| | Joined: Jan 2009 Posts: 97 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 97 | Hey Linda Rose,
The lifestyle sounds PERFECT, I try to spend a couple of months in the Glaciers Wilderness of the Cascades every year in my portable "Dome Home", there is no way to get a motor home in that far.
Now, don't get me goin about spit! However if you must, have a look at "Hey lady, do you sell spit?" in the blog section. There you should find a few ideas for humorous disruption of the medical establishment, having fun messing with their heads was great a great distraction for me.
How far out are you? Is commuting going to be an issue for you?
Anyway, I bet those doctors don't have a clue whats coming and I hope you keep us up on the antics.
Be well,
UncleVern
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | It is difficult to spit without a tongue!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Feb 2009 Posts: 19 Member | | Member
Joined: Feb 2009 Posts: 19 | Pete, You folks are certainly giving me an education, FAST, here! Thanks. Then, I read the posts from Uncle Vern early early this morning, and realized that sometimes you have to buy the spit! And I was worried about not having a tongue! Maybe Mountain Mama will have to re-think those front porch games. Now, I'm not sure that I should have joined this site or not!  Ignorance is bliss, you know. Joking aside, I thank God that I found this group.
Last edited by Linda Rose; 02-21-2009 06:17 AM.
1998 1 Amalgam replaced->oral lichen planus R lat tongue; 1999 biopsy "no cancer-looks like uses smokeless tobacco"; 5/08 allergy testing pos to filling & crown metal; 9/08 replace amalgam fillings; 1/09 Partial glossectomy; 5/09 total glossectomy & free flap; rad & chemo just completed.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Linda...I couldn't agree more. Sometimes we just have to laugh but I have to admit crying is good too!! If you don't, you may end up having a panic attack like I did...boy was that fun!! I went to the hospital and they said you are fine...you're just crazy..lol They didn't really say that:)
I think the Moutain Mama persona sounds great...we sure can have fun with that!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | [quote=Pete D]It is difficult to spit without a tongue![/quote]
But not impossible - I can do it and I remember how proud I was when I accomplished it the first time!!
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Feb 2009 Posts: 4 Member | | OP Member
Joined: Feb 2009 Posts: 4 | Thank you. You are in my thoughts as well. yes actually, Dr. Ferris did my original surgery. I now see Dr. Larisa Greenberg at Allegheny General. So far I am tolerating treatment fairly well. | | | | | Joined: Feb 2009 Posts: 4 Member | | OP Member
Joined: Feb 2009 Posts: 4 | Sorry for the late response. I see Dr. Larisa Greenberg at Allegheny General. I did start at Hillman, but switched jobs and insurance. | | | | | Joined: Feb 2009 Posts: 4 Member | | OP Member
Joined: Feb 2009 Posts: 4 | Hi David. I am 39 and never used tobacco. All of the virus tests are negative. They are calling it a genetic anomoly, so they are being a little more agressive with treatment. I had my second of three cisplatins on Monday and so far, yesterday was my only really bad day. | | | | | 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 | My 2nd wasn't to bad but by the time I got to my 3rd it wasn't pretty. Watch out for the ringing in the ears (really didn't sound like ringing to me but if you ear anything in your ear other than outside noise, let your doctor know immediately as he may opt to switch you to Carboplatin for #3). We definitely do see some that aren't tobacco users and don't test positive for HPV and they are all over the age spectrum.
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.
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