| | Joined: Aug 2013 Posts: 9 Member | OP  Member
Joined: Aug 2013 Posts: 9 | Hi- Thank you in advance for any advice you can give. My mom is 74 and was diagnosed 6 months ago with SCC. She had surgery to remove the cancer as well as a neck dissection. She then underwent 7 weeks of Chemo and Radiation. During her final week she developed a nasty infection that went into the bones in her spine. She was hospitalized twice and finally came home with iv antibiotics for 6 weeks.
Last Wednesday we received the shock that the cancer is back in 3 places, including one that you can see directly on her facial skin. The Dr. said that the cancer is too aggressive to remove surgically. He said that we could not do chemo again because that would be throwing the same thing at it again. Her chemo was carboplatin. He suggested that she might be a possible candidate for two clinical trials at NIH and Mass General. She will go back to see her oncologist in two week. I found another trial today at U. Penn hospital. I am reeling from this information that there is basically nothing more that can be done. I would love to hear your advice and thoughts. She does not want to get a second opinion. She has had her treatments at a major medical center in a major metropolitan city. Thank you- Hilary
Daughter of oc patient. Diagnosed 2/10/13 SCC stage IV-3 lymph nodes-one lymph node extra capsular extension.Oral/maxillary,surgery 3/25/13 neck dissect- 1/3 of mouth removed, Chemo/Rad. for 7 weeks finished 6/10/13. Recurrence found 8/20/13 skin metastasis, tumor inside cheek,tumor in lymph node
| | | | | 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 very sorry to hear about what your mother has been thru and how she is now facing a recurrence. My advice would bt to take her to one of the countrys top Comprehensive Cancer Centers (CCC). They will be able to give her the best chance at beating this. Dont delay as SCC can be a fast moving cancer especially when talking about recurrences. Best wishes! Cancer Center List
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: Aug 2013 Posts: 9 Member | | OP Member
Joined: Aug 2013 Posts: 9 | Thank you- She has received all of her treatment so far at one of the CCC's on the list.
Daughter of oc patient. Diagnosed 2/10/13 SCC stage IV-3 lymph nodes-one lymph node extra capsular extension.Oral/maxillary,surgery 3/25/13 neck dissect- 1/3 of mouth removed, Chemo/Rad. for 7 weeks finished 6/10/13. Recurrence found 8/20/13 skin metastasis, tumor inside cheek,tumor in lymph node
| | | | | 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 | Good luck with the trials but I'm surprised that they can't see her for another 2 weeks. IMO time is of the essence.
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 | Agreed push to get her in as soon as possible and a trial sounds good - what kind of trial ? Skin should be an easy treatment and evey the node.. Surely they can remove it? There is a light therapy that might work with the cheek. Christine has had a similar issue - she had 3 recurrences in three years. hugs and push
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: Aug 2013 Posts: 9 Member | | OP Member
Joined: Aug 2013 Posts: 9 | Thank you so much for the encouragement. I wish I knew why the DR. said he did not need to see her for 2-3 weeks. It really concerns and annoys me. Maybe I will call the Dr. myself and ask him, although with Hipaa laws he may not speak to me. I will ask my parents.
I can't tell you how much it means to have you all respond and give suggestions. Thank you again. Hilary
Daughter of oc patient. Diagnosed 2/10/13 SCC stage IV-3 lymph nodes-one lymph node extra capsular extension.Oral/maxillary,surgery 3/25/13 neck dissect- 1/3 of mouth removed, Chemo/Rad. for 7 weeks finished 6/10/13. Recurrence found 8/20/13 skin metastasis, tumor inside cheek,tumor in lymph node
| | | | | 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 |
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: Aug 2013 Posts: 9 Member | | OP Member
Joined: Aug 2013 Posts: 9 | I found one trial that I think she would qualify for it is using a drug called, Oral Rigosertib for Squamous Cell Carinoma. This takes place at U Penn in Philadelphia. We are also looking into a couple at NIH and one at U Mass. Thank you again!
Daughter of oc patient. Diagnosed 2/10/13 SCC stage IV-3 lymph nodes-one lymph node extra capsular extension.Oral/maxillary,surgery 3/25/13 neck dissect- 1/3 of mouth removed, Chemo/Rad. for 7 weeks finished 6/10/13. Recurrence found 8/20/13 skin metastasis, tumor inside cheek,tumor in lymph node
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Hi Hilary, it's great that your mum has a strong advocate in you, and how distressing for you to have to see her go through all this. If your mum is with you when you call the doctor, surely he will speak to you. Good luck with it all.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | 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 | Ask about photodynamic light therapy, mammals side effects and supposedly quite effective
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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