| | 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 | Sheryl, it's a good idea to get to see an RO as well as the MO. There are situations where radiation is more effective and others where chemo is. This way, you will get the care of both doctors. This is one of the reasons why it is always better to be treated at a CCC. Keeping my fingers crossed for you and Charles.
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: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Gloria, Thank you! The RO and the MO are both in our local CCC. We will be seeing the RO every two months. Our first consult with MO is next week to prepare a plan should the lung nodules increase in size between scans. Charles had a ct scan 1/21 and a PET ct scan 2/3. In between the scans he took an antibiotic. There appears to be an extremely tiny increase in the size of one nodule between these scans. I will be pushing for another scan to be done around May 3. Charles is hoping to avoid a biopsy. I'm looking forward to sitting down with the MO next week. Sheryl
Last edited by LilyFoo; 03-05-2016 12:15 PM.
Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | | Joined: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Just checking in. MO agreed to scans in early May. She is encouraged by the results of some targeted treatments that the FDA will probably be approving later this year. Charles is holding his weight. Has very good days and very difficult days. We are just taking one day at a time. Hoping and praying for improving health for everyone here. ❤️
Sheryl
Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | | 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 | Sheryl, thanks for updating. It is a roller coaster ride sometimes. If you need someone to listen, please feel free to pm me.
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 just wanted to write in here that I am so grateful for this forum and for people like Gloria who are still here helping and giving advice and care. Also to Sheryl, many thanks for keeping everyone up to date on your husbands health. I learned of my mets to my lungs back around October and have been on Erbitux weekly ever since. Tomorrow I have another CT scan to see how the tumors are doing. Mine were growing quickly at first and then on Erbitux so far they have pretty much slowed to a crawl. It is great that Charles has slow growing tumors. It is very encouraging to keep hearing about different immunotherapy and targeted therapies that are being approved. I have heard so many good things about Opdivo which is the next treatment I will get when Erbitux stops working. I know there are others that will be out soon also. I am hoping, just like everyone, that these will be able to extend life for a while and just maybe long enough to see one of them or more actually put this cancer into long term remission. I am praying for everyone and hoping for the best. Thank you to everyone on this board as it is a life saver to have an anchor to hold onto when needed.
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: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Thank you, Jeff. I love the people on this board. I don't know what I would do without them. Most of the time I have tears in my eyes as I read all the posts. Please know you are very often in my thoughts and in my prayers too.
Small but HUGH update. Charles ate solid food, soft scrambled eggs, yesterday. That was his first solid food since 2/8/16. He said scrambled eggs never tasted so food!
Praying for great news tomorrow!
Love to you my friend,
Sheryl
Last edited by LilyFoo; 03-21-2016 01:52 PM.
Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Charles ate solid food, soft scrambled eggs, yesterday. That was his first solid food since 2/8/16. He said scrambled eggs never tasted so food!
Excellent news! That is a huge step forward. Both being able to swallow and having taste buds to enjoy it.
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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Thank you, Don. Charles tells me that he really only tastes sweet foods. All other tastes are from memory but he enjoys them anyway! He is still maintaining his weight.
Next scan is May 2. I'm trying to stay calm. Some days (and nights) I succeed.
Charles is an artist. Lately he is happily working away in his studio almost every day. His oncologist has encouraged him to stay busy.
Cheers,
Sheryl
Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | | Joined: Jan 2013 Posts: 65 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 65 | Charles had a ct scan this past Monday (5/2/16) darn, darn, darn. Spots on lungs grew. Only a mm but they freakin grew. And it appears there are new ones. Plus a couple slightly enlarged lymph nodes in chest. But the real winger is another tumor in his neck. So, we are off to CCC to deal with that first. I am sick to my stomach. He's actually doing better.
Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Lily,
I'm really sad to hear such news. He is a survivor - Look how many battles he has been in before. Keep up the hope - NO reason not to think he can get down and win another battle with the beast. 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 | | |
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