| | Joined: Aug 2013 Posts: 9 Member | OP  Member
Joined: Aug 2013 Posts: 9 | I am happy to report that we were able to get in touch with my mom's DR and get the ball rolling on two things. He has gone forward with sending her tumor off to FoundationOne and we hope to have some helpful information back in 2-3 weeks that could help in finding treatments.
We also began the process of enrolling her in a clinical trial at Fox Chase Cancer Center in Philly. The drug is called Anti-PD-1. We are feeling more hopeful today with both of these things happening.
Thanks again for your encouraging words. They mean so very much! Hilary
Daughter of oc patient. Diagnosed 2/10/13 SCC stage IV-3 lymph nodes-one lymph node extra capsular extension.Oral/maxillary,surgery 3/25/13 neck dissect- 1/3 of mouth removed, Chemo/Rad. for 7 weeks finished 6/10/13. Recurrence found 8/20/13 skin metastasis, tumor inside cheek,tumor in lymph node
| | | | | 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 |
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 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Hilary, so glad you've found paths forward. I hope some great options are out there for your mom.
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Aug 2013 Posts: 9 Member | | OP Member
Joined: Aug 2013 Posts: 9 | Does anyone here have experience with the drug MK-3475 by Merck? This is the clinical trial we are trying to get my mom into. This is a phase 1 trial for head and neck cancer so I am guessing not. It has been primarily tested in advanced melanoma so far. Hoping and praying! I am trying to keep my eyes open for other clinical trials in case this one does not work out. Thanks for any help. Hilary
Daughter of oc patient. Diagnosed 2/10/13 SCC stage IV-3 lymph nodes-one lymph node extra capsular extension.Oral/maxillary,surgery 3/25/13 neck dissect- 1/3 of mouth removed, Chemo/Rad. for 7 weeks finished 6/10/13. Recurrence found 8/20/13 skin metastasis, tumor inside cheek,tumor in lymph node
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Interesting, it is immune-based. If you google the name you will find quite a few references. Here is one in the New England Journal of Medicine. http://www.nejm.org/doi/full/10.1056/NEJMoa1305133Best wishes! Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Aug 2013 Posts: 9 Member | | OP Member
Joined: Aug 2013 Posts: 9 | Thank you Maria! I appreciate the link to the article. That was interesting to read.
Daughter of oc patient. Diagnosed 2/10/13 SCC stage IV-3 lymph nodes-one lymph node extra capsular extension.Oral/maxillary,surgery 3/25/13 neck dissect- 1/3 of mouth removed, Chemo/Rad. for 7 weeks finished 6/10/13. Recurrence found 8/20/13 skin metastasis, tumor inside cheek,tumor in lymph node
| | | | | Joined: Sep 2013 Posts: 17 Member | | Member
Joined: Sep 2013 Posts: 17 | Your mother is in a very tough spot. I believe the American Cancer Society website maintains a list of all of the trials going on and you can search them by the type of cancer you have. I would be looking at all of those and especially those that are Phase III with few side effects. Or even Phase II with few side effects or even with side effects if results in Phase I or II were very good.
In 1994 I found a 3cm tumor on my right tonsil. After 3 rounds of chemo, I underwent a radical neck dissection with a peck flap. I had a reoccurance which required twice a day radiation treatments and then had 19 years cancer free. I then found a very small tumor on my right tonsil. It was removed. Then I found a 1 cm mass near the base of my tongue on the left side. I had two partial glossectomys with bad margins and then then underwent Brachytherapy.
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