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gmcraft Offline OP
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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.
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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
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gmcraft Offline OP
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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.
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"OCF Canuck"
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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
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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#Post163644

09/09 - 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!
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"OCF Canuck"
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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
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gmcraft Offline OP
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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
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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
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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#Post163644

09/09 - 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
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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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