#7158 03-11-2006 07:19 PM | Joined: Sep 2005 Posts: 36 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Sep 2005 Posts: 36 | Just wanted to give one last update on Scott since many of you have been very supportive to us here.
Scott had his biopsy done on March 2nd on the remaining part of his tongue (1/3) but unfortunately they have discovered that his cancer has already spread to his lymph nodes, his voice box, his jaw, the roof and floor of his mouth and his lungs (the right one being the most affected).
They have also found a tumor on the right side of his neck where he had some lymph nodes removed back in July of 2005. Surgery is no longer an option as this tumor is close to an artery and the surgeoun said he would not survive it.
Scott is now on hospice care and has been given 3-6 months to live. What should have been a routine biopsy after radiation turned out to be so much more. Our initial 2 night stay at the hospital became a 7 day stay. They proceeded to perform a tracheotomy on Scott to aid with his breathing and while at the hospital he contracted pnewmonia. He had a picc line put in so they can administer IV anti-biotics from home.
He also underwent a blood transfusion as his blood level was a 7 instead of a 10.
Chemo is an option but it will not cure the cancers and it will only slow their growth. Since he has had agonizing headaches, he opted not to prolong his time here as he would not like to endure an extra day of miserable pain which now extends itself across his jaw.
Palliative care is our only option.
I thank all of you who have taken the time to call and help me with the so many questions we've had throughout this ordeal. I have met a lot of great people here who have been incredibly supportive and I thank you for that.
Please keep us in your thoughts and prayers as the next few months will be the thoughest to endure for me and my two daughters ages 9 and 5.
May God bless each and everyone of you
LILY
wife to 36 yr old husband diagnosed with SCC on 7/6/05, tongue dissection and radical neck dissection on 7/15/05, 2nd biopsy on 9/15/05 and found carcinoma in-situ. Starting radiation and chemo on Oct 05
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#7159 03-12-2006 01:24 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Dear Lily and Scott,
My heart goes out to you and your daughters. it is so unfair that anyone should have to be faced with the decisions that you have had to make.
Please know that all of you will be in my prayers and I hope that they will be able to keep Scott comfortable.
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"
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#7160 03-12-2006 03:46 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Dear Lily
Our thoughts and prayers are absolutely with you and your daughters.
You have had to deal with more than any young Mum should have to.
May Your God Go with You.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#7161 03-12-2006 03:59 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Dear Lily and Scott,
Both of you and your young daughters are in my thoughts and prayers. This is more than anyone should have to go through. May you find peace and joy as a family in the days you have left together and support and love around you as you go through your grief over this.
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"
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#7162 03-12-2006 07:09 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Dear Lily, you are in my prayers as are Scott and your daughters. 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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#7163 03-12-2006 01:32 PM | Joined: Jan 2006 Posts: 107 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2006 Posts: 107 | dear lily and scott may god be with you, may peace and love guide you.
lenny | | |
#7164 03-12-2006 03:32 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Lily, Scott will be with you every time you look into your children's faces. Praying for strength and courage for you from today forward. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#7165 03-12-2006 03:37 PM | Joined: Nov 2005 Posts: 105 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2005 Posts: 105 | Lily and Scott,
I can only echo what everyone else has already said. Your family will be in my prayers.
May God be with you every step of the way.
John
SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
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#7166 03-12-2006 08:06 PM | Joined: Sep 2005 Posts: 36 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2005 Posts: 36 | Thank you for everything. One day I will gather all of our journals and create a web site to share with you all of our experience step by step and in more detail.
Scott maintaned a daily journal and I have a copy of his entire medical record that I will include in the web site in hopes to be able to help at least one person. All the Drs. continue to say that Scott's case will be a mystery and have never seen anything like it.
This has to stop and more research has to be done. This type of cancer is becoming more common and more research is needed.
I will continue to pray for all of you here that you all do well and not have the experience that we've had.
God bless
LILY
wife to 36 yr old husband diagnosed with SCC on 7/6/05, tongue dissection and radical neck dissection on 7/15/05, 2nd biopsy on 9/15/05 and found carcinoma in-situ. Starting radiation and chemo on Oct 05
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#7167 03-13-2006 02:19 AM | Joined: Feb 2006 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2006 Posts: 58 | Dear Lily and Scott,
My heart goes out to you and your family.
You will always be in my thoughts and prayers.
Just keep Scott comfortable. Hospice should help you with that. They have Ativan which dissolves in your mouth to help him relax and liquid morphine for pain that also dissolves. Don't be afraid to give it to him.
If you need to talk to someone I am here for you.
May God be with you and your family.
Michelle | | |
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