#15711 06-09-2004 05:29 PM | Joined: Jun 2004 Posts: 11 Member | OP  Member
Joined: Jun 2004 Posts: 11 | Dearest Forum Members Who Have Been There, This short story of my experience with Cancer starts when I was 33yrs. old. I had a hoarseness in my voice, and a moderate pain in my left ear. My primary doc sent me to an ENT where I was carefully examined and sent home with more Flonase and Claritin for my allergies and no follow-up required. 3yrs. later I was encouraged to go back to the ENT just in case that "pleasant huskiness" to my voice was more serious than cute. Just how serious I had no idea. When the ENT found the tumor above my false vocal cord he assured me that because I had never smoked or abused alchohol or drugs it was most probably okay. The first biopsy didn't show anything wrong but the doc wanted to get a second biopsy to confirm it was not cancer. He sent me home relieved that he was sure it wasn't going to be cancer. Family, friends, and coworkers were happy for me. The next thing I knew I was sitting in the doctor's office telling him that I didn't have time to have cancer, I had just started a new life, graduated, had a new job, and besides he had said that statistically it was impossible for me to have throat ca (squamous cell)given my profile. I had a couple of weeks to check out all of my options. With my doctor's help I decided on a supraglottic laryngectomy with a direct laryngoscopy, tracheostomy, left lateral neck dissection, and cricopharyngeal myotomy. It was by far the most difficult thing that I have ever been thru, but like they say if it doesn't kill you it will make you stronger. I got to go home from the hospital after about 2wks. My biggest concern wasn't being afraid of choking at first, but it was being afraid that I would never be able to sleep. I had not really had more than a couple of restless drenching wet hours of sleep since about the 4th day after the surgery. Sleeping pills didn't help. I called my doctor and frantically asked him if a person could die from not sleeping. I think that I was afraid that I would stop breathing if I lay a certain way. Relief did come (from a high dose of liquid Ibuprofen)and I learned how to sleep while sitting up. There was ca present in 1/33 lymph nodes so I had to follow up with 8wks. of radiation. That was all 6yrs. ago. I have since had metastasis to my liver and lungs. The liver looks good after resection and lots of chemo. The ca is now in both lungs and the last CT showed that they continue to increase in number and size. I am stage 4. Periodically I have had recurring tumors removed from my trachea. As far as I know I will always be using some chemo. I have tried the study drug Erbitux. (I lasted 3mos. on the Erbitux trial...I may elaborate on my experience with Erbitux later, but I will leave that out of my introduction for today.) The plan now is to get thru each day and accomplish at least 1 good thing each day. Friends have fallen off over the years, my world is no longer the same as theirs. I have grown dramatically close to my family, having many good chances to heal old wounds. I've also made a few new friends in unexpected places and ways that I don't think would have happened if I didn't have ca. I have a whole lot to be very thankful for, and I am happy to finally share my story. I hope that somebody out their can relate. Thanks for reading this,  Smiles, Candle
SSC Larynx/Supraglottic Laryngectomy'98. Max Radiat-'98,'01. Liver resect-'00. Metastasis to lt lung'02&rt lung'04. Carboplatin&Taxol&Ifosfamide&Taxotere'00.Cetuximab'02.Cysplatin&Topotecan'03.
| | |
#15712 06-09-2004 05:40 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Candle,
Welcome to the site and we're glad to have you here. The liver and lung metastesis thing is high on my fear list (I just had a chest x-ray today in fact). I am amazed at your graciousness in getting through this. I am sorry about the new "distants".
Sharing your story must qualify for your "good thing" today!
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | |
#15713 06-09-2004 06:42 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Candle, your experiences put small complaints in perspective. What a courageous person you are! I hope we can connect you with Dinah, who has also experienced a variety of chemo options over the last couple of years. I am so glad you found your way here to share your story. With all you have endured, I am sure you will be able to answer questions if you are so inclined. Welcome! | | |
#15714 06-09-2004 10:51 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Hi Candle, First, welcome to the site, hope you can make even more friends here. This is a great place to find friends and support. Unfortunately your experience with the distant mets is all too common, highlighting the need to get the word out to health care professionals to do a more active screening. We'll all be anxious to here your experience with the Erbitux, which from what I've read does hold some promise in SCC in some cases. Thanks for joining us Bob S.
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
| | |
#15715 06-09-2004 11:21 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Hi Candle,
Welcome to the group and thank you for sharing your story and experiences. My hat comes off to you for being so brave and gracious and puts my complaints from dealing with cancer in perspective. Please keep in touch and let us know how you're doing.
Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
| | |
#15716 06-10-2004 02:10 AM | 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 | Hi Candle,
Welcome and God bless you for all you have been through and for sharing your story with us. Your story has touched me and inspired me. I am sorry for all you have had to face the past several years. I am happy, though, that you have found your rainbows (and pots of gold) through all the storms.
If there is anything I can do for you please let me know. I appreciate you finding us.
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
| | |
#15717 06-10-2004 03:24 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Hi Candle
I was also moved by your story and courage. Please continue to share with us your experiences in that we all learn something and it can help others. Keep up the faith and keep trying.
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
| | |
#15718 06-10-2004 03:54 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Candle,
Thanks for sharing your story with us. It's remarkable that you can remain so positive after so many years of pain and setbacks. You're right that the cancer experience can force us to sort out what's really important in life and cause us to be grateful for some of the things we might have taken for granted before.
Please stay in touch with us.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#15719 06-10-2004 06:08 AM | | Anonymous Unregistered | | Anonymous Unregistered
| Hello Candle,
Welcome to OCF....thank you for sharing your story with us. We look forward to hearing from you in the future. I know you can be helpful to others that come here looking for answers and support.
Take care,
Dinah | | |
#15720 06-10-2004 07:48 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Candle
Thanks for joining us.. your post was just what I needed.. I haven't posted for a while.. in a blue funk about forthcoming surgery and mostly about a trach.. so thanks you have helped me climb down..
take care and look for sunshine around the corner..
rainbows love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | |
| Forums23 Topics18,170 Posts196,930 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
