| Joined: Oct 2014 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2014 Posts: 41 | Heidi my dad had his right internal jugular vein litigated and a branch of his carotid artery litigated during his most recent surgery. We knew he had involvement in a lymph node but because its close proximity to them, they done during surgery. We never discussed it prior but it was necessary. This surgery required a pec flap to protect the area and that also became the piece of his tongue that was removed. It made for a lengthy recovery (he was previously radiated though). My dad had high blood pressure and high cholesterol prior to this and he was put on an additional BP med and his existing increased. I asked the dr what this had an affect on in the future and he said not much. He had a really good flow on the left side which supplied enough blood flow to the body.
Good luck tomorrow at MDA. I have heard great things about them. I hope they are able to provide options for your mom. We too are meeting with the director of RO at MGH and will see what options are available for my dad. Praying for good news for both of us.
Caregiver to father DX:4/14 Surgery:5/14 resection, ND TX: 33 IMRT complete 9/14 Scan: 10/14, suspicious area tongue & neck. Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue. 11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND 12/14: debridement surgery, small area removed for clear margins 12/14: biopsy positive for SCC dermal metastasis 1/15: chemo: erbitux, taxol and carboplatin 3/15: 5FU, Erbitux 8/15: enrolled in PD-1 Immunotherapy 9/15: Heaven got a new angel <3
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | ConcernedDaughter
Thanks for the information. I was wondering when I read your post I noticed your meeting with the director of RO. Are additional radiation treatments being done. I was wondering if it could be done for my mother. I was told Yes by someone and then someone else told me it cant be done. I'm curious .
On a good note we arrived in Houston Texas today. Appointment time tomorrow at 2pm. cant wait because my mother has been suffering and has not taking any treatments in the last 4 weeks . I hope some type of treatment can get started soon.
Good Luck Heidi
Last edited by sweetpe1; 01-04-2015 10:22 PM.
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | Joined: Oct 2014 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2014 Posts: 41 | Todays meeting with the director of RO was not good. We found out theres really nothing that can be done for my dad. We can try chemo but the odds, scientifically, is against us. We are moving forward with a PEG tube and chemo as it's the only option. The RO wasnt very optimistic, referring to today being the best day my dad will ever have. His surgeon however stated that his scan from last week shows theres no cancer in his lymph nodes or his tongue and he may have a good response with chemo, we just never know . He thinks my dad will benefit from continuing with his swallow therapy because the chemo may reduce swelling and allow him to eat and talk better.
Its been a terrible day and I am angry. My dad was originally told he had stage 1 cancer and there was no way his cancer was aggressive enough for this. Now it looks like we are running out of options and that my dad is likely to suffer. I dont even know what else to say or do...
Caregiver to father DX:4/14 Surgery:5/14 resection, ND TX: 33 IMRT complete 9/14 Scan: 10/14, suspicious area tongue & neck. Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue. 11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND 12/14: debridement surgery, small area removed for clear margins 12/14: biopsy positive for SCC dermal metastasis 1/15: chemo: erbitux, taxol and carboplatin 3/15: 5FU, Erbitux 8/15: enrolled in PD-1 Immunotherapy 9/15: Heaven got a new angel <3
| | | | 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 | What awful news you were given. It is completely normal to feel shocked and angry. If this cancer has not spread to any lymph nodes then it must still be a localised cancer. Can they not do further surgery with reconstruction? What about localised Proton radiation. If this was us, I would be chasing another opinion and that would be from a top Comprehensive Cancer Centre. I will keep you and your Father in my thoughts and prayers. 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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | I'm sorry to hear the bad news. Cancer is evil and all we can do is our very best to slay the beast. Most of the times we have the upper hand, sometimes it does. Don't lose hope as often what looks cloudy today may offer rays of sun in the future. Keep pushing for options that will help. Good luck.
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: Apr 2014 Posts: 236 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Tomvonk
My mothers cancer never did enter the lymp nodes either. That's what's strange . My mothers is confined to her lower left jaw and, cheek of face. It is in the neck area but when she had surgery her nodes were all clear. It does seem to be staying localized at this point . We arrived at MD Anderson yesterday and I will say they are jumping on this quick . By Friday we should have a plan . Hopefully .
Thanks Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I'm sorry for your troubles. From my understanding, the cancer is confined, localized, to the skin metatesteses? While it may be true that nothing else can be done besides chemo, which may be beneficial too, another doctor may say yes. As Tammy suggested, seeking another opinion for other options like Proton Therapy, and others like photodynamic therapy, which treats where light can go, just beneath the surface, can be done many times, in addition too, Brachytherapy, IORT, and surgery itself, as possible options. I have been told no in the past many times for chemo, radiation and surgery, but at later dates or with someone more experienced or specializing in these may say it is possible.
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
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ChrisCQ | | | | Joined: Oct 2014 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2014 Posts: 41 | Thank you for your kind words and recommendations ...I'm not sure what I would do without this board.
Paul your recommendations are especially helpful. I will look into these additional treatments. I feel like I'm in a fog. What do i do first to get a second opinion? In Boston, many hospitals work collabortively. Can i do a phone consult? Who should i reach out to? I just feel defeated.
Caregiver to father DX:4/14 Surgery:5/14 resection, ND TX: 33 IMRT complete 9/14 Scan: 10/14, suspicious area tongue & neck. Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue. 11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND 12/14: debridement surgery, small area removed for clear margins 12/14: biopsy positive for SCC dermal metastasis 1/15: chemo: erbitux, taxol and carboplatin 3/15: 5FU, Erbitux 8/15: enrolled in PD-1 Immunotherapy 9/15: Heaven got a new angel <3
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I know how you feel at a loss. Maybe ask your current doctors of any other treatments, where offered, suggestions. Sometimes they don't say directly to go here or there, elsewhere without asking. Some may say it won't work, as was my case with brachytherapy or refusal to do more radiation due to dose limit toxicities.
I also looked at all the top hospitals via the internet, see what they specialized in for head and neck cancer, who the doctors were, their background, mostly in my area, but other hospitals may give an idea of the latest treatments. U,S. News Reports Best Hospitals was helpful, had many links.
You don't have to be restricted to one area. You can stay at Hope Lodge, other housing, and go anyplace if insurance allows. Sometimes a visit to one city can enable a number of consultations.
I basically googled everything, went to various sites for trials, pubmed abstracts, etc.
Then I called the hospitals I wanted to consult with.
You can see in everyone's signature what treatments they had. Unfortunately, I didn't join here until 2012, and usually don't ask for advise on other sites.
I made sure or was in the process to have a copy of every scan, CD disk too, pathology, surgical reports, radiation plan, and in some cases copies of the pathology reports. I also made a time-line of my case being it was complicated.
The more information I had the better. It's a lot of work, but it helped me in a number of ways, and felt more in control, that I didn't have to accept what was offered, although that was an option still on the table, but could go elsewhere.
Sometimes time changes treatment options too. For a year I could not do further treatment, but physical,medical condition improved, I was able to do more, and doctors do take that, amongst others, into consideration.
I hope this helps
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
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ChrisCQ | | | | 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 | is surgery not an option? If it's localized wouldn't a graft be a possibility? I would definitely seek other opinions. hugs
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
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