| | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Oh Eileen...This is unbelieveable. I am sending white lights and positive vibes your way, also praying... My mom's lymph therapist did a lot of amazing work with ladies who had had breast ca. She is right in Langhorne, by Oxford Valley Mall. Having worked for her for a stint I can tell you most surgeons were setting there patients up with appts immediately. To hear that this was probably caused from rt is deeply disturbing. I am so very sorry. My aunt had breast ca and told us then that she thought it was from all the xrays she had when she was younger. She was never certain. Eileen, you will be in my thoughts. much love and hugs to you. Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | 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 | So sorry that you are having to deal with all this crap.
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: 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 | Eileen, best of luck the rest of the week with your appointments and procedures. You are so right that it just isnt fair!!!!! Especially the part about the cancer being from scatter radiation from your head and neck rad treatments.
Ive heard about the treatment you wrote about. I read an article about the trial where it uses a persons own cells to target their cancer.
Hope everything works out for the best and you can get to the shore for a much needed rest.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Eileen, I'm so sorry for all your problems. It's just not fair! I hope you can do some recuperating at the beach. I'll be keeping you in my prayers.
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Eileen,
You are continually in my prayers. Have hope and fight like hell! - Love, Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Sending lot�s of good vibes for both days Eileen.
Good luck for the procedures and tests.
Gabriele
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Geez, I don't believe I didn't post anything after I had the stent put in, but then I only worked two days last week and this. New stent is working fine and they only almost killed me twice, once when the doctor said I needed oxygen and the kid proceeded to put it on my nose and couldn't figure out why I was struggling against it (I'm a neck breather) and once when they were trying to get the artery to clot and put too much pressure causing my BP to drop to 60/33 and me almost pass out cold. It's called vegalizing (sp) and I have no clue how dangerous it was. Liquids reversed the problem but dr did indicate it might have been the reason I felt so wiped after this procedure this time. Results of MRI biospy not good. Hopefully much of it is false positives. Less than 1 cm on right now shows as 7 cm and it also shows possibility of something less than 1 cm in left. HER2 test negative so I am Triple Negative for this disease. Now I know how you folks who don't drink, smoke, and are HPV negative feel. Surgery is tomorrow the 15th at some unknown hour, lumpectomy on right, surgical biopsy on left. I asked for afternoon because I have a lot of mucous in lungs in the am. So naturally they scheduled it for first thing in morning. Dr.'s nurse was going to try to get it moved but it is hospital policy to do these first thing in the morning regardless of the patients problems. I will be under a local but will be out cold so hopefully they get the oxygen right this time and have a someone who knows how operate a suction machine. If they kill me, I told hubby to 'sue the pants off them' and donate proceeds to various animal funds. I guess I better add OCF to that list. I plan to take Friday and Monday off also so will try to post next week when I return to office. Take care, Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | 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 | Eileen, Im sorry to read about the errors the hospital did to you. Tomorrows procedure will go smoothly. They already messed up enough! Please post an update when you get thru this. Or have your husband post one tomorrow for us. You have been on OCF for a long time and are well loved here. We all worry about each other around here. I will keep you in my prayers.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Christine has just said it all Eileen!
Will be thinking of you and all that you are going through tomorrow. Your sense of humor is still in tact and will be looking out for you or your husbands post on the outcome.
Love
Gabriele
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Eileen-
Thinking of you...
Thanks for the email; I was so concerned.
Love,
D.
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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