#43949 10-05-2004 08:35 AM | Joined: Aug 2004 Posts: 30 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Aug 2004 Posts: 30 | Kim (my little sister) met with her oncologist yesterday for a check up. She has been battling an infection (an abcess(sp?) for weeks, and the antibiotics looked like they were actually working.
Although the infection seems to be clearing up, the cancer is spreading - despite her chemo treatments. The tumor on her tongue has now spread to the entire tongue and it is swollen and enlarged - to the point that it takes up her entire mouth. She also cannot move her tongue at all. This literally happened over night. Sunday things were fine - Monday her tongue swelled.
The oncologist also found tons of tumors all over her neck. The chemo seems to be doing the reverse affect. We aren't sure what is going to happen. Kim will meet with her chemo doctor on Thursday and possibly receive another chemo treatment. Kim is tired of fighting and doesn't want to go through with any more chemo treatments. She said that she does not want to live like this. My mother wants her to try the stem cell treatment - the oncologist said that it works well for individuals who have had no luck with any of the other forms of treatment. My dad thinks Kim should keep fighting. Her oncoloist also would like to see Kim fight this, but who knows what will happen.
I am so scared and sad. I have been trying to stay positive, but nothing seems to be working. I hate seeing Kim like this, but I would be devastated if we lost her.
It seems as if she will never be able to speak again - because the tumor is in the entire tongue now, and she won;t be able to swallow or eat without the g-tube. What kind of life is that for a 23 year old? I am so torn. I just want Kim to be happy and healthy again.
I will continue to update you on her condition and I will let you all know what happens at her appt on Thursday. Please keep Kim in your prayers as I know you all are in mine and hers.
God Bless,
Sister of Kim, a 24 year old cancer fighter diagnosed on 12/5/04, who fought strong and hard and died with dignity and honor on 1/3/05.
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#43950 10-05-2004 09:06 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | I'm glad that I had to fight this and not my little brother, I don't think I could have done that, he was fantastic for me, but if the roles had been reversed I don't know that I would have coped..
So I will say prayers for you and Kim.. if Gods listening maybe there will be postive answers..
Walk in Sunshine when you can.. 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
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#43951 10-05-2004 10:12 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | It is heartbreaking to hear of such a young woman being so ill with this disease. I send you positive energy and love, I am thinking of you. Helen
RHTonsil SCC Stage IV tx completed May 03
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#43952 10-05-2004 10:17 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | I wish I could just twitch my nose and make this little girl safe and healthy.
We are sending lots of good wishes and love to you and your family..Bless you all.
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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#43953 10-05-2004 10:17 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Dear AMK,
My thoughts and prayers are with you, Kim and the rest of your family. I can't even imagine what it must be like to face such an aggressive form of this disease at such an early age. I hope the doctors can find some course of action to help her.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#43954 10-05-2004 11:03 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Dear AMK,
My heart and prayers go out to you. I have sons around your sister's age (20 and 25) and it has been horrible to see my husband fight this; I can't imagine one of my children going thru it. Hang tough for her and know that prayers are going up for your entire family.
God bless,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#43955 10-05-2004 11:33 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Dear AMK,
Tom and I will continue our prayers for Kim's peace - and for her family. Your heartache is palpable; I know we all feel it here. You are doing amazing things for her, and I'm sure she is well aware of your love.
Don't give up hope - and do not let despair cloud your days.
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#43956 10-05-2004 12:17 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Dear AMK, I think I can honestly say I understand what you are going through. Heather was only a few years older than Kim when she lost her battle with base of tongue SCC. Seeing someone you love suffering so much is nothing short of unbearable. Yet somehow we dredge up the strength to bear it and continue on. When Heather was so terribly ill, my feelings were also very ambivalent. I certainly didn't want to lose her, yet it was torture to watch her suffer more and more as the days went by. If you would like to talk privately, please feel free to e-mail me @ [email protected]Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#43957 10-05-2004 01:44 PM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: May 2004 Posts: 80 | dear amk,
i think i understand what you're facing too. my sister is also going through a very difficult struggle and it seems like she's loosing, in spite of all the treatments, and it seems like she won't be able to eat through the mouth or speak again. it's very painful to witness. and there are times that i wish i could end her suffering, as much as i love her and don't want to loose her. i hope you are doing whatever it takes to care for yourself too.
i send you and kim good thoughts for healing and peace.
gita
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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#43958 10-05-2004 03:10 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Dear AMK,
I can't imagine someone so young having to go through what Kim is. I have a daughter who is 24 and I don't think I could cope having to watch. Please know I and many other members are sending prayers her way. I don't know what else to say.
"THIS DISEASE SUCKS"
At some point Kim has to be allowed to make her own decision about what and if she continues treatment. I'm sure that is very diffucult for family members to understand. The quality of life issues are many. It is a very personal
decision. We all may one day face that decision.
My thoughts and prayers are with both Kim and your family.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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