#72183 03-31-2008 10:31 AM | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | After a PET scan on Friday we just found out that the metastasis to my husband's lungs is spreading. The Erbitux did not work and things are getting worse. Our oncologist wants to try a different chemo. He also suggested a second opinion from a cancer center in NY that might be willing to get him on a trial since he is young. They also suspect the cancer has returned to base of tongue. All this after surgery, chemo, radiation and the Erbitux. I can't even ask "what next" because I'm afraid of the answer. I just keep thinking of Brenda. Thanks for letting me vent, Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Sue- My heart goes out to you. I can't imagine how you must feel. Devastating. I pray that your sweet husband will get another shot at fighting this with another kind of chemo. I'm so sorry.
Please keep coming here for support. I know this isn't easy.
K
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Sue,
I see you are from NJ. Where is he being treated? If the doctor is saying go to NYC, I would do it. I assume he is sending you to Sloan-Kettering. Your doctor should be able to get you an appointment there fairly quickly considering his condition. Second opinions are always good ideas anyway.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2008 Posts: 341 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Oh Sue - I am just speechless. Everything in my head seems so inadequate. This is just heartwrenching. I will pray for your strength for your husband.
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!
| | | | | Joined: Nov 2007 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 27 | Sue,
I am so sorry. I can't even imagine where you mind must be going. I will pray that the doctors you see have some new insights for treatment. I will also pray for you and your husband to have peace and that you can get rest.
Cindy
SCC of tongue removed 3/07 mod. left neck dissection. Tumor reappeared 6/07. Removed 8/07, right neck dissection, free flap from wrist for tongue graph. Radiation 30 (IMRT), chemo cisplatin 4 rounds finished 11/07.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Sue,
I hope the next chemo does the trick. Can't they operate and remove the part of the lung that has the cancer or is it to wide spread? Keep getting opinions.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Thank you all for your kind words. The doctor did suggest Sloan. He is being treated at JFK in Edison.NJ now but the doctor told us he is limited in what he can do. He doesn't have access to 2nd generation drugs that may help. As to removing the part of his lung- if it has spread to both lungs from the original floor of mouth it is probably running through his system and another operation will not stop the spread. He is being so strong and the respect I have for him now is more than I have ever had for anyone. I know that is what I need to hold onto because I am at the bottom of my own emotional strength.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Oct 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2007 Posts: 104 | Sue I am so sorry to hear the Erbitux did not work for your husband. If he is strong and being young, another chemo regime would be worth a try if your husband wants to go for it. His doctor must feel it worth while to want to refer him for a second opinion. It sounds like your husband has a strong will to live and will fight hard to make it happen. Strength and courage to you both as you continue to fight the beast that is oral cancer.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | | Joined: Jan 2007 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2007 Posts: 97 | Sue-
I'm so sorry this is happening. There are other chemo drugs and it sounds like the doctors are on top of it. You are in my thoughts.
Melissa
Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Sue,
I am so devastated for you and understand that you must be at wit's end and as you say, bottomed out. Hugs and prayers that you and hubby have the strength to face the coming days and all the decisions that you are facing.
He is so young and I am so mad at this disease......
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Hi All- I just put a call into Sloan Kettering to see if my husband is eligible for a trial. I'm not sure I would do it but he wants to try-God Bless Him. They will be getting back to me shortly. Keep us in your thoughts.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Sue,
I am so sorry. I can only imagine your feelings of despair. We are all no strangers to the anxiety and the unknown. Check out the website on a wonderful survivor. Just key in Randy Pausch. He is a former professor at a university that is winning in the face of adversity his fight with cancer. His attitude is so uplifting.
I will pray for you.
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Sue,
Even if he is not eligible for a trial, I would still go to Sloan for a second opinion. I don't believe the hospital that he is being treated at is a major cancer center and thus maybe Sloan would be able to do more for him since they see more patients with these problems. Keep us posted.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Sloan called back today and the nurse gave me a list of results/tests to fax over to them. She said Neil may be eligible for a trial or a the very least a second opinion(thanks Eileen). Here's to our next challenge!
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Feb 2008 Posts: 341 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Oh Sue that sounds promising!! and also sounds like something that will help with Neil's spirits since he suggested it. Alot more on you - I know - I hope you have some friends and family around to help and give you the occasional break. We continue to pray for you guys.
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | My thoughts and prayers are with you both. This is an evil, if not most evil cancer. Go to Sloan and see if they can offer more choices in his treatment. From experience, I think it is so important to exhaust any possibility of help. My daughter also had lung involvement that occured rather rapidly.
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Linda- Your daughter was so young. It seems like the lungs cultivate this cancer faster than the original site. I'm so sorry for your loss. Thank you for your response. We are trying to get an appointment for Mid-April. I'm in the process of getting all the necessary reports over to them.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Sue,
I am so glad you will be able to get an appointment at Sloan. Here is hoping they have something in their bag fo tricks to beat this beast. Keep us posted.
Take care,
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Sue,
Neil's courage and determination are amazing. My prayers are with you for successful treatment at S-K.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Sue: No matter what happens, we'll be here for you! Keeping you close in our thoughts and prayers.....
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
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