| | Joined: Dec 2008 Posts: 16 Member |  Member
Joined: Dec 2008 Posts: 16 | Arthur,
Hello in Brazil! That's one place my husband and I haven't traveled. Welcome to the OCF site and as I, you will probably find it more than helpful. There's is so much you can learn from the posts. Plus, there's a whole family of people that are concerned and care about your future outcome.
Wishing you all the best
Brenda Smith
CG to H, 68 yr male, DX 10/27/08 w/BOT, Grade 2, T4/N2/M1 (neck, lung, midsternum) stage 4C/inoperable & incurable at this point as it is considered systemic. Dec 08 - Feb 09 had 7 treatments of chemo (taxol & carboplatin). 9/10/09 DX w/recurrence, MRI on 9/17/09. I STILL FEEL & LOOK GREAT :-)
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | What an ordeal just to get a correct diagnosis Arthur. Your attitude is good and that will help you to be strong. So glad that you have surgery scheduled and I hope that we can all help you through this.
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: 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 | I would definitely ask about getting chemo concurrent with the rad.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | David, These seem to be salivary tumors and the treatment protocol is very possibly different than for our typical SCC.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | My concern is the nodal spread and really pounding the cancer with all Tx's available. I know what you mean and I understand everyone's Tx plan may be different and I'm certainly not an authority but I ask questions so at least they can get answers as to why or why not's. IMO I have just seen too many posters that I FEEL aren't getting the best Tx they could and that means to much as well as not enough so I just try to put myself in their shoes.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Yes sir Dave, I was not questioning your motive. I believe some salivary cancers are not treated with chemo. I don't know for sure either. That is why I posted. We are both in unfamiliar territory.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Jan 2009 Posts: 6 Member | | OP Member
Joined: Jan 2009 Posts: 6 | Thanks for the feedback. I will not see my doctor again before my surgery date, things are different here due to the national health system. Thank God I am actually married to a Brazilian, or this treatment would not be possible.
I have a few questions though. Are mood swings part of this? Some days I'm up and others down, others just restless. Is this normal? I don't know if it's anxiety, fear, nervousness, or what. I've felt, for the past year, as if my battery has slowly been discharging. At least now, i think, I know why. I'll be on the PEG tube, I guess, but I guess that is normal, and a minor concern. With my epiglottis being removed how long can I expect to be on the tube? Am I asking too many questions? Ease my mind, please!
ARTHUR 60 ex-smoker(50 years)
SCC- epiglotis diagnosed 11/2008
salivary glands and lymph nodes.
Surgery scheduled Feb 11,2009
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Arthur,
There are never too many questions!! I can comment on the emotional part, what you are feeling is very normal. It sounds like you have been through an awful lot already. Cancer is a physical and emotional battle. We all have ups and downs, it is very normal. A lot of people take medicine for the emotional battle as well. I just started taking something for my anxiety in September. I have not had a PEG but many others here have and I'm sure they will let you know their experiences.
I wish you luck...I'm having surgery on 2/11 too:)
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Your epiglottis question is one that will have to be answered by your Doc's office.
PEG is sort of optional when the treatment is just radiation because the swelling is not extreme and all the parts are there -- Things become quickly different when surgery is involved because the swelling is extreme and swallowing just can't happen -- Either a PEG or a naso-gastric tube is required to bypass the blocked areas.
In your case, they are apparently going to remove a key swallowing component, the one that blocks your lungs from taking in food particles and developing things like pneumonia. I'm not a medical person, just another victim, but unless they are going to replace your epiglottis with something, it looks like you will need something like a PEG...
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: Jan 2009 Posts: 6 Member | | OP Member
Joined: Jan 2009 Posts: 6 | Hi, it's been almost a year since I've been here, and what a year. I've still not had neck surgery, but I have had surgery for an ulcer 2 days before the sceduled cancer surgery. My heart stopped once in the ER and once during the operation. The doctors gave my wife...NO GUARANTEE... after 4 weeks in ICU, I was transferred to a room and started test on my heart. It was decided that I needed surgery to repair bridges in my heart. Two hours after the operation my aorta ruptured and I heeded about 12 inches replaced. Total 10 hours surgery. I was given 48 hours and the probability of neurological damage...not... I finally came home in May and was in and out with lung infections and double pneumonia, my wife was told I would not last the night...I DID. I was being fed through a nasal tube and losing weight. I got to under 100 pounds. Finally, I told my wife I needed more calories and started eating soup and spaghetti. Now I'm up to 110 pounds and still eating. I am doingt radiation therapy which should take about 6 months and did 1 chemo treatment back in june. It really helped reduce the size of my salovary glands. Overall, I'm blessed, relatively healthy and happy to be alive I didn't expect to make it.
Thanks,
Arthur
Last edited by arthur; 01-05-2010 06:58 PM.
ARTHUR 60 ex-smoker(50 years)
SCC- epiglotis diagnosed 11/2008
salivary glands and lymph nodes.
Surgery scheduled Feb 11,2009
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