| Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Some of you may know this and some not but my brother Chris was diagnosed with Oral cancer just after my recurrence a year ago. He went to MD Anderson in Houston and underwent surgery to remove a tumor just above his vocal chords. He also had IMRT (70 gy) to the vocal chords to clean up a bit of cancer they identified there.
He recently received a clean CT for this area but got very bad news as they discovery the cancer had broken out into the lymph nodes in his upper chest and he has spots on his lungs.
MD Anderson has recommended chemo therapy for palliative care. I wanted to see if any of my OCF brothers and sisters can recommend another place out there that is doing something new in this area. I am a big advocate of second opinions and told my brother that he should see at least one or two other doctors regarding possible curative treatments.
I know this is about as bad as it gets but any suggestions would be greatly appreciated. I have pasted in the radiology report below.
I am looking for anything new in treating metastasis to the lungs. I would like to get him a direct contact at whatever facility you may know of so please include the doctor�s name if possible and any contact information you may have.
Thanks in advance for the help.
FULL RESULT: Examination: CT Chest with IV Contrast, 02/13/2013
Clinical History: Piriform sinus oropharyngeal cancer.
Indication: Evaluate for metastatic disease.
Comparison: CT chest of 10/16/2012.
Technique: CT scan of the chest performed with intravenous contrast.
Findings: New mediastinal adenopathy is noted adjacent to the right brachiocephalic vein and in the subcarinal and right anterior mediastinum adjacent to the superior vena cava. The subcarinal adenopathy measures 3 cm. Bilateral pulmonary metastases are noted. Small nodules seen on the prior study have increased in size. The largest lesion is located in the right middle lobe abutting the right heart border, previously measuring 5 mm, now measuring 21 mm. There are no pleural effusions. The adrenals are unremarkable. A gastrostomy tube is present.
IMPRESSION: Progression of disease. Mediastinal and bilateral hilar adenopathy. Bilateral pulmonary metastases.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 this news of your brother, Kelly. I have no experience with distant metastases, but know MD Anderson is the top rated cancer treatment center in the country. What I recall, and could be wrong, about lung involvement in HNC is knowing if it's metastatic cancer or a secondary cancer, both of which may be treated differently, have different prognosis. I heard of biopsies being done in the lungs to help confirm this, if it's possible. For small tumors, I heard of radio-surgery, like cyber knife, being used, and other therapies depening if its metatastic or not. I wish I knew more to help, and hopefully someone has some experience or knowledge in this area. You can always get 2nd opionion orveven 3rd opionin elsewhere. If I come across anything, I'll let you know. Take care.
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 | Kelly, Im very sorry about your brother. I had hoped he was doing fine after his treatments. Here is a link for NCI where you can search clinical trials. I wish there was more I could do to help. Im very sorry!!! NCI Clinical Trial Search 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 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Kelly,
I am sorry that your brother is facing such a difficult diagnosis. I don't have any info to offer you but just wanted you to know that you and your brother are in my thoughts and prayers. (((Hugs)))
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | 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 | Paul and Christine are right a secondary non metastatic cancer is treated differently, they don't know if its mets without a biopsy - md is awesome. Ask him to see if there is a trial available. There was someone else who had mets to the lungs and was treated with surgery and a trial. They are cancer free now. Thin it was a two year ordeal. There is also testing to see what chemo the tumor is sensitive to this would give him a leg up on fighting it. He should definitely get a second opinion. Hugs and I'm sorry for this news.
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 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Cheryl,
A biopsy was done and this is Matastic. Thanks forthe heads up so I could clarify.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Kelly,
My condolences my friend, that's tough news. A clinical trial would be an option if he wants to continue to fight. I've forwarded this to Brian to see if he's got any leads on current trials.
You and your family are in my thoughts and prayers brotha.
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 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Thanks Eric,
I appreciate your concern. It was ironic that I started teatment first and Chis was always devistated when I had a setback fearing that was going to be him the next time. He was very worried about a recurrance after I had mine. Its been very tough on him this oast week and he climed into a shell. It took a few of us brothers and sisters along with his wife to break him out of his slump. He was doing better today up early with a full breakfast and a walk with his wife.
I'm hoping we can find him something out there that will increase his odds.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | Kelly:. I wish I had some helpful suggestion for your brother, but all I can offer is prayers for all of your family. We are here 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: Feb 2013 Posts: 20 Member | Member Joined: Feb 2013 Posts: 20 | Kelly, I have no idea if this will help or not as I am very new to this whole thing, but I wanted to at least mention it. I went to Wake Forest Baptist Comprehensive Cancer Center on 2/20 to be evaluated for oral scc tongue cancer. The treatment plan they came up with was for surgery in 2 weeks. Meanwhile, they put me in a clinical trial. This clinical trial involves the drug Tarceva, which was previously used in patients with non small cell lung cancer to slow the growth of the cancer. Well, in this study, tarceva is supposed to stop the growth of scc and even shrink the tumor. I think they said that the majority of their patients had seen a reduction of at least 70%. I have been on it a little over a week and the tumor on my tongue has shrunk considerably. The reason I am mentioning this is that from what I understand, and again I am new at this, the cancer in your brothers lungs is really SCC since it metastized (sp).from the original cancer. Maybe this drug could help him since it is being used with scc in a clinical trial right now, the scc seems to respond well to it and it has been approved for lung cancer as well. I am being treated at Wake Forest and my Oncology and hematology Dr who is heading up this trial seems to be very compassionate and caring. I believe she will help if she can and if she personally cant, she may have information as to who can. I really hope I am not sending you on a wild goose chase as thats the last thing you need, but I have this information and have to share it with you if there is the slightest chance it may help. I really really hope it does. It's worth a shot anyway. My prayers are with you and with your brother. Keeping my fingers crossed. If you would like the contact info please send me a PM. If you need any more information, please let me know.
2/13/13 Dx scc anterior 2/3 of ventral surface of tongue 3/8/2013 partial glossectomy neck dissection at Wake Forest 1 out of 61 nodes had cancer but was encapsulated 4/22/13 rad tx started; 30 sessions over 6 weeks at Wake Forest 6/4/13 finished rad tx 9/5/13 PET scan NED | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Thabks Monica,
I sent your post along to my brother. I can tell you that this seems to be the path all are directing him in, as in chemo to shrink tumors.
He has looked at the treatment at MD Anderson and two national trials. I do not know if one of these includes tarceva but I'll check.
Thanks for the heads up. Any help we can get at this point is a blessing.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | Also contact zendat here on the forum she had lung mets and is NED now. 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
| | | | Joined: Jan 2013 Posts: 11 Member | Member Joined: Jan 2013 Posts: 11 | My SO has metastasis to his lungs as well. He is beginning a new trial, which is still in Phase 1. It is combining the two drugs Interleukin-21, riL-21 and Anti-PD-1. The Protocol # is CA220-008. WIRB Protocol # 20120892. I am still researching the drugs as this study's purpose is to learn about the safety of the drugs together, which I find frightening. They are recruiting in several states, I can check which ones and get back to you if you are at all interested. Best wishes,
Caregiver to SO, Ari-52 yrs. 6/2008:Stage IV SCC BOT+MET neck HPV + 8/2008:TX TORS+RND+RAD+PEG 6/2011:Stage IV Laryngeal TX chemo+RAD he had 2 Rec to nodes in neck RX RAD 6/2012:Total Laryngectomy 9/2012: DX Hypopharyngeal cancer stage IV TX 3 Chemo,Erbitux 3/2013: MET LUNGS begins trial 3/11/13
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Thanks luvwellrx,
My brother lives in Dallas, Texas. I'll forward yor post on to him. I'm sure he will want to research this approach.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 read of pulmonary metastectomy for head and neck cancer metastases, if primary cancer is resolved, has better OS, possibky curative. I hope this helps. http://www.ncbi.nlm.nih.gov/pubmed/22691826http://icvts.oxfordjournals.org/content/10/5/700.full.pdf
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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