| | 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 |
Lani:
I hope you are able to check in often. Your OCF family will worry if we dont hear from you.
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: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Just to update on my possible heart problem.
I saw the cardiologist on Tuesday and he did another EKG and talked to me about my medical history and that of my family. He was surprised to see how far down into my chest my rad treatments went and is concerned that the radiation may have adversely affected my heart and/or the vessels to it. I have an echocardiogram scheduled for Monday morning, and a nuclear stress test a week from Saturday, the 15th.
It still hurts like a son of a gun - especially if I try to stand up for more than a couple of minutes, and I'm still taking the pain meds to see me through until we can fix whatever's wrong.
Thank you all for your caring and sharing. It means a lot to me. As much as I try to make light of it, I've at times been pretty scared.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Lani,
Whatever it is, at least it isn't a looming any minute now disaster. That you aren't having the echocardiogram until Monday and the stress test even later indicate a non-emergency state. I hope that they find the source of the pain and are able to give your relief.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | 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 do you mean "how far the rad Txs went into my chest" ?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | David,
My pinprick-sized tatoo that shows the lower boundary of the radiated area is about 3+ inches below my collar bone. The cardiologist is concerned that the effects of this exposure may have caused a blockage to the heart to form, I think either by scar tissue or constriction, but until the tests I'm a little shaky on the details. I'll be full of questions for him after he see's what's what.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I have never heard of the radiation beam aimed that low.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | David,
My cancer started on the right underside of my tongue. The first surgery was to remove that, and the cancer was very noticibly back less than six weeks later. That's when my first ENT surgeon gave up on me and sent me to the local RO, who said I was too far gone for them to handle here. Thank the Lord he knew my RO at Shands and got me in to see him and his team 3 days later.
By the time of surgery #2 it had spread to the floor of my mouth and into the upper portion of my jaw, and when rad/chemo started 4 weeks later I had two very large lumps in my neck - one on each side. It was moving incredibly fast, and moving south.
I already had a history of bad/weak/vulnerable lungs with a lot of scarring, and they already were showing troubling signs. I believe the upper portions of them were included along with my trachea & esophogus, etc.
I only joined this site a little over a month ago and have many questions now for my RO that I didn't even know to wonder or ask about then. I do NOT question anything he did, but I just can't answer some questions others here might ask me and I am now curious about. I trusted him completely and was right to do so, but I was so incredibly terrified and got so very sick that a lot of that time is somewhat of a blur to me.
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Hi Lani, on the "shark bite capital" side of the state from Jane, on other side of our state! We are sooo sorry to hear you are having all that pain but are praying that the natural "fear" that this generates is worse than what the problem turns out to be. It could well be from the strain you put on yourself during that medieval cottilion (sp?). Please keep eating the most calorie laden stuff you can put together - that peanut butter - chocolate shake sounds perfect - so you keep your strength up. Maybe one of these days, we will all meet at Shands and can get a rich dessert at one of those zillions of restaurants Gainesville has to offer! Hugs and keep all your OCF friends informed. Blessings....Jane and Dick
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Hi Jane & Dick, It's good to hear from you again, and hugs and Blessings are always welcomed. When I talked to the cardiologist's nurse about scheduling my tests, I asked if there was anything I should take as a sign to get to the ER before then. She said, "Well certainly if you have any chest pain...." Forgot to look at my chart, I guess. When I told her that I'm always in pain, on pain meds, and that's why I came in to begin with, she moved the echocardiogram up to this Monday am. She couldn't move the nuclear stress test up any sooner, but she said the Doc should be able to tell a lot from the echo... one. I'll be at Shands about my soon-to-be-I-hope teeth Nov 20th, to see my RO Dec 8th, and to see my lung doc on Dec 16th. If you're going to be there any of those days I would love to meet with you. I usually hit Shoney's whenever I go to Gainesville because of their buffet bar - always mashed potatoes, gravy, meat loaf, and lots of other stuff I can eat - but I've gotten pretty good at finding things on almost any restaurant's menu. I wonder if they serve gator there? (For those who don't know, Gainesville is the home of the UCF Gators many-times champion football team and the whole city is pretty obsessed with them.) 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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Umm, UCF? Or UF?
As I recall, UCF is in Orlando, NW of USF in Tampa.
BTW, 'gator tastes good!
I went to USF at night and my daughter went to UF, among others.
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.
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