#72422 04-04-2008 12:48 PM | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
It all began around this time last year. I had been feeling ill for weeks and last June got the dreaded 3 words "you have cancer". I went thru the operation for the PEG tube and port. Had three teeth pulled and then started the awful treatments.
I suffered thru treatment after treatment. I saw doctor after doctor, the appointments never ended. Lost 60 pounds due to so much trouble keeping anything down. It took 2 months before I got accustomed to the night time feedings. I endured the mouth sores, mucous, insomnia, fatigue, diarihia (cant spell), dry mouth, and couldnt talk for 3 weeks. I was so sick that I threw up dark green bile and my 17 year old son had to push me in a wheelchair. I was too weak to even walk. My doctor admitted me to the hospital just by looking at me.
My teeth are loose and crooked, per my 2 dentists and 2 oral surgeons they cant be saved. Radiation has ruined the ligaments that hold my teeth and dry mouth has caused them to start to rot. Next step was to be hyperbaric treatments then pull all my teeth and get dentures.
Last month when I heard from 2 different doctors that they would keep an eye on my new sore, to me I thought that wasnt good enough. I called my oral surgeon who took me immediately for my requested biopsy. In my heart I felt that it was back, not because I felt sick, just somehow I knew.
Today I heard those 3 little words again "you have cancer". The official diagnosis is SCC, well differentiated in the buccal mucosa (left cheek). This is a never ending sickness that just wont go away. My pet scan in Jan gave me the all clear and now at only 6 months post treatment, its back. I havent even recovered fully from the first time and now its round 2.
This time around I know what to watch out for. Ive been thru this and beat it once but it sure doesnt make it any easier to know I have to do it again. So now I must try to gain weight, since I only have about 10 pounds to lose before I am considered underweight. At least I still have my PEG tube and port, they were to be removed next week.
Now somehow tonight I must pull myself together and think logically about my situation. Last time I had no caregiver and went thru a terrible time. Even some of my doctors told me I suffered more than most oral cancer patients they have treated. I dont know how I can do this again without a caregiver, this time around I dont even have a driver. I dread tomorrow so much, having to tell my children that Im sick again.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Christine, I am so so sorry to read this news. I remember feeling very concerned for you getting through this the first time without a caretaker. The hospital where you were treated should have a social worker and part of their job is to help people such as you who need the help a family member or caregiver might provide in other circumstances. I would talk to them as soon as you can. Also I think the American Cancer Society often has volunteers who will provide transportation to and from treatments if needed and they may be willing to help in other ways as well.
How old are your children? Are you affiliated with a religious group that could provide any support? Are there patient support groups in your area that might have knowledge about available resources?
Keep posting here and we will try to support you as much as we can over the internet. You are in my thoughts.
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: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Christine,
I'm so sorry you have to battle again and I do hope you find someone to lend some physical support. My heart is with you.
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: Feb 2008 Posts: 341 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Oh Christine - I just don't know the words. My heart is about to beat out of my chest as I read this. I am so sorry.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Christine,
I'm so sorry to hear about your report. Although we are not exactly neighbors, I am available to help out if you need me. It would take me about an hour and a half to get to where you live, so let me know if there is anything I can do.
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: Mar 2008 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2008 Posts: 28 | My heart goes out to you. I appreciate that you were so kind and unselfish to offer yourself to speak with my dad.
Blessings to you and the children.
Anxious caregiver.
Squamous cell ca cheek/jawbone/mandible/Stage IV positive lymph nodes.Surgery, Jan 08. Removal of cheek,removal of lymph nodes.Currently undergoing week4 of radiation treatment--to receive 33 treatment in all.Takes Fenyl patch and hydromorphine.
| | | | | 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 | Christine,
I wish I could snap my fingers and all your troubles would vanish but I can't so you must continue to fight as you have in the past. Approach this second round with as much determination as you did last time. We are all here for you.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Christine- My husband is about to go through round 2 himself. As you said it feels like you haven't even gotten over the first round yet. Know that our thoughts and prayers are with you.
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 2007 Posts: 79 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Sep 2007 Posts: 79 | As Nelie said, you should talk with a social worker. He/she should be able to help you with logistical issues. My thoughts and prayers are with you and your family.
Jean
* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
| | | | | Joined: Nov 2007 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 27 | Christine,
Oh my goodness. I think we are fairly close in the time that we finished radiation. That was my second round with this disease. I had my first surgery in March 2007 and in June it was back. I remember that dreaded feeling that you just know.
I will pray for strength for you as you face whatever is ahead. Do try to find a group that can help you through this time. I can't imagine doing it alone.
Bless your heart. Hang in there and keep posting here.
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.
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