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Joined: Jun 2007
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Joined: Jun 2007
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I went from "We got it all and no rads or chemo needed to you need rads and chemo plus" I agree it is a shocker, but a necessary one. Yes it will take a lot longer to heal and you will be miserable if you let it happen The best I have found is to remain upbeat and fake it to others if you have to, but keep a good mental outlook and be positive. Hell, I even had to lose my teeth and get rad seed implants that seem to never heal any, but I am alive and as mouthy as usually I was. LOL Yes I get spells where I think , is this worth it? Then I think , do I want to see this lousy rain and hear that thunder anymore? Heck yes I do just like the beautiful sunny mornings and grandkids , the rest of the family and my friends, Yep, it's worth every ounce of the pain and I will continue to fight for as many years as possible. Jim I have you in my prayers and best wishes.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 5,260
OOPS,, JIM is me not you. LOL sorry about that.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Jul 2008
Posts: 507
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2008
Posts: 507
Bloop,
Are you being treated at a major Cancer Center such as the Mayo Clinic in Phoenix? If not you should consider being seen by one - at least for a second opinion and their review of your proposed treatment plan, facility and doctors.

I recommend you ask questions now about your treatment plan including the upcoming ND. Is it necessary and why, what kind of ND are they planning, probable short and long term side effects, etc...

These days many people having chemo/radiation can avoid needing a ND. The chemo can adequately shrink the cancerous lymph nodes so that the radiation is effective.

Other times a ND might be required due to the size or location of the affected node(s) and need to assess advanced staging for treatment planning (such as extra-capsular invasive spread), but a 'Selective' ND where only cancerous nodes and surrounding tissues are excised is often adequate with less side effects.












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: Sep 2006
Posts: 8,311
Senior Patient Advocate
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
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Tell us more about your cancer like where is your Primary? Are/were you a tobacco user? Check out your cancer's possible link to HPV.

Before I would allow a ND I would get other opinions and preferably from a CCC.


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: Aug 2007
Posts: 1,301
"OCF Down Under"
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Joined: Aug 2007
Posts: 1,301
Bloop,
I am a little confused as this is your 2nd post.
It appears that you started the first one in June under Indroduce Yourself/New Patient. You had lot's of replys there including one from me.
In the June post you say that a biopsy confirmed SCC.
The reason for my confusion is wondering what has happened between June and September confused


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: Nov 2008
Posts: 72
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Nov 2008
Posts: 72
I have recently had a bilateral neck dissection. I post all pictures and stories on blog www.remissionorbust.blogspot.com

Good luck!


*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!



Joined: Jun 2009
Posts: 138
Senior Member (100+ posts)
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Joined: Jun 2009
Posts: 138
Not much of anything happened between June and September because the ENT ignored me when I said I had a lump in my neck. Then my primary sent me for an ultrasound and I took my time getting it because I was getting a mammogram too and I had to wait three weeks so I just did them together. The ultrasound came back bad so I called the ENT back and said, "Remember the lump you said was nothing. Well an ultrasound says it's something." So he had me come back and did a needle biopsy and I have now had a neck dissection - October 2nd. I now have an appt. Nov. 5th with both a radiation oncologist and a chemo oncologist. I will need 7 weeks of chemo and radiation from what I've heard.


BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
Joined: Jun 2009
Posts: 138
Senior Member (100+ posts)
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Joined: Jun 2009
Posts: 138
I am assuming the tumor under my tongue is the primary cancer. I had a PET scan and no other cancer showed up anywhere in my body. But that tumor spread to my lymph nodes and is apparently very aggressive now. I feel like if I had never had that tumor removed it might have stayed dormant for years. I did smoke, but I quit 10 years ago.


BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Bloop. it sounds as if you and your Drs took this too casually. It's time to fight this stuff by being very serious as it should have been from day one. I have youin my prayers and am sending you a couple of my angels to keep you alert to what is going on. Good luck and remember this is life or death. If need be, change ENTs. Jim


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Aug 2009
Posts: 90
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2009
Posts: 90
Bloop, this is why we have to be our own strong advocates. I'm assuming you won't need that ENT anymore because you're being promoted to dealing with the oncologists, head and neck surgeons and R.O.
I think we've all had to learn the hard way not to accept"it's nothing" it's not cancer" even though scans, symptoms and swollen lymph nodes are present.

Right now you just need to recover and heal from surgery and prepare yourself for the next step. Buff up nutritionally and get some extra calories on board. I found the Magic Bullet, a tiny but powerful blender to be my life saver in making smoothies and other foods. I blended everything in sight in that gadget and it comes with plastic containers with lids so you can store the potions. I think it cost $50 but well worth it.
( P.S. I don't work for the company)
Good luck in the weeks ahead,
Nancy


caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
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