| | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | OP  "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Some good news! Based on preliminary observations and a 30-second phone call with the radiologist, she said she sees a 'slight' 5-10% tumour shrinkage in my latest CT scan. I'll take that!
I've not yet heard any more-formal comment from any of the research team, but may ask for this today.
GDC-0980 appears to be working for me, and with very minor, if any, side effects!
Will of course keep you posted.
Happy Valentines Day everybody!
-Seth
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
| | | | | 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 |
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: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 |
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) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 |
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: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,292 Likes: 1 |
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Update! 8 March 2014. So, those keeping score will know I had a PET scan last Wednesday and will know that the PET scans are used for the drug trial and are not intended to be 'diagnostic' for me (not intended to measure progress or effectiveness of the trial drug, per se). However, the medical staff have been very cool and willing to share with me their observations of these 'other' tests and I had a call from the Lead Fellow yesterday to tell me that, being careful to point out that they were comparing 'PET scan to PET scan' (because to try to compare a PET scan to a CT scan would be pointless as they reveal very different things) they feel I continue to be 'stable', meaning nothing has changed much since the prior PET scan; no return of the pleural effusion (water pocket) that was visible before I started the trial drug but has gone away since, and no new cancer lesions, but at the same time, no notable decrease, either. All along it has been true that one possible 'good' outcome of this drug might be simply that it arrested the progression of my cancer. In any case, I'll take 'stable' over many other possibilities!
I've had a return of some pleural pain this past week, but this now seems to have been caused my the wrong kind of physical activity and is settling down. While annoying, it's not unprecedented, and it's tolerable, and does respond to ibuprofen.
I will have a contrast-enhanced CT scan next week Wednesday and that is intended to be diagnostic, where they will actually try to measure the sizes of tumours etc. and get a quantifiable sense of changes.
ONWARD THROUGH THE FOG!
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
| | | | | 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 for the update! Glad to hear things are going so well. Thank you for sharing the trial info.
Best wishes with everything you are going thru. Hope your scan next week turns out with good news.
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Seth! it's good to be stable. That is what I tell people when they ask me how John is doing.
John occasionally has pleural pain too. There is one lesion in his pleura. But since he is a potter, it can also be caused by his poor posture when potting. It is really hard to tease out. In any case, he does back exercises given to him by the physiotherapist and takes a couple of Tylenol when it is bad. Like you, so far it seems to work.
He is going in for his fourth dose next week. That will be followed by CT scan the next day and a lung biopsy at the end of the week.
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: Nov 2013 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 34 | Hi Seth, thanks for the update.I await the outcome of your scans as I would my own. Live long and prosper buddy.
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.
| | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Seth-
Thanks for the update! Great news. I love "stable". Hang in there and keep us posted.
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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