#82581 10-22-2008 06:34 PM | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | I'M IN REMISSION!! Woohoo. We celebrated by taking a trip to the zoo, going out for pizza for lunch and then eating a fancy dinner tonight! I don't have to see my MO for 6 months - granted I still have to see everyone else every six weeks. And I seem to keep adding to my list of specialists - who needs a general practitioner when you have a specialist for every possible ailment! I posted a little while ago about being dizzy and light headed and such, well, after being referred to an endocrinologist, and then to a cardiologist, I had a tilt table test to see what the heck was going on. Well, the test that was supposed to take an hour and a half, lasted 25 minutes with me (15 minutes were just of me laying down at the beginning getting a baseline reading). When they tilted me upright into a standing position, in about ten minutes, my blood pressure went from a normal 120/65 to 78/52 and my pulse went from the mid 80s to 136. They had to abruptly stop the test because they lost my radial pulse because my bp dropped too low! I'm now waiting to hear back from the cardiologist as to what treatment I'll undergo. I talked to my MO about it today, apparently this is why I have been dropping weight like a rock and why I'm always hungry. My body thinks it is exercising like mad when I am up walking around because my pulse skyrockets - not such a bad deal, right? Haha, seems I hold the secret to losing weight without even trying! My MO said it is very rare to have an autonomic disorder pop up from my surgery (mainly the neck dissection, which they think is the culprit) and he has never seen a case personally and he has never heard of it being caused by my type of chemo before (carboplatin). So I reminded him that I am not normal, basically given my age, and health, yada yada yada, and getting oral cancer. So, the good news is, I am in remission!!! The not so good news is, that I am still screwed up! HA! Hopefully they will fix me soon!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Stephanie, that is the best news!!! I am so, so happy for you. I mean, except for the blood pressure/weight loss part, but, Damn Girl, remission is a mighty fine word.
And also? I can't believe you're eating pizza **sigh**
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | Pizza is actually kind of easy for me except for the ends where it's really dry. I get my pizza loaded up with veggies and I'm good to go! I still can't do super spicy, and that's fine with me. I found a place that makes a good seafood gumbo and it's not spicy at all, so I still get to enjoy all my good cajun food! You had your pet scan today, right???? Or did I make that up.
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | 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 | Stephanie: Wonderful, wonderful news that you are in remission!!!!!!!! You are young and that will help you to overcome any of the nasty lingering side effects. There sure are enough of those out there. Ive had the low blood pressure problem w/ some dizziness too. Chronic sinus problems are another one of the little lovelies that we get. It can take quite a while to get your metabolism back to normal for caloric intake to be regulated again. Personally Im not that upset that I did not gain back 65 pounds. The thyroid is something alot of people w/ OC have after effect problems with. From the info I have been reading, these little issues can plague you for several years after chemo/rad/surgery recoveries. One thing is your great attitude towards the whole ordeal. Its finally over and those problems you described are put into perspective when you think about the rough road you have travelled. Congrats on your terrific news 
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | Thanks Christine!
It's definitely a relief just to hear that there is no cancer. The doctor asked me how I was feeling at my appointment and I said okay, and then he was like, "well, your pet scan says you should be doing really good!" And of course I was doing great after that!
I'm hoping that when I get on the medication for my dysautonomia that my weight issues will regulate themselves since the two are related. I'm also having a thyroid panel done in a few weeks so we'll see how that is functioning.
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | 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 |
Stephanie:
When I read posts like yours it makes my day!
I love reading good news from people who have gone thru tx. Im sure Im not alone with that either. With all the suffering we have gone thru as OC patients, when somebody gets the remission news its like we give a big cheer!
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 | Well, I was supposed to have scans on Monday, with results today (good memory, btw!) but my tongue had other ideas. A few weeks ago, it decided it hadn't had enough mucousitis during treatment and made up for lost time. The docs decided to postpone the follow up scans for a month to give it time to heal and avoid too many false readings. So, I'm on 'hold' for now.
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 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | That's fantastic Stephanie! Pete and Dianne, move over and make room up there for Stephanie. Cloud nine is getting so wonderfully crowded today.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Oct 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2007 Posts: 104 | Interesting about the drop in blood pressure. My husband who was hypertensive prior to his treatment had a problem with his blood pressure dropping into his boots if he was up sitting or standing for any length of time following the treatment. It started after his first dose of the cisplatin and never did get better. He finished his treatment in March and had the problem the remainder of his life.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Awesome news Stephanie. Hopefully they will get a grip on the rest shortly and you will be good to go...
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Welcome to the cloud nine group!!!! There is still lots of room for sure...and we can use all the good news we can get...I am trying to stay away from colds as I am healing and everyone around me has one...so I feel a little like old excentric Mr. Burns and his attack against germs...I have also found that going out in the cold isn't too pleasant right now either all my muscles around the surgery contract and it hurts until warmed up again...
Well these are small prices to pay for the wonderful words cancer free!!!
Do the dance folks do the dance...
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | 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 | What about your TSH levels. Most of us end up with permanent thyroid damage that doesn't show up until months post Tx.
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | Thanks everyone!!!! Unfortunately I'm stuck at home today because my car is in the shop!!!
David- I'll have a thyroid panel run in a few weeks. They said it problems usually shows up at, I think, six months??? and while I'm not at that point yet they still want to check and make sure. The endocrinologist and my MO do not think my blood pressure problems and my pulse are related to my thyroid though because they only change when I stand up, and are perfect while lying down and fairly normal while sitting up. My system just doesn't regulate itself against gravity.
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | 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 | You could have more than one thing causing problems or one thing causing multiple problems.
I wouldn't put to much stock in what they say about the thyroid as each person can receive varying degrees of radiation and therefore damage and each person can react differently to the same amount of radiation even assuming 2 people could get the exact amount of radiation to the same area(s) of a similarly sized thyroid.
Bottom line, my thyroid crapped out in 4 months or at least that's when I went to get it tested so it could have crapped out even sooner. Anyway, it's good that you're getting it tested.
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.
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
