#76672 07-08-2008 05:47 PM | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Hi, I am Don and I am new to these Forums. I have SCC. Two lymph nodes with SCC were removed from my neck 6/23/08 along with the tonsils (benign). Despite a PET Scan and numerous biopsies, a Primary tumor was not found.
I expect to begin TomoTherapy radiation treatments and Chemotherapy in a week or two.
Due to complications of somewhat diminished renal function the Chemotherapy drug has not yet been selected.
Due to the unknown Primary I am told I will need more areas treated with greater radiation intensity.
I am having difficulty dealing with the PEG - primarily psychological (Borg Implant).
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | 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 |
Hi Don:
Welcome to OCF. Sorry that you are here. Feel free to ask questions or to vent. There are so many kind caring people to help you thru this journey.
Im not familiar with a Borg Implant PEG tube, what is that? Are you able to eat at all right now? I have a PEG tube, and hate it more than anything. But I also understand I need it at least for a while til I can eat properly again.
Christine
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Don -
I hear you on the PEG tube! I hadn't thought of it as a Borg device, but love that! (Christine, the Borgs were a race of beings in the Star Trek series that 'assimilated' other species and were covered in various implants and devices. They were quite evil.)
My PEG tube site got infected about 5 days after the procedure and was incredibly painful. A course of antibiotics cleared it up, but it was really unpleasant. The site no longer hurts but like you, I just hate that its there. I think I'll appreciate it much more when the time comes that I need it.
I guess my point is, hang in there. In the scheme of this illness, and its treatment, the PEG isn't so bad.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | 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 |
Wow did that one go over my head! I guess you can tell, Im not a big Star Wars fan.
Christine 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: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Star Trek, not Star Wars . . . ;-) Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Hi Margaret & Christine Well it looks like we got past the Borg device Now if I can just learn to tolerate it before ignoring it ends me up with an infection like Margaret had Anyway, tomorrow I go to PEG school (aka Borg School) so lets hope I don't flunk out! I really need help with some of these unpleasantly new acronyms. Like; Tx, Dx, T?N?M? IMRT and I have no idea what stage of cancer I have. The doctors are probably afraid I will even ask I guess it is time to stop setting meekly in the doctor's chair like a wounded rabbit and start asking some questions. I was trying to search for other with "Unknown Primary" but not a lot of luck figuring out how to search for compound terms (Unknown Primary = Unknown + Primary??) Instead seemed to get lots of known Primaries and Unknown other thing! I guess in a few day I will be the "old pro" instead of today's "new guy" Don
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | 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 |
Don:
If you have questions about the PEG just ask. It took me a long time to get adjusted to mine. Finally the third formula I was given I could tolerate. Also there are 3 different feeding methods. Ask if you can get the feeding pump. I use it overnight, its very easy. It runs by itself and is slower than the other methods, so its easier to tolerate.
If you are still able to eat. Do it now, eat everything!!!!! Dont be concerned about gaining weight or calories, just eat. Do try for nutritious foods, not just a few bags of chips. After you start treatments it could be a long time before food tastes like it should again.
Under FAQ there is a post of abbreviations that you will find helpful. Im not the best with them either. Dx is diagnosis, TX is treatment, IRMT is radiation, and the T?N??? is something with staging. If you have had a PET scan then your doc should be able to tell you the stage. The lower the number, the better.
Keep asking questions on here, you will get lots of help.
Good luck at 'school' tomorrow.
Christine
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Don, Definitely ask questions! Bring a note pad and write down the answers. If you can, bring someone with you and have them write things down too. Two sets of ears are almost always better than one. Also, don't hesitate to call the doctors when new questions come up. As someone with pet rabbits, and a former rabbit rescuer, I can say without hesitation that wounded rabbits don't always do so well - Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | 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 | Don,
I was almost a Unknown Primary (UP since you like initials) but they were able to find my primary at my BOT and I assume they checked there for yours? I have one comment on the statement made by your RO re treating more areas w/ greater intensity and that is most of us receive the maximum amount of rad they think they can give us during our treatment, primary found or not, so you may want to ask what exactly that statement means.
Tell me more about you. Did tobacco play a role on your cancer? Where are you being treated? Age?
I had mets to 2 nodes and I was told that because of that I was automatically a Stage IV.
As others have said eat like there's no tomorrow because before long nothing will taste remotely good and then you may also have swallowing problems. Avoid using the Peg until you absolutely need it. Keep swallowing throughout the entire Tx. Keep hydrated and get the recommended calories EACH AND EVERY DAY. Do not miss a water or food feeding or it will come back to haunt you.
Ask any question you may have. remember there are no dumb questions....
You are very fortunate (other than the cancer of course) to have hooked up with this site as it will prove to be the most valuable non medical "member" of your cancer eliminating team.
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: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: May 2007 Posts: 132 | Hi Don, I would like to confirm the advice you have been given by the others. I am 3 1/2 weeks into my treatment and am now at a stage where I am very restricted with what I am able to eat and drink - and only half of my mouth and neck is being radiated. I also have weekly chemo (Cisplatin)which I am told amplifies the effects of radiation. I have to say that my whole mouth and throat has been affected, not just the areas getting direct radiation.
Eat all your favorites while you can. I have not lost too much weight - only a couple of pounds - but that has been through perseverence and sheer hard work. I don't have a PEG or a gastric tube and am determined to get through this without a 'borg' - if I can do that without effecting my overall health.
I too don't know what stage I'm at. I have had two primaries = both determined to be Stage 1 (T1N0M0) - but then a lymph node popped up six months after the second primary, with extracapsular spread. I then had a neck dissection, followed 5 weeks later by treatment. I did ask the question but got a fairly non-commital answer from both my RO (radiation oncologist) and my ENT. I think I'm probably Stage 3 but could be a 4. It doesn't really matter at this point. My focus is to get an outcome like David's!
In 12 month's time I hope to be posting that I am 'Cancer Free' and fit and healthy! That's my goal!
Good luck Don! And don't forget to eat and drink whatever takes your fancy while you can!!
Best Wishes
Sue
55 y/o SCC LL Tongue 3/27/07 Part. mandibulectomy 9/2/07 Left ND 5/12/08 RT/Chemo Rec LL Tongue 07/09 Part gloss 8/5 & 8/25 Surg 10/28/09 re mets to R neck & L jaw RT & Chemo finished 12/22/09 PEG fitted 05/06/10 L buccal SCC 10/10 freeflap (forearm)surgery 2/28/11 L buccal and gingiva
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