| Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | [quote=someguyjeff]I hope everything is going well for you. I am on the beginning stages of possibly the same journey as you as I have lung mets and am on about my 4th week of Erbitux. I have been and will be 'making sure I learn from you and everyone else to make the right choices as I go along. [/quote] someguyjeff, I am sorry to hear that you are on my path. I will try to report my trial results as I get them - I will have to look up the names of my trial drugs for you and post them here - I think it is MEDI4736 in combination with Tremelimumab. My last trial was KEYTRUDA which did not help with my cancer (although that does not mean it may not work with others). I wish you the very best of luck, mate - my only real advice, unfortunately, is so terribly clich�d - try to stay strong and positive and never, ever give up!!! Let us know how you are doing!! The Hellion
SCC Base of Tongue Diagnosed 3/5/2014 T2N2C PEG Installed 3/19/2014 Chemo/Rad 3/27/2014 1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy Chemo FINISHED 5/5/2014 Rads FINISHED PEG tube removed 10/08/14 Back to work 4 Aug full time 1/19/15 - diagnosed mets to lungs 7/17/15 began Pembrolizumab clinical trial demitted October 2015 1/14/16 began Tremi-MEDI trial -This far, no further! On ne passe pas!
**update** passed away 3/26/16 RIP, you will be missed by many
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Dear Hellion.
I'm very saddened to hear of your news regarding the metastasis. I sincerely hope that this next trial brings some promising results.
You will be in my thoughts and prayers.
Love in OCF, 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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Hellion,
I'm really sad to hear the news of the spread and poor response to the trial. It sounds like you are moving forward with another option. It must be very difficult to remain strong and hopeful but that is what keeps you looking forward. Best wishes for a good trial.
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: Dec 2014 Posts: 55 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2014 Posts: 55 | You are an inspiration to keep fighting. I am sorry to hear of this latest news. I pray that the next trial has some great results. Thank you for all the information you provide as it has helped me find my balance and know there are options for myself.
Jeff - 41yrs old/previous smoker SCC buccal mucosa/jaw bone Stage 4 Nov '14 Partial Mandibulectomy with fibula flap, neck dissection Jan '15 Rads x35 Cisplatin x2 Apr '15 PET/CT concerning area Follow up MRI no mass. July '15 PET/CT 11mm nodule in right lower lobe the lung. Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules Nov '15 erbitux Mar '16 CT tumors are growing again, waiting on next step June'16 hospice had 3 Opdivo infusions trying to regain health
| | | | Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | So they finished rads to my back yesterday. This was some spot work t ease the pain I've had for several months. Things should start improving now, but because they radiated through my stomach I've felt pretty awful the last few days.
Otherwise nothing to report. I get the second infusion in two weeks so we just keep our fingers crossed and hope that this is doing the job. We have the first scan in about five weeks, I think.
Hope everyone is well!!
The Hellion
SCC Base of Tongue Diagnosed 3/5/2014 T2N2C PEG Installed 3/19/2014 Chemo/Rad 3/27/2014 1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy Chemo FINISHED 5/5/2014 Rads FINISHED PEG tube removed 10/08/14 Back to work 4 Aug full time 1/19/15 - diagnosed mets to lungs 7/17/15 began Pembrolizumab clinical trial demitted October 2015 1/14/16 began Tremi-MEDI trial -This far, no further! On ne passe pas!
**update** passed away 3/26/16 RIP, you will be missed by many
| | | | 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 | Hellion, are you nauseous? Did they give you Ondansetron? Make sure you keep up the fluid intake even if it is a small dose of radiation. Rest up now. I am cheering for you in this corner.
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 2014 Posts: 55 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2014 Posts: 55 | I am so glad you're on the new trial. I was asking my doctor about getting on one with MEDI. Please keep us updated with the symptoms and successes. I also may try Opivido as my doctor has a patient doing well with that for over 9 months. I know these are all shots at the dart board but some could be promising.
Jeff - 41yrs old/previous smoker SCC buccal mucosa/jaw bone Stage 4 Nov '14 Partial Mandibulectomy with fibula flap, neck dissection Jan '15 Rads x35 Cisplatin x2 Apr '15 PET/CT concerning area Follow up MRI no mass. July '15 PET/CT 11mm nodule in right lower lobe the lung. Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules Nov '15 erbitux Mar '16 CT tumors are growing again, waiting on next step June'16 hospice had 3 Opdivo infusions trying to regain health
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Glad to hear new treatment plan is underway. These new therapies are so promising, let this be one more positive result to add to the trials. Thanks for keeping us current. Good luck! don
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: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | donfoo, someguyjeff, Thank you for your well wishes - we are so hopeful - the entire team is just so excited. someguyjeff, this is why you have to keep hoping and fighting even on the worst days - because someone will be the last person to die from this, which means someone will be the first person cured. Where we fall in that spectrum is how we will get to the cure and either one of us, both of us or all of us could be the ones that are cured. Never, ever stop believing. Gloria, thank you for your kind thoughts. I am taking lots of anti nausea medicine but I have a dirty secret -- the unstoppable, unflappable, indefatigueable mighty, mighty Hellion has a VERY sensitive stomach. The smell of the radiation oncology center makes me queasy. That's our secret, though, I don't want my kryptonite getting around . I'm already feeling better - two mornings radiation free and I'm starting to hold down protein drinks and some solids. I whine (a lot as my eternally patient partner in life sadly knows) but I do always seem to pull through . I thank you for your concerns, though, as it means so much to me to know that this community always supports each other. A special thanks to my aforementioned partner - my fantastic wife. She drives me everywhere while I need the walker, buys me anything and everything that may help me eat, makes me as many things a she can to get me to eat and hold down food, and listens to me whine, complain and moan without ever showing the toll it takes on her. You guys, I wish I could think of some way to balance the scales but I am far too far in debt now . Thanks for listening! The Hellion
SCC Base of Tongue Diagnosed 3/5/2014 T2N2C PEG Installed 3/19/2014 Chemo/Rad 3/27/2014 1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy Chemo FINISHED 5/5/2014 Rads FINISHED PEG tube removed 10/08/14 Back to work 4 Aug full time 1/19/15 - diagnosed mets to lungs 7/17/15 began Pembrolizumab clinical trial demitted October 2015 1/14/16 began Tremi-MEDI trial -This far, no further! On ne passe pas!
**update** passed away 3/26/16 RIP, you will be missed by many
| | | | 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 dont always comment but I read every single post and have been keeping track of this thread. Wishing all the best to everyone who is fighting, struggling and helping with trials. Thank you so much for being so unselfish by coming back to post updates, good and bad. These words will be here for many, many years helping future patients and caregivers until, as The Hellion put it... someone is the last one to die from this.
Best wishes with everything! 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 | | |
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