| | Joined: Jan 2013 Posts: 11 Member | OP  Member
Joined: Jan 2013 Posts: 11 | My worst nightmare has become my reality. His most recent scan showed metastasis to his lungs. There are several lesions and they are located all over so operation is not an option. He is beginning a new trial, still in Phase 1. It is a study combining the drugs Recombinant Interleukin-21, riL21 and Anti-PD-1. The two drugs have been studied alone, but never together. Does anyone have any info on this study? When we went to sign the consent, she was very vague on the success of each drug by itself and wouldn't reveal any info on how the patients that are in the first 2 cohorts have responded. The lesions have grown within the last couple weeks. I'm scared and looking for advice...
Thanks!
Caregiver to SO, Ari-52 yrs.
6/2008:Stage IV SCC BOT+MET neck HPV +
8/2008:TX TORS+RND+RAD+PEG
6/2011:Stage IV Laryngeal TX chemo+RAD
he had 2 Rec to nodes in neck RX RAD
6/2012:Total Laryngectomy
9/2012: DX Hypopharyngeal cancer stage IV TX 3 Chemo,Erbitux
3/2013: MET LUNGS begins trial 3/11/13
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | So sorry to hear. God be with you both.
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 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | I wish I could offer you some info, unfortunately I think being obscure is all part of the process. I do believe a trial is the way to go. Kelly's brother is going through the same thing. (The lung mets not the trial as far as I know) maybe you can compare notes... Please tell me you're at a ccc. Zenda T had two nodules in her lungs and did a trial - she's NED now. There is hope. Hugs and blessings.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | I too am really sorry to hear this.It is something we all worry about and fear .
I agree with Cheryl's advice. PM Kelly to share notes re his brothers treatment .
Hoping you get success. Thinking of you,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jan 2013 Posts: 11 Member | | OP Member
Joined: Jan 2013 Posts: 11 | Thanks! No, he is not at a ccc. He has never had a "medical team". He is passive and doesn't ask questions, etc... I have begged him to get 2nd opinions since 2011 when the cancer recurred. He had TORS + bilateral neck dissection in 2008 but he had a amazing surgeon and that cancer never came back. I have never liked his ONC, ENT or Radiologist as they are always unavailable and never follow through. I have had to confront them on several occasions because of their lack of communication. I did read Kelly's post and replied but will also PM her. I'd like to know what options her brother is considering.
Caregiver to SO, Ari-52 yrs.
6/2008:Stage IV SCC BOT+MET neck HPV +
8/2008:TX TORS+RND+RAD+PEG
6/2011:Stage IV Laryngeal TX chemo+RAD
he had 2 Rec to nodes in neck RX RAD
6/2012:Total Laryngectomy
9/2012: DX Hypopharyngeal cancer stage IV TX 3 Chemo,Erbitux
3/2013: MET LUNGS begins trial 3/11/13
| | | | | 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 | Luv, Im very sorry to hear about your husbands circumstances. Its very sad! I wish all patients would be a squeaky wheel and advocate for themselves more. The trial does sound to be something that could give him a chance. Im sorry but I do not have any info about this. I do agree that by going to one of the country's top cancer centers, he could have different options. If it were me, thats what I would do.
Best wishes with everything!!!
PS.... Kelly is male.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | I posted on Kelly's post, but it involves pulmonary metastectomy. Good luck with the trial.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | I'm not sure which ccc is closest to you but I would push him to go for a second opinion at a ccc (do not cancel any trial etc... )But do see someone at a top facility. There's no guarantees they can do but they are in the know an may have some suggestions.
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Luvwell - all I can add are my good thoughts and vibes. I can't imagine how tough this is for you. We're here for support.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jan 2013 Posts: 11 Member | | OP Member
Joined: Jan 2013 Posts: 11 | Thanks everyone for your kind words. BTW, today he told me his oncologist is more worried about the tumor in his throat. That kind of scares me because I've read some posts on this forum about pain and how large they can get. He can not have any more radiation, not even for palliative purposes as he has had the maximum. And he's already had 2 bilateral neck dissections and TORS and laryngectomy so I'm very frightened about the news he gave me today...
Caregiver to SO, Ari-52 yrs.
6/2008:Stage IV SCC BOT+MET neck HPV +
8/2008:TX TORS+RND+RAD+PEG
6/2011:Stage IV Laryngeal TX chemo+RAD
he had 2 Rec to nodes in neck RX RAD
6/2012:Total Laryngectomy
9/2012: DX Hypopharyngeal cancer stage IV TX 3 Chemo,Erbitux
3/2013: MET LUNGS begins trial 3/11/13
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