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#21593 11-27-2006 06:16 PM
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Hi everone;
I thought I had made an introduction earlier but I was in my profile tonight and did not see it so a little late but here it goes.

I was diagonosed in January with base of tongue/floor of mouth Squamous Cell Cancer after sporting ear aches/and a lesion for several months and two negative biopsies. I was seeing an oral surgeon who would not give up on trying to get me better. Since the biopsies were negative he was treating me for Gland stones which he said sometimes will cause lesions. In January '06 he decided to clean the lesian and stitch it up to get me some relief. He said while he was in there he was taking a couple more deep biopsies "just for insurance". Thank God he was relentless! He had me right back in the office with "the news".
After two opinions that were almost identical I had a neck dissection in February on the right side with removal of 25% of my tongue, floor of mouth, tonsils, and right side saliva glands & lymph nodes. My ENT told me the margins were clear, one was questionable but within a comfort zone for him, and he would suggest no radiation, chemo at that point. (he doesn't seem to be a big advocate of radiation)
Everything went well enough and I recovered very good. Got back to work, was eating very well, basically back to normal.
Then, in between follow up visits I starting getting that familiar soreness and spasms in my tongue again. I went back to my ENT who was very glad I responded immediately. He scheduled me for an outpatient biopsy where he could put me out and really get a good look while taking a biopsy. The biopsy was negative but my ENT wasn't satisfied with that. (another blessing) He referred me to another ENT in the area, who is also an associate professor at our University.
My new ENT scheduled a PET/CT which revealed a new tumor on BOT, now on both sides. He suggested that we proceed with Radiation & Chemo prior to another surgery. (He said that my next surgery would be a "real one" and we should try to resolve this with Radiation and Chemo first)
So just prior to Labor Day I embarked on a journey of 35 IMRT and 3 x Cisplatin. I finished up treatment the third week of October and my doctors seem "positive" thus far with what they see. I recently cancelled a visit with my ENT because I was so sore and "burnt" that I could barely open my mouth. My RO told me there wasn't any use to see my ENT again until he could get a good look in my mouth, plus they meet weekly and discuss all patients. My RO also told me that they would not do another PET/CT until January due to the residual effects of the radiation. I've now lived so many of the things that you all share on this site and it has been great to learn about many of them prior to running up against it.

It is a pleasure to be part of this awesome group of people who have a great amount of courage and compassion to help others.


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

#21594 11-28-2006 03:56 AM
Joined: Sep 2006
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Steve,

Hang in there and lets hope the chemoradiation did the trick. We were all anxious before our first post Tx scan, especially after the scan and before the results are told to us. I don't know why they just can't call us as soon a they know the results. Why the additional torture?


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.
#21595 11-28-2006 08:42 PM
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David, I'm not dead sure about this, but I believe in some states they are not allowed by law to give results over the phone, etc., but only in person.

Pete


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.
#21596 11-29-2006 04:18 AM
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Pete,

I'm sure a Doctor/State Representative sponsored that bill!!


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.
#21597 11-29-2006 06:20 PM
Joined: Oct 2006
Posts: 383
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Well, what a positive visit with my RO today. He felt very "encouraged" with what he sees and feels thus far. He is also happy that my weight loss has stopped (exactly where I was 3 weeks ago) and very pleased that I'm pushing through the pain to try and experiment with different things to eat. (so far it's a few eggs and soups, but it's a start!! last visit drinking water was still a struggle and he said he wanted to see me immediately if I lost another pound.) He wants me to focus on some exercise such as more walking to build up my stamina. He scheduled me to see my ENT in three weeks for another viewpoint at this time.
I have some new hope this evening!!


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

#21598 11-30-2006 03:53 PM
Joined: Apr 2006
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Hi Steve,

Well you sound better and that's great. Pretty amazing what a positive visit can do. Completing treatment and making it through that immediate "it's getting worse" period is a huge milestone and I want to welcome you to the other side of recovery. The fact that your weight has stabilized is excellent and you will build up your stamina again. Walking is how Jack started out followed by short bike rides. At first it was just around the block but little by little he increased what he could do and so will you.

In addition to the eggs and soups, try custards, protein mix shakes with ice cream or yougurt, puddings, casseroles, things from a crock pot, souffles, stews, cottage cheese, pureed dinners, and more ice cream. Your body will tell you what works and what doesn't but don't be afraid to experiment. David has found a good high calorie shake that he's pleased with.

Don't forget to keep up with your mouth stretching exercises to prevent trismus. If you already have that the therabyte jaw exerciser works well.

Onward and upward. You have reason for that new hope.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#21599 11-30-2006 05:35 PM
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Hi JoAnne;
Thanks for the encouragement & suggestions. You are correct, The eating is all about experimentation. I can eat a few bites of cottage cheese, and I managed a little bit of cereal that softened in milk, but anything else I've tried with milk sets my mouth on fire. (Including Yogurt & Ice Cream - Boo Hoo! Strange, but thankful to be eating so soon) My wife bought me a variety of instant puddings but I haven't gained the nerve yet.

I am not familiar with the therabyte exerciser. Is it an OTC thing or prescribed? My RO did suggest yesterday a speech therapist for mouth exercise and therapy. He said my ENT could set that up as long as I felt OK with it. (I think he could tell that I was kind of like "am I talking that bad?") There again, just a couple weeks ago I was using a dry erase board to communicate??? (how soon we forget) He reassured me that things would continue to loosen up and improve as long as I "exercise" my mouth and continue to eat and swallow frequently, but he feels a therapist could help a lot in my efforts there. (I would entertain comments, feedback about utilizing therapy as it wasn't felt to be needed after my surgery in February)

Yes, you are correct though, the other side of recovery sure helped my attitude today! (Plus, what a feeling to come home yesterday & "high five" the kids) Now to build on that momentum!

Best Wishes to your husband & self.
Thank You,
Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

#21600 12-01-2006 03:15 AM
Joined: Apr 2006
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If you are having trouble opening your jaws, you do need to begin now to gently force them to open. You can begin by doing it yourself, with "jaw power" and also with your hands. I could not open my mouth wide enough to allow a spoon to pass at first, and my surgeon warned me that I needed to begin to work on it before it become a permanent problem. He ordered the Therabyte (very simple device, but very expensive....covered by insurance when prescribed, but available without prescription--search on the internet for information...They have a website) and until it came in, I worked on opening from time to time all day long.....I still do at one year. Check with your surgeon to be sure that there is not some medical reason to wait for this exercise, but you don't want to wait too long. My surgery was in January also, but I didn't have the radiation that you have had. I see that you express mostly problems with eating because of the radiation and not with trismus, but if you have difficulty physically opening your jaws, then you do need to ask...now...about exercising them.

Take Care.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
#21601 12-01-2006 03:20 AM
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My favorite when I was trying to eat again: mashed potatoes--plain or with a little gravy!! How wonderful to have something that tasted like FOOD and wasn't sweet like all of the puddings and liquids. Potato soup is wonderful too..very soothing. Someone brought me some black bean soup.....so ugly looking and so absolutely wonderful!!.....I, too, even without radiation, was and still am very sensitive to spicy foods, but the potato and bean dishes were very soothing.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
#21602 12-01-2006 05:22 AM
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Steve,

I was able to eat Chicken POT PIES when I was about 4 or 5 months out from treatment. The cheap ones, they are small. Keep that in mind when you are able to eat a little more.

I know I was so happy to be able to eat anything. So happy for you as well. I can not eat spicy foods or use pepper.

Take care,
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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