| Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | OP Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Mary, yes, it's the same trial. We have just been told that in the second part of the study, which is what John is in, they are asking about 410 people to participate, with the possibility of more people being added. In the first part of the study, about 50 people were asked to participate. I believe the numbers are worldwide.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | Gloria- Thank you. I am happy to hear this information, particularly give the good results of the other patient you met. I hope all continues to go well, and relatively side-effect-free for your husband.
Mary
Mary Caregiver to husband, 60 Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+ Oct '12 Sub.Gland transfer Nov-Dec '12 IMRT x 33 + cisplatin x7 March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED) April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16 9/13: 33 rounds IMRT to lungs; carboplatinx7 CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC 30 rounds IMRT to left lung; treatment ended 5/29/14 Sept 2014--CT clear; December 2014 CT clear
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | OP Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Update
John had his first review today after four doses. The CT scans two weeks ago show 16% increase in tumour size! which, the doctor assured us, is very little (look at it like this: 16% increase of 1.5 cm). Besides, immunotherapy drugs work very slowly so John will continue with the treatment and there will be another review in two months. The MO, who is in charge of all phase 1 trials at the cancer centre, also mentioned that there are other drugs that John could try if this one does not work well enough. So, all things considered, I would consider it good news.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yeah - to any kind of triumph... keep on keeping on. I know it's hard. It's kind of like holding your breath indefinitely. Hoping that the next CT offers good news. hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Hi Gloria,
I just discovered this thread (I've spent most of my time in the intro section) and am delighted to hear the good news you've experienced! I hope it continues to be good and even improve!
My distant mets have all been in my liver, and that's a relatively easy organ to treat; in my case, most recently with SIRIspheres, tiny plastic beads, ~ 1/3 the thickness of a human hair, each enclosing a tiny hunk of Yttrium-90, a beta-particle emitter. There has been enormous success with this in Liver Cancer patients and it seems to work equally well on Oropharyngeal mets in the liver.
Yesterday, I had my 14th and final radiation session on a lymph node between the liver and the stomach that we knew about, but left alone while we did the SIRIsphere routine. In that time, it grew from .2 to 4 cm, but I'm confident that the radiation will have zapped it. I really won't know until May 12th when I get a CT with contrast to check. But I'm pretty sure I'll be clean then.
HOWEVER, clean is a temporary word in my world, I know that just like "Whack-a-Mole," it's going to raise its lovely head again; so it's great to learn that new treatment modalities are on hand should it show in the lungs or elsewhere that radiation cannot be used to simply Zap it away.
Best of luck to you and John,
Bart
Last edited by Bart; 03-25-2014 02:59 PM.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yeah on completion Bart you're a trooper man! Hugs,
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | OP Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Bart, congratulations on completing the SIRI spheres treatment. It is good to know about different kinds of treatment available for metastasis. We count ourselves lucky that we are at a hospital where they have an entire department for clinical trials. Good luck to you on your next round of treatment.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | Hi Gloria, Thank you for the update and hooray for good news! Bart, it was good to hear from you too; you made me laugh in my saddest hours last year with your posts--and your optimism and whack-a-mole analogy are right on. I communicate with two women by email whose dad/husband are dealing with mets. Between them, gloria, bart, stily, zenda I have heard so many different treatment approaches to what I am sure are similar to wildly differing pathologies. Mets seems almost to be its own little subset of this recurrence forum. Not sure where I am going with this, except if I were a researcher, I would be want to do something with all this valuable data. As it is, I am grateful to glean every bit I can to help me prepare questions for doctors. And of course I am happy to share our experience. I will know more in a week.
Best to all, and thanks for being here, Mary
Mary Caregiver to husband, 60 Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+ Oct '12 Sub.Gland transfer Nov-Dec '12 IMRT x 33 + cisplatin x7 March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED) April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16 9/13: 33 rounds IMRT to lungs; carboplatinx7 CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC 30 rounds IMRT to left lung; treatment ended 5/29/14 Sept 2014--CT clear; December 2014 CT clear
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Thanks for the kind words, Mary, Cheryl and Gloria!
It's great to be here, and that's even before considering any alternatives!
You all are great people, and it's a real lift to the spirit to be among you!
Thank you all!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | Hi Gloria, I am happy to hear that progression after a short time is minimal. I believe that immunotherapy would take some time and progress wouldnt be seen overnight. I think that John or I or others with distant mets didnt get this way overnight, so it would be logical that reversing it by way of the immune system would take time also. I guess my case presents as unusual. (The MO's description).I had a pet in Jan. and a follow up Ct on Feb. 28th. Some of the lymph nodes were actually smaller. I had cardiac bypass surgery in December, about 2 weeks prior to Jan. petscan. Sooooooo maybe? Last nights tumor board suggests a biopsy of the nodes and see where that goes. The problem with that is that my throat opening is only 4-5cm wide while the camera is 6cm. It now appears that we are going to do a new pet late next week or early the next and see where that goes. The frontline therapy right now is trying to find a Dna match in which to start targeted therapy. I am still looking for a clinical trial in the SW U.S. if you hear of anything. good luck to all club members
discovered a golf ball in my neck St.Paddy's day 2010. Dx stage 4a left tonsil ca may 2010 at 50 non smoker, moderate beer drinker HPV-16 pos. tosillectomy 9 weeks Cisplatin 35 rads nov.2010 PET NED 2011 2x PET NED 2012 2x PET Ned 3/13 Pet NED SEptember 2013 Pet uh-OH.questionable and anxious follow up pet, yup, its back. mets to sub clavivular and mediasteinum nodes biopsy positive scc. trying to figure out next step my imaginary friends think I am crazy.
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