| | 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,
Make sure and keep hydrated. Maybe even move towards the gatorade type electrolyte products, especially with summer coming on. Don't forget you are truly one of my heros! I wish we didn't have so many miles between us or I would walk literally by your side through your treatment. I know the room will be full of people and full of love and of course, full of loving spirits of many, many people. Praying especially for comfort and peace for all of you.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Minnie, Add me to the list of people that keeps you in my prayers. I can understand the fear (I was very scared of the chemo part of my treatment too) but I'm also glad you have a plan because being in that gray area where you aren't sure what to do can also be very hard.
I'm sorry this is chemo that will cause you to lose your hair. I thought originally the cisplatin would do that to me and ordered some chemo hats and scarves because I thought wearing a wig would be awfully hot and itchy. I actually still have them (I've been meaning to take them to the breast cancer alliance in our town) but if you want them, I'll send them on (I never wore them because I didn't lose much hair so they're brand new). Just mail me your address if you want them.
I hope you handle the chemo well. Make sure they give you the really good drugs for controlling nausea, like zofran, right away. Don't let them tell you compazine might work and go through trying it, and finding out it doesn't first (can you tell this is what happened to me<grin>).
Actually, I'm sure since you're being treated at Johns Hopkins, that won't be a problem.
I'll be praying for you and your family. Please keep us posted about how it's going when you get a chance.
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Minnie,
My mom needed the zofran also, as the compazine didn't help at all. She only had two days of nausea-thank goodness.
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: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | Minnie,
I have been wondering about you. Sent you a PM but I bet your
box is full of them!
Please tell us everything, I know we all want to be with you. You must remember, I am in Virginia and I have always wanted to meet you. If you need me, I am there. I feel how scared you are. I get that way deep down in the gut. But you are so strong and have so many people who love you and pray for you.
May the road rise to meet you and the wind be always at your back!
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Minnie,
You are constantly in my prayers and will continue to be until you get those wonderful words, "cancer free"
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Minnie
You are in my prayers and thoughts and I also satnd beside you during this .. You and your wonderful family !! Please know that I as well as MANY MANY others are here for you ..and I have the utmost faith that you will Once again here those words ...cancer free !
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Nov 2006 Posts: 39 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2006 Posts: 39 | Minnie,
Keeping you in my thoughts and prayers that you will remain strong and confident through the chemo and that you will recover quickly as well as cancer free!
Laura
Laura T T2NOMO Small Salivary Gland Cancer
| | | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | Minnie,
I am praying my best Irish prayers for you. Keep strong!!
God Bless You.
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Minnie,
May you be blessed with a complete recovery. Don't let the fear of the future rob you of the good days you are enjoying with your family. May you continue to celebrate their milestones in good health for many, many years.
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: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Minnie, I am thinking of you and praying for you.....Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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