| | Joined: Feb 2008 Posts: 341 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Oh Minnie - our heart goes out to you. I spent a couple of hours reading your website last night and what an amazing family you have. It seems you are surrounded by so much love. We are praying for you and your amazing daughters.
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!
| | | | | 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 know we're all here for you and I hope your docs come up with a great plan.
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 | Minnie:
My heart goes out to you and your family. It sounds like you have a wonderful, competent doctor taking care of you. My ENTs name is also Dr Koch, what a coincidence. The gameplan sounds very encouraging. You are in my thoughts and 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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Sometimes I wish there was a fairy godmother who could wave a wand and make all this disappear but then life would be so boring. I thank G-d that daily there is more and more that can be done if not for now at least for others in the future. In the meantime, I wish you a positive outcome with the proposed surgeries and an easy healing.
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: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Minnie,
I just had a scan and they gave me a disk too. I did not look at it because I knew I would scare myself to death just not knowing what to look for. I keep it with my records.
Please let us know what you find out. I will be thinking of you. As Malka says, just put one foot in front of the other when it is tough.
Thinking of you today
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=minniea]Hi Everone,
I can always count on this board to come out in droves when I need some inspiration! I haven't posted much lately because I've been busy and because I just needed a break............but I'm back and need your support again.
My doctors appointment went pretty well, I really love Dr. Koch, he's takes the time to sit and talk to me and never makes me feel like a "patient". And he gives it to me straight, which is how I like it. He feels I have a new cancer on my thyroid, one that is not related to my previous cancers............go figure. God must think I'm one strong person! This would explain my voice being so raspy and weak for the past 10 days or so, we thought I had a lingering cold. He also feels the node he's been watching since Oct. needs to come out. So, I'm having a CT scan with contrast done on Tuesday to get more difinitive sizes, locations, etc. and then he'll make a game plan. Looks like surgery for both areas. I just pray that I heal well after the surgeries, I have so much going on right now. I don't want to walk around looking like frankenstein. My daughters prom is the 25th and I'm pretty sure nothing will be scheduled before that. Last softball game is May 1st, so I won't have to miss to much. My girls school gets out end of May so the timing is good.
Thanks to all of you for writing, it always makes me feel stronger.
Love to all,
Minnie [/quote]
Minnie,
I am so sorry to hear your news and especially to see you and your family having to worry some more. Keep in mind that the risk for thyroid cancer after radiation is pretty high and I will especially pray for this. It sounds so stupid to pray for cancer but thyroid cancer from radiation is easily treatable.
I have had the raspy voice for 3 weeks now, tests for strep and all negative, spent 2 hours in an MRI yesterday, have PET coming up Friday and I think my wife working at the cancer center has proven to be more of a burden for me of late! She even had my oncologist calling my mobile phone to order me to come in and get it checked out. The ENT stuck his funky scope up my nose and examined the vocal cords and everything. Clean bill from him, although pretty high!
Now that my Kansas Jayhawks finally won a championship again, and on my BIRTHDAY last Monday at that, I aint gonna let nothing worry me no more!
I think of you every day and I will always pray for you and your family every day!
May your burdens be lessened, may your yoke lighten and may His love fill your heart always!
YBIC,
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Dear Minnie,
I have emailed other thoughts and won't repeat them. It sounds like you are gonna come out of this fine, though I am sorry that you have to go through it.
I had a "cold nodule" on my thyroid many years ago. They couldn't definitively say that it wasn't cancer, so I had surgery. (I had had radiation in childhood as a treatment for swollen glands! EEK!) I recall that at the time of my surgery, I was told that even if it were to be cancer, I would "die WITH it, and not OF it."....In other words, unless left totally un-treated, thyroid cancers are curable and that I would die of something else eventually (of course) but not of the thyroid cancer.
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!
| | | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Minnie,
You amaze me! The strength that comes through in your words...now that's inspirational. Keep positive, you'll beat this too.
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: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Minnie: What a hero you are to all of us! Needless to say, our thoughts and prayers are with you...
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Damn Minnie, life just won't cut you a break. At least if it is only thyroid cancer, they take it out and you are synthroid for the rest of your life. Very tiny pill so easy to swallow. Can be tricky to get the right dose for while but they should have your baseline from before radaition.
Here's hoping that is all it is or better yet, none at all.
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
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