#20106 04-04-2006 09:47 AM | Joined: Apr 2006 Posts: 1 Member | OP Member Joined: Apr 2006 Posts: 1 | Hi-- I am a new member .I am 60 , a lawyer and have just finished ( jan 24 ) 35 radiation and 3 chemo treatments for a secondary site neck lymph node under my right mandible with an undisclosed primary . Is there anyone there who has had a similar diagnosis or knows anyone who has . I would like to correspond with anyone with information about this type of diagnosis . If I am on the wrong web site could someone advise me of another source which might be more specific . thanks .
dont know how to use this
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#20107 04-04-2006 10:24 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi Welcome Yes you are in the right place and I'm sure you will soon find your way around the site.. Page up from here and click on search and type in your key words and I'm sure that will help. I'm also sure that someone will reply with their own experiences. Also on the home page of OCF there is also a search facility to aid you.. Sorry that you had to find us, pleased that you are so far along your treatment path.. Please stay and keep us up to date... Sunshine...love and Hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#20108 04-04-2006 10:53 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi and Welcome, I had the same diagnosis as you in 1997. Had rt neck dissection followed by 36 XRT rad treatments, no chemo. I had a new occurrence in 2001 that cost me my voice box. Still doing fine. Ask me any questions you would like. If you feel the need to do it privately, use email not the private message facility. I don't always get to the board to post.
FYI, you will notice at the bottom of our posts, most of us have listed our diagnosis and treatments. It's a quick reference so you know our experience.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#20109 04-04-2006 12:30 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Go back to the my profile link ( very small ) under the forum name. In there you can, in the bock designed for a signature, enter the information in that you desire, much like Eileen has done in the previous post.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#20110 04-05-2006 01:38 PM | Joined: Feb 2006 Posts: 115 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2006 Posts: 115 | Hi Toronto! My husband had a left neck mass with unknown primary and just finished (yesterday) 39 radiation treatments and 3 rounds of chemo (actually ended up to be 4 rounds of chemo because they changed the chemo drug after5 the first 2 rounds from Cisplatin to Carboplatin and Taxol). He is scheduled for modified radical neck dissection next week. Are you going to have or have you had a neck dissection? How did you do through your treatments. Please write back with any comments or questions. Michele
Michele, caregiver to husband, Jesse, SCC diagnosed 1/5/06 unknown primary, lf neck mass >6 cm. Chemo (Cisplatin 2x; Carboplatin & Taxol 2x) & XRT radiation 39X ending 4/4/06. Rad neck dissection 8.5 hrs 4/13/06. 30 HBO treatments Fall 2006.
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#20111 05-08-2006 02:44 PM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2006 Posts: 137 | Hi, I'm new here and didn't know this site existed until now. First diagnosed 2/14/06 after wasting 4 months with an ENT who said the swelling under my left jaw was a saliva gland.
Had a modified radical neck dissection 3/9/06 @ UCLA Medical Center. Surgeon removed 47 lymph nodes, one positive for metastastic undifferentiated carcinoma (lymphoepithelioma). Multiple biopsies failed to locate the primary, but positive for Epstein-Barr virus indicating nasopharyngeal cancer.
PETscan in April failed to locate a primary, although it did show mild hypermetabolic activity in the upper right lobe. Went in for a fine needle aspiration of the lung a week and a half later, but the contrast CT showed nothing there (?!).
So........I'm into the 5th week of radiation. Started chemo last week (40mg Cisplatin + 40 mg Docetaxel). The worst week of my life.....really sick. I've declined further chemo right now, but will re-assess after radiation ends in two weeks.
Riley
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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#20112 05-08-2006 02:59 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Riley,Being part of this group will help you along the way. Sorry you had such a bad time with the chemo. How are you holding up with the Rad treatments? Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#20113 06-14-2006 12:11 PM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2006 Posts: 137 | Hi Amy. Sorry I didn't answer your post back in May, I didn't see it until now.
Finished rt 5/24/06. Still on liquid (Ensure) diet, although attempting solid food unsuccessfully. Everything tastes horrible. Have an appt with the hematology/oncology chemo doctor Monday. The decision whether or not to resume chemo is weighing heavily on me.
This 'unknown primary' business is nasty. As I understand it, it's possible the primary is microscopic, or even that my body has defeated it through the lymph system. I'm not looking forward to chemo (Cisplatin + Docetaxol), but will undergo it if there is some evidence that it will prevent a recurrence. Most HNC patients do chemo + rt at the same time, so I don't know how it works out in my situation.
Riley
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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#20114 06-14-2006 02:18 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Riley, Hope you are still reading these. My husband is currently doing Carboplatin and Taxol. He's NOT having nausea thanks to the antiemetics they are using. The only issues thus far have been some stomach burning, hair loss and tiredness. Rather than not do chemo, maybe you could discuss a different combination. John's Chemo Doc told us that Carboplatin and Cisplatin yeidl pretty much the same results. [Hope that statement doesn't open a can of worms] Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#20115 06-14-2006 03:51 PM | Joined: Feb 2006 Posts: 115 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2006 Posts: 115 | Riley - my husband had unknown primary as well. Very scary, however, we hope that his radiation treatments and concurrent chemo, with follow-up radical neck dissection, got it, wherever it was hiding. As far as chemotherapy to help prevent recurrence, this was advised by my husband's oncologist locally, but we went to Johns Hopkins for a second opinion. The doctor there (head and neck cancer specialist) advised that studies have shown that additional chemotherapy as a follow up did not prove to be of any value in preventing a recurrence. She (the doctor) did say that if he did have a recurrence, then chemotherapy would be warranted, although if the recurrence was sooner (within 18 months) rather than later, the chemo would not be as effective in treating the recurrence. Just thought I would pass along what we found out. Consequently, my husband elected not to have additional chemo at this time, even though his odds of recurrence are very high, since he had an unknown primary, and following radiation and chemo, he still had viable cancer cells which were noted in the pathology report to be "nearly completely necrotic" (whatever that means) when he had a radical neck dissection after the RT and chemo.
By the way, my husband finished radiation/chemo on April 4, had surgery on April 13, and about 3 weeks ago, he finally started eating, just little amounts at first, but hasn't used his feeding tube since. His taste buds are back for the most part, except for certain things.
I hope you get good advice to determine what is best for your current situation. Best wishes to you during your recovery.
Michele (P.S. - I will not be on the forum for a couple days because I have to disconnect my computer due to some work being done at my house, just in case you have any follow up questions. Should be hooked back up Saturday or Sunday.)
Michele, caregiver to husband, Jesse, SCC diagnosed 1/5/06 unknown primary, lf neck mass >6 cm. Chemo (Cisplatin 2x; Carboplatin & Taxol 2x) & XRT radiation 39X ending 4/4/06. Rad neck dissection 8.5 hrs 4/13/06. 30 HBO treatments Fall 2006.
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