#73633 04-24-2008 11:30 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Everyone,
Again we've been kind of blindsided. My doc at Hopkins had his people read my PET and CT and they feel there is another spot in the back of my neck that the radiologist here didn't see. So, now we're up to five areas. My doctor is suggesting some chemo first before surgery to try and shrink the ones far back in my neck so they will be easier to reach during surgery and it will cause less damage to me. He is very concerned about me losing anymore function. He hasn't hinted at nor even started a conversation with me about this being the end or that it was time for me to consider letting it takes its course and I have told him all along that i wanted to know if that time ever came. He is positive and encouraging with me and feels I stand a good chance to get this under control. I go May 1st for the biopsy's and we will set a definitive plan.
Been a rough couple of days............getting the new scan reading, 3 year old grandaughter in ER on Wed for dislocated shoulder, 18 month old in same ER for two stitches in her lip from a fall AND it's my 17 year olds JR/SR prom on Friday and I volunteered to take pictures before I know about all of this new cancer crap. Busy day tomorrow, hair appt. at 12, make up appt. at 2, picture taking session at 5 then off to the prom in a really cool limo that a bunch of them rented. She's so excited, the boy she wanted to ask her did, he came to the house with roses and candy a few weeks ago to ask her if she'd go with him. I might be "sick" right now but there sure is alot of living going on around me that I'm such a part of!
Take care,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | {Minnie} <--that is a cyber hug. Not as effective as the real thing but the best I can do.
I'm so sorry about the Hopkins news about another spot--but so glad you have those doctors who found it! And glad that your doctor is obviously still believing there is a good amount of hope your battle will be a winning one.
I also love that in the middle of all this you are so involved in everything going on with your family and will be going with your daughter to her prom (the story about the boy asking her is so sweet).
It's amazing how life can be so sweet and so scary and sad all at the same time. All you can do is drink it all in as it comes and you are a wonderful model for how to do that. You're in my thoughts and prayers as always.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Minnie- Enjoy the craziness of the prom preparations. it will hopefully take your mind off of things for at least a little while. It sounds like your family is very active as is mine and that kind of helps. Hang in there.
Sue
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: 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 | Minnie,
Your at the right CCC to beat this cancer for the last time.
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: Feb 2008 Posts: 341 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Minnie you are so strong and I, like the others, think that comes from all the living you are doing with your family.
Thep prom story sounds so fun and brings back memories. My boyfriend didn't ask me that sweet of a way, but we did the whole hair, make-up, limo, etc. with friends. I can't believe that was 17 years ago.
We will keep on praying for you.
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: 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 | Minnie, I'm truly saddened to hear of more less than encouraging news. Know you are always in my prayers. Since I dropped out of high school in the 10th grade, I will live vicariously through your family. After all, we are such great friends, you know  ! Be sure and let me know what I missed out and ppppllleeeaaassseee don't leave out ANY of the details!  I especially want to thank you that you took my advice years ago, MAKE THE MEMORIES! Even without battling the beast we really never know what tomorrow brings and if we waste even a minute today, we will never get that done. I thank the Lord often that our paths have crossed and look forward to being your friend for quite a while. 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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Oh, Minnie, so bummed to hear that they found more but be glad that the DID find them. Enjoy the prom and then get down to the business of beating this hopefully for the last time. You can do it.
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: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | My dear Minnie
I am so sorry to hear your news and send best wishes for successful treatment. It is wonderful that you are surrounded by so much love - an example of 'you reap what you sow'.
Thinking of you, with love from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | Joined: Nov 2007 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 27 | Minnie,
I will be praying for you as you go through this next challenge. Cancer does have a way of changing your plans without you being able to catch up. I know the doctors have this under control and whatever their plans are are just what you need.
I hope you really enjoy this prom time with your daughter. What a special time it is!
You are a super strong person and you know that you have a Father in heaven who will see you through.
Your Virginia friend just down the road,
Cindy
SCC of tongue removed 3/07 mod. left neck dissection. Tumor reappeared 6/07. Removed 8/07, right neck dissection, free flap from wrist for tongue graph. Radiation 30 (IMRT), chemo cisplatin 4 rounds finished 11/07.
| | | | | 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: Im sorry to hear you have more bad news. It sounds like you have some wonderful doctors. Its good that this was found now before your treatments started. Your daughter must be thrilled to be going with the boy she wanted. It was a very nice way he asked he too  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 | | |
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