#77802 07-31-2008 10:04 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | I have been hesistant for weeks to address this problem here as I didn't want to scare any newbies. My mom is still having post tx issues. Now, most recently she is finding that pieces of her tongue are freezing up, then dropping off. She is currently in the HBO tx and overall she looks incredibly better!
I don't know how to help her. I don't know what to say or do. I am usually a very compassionate person, lately I find myself distant adn scared....and ANGRY!!!
I am working again, full time, and feel so out of the loop. At 10:30pm she ussually finds me and just cries, sticks out her tongue, bangs things around. It is becoming hard to bear. I am beyond spent....
my family overall is still having a hard time form this past year, not to mention losing Eddie's dad still hurts.
any advice would be most welcome.
I have missed all of you, and still pray everyday for you.
much love,
Donna
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Donna,
this might be naive but are the portions of the tongue that are affected where they had the radioactive wires/seeds for brachytherapy? What does the RO/MO say about this.
Would your mother consider counseling ? That might give you some air.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 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 |
Donna
Sorry you and your mom are still going thru rough times. Hoping it gets better soon.
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: Jan 2004 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2004 Posts: 104 | Donna,
I'm so sorry you and your mom have to go through this.
You both must be so scared.
I'm glad she is doing well with the HBO tx.
Hoping this is the last dark corner to round before your mom feels really good again.
Hugs!
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Donna- I can't imagine how hard times are for you now. I'm so sorry and wish you some peace. Let your mom know that people are praying for her.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Donna, I am so sorry your mom is still going through such challenges at a time when it sounds as if you don't have much else to give. Is there anyone else YOU can turn to for support or help? It sounds like you aren't getting enough support yourself to prop up your mom so that realy has to be the first priority-you can't give what you don't have to give and being as drained as you are doesn't do either of you any good.
Your mom i in my prayers. I know she has fought quite a battle in terms of recovering from treatment.
Nelie
Last edited by Nelie; 08-01-2008 08:06 PM.
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"
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