine. What site are you going to and how often and for how long? Are any of these in the Phila area?
I doubt I qualify for this as I can swallow, it's everything must be cut in tiny pieces making eating a very slooooow process. I'm also a total laryngectomee so my issue might be more easily resolved with a dilation.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | 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 | Hey you never know unless you call. No Phila locations which surprised me. There is a Baltimore hospital. Im probably going to go to the NY location. Whichever place you choose to go, thats the place you have to always go to. It would be wonderful to have someone from OCF to go along with me.
Basically what happens is that you must go for 3 visits to be evaluated, do a barium swallow test and to learn the swallowing exercises. Then its up to you to do it daily and fill out the logs. At the end you need to go back again, I think its only 1 visit. Its a total of 4 months for the trial.
They are looking for another 150 people to get involved. Its a tremendous opportunity for anyone who has swallowing problems to get some help for free. They even pay you $40 when you need to go to the hospital for a visit. That should cover gas and tolls.
I dont know if I will qualify yet either. One thing Nicole did tell me was that your swallowing muscles must be intact. With the surgeries Ive had I dont know if they will accept me. I figured its up to them to tell me no. Im always one who never gives up, I keep looking to get better even if its just a slim chance I will try it.
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 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | This is interesting because I am scheduled Nov. 15 to go to Vanderbilt University Medical Center, Nashville, TN for a swallow study because of the difficulty I have in swallowing. I read the requirements to be accepted for the swallowing trial Brian posted, and it said, in order to qualify, "You have not received vital stim or any other e-stim therapy to the head & neck," which I have had in the past locally (Vital Stim therapy), so I assume I wouldn't be accepted in that study, even if I wanted to try to get in it. But, Christine and others who have been accepted, please keep us informed on the progress you make and what all they do to help your swallowing. When I get back from Vanderbilt, I'll post what they did/tested to me and the results. Thanks.
julieann
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | |
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