| | 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 | Stable is awesome!!!! 
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: 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 | Hi everybody, the news from my CT scan last Wednesday is pretty good. The radiologist told me that she sees no progression, and slight (5%) shrinkage in a few spots, of my 'solid tumours'.
Yay!
The slight fly in the ointment is that they can see fluid accumulation that is new and they can't really explain, but is probably an inflammatory reaction by my body to, well, cancer perhaps? This does explain the return of some pleural pain for the past two weeks or so, which I think is getting better now.
This was all based on a very quick meeting with the radiologist on last Wednesday afternoon and is not the 'official' word from the team, but she assured me it would be the same outcome.
She said as good results go she gives this a 7 out of 10, and they will recommend continuing the trial.
During all of this I came down with a cold last Monday evening and then travelled to Stornoway, Isle of Lewis, Outer Hebrides, Scotland with my wife and a friend on Thursday (so, the day after I had the above news), but this cold has moved deep into my chest to the point I struggled to muster enough air to blow my nose and I went in to A&E last night and they gave me some antibiotics in case there's more than a typical virus going on. So at the moment I'm a coughing wheezing mess, but I think I'm on the mend. We travel back to London tomorrow evening (Monday).
Presumably I'll start Cycle 3 on Wednesday and have more news in about a month!
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | That is great news about your CT!
I'm sorry that you've got this respiratory infection, but hopefully you'll be kicking it soon!
Here's to continued progress!
xo,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | 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 | Awesome.. So happy things continue to go well... 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) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | That's great, Seth! Hope that the next cycle goes smoothly for you.
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 | Great news! Hope the cold/virus is gone soon; amazing what a number those things can do on you. Good luck with the next round of treatment on Wednesday.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Great news and best wishes you shake that cold or virus and sail through the next treatment!
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Sorry to be late to the thread Seth, but this is great news and I'm grateful that you share it with us! I am sorry to hear about the pleural fluid problem and the cold, but that pales in contrast with the good news!
Hang in and keep up the good work!
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: 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 | Hello again!
After my last update following my 12 March hospital visit we went off to the Outer Hebrides, the Isles of Lewis and Harris (home of Harris Tweed) in far north western Scotland for some wind and waves (it's true what they say about the white sand beaches and turquoise surf, but this time of year that comes with stinging horizontal drizzle, too......dramatic and beautiful, but not for the faint of heart).
Unfortunately my cold moved deep into my chest in a big way and on Saturday 15 March I realised I might be in some trouble when I struggled to move enough air to blow my nose. I phoned the Drug Development Unit in Sutton and spoke with the Duty Nurse who reviewed my trial protocols and approved me to go get some antibiotics aside from one. That evening I marched into the A&E at the local NHS hospital in Stornoway and, after sitting for a time watching the rugby with a string of injured Scottish teenage sporty types, saw a bright young GP. The Dr listened to my story and my chest, googled GDC-0980 and handed me a box of Amoxicillin, all no charge.
One week ago, Wednesday, 19 March I visited the DDU as normal and was told that this trial drug increases ones risk of infection about 4 fold. The Dr (yet another new one!) said it was very likely I did in fact have a biological chest infection and that the Amoxicillin was the right thing to have done, but also said I should take a one-week pause from the trial drug to let the antibiotic do its work. He also had a basic chest x-ray done which showed nothing material (i.e. no pneumonia!).
As of yesterday, 26 March, my chest cold was greatly improved and the pleurisy pain had in fact also subsided quite a lot, though I do still have a nagging productive cough and night wheeze (I had the night wheeze before ever starting the trial or having this cold, so that may be something altogether different, including possibly in part related to radiation scarring, but the blue puffer does relieve this when it keeps me awake). I went to the DDU as normal, 4-hours fasted, gave blood and had a quick exam plus an ECG and they cleared me to resume the trial, which I did. I've also gained back a few pounds in the week off.
So! Back on track after a one-week break.
My parents are visiting from California, and this week we've sent them up to do their own exploration of Scotland. I'll train up and join them in Pitlochry this Friday, getting them settled in to Edinburgh on Sunday evening before I return to London that night.
My wife and I are starting to plan a trip that may take the form of motorcycling to remote northern France in early July to visit a friend who will be minding the family farm while her parents are away on a trip.
Zoom zoom!
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Wow, Seth!
I'm so happy that you got the correct treatment for your chest infection. I'm also so happy to hear that you are living life to the fullest these days. Keep up the good work!
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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