| | Joined: Sep 2011 Posts: 7 Member | OP  Member
Joined: Sep 2011 Posts: 7 | As you can see from the signiture below hubbie has been through a whole lot in the last year. We are at the cross roads where they are saying he is incurable. His last treatment of cyberknife has really brought his health to a low point and Im just affraid his body can't take anymore. At first he wanted to refuse it. Then I started thinking, he is fine from the chest down and the nose up. His blood work is good. He is only 53 years old. I would feel so bad if he decided to take chemo and something happens to him. He has been offered Erbitux this time around from his oncolgist. Also seeing a second Dr in Los Angeles to see if he qualifies for a trial. Just trying to hang in there. Looking for some advise....
10/8/10 DX SCC of tongue 11/9/10 rem 1 cm/mod rad neck dis
12/7/10 clear margins on tongue 12/28/10 g-tube n
1/3/11 30 RADS/6 cispla 4/1/11 flap 5/23/11 g-tube out
6/22/11 MRI clear 7/7/11 PET 2 spots 7/14/11 RND 8/1/11 PIIC
9/28/11 5 cyberknife 12/8/11 g-tube n 12/13/11 trach
Leigh Ann
Caregiver
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Hi. Are they saying that the cyberknife didn't work? I wasn't quite clear with history to date. The two spots that were found sound like they were lymph nodes. Were these new spots on the same side as the side he had radiation on? Has he had another PET snce the cyberknife? I would appreciate a bit more information so perhaps improve the quality of reply for you.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | You two have certainly been through a lot my dear, my heart is with you guys.
Getting advice from the best medical opinion available is the best advice anyone can give really. If you are not already at a Comprehensive Cancer Center (CCC) then you need to get to one ASAP and have them take a look at your husbands case. If at that point they say he is incurable then a trial certainly makes sense if the fight is still in him. I'm one who believes in hope and exploring every option so there are no regrets at the end of the day.
My mom always said when you're at the end of your rope, tie a knot and hang on, so I've always lived by that. I'm glad you've found these forums my dear, use us for support and to vent as you need.
Keep your chin up,
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | What is his latest diagnosis?
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: 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 | Hi - I was going to ask the same thing. It sounds like his recurrence was in the nodes... Or is it in his lungs? If its in his lungs that's harder to treat but there was someone here who's been battling this since 08 and had two spots in their lungs and is now cancer free due to two clinical trials. Definately go to a ccc if you haven't - and make him eat eat eat if it's possible. Healthy foods (this will pump up his immune system) - good luck and do give us more detail.
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 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 | Im so sorry to see everything your husband is going thru. He certainly has had alot going on. Since he currently has a feeding tube I would say to help him, push the feedings to build him up as much as possible. It would help to add some high protein powder to his formula (make sure to also add an extra can of water) to help him with the healing. A cancer center is the best place for him to get help. Sometimes people end up traveling across the country to go to the top teams of doctors. I wish you both all the very best 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  | | | | | Joined: Sep 2011 Posts: 7 Member | | OP Member
Joined: Sep 2011 Posts: 7 | They didn't come out and say the cyberknife didn't work but we are assuming it didn't because there are active cancer cells present. Yes the spots(nodes)are on the same side as radiation.No PET since cyberknife. We were told by our surgeon no more surgery. No more rads and only chemo with no cure just maybe longevity. I just think when you hear the word incurable you freak at first. Then you put it into perspective that no cancer is curable. I spend a lot of time trying to keep up my husbands spirits. He is on a g-tube and is taking in 3325 calories of TwoCal-HN dailey. I saw a formula on the internet for head and neck cancers called Pivot 1.5 I am going to check with his nutritionist on that one. It has more protein and anti oxidants. Cancer is still pretty much in the neck region. We were both kind of in shock last dr visit. I am calling today with more questions. Also picking up scans tomorrow to take with us to Los Angeles on the 8th of Feb.
10/8/10 DX SCC of tongue 11/9/10 rem 1 cm/mod rad neck dis
12/7/10 clear margins on tongue 12/28/10 g-tube n
1/3/11 30 RADS/6 cispla 4/1/11 flap 5/23/11 g-tube out
6/22/11 MRI clear 7/7/11 PET 2 spots 7/14/11 RND 8/1/11 PIIC
9/28/11 5 cyberknife 12/8/11 g-tube n 12/13/11 trach
Leigh Ann
Caregiver
| | | | | 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 | If it's in the neck region it is still treatable not necessarily with surgery or rads... though there are some people here who've had radiation twice and are still around living full lives. I seriously would look at finding a different dr. one with some ideas. Just because one dr. says this is it - doesn't mean another will feel the same. Good Luck in LA. Right now it sounds as though your husband's cancer is treatable... curable... That's why I'm suggesting another opinion. Sorry I didn't realize he was still on a tube, Christine is right try adding protein powder to his formula it will help him heal. Maybe some vitamin D as well. Also Circumen. It helps minimize inflammation. All of these should help. Make sure you okay the anti oxidents with your dr. some work agains radiation and chemo. take care and good luck.
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: Sep 2011 Posts: 7 Member | | OP Member
Joined: Sep 2011 Posts: 7 | Thanks everyone, I can never get enough info.
10/8/10 DX SCC of tongue 11/9/10 rem 1 cm/mod rad neck dis
12/7/10 clear margins on tongue 12/28/10 g-tube n
1/3/11 30 RADS/6 cispla 4/1/11 flap 5/23/11 g-tube out
6/22/11 MRI clear 7/7/11 PET 2 spots 7/14/11 RND 8/1/11 PIIC
9/28/11 5 cyberknife 12/8/11 g-tube n 12/13/11 trach
Leigh Ann
Caregiver
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Leigh Ann, I agree with Cheryl about a second opinion. In addition, you might want to look at some of the clinical trials on the National Cancer Institute site: http://www.cancer.gov/clinicaltrialsYou can search by type of cancer, type of trial, etc. Some of the combination treatments are having good results. Best wishes for both of you.
Last edited by Maria; 01-24-2012 04:35 PM.
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.
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