| | Joined: Jul 2010 Posts: 16 Member | OP  Member
Joined: Jul 2010 Posts: 16 | Hi to all of you!!
My name is liz and i am the wife/caregiver to my husband, a 51 YO 9 year survivor. Our children were 8 & 11 when the initial Dx was made, they are now 18 & 21.
He was first diagnosed in 2001 at age 42 with IV SSC of left tongue. I won't go into all the surgeries but there have been 5, all radical neck with reconstruction, both L&R jaw bones removed and reconstructed with bones from both legs. He has been eating pureed food since 2001. Well the CA came back every two years, negative lymph nodes till last years surgery and they removed them from both the left and right side. His latest surgery date was last Wednesday but the surgeon's stopped the operation because it is inoperable. We were all devastated because he always bounced back from every operation. I am numb. It has been a long tough road with a lot of ups and downs. Unfortunately my husband would not go for counseling which he so badly needed because he was very depressed and very bitter. But that's a story in itself. I wish i found this site a long time ago. It is very inspiring to read the posts on this site. I will encourage him to read it.
I wish all of you survivors and caregivers health, happiness & love
Liz
CG
01 SCC LBOT 42YO-part gloss 5 mo rad
03 recur RSCC gloss & R Jaw removed
05 recur LSCC
07 recur RSCC recon R jaw fm left fib
09 recur LSCC gloss & LL jaw. recon fm rt fib
7/10 inoperable.TrachPEG-carbo/taxol
11/11/10 ca back begin erbitux
12/11/10 passed away in sleep - at peace at last!! XOXO
| | | | | 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 | Liz, welcome. It has been nice getting to know you thru PMs. Happy to see you introduce yourself. Glad you are here now 
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: Jul 2010 Posts: 16 Member | | OP Member
Joined: Jul 2010 Posts: 16 |
CG
01 SCC LBOT 42YO-part gloss 5 mo rad
03 recur RSCC gloss & R Jaw removed
05 recur LSCC
07 recur RSCC recon R jaw fm left fib
09 recur LSCC gloss & LL jaw. recon fm rt fib
7/10 inoperable.TrachPEG-carbo/taxol
11/11/10 ca back begin erbitux
12/11/10 passed away in sleep - at peace at last!! XOXO
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Liz,
Oh my gosh what a shock it must have been for you and your family. I'm so so sorry that the surgery couldn't be completed. Your husband sounds like such a tough guy. I can't believe all of the surgeries he's endured!
I could imaging that he would feel beaten down by this. It must have effected him all of these reoccurances.. and it must have been so very hard on you and your family too. All cancer is terrible but this one is especilally difficult because it effects the basics.. eating and speaking. You have I'm sure been his rock through out it all... sure sounds that way. I'm glad you have found this site too and I'm sorry that you didn't find it sooner. It is a very supportive community. There are many here who have been wheat you have been through and know what you are dealing with first hand.
Take care- I"m so sorry that this is happening. I wish that he could be cured.
KATE
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hello Liz,
I am so very sorry for what you are all going through. Wishing you all peace.
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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome Liz!
I'm so sorry to read this about your husband. I'll be praying for him, I hope he does read this site, it is wonderful and helped me get through the blues.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Liz I responded to your Erbitux post but wanted to say that your husband's being "very depressed and very bitter" sounds pretty normal to me. You are under a lot of stress and regrets but on the issue of counseling, not everyone responds very well even if they go. Not that it may not help your husband - you know him, and how he's acting. Many men are as resistant to seeking counseling as they are to asking directions. Unfortunately, you can not compel someone to attend counseling (outside of the psychiatric & criminal justice systems). There is a wonderful network of caregivers here at OCF . As a patient, I can't fully understand what you are going through but they can charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jul 2010 Posts: 16 Member | | OP Member
Joined: Jul 2010 Posts: 16 | Hi Charm, My husband is the strongest person I will ever meet. He has been through 5 radical neck surgeries with in 8 years. It would be a book if i described every one. They have taken parts from his arm, chest and both legs and he can still beat me in a race and i am 7 years younger then him!!! I do understand and agree with you on the counseling. My youngest was in counseling for a couple of years. He is doing much better now but I just had to make an appointment for my daughter. She has been away at college for the last three years and is not coping at all with our current situation. I feel like i'm copping out by not having the right words to say but i'm treading water. My number one concern is my husband and i need to put the majority of my efforts to him. My husband did not do well in counseling because he is the type of person that likes to be in control and with this cancer he has no control. We will work through this next hurdle together!! Well on a more positive note....He started on Chemo today. Carboplatin every 4 weeks and Taxal once a week. He tolerated it very well. It was a 8 hour doctors visit and the only effects so far is that he's tired. cross your fingers. My fingers and toes are crossed!!! Liz
CG
01 SCC LBOT 42YO-part gloss 5 mo rad
03 recur RSCC gloss & R Jaw removed
05 recur LSCC
07 recur RSCC recon R jaw fm left fib
09 recur LSCC gloss & LL jaw. recon fm rt fib
7/10 inoperable.TrachPEG-carbo/taxol
11/11/10 ca back begin erbitux
12/11/10 passed away in sleep - at peace at last!! XOXO
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