| | Joined: Jun 2013 Posts: 7 Member | OP  Member
Joined: Jun 2013 Posts: 7 | Two weeks ago my husband, who has been quite ill with right heart failure and confined to bed for the last two years on continuous oxygen, went to the dentist for what he believed was a "cut" tongue from a broken tooth. He has been on high dose pain meds for years following five back surgeries and bilateral foot drop. So I am assuming his pain was masked. Anyway after hearing our dentist say wow, we proceeded on the same day to the oral surgeon. The oral surgeon looked into my husbands mouth and said, " I hate to be the bearer of bad news but you have cancer and its in the lymph nodes. We have a great relationship with our PC doctor and called her immediately. She called the ENT and set us up for the Cancer Center the very next morning. Since that time he has had a CT and PET. Yesterday the ENT discussed surgery that would include removing the tongue, voice box and jaw. He said it would be about a 12 hour surgery. He has positive nodes in the neck. Tomorrow meeting with surgeon and oncologist and need to know what questions to ask.
Husband 63 yo
4-vessel bypass 2004
Right Heart Failure
COPD
Scc(a) 6/13
6/12/13 PEG
PET 10/21/13 bone METS T7, rt humerus, rt acetabulum
Right and left upper lobe lung lesions
Right lower lobe lesion
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome, and sorry to hear Gina. Was anything confirmed by biospy? Not saying they are incorrect, but no diagnostic exam is 100 perecnt accurate, PET, CT, MRI, Sonagram. They may do a FNAB of the lymph nodes, but if surgery is likely, will do a surgical biospy during a endocscope or triple scope, and if it is cancer, proceed with surgery right then, which soumds like it may, but I can't see any doing that surgery without confirmation of cancer, and ask about this, any altenatives. Chemo sounds likely also, being a conslult with medical oncologist was made, and extent of disease. Radiation? Maybe get a second opinion with the best doctor, hopsital you can find, have trust in. Is this a CCC, Comorehensuvd Cancer Center that have a disciplinary team if doctors. There is a top hospital for ENT in Chicago, forgot the name, but check on U.S. News report's best Hospitals in ENT and Cancer, NCCN assoicated Hospitals, and NCI CCC hospitals you may find linked here. Number one ENT hospital is John Hopkins, and in cancer is MD Anderson, according to U.S News. You may also want a hospitals that is top in several specialties due to his condition, like for cardiac. Good luck.
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: 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 | Welcome to OCF! Im so sorry to hear of yoru husbands diagnosis! you will find lots of correct info and moral support here on the forum. I would suggest taking him as soon as possible to one of the countrys top comprehensive cancer centers (CCC). It does make a difference! They will have the nations top doctors and are more likely to go by the NCI guidelines. At a CCC they will have the most experience and are best with complicated cases. The CCC also will have a team based approach where all the specialists will meet to discuss each individual case and make a treatment plan that best suits each patient. CCC list Dont worry, we will be here to help get you both thru this. Best wishes!!!
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: Jun 2013 Posts: 7 Member | | OP Member
Joined: Jun 2013 Posts: 7 | We will get biopsy results tomorrow. PET showed many positive metastatic nodes in neck. Should needle biopsy still be done? ENT did mention possible chemo prior to surgery.
Gina
Husband 63 yo
4-vessel bypass 2004
Right Heart Failure
COPD
Scc(a) 6/13
6/12/13 PEG
PET 10/21/13 bone METS T7, rt humerus, rt acetabulum
Right and left upper lobe lung lesions
Right lower lobe lesion
| | | | | 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 | Hello Gina, So sorry you have to be here.
I totally agree with Christine. Your Husband would be best treated at a CCC with a team approach. This is complicated and involved surgery and treatment. Plus , he has existing medical problems. May I ask what age he is? You should also discuss with the Team Quality of Life issues.
The biopsy results should be all you need to get a definitive diagnosis.
Best of luck,
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: 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 | Definitely get another opinion from a CCC.
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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Just another vote for a 2nd opinion at a CCC. I have cardio vascular disease and treatment can be difficult on the heart. A team approach (including your cardiologist) from a comprehensive cancer center is the best bet.
I'll share a silver lining with you. The treatment is brutal but doable. In the process I lost 35lbs (60 total from last August). Due to the weight loss and subsequent diet (about 80% tube feedings), my blood work and blood pressure are now perfect! My cardiologist took me off of my BP med and lowered my dose of beta blocker to the minimum.
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Good luck with the biopsy results!!!
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: 7 Member | | OP Member
Joined: Jun 2013 Posts: 7 | Our cancer center is a CCC. He is 63 yo. Biopsy proved squamous cell. The plan is to place feeding tube next week. he has an appt with GI on Monday. He has gone from 155 to 139 since April. He has a consult scheduled with oral surgeon on Tuesday for removal of all teeth. Following that mapping for rad therapy to jaw and neck. Due to right heart failure they are not using cisplatin but planning one of two other chemo drugs. The ENT told us at onset of the appt that treatment will be very intense and if it ever is too much he can back out at anytime. He will still require surgery to the jaw and tongue but hopefully would be able to spare the voice box.
Husband 63 yo
4-vessel bypass 2004
Right Heart Failure
COPD
Scc(a) 6/13
6/12/13 PEG
PET 10/21/13 bone METS T7, rt humerus, rt acetabulum
Right and left upper lobe lung lesions
Right lower lobe lesion
| | | | | 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 | Please add a signature, it is very important to helping us to help you. I have sent you the link for helpful info which also includes detailed instructions on how to make a signature. Thanks you!
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 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 | Gina,
We will be with the both of you throughout this Tx so please use us often. That's what we are here for.
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | My best wishes and prayers go out to you and your husband, Gina. Stay with us and keep us informed on things as they progress, Please!
This is the most experienced and knowledgable group regarding this cancer you will ever find; and you never know who will provide a nugget of information in response to one of your updates, that will prove to be invaluable to your success.
God bless you both!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | They say HPV outside the oropharynx, like oral tongue, elsewhere, HPV positive structures do not have the same treatment response, that we've seen in the tonsils, BOT. Just mentioning since there is talk with deescalation of treatment with HPV, which should only be used in clinical trials, for now.,
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: Jun 2013 Posts: 7 Member | | OP Member
Joined: Jun 2013 Posts: 7 | Thank you all for your support. These last couple of weeks have been a whirlwind of appointments. The plan to extract all his teeth has changed due to issues with arranging schedules and the rapid growth of his mass which is now in his jaw bone. He starts radiation on Wednesday and carboplatin on Thursday. All went well with insertion of the PEG tube on Wednesday but he is still in the hospital finishing up trickle feed this morning. I have learned a lot in a short time.
Husband 63 yo
4-vessel bypass 2004
Right Heart Failure
COPD
Scc(a) 6/13
6/12/13 PEG
PET 10/21/13 bone METS T7, rt humerus, rt acetabulum
Right and left upper lobe lung lesions
Right lower lobe lesion
| | | | | Joined: Jun 2013 Posts: 7 Member | | OP Member
Joined: Jun 2013 Posts: 7 | A lot has happened since my last visit here. Treatment with radiation daily for seven weeks and chemo once weekly with carboplatin has begun. Pain has become a big issue due to my husband's previous five back surgeries and the need to get on the table for his treatments. With the help of the palliative pain team and the addition of liquid morphine and methadone, his pain has been managed fairly well. He has had difficulty with his hemoglobin and did require a transfusion this week as it was 7.5. Having said this, the tumor is responding amazingly well to the treatment. Keeping his weight up has required increasing his tube feelings to six cans a day but whatever it takes! Becoming a nag to keep him swallowing! Tough job but somebody's gotta do it.  Halfway thru treatment. Praying and taking it one day at a time.
Husband 63 yo
4-vessel bypass 2004
Right Heart Failure
COPD
Scc(a) 6/13
6/12/13 PEG
PET 10/21/13 bone METS T7, rt humerus, rt acetabulum
Right and left upper lobe lung lesions
Right lower lobe lesion
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Sorry for the troubles, but glad the pain was managed by the doctors. I needed a blood transfusion during chemoradiation, was 7.5 also, other times as well. That's from the bone marrow being compromised, which produces RBC, which picks up oxygen in the lungs, but there is not enough RBC being produced by the bone marrow, and also from them being killed off by radiation and chemo, quicker then they can be replaced.
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: 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 | Being a caregiver is not an easy job at all. You must be an advocate for your husband, his nurse and still manage the household while keeping a smile on your face no matter what you feel on the inside. Its not a job I think I could easily handle. During your husbands treatments, please dont forget to be kind to yourself. Take a break and go out for lunch with some friends, take a walk or just take a long hot shower to relax and clear your head.
Make certain the doctors keep your husbands pain managed. Being in pain is nto helpful to the patient at all. It makes everything so much harder to deal with. Many OC patients (myself included) have used the fentanyl patch. Its the strongest pain med on the market. If he goes on the patch make sure you follow directions exactly and get some type of pain meds for him in case he has breakthru pain. Nobody should have to hurt while dealing with all of this!
Best wishes!!!
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | It sounds like all is going as well as possible. Great news that the tumor is responding favorably. So glad you are keeping us updated. I know when we were in the trenches it helped so much to have these forums.
You are sounding pretty positive as a caregiver too....great job. There will be those down times, but be sure to not beat yourself up for them. We have to have a bit of time to melt down so we can get back at it with a fresh face!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jun 2013 Posts: 7 Member | | OP Member
Joined: Jun 2013 Posts: 7 | It's been a while since I've been here although I have read many posts searching for information. My husband was diagnosed in June with floor of mouth with metastatic nodes in the neck. In October he had a follow up PET following 7 weeks of radiation and chemo. The results of the PET showed lesions in upper and lower lobes of the lungs, T7, right hip/sacrum/pubis. He has spinal cord compression. He was over medicated for an MRI of the spine and ended up in the MICU. He got better from that ordeal and underwent 5 radiation treatments. He is currently on Erbitux, 5 FU and cisplatin. He missed a couple treatments due to pancytopenia. His disease has progressed very fast. Just reaching out to someone who has experienced the same. He was very limited prior to this diagnosis due to longstanding back problems. He is unable to help at all with any activities of daily living. When will we know the proper time for Hospice.
Husband 63 yo
4-vessel bypass 2004
Right Heart Failure
COPD
Scc(a) 6/13
6/12/13 PEG
PET 10/21/13 bone METS T7, rt humerus, rt acetabulum
Right and left upper lobe lung lesions
Right lower lobe lesion
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hon, you'll know. It will be very hard to care for him and he'll likely have a lot of pain. Hospice will help manage this. Liza a former member went into hospice when the pain became too bad. She asked to be sedated most of the time. Hugs - I am sorry this has progressed so quickly, we are here to listen and help if need be. Hugs
Last edited by Cheryld; 12-12-2013 10:40 PM.
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 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 | Get in touch with Hospice now. They will come out and do an eval. They are very helpful and will help you make these difficult decisions.
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.
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