#27815 10-22-2005 06:14 PM | Joined: Sep 2005 Posts: 36 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Sep 2005 Posts: 36 | Sorry I haven't been around in a while. A lot has happened in the last few days and its not all good.
Sunday night as we were watching TV, Scott's tongue started bleeding uncontrollably and I had to call 911. We were taken to a local hospital and they were no help. They just stuffed Scott's mouth with gauze so he can put pressure on it and after 4 hrs of doing so they sent us home.
Withing 45 minutes of being home, I had to call 911 again as he started bleeding even more than the first time. So much so that Scott blacked out and lost consciousness for a few seconds that seemed like an eternity.
This time we were taken to another hospital where they did so much more to help him. They immediately contacted his ENT and arranged to have him transported to another hospital where he can be seen by his cancer doctors as this was out of her range of knowledge (at least she was honest).
On Wed they did CAT scans and started the set up for rad. On Thursday he did the 2nd phase of the simulation and we were also informed that there is another tumor on his tongue and its big.
Radiation started the very same day and chemo starts Tuesday. He will receive Carboplatin 250 mg 8x and Paclitaxel 90 mg 8x. This will be once a week.
He will also be treated with another type of chemo that requires a special catherer to be inserted through a main artery by the growin area and comes up right into the tongue. I have forgotten the name of it right now - total blank.
Have any of you had this type of treatment before and what can I expect?
Its scary right about now. We are staying positive that the treatment will be succesful, if not, he will need to have his entire tongue removed.
Just when I thought things were starting to get better.
The bleeding from Sunday night came from the cancer. That is what the Oncologist explained to us.
Thanks for your support
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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#27816 10-22-2005 10:34 PM | Joined: Sep 2005 Posts: 325 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2005 Posts: 325 | Lily,
I am so sorry to hear of Scott's latest traumatic trip to the hospital. I sure hope things start to improve for you guys, SOON!
Hang in there!
Andrea
SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
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#27817 10-23-2005 02:27 PM | Joined: Aug 2004 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2004 Posts: 30 | Lily,
I am so sorry to hear about Scott. I think that's one of the worst things about cancer (especially this type of cancer). You don't really know for sure what's going on. You think things seem ok and you start feeling hopeful and optimistic and then suddenly something like this happens and knocks you down. I wish there was something I could do to help you both.
Kim never had the type of chemo that Scott is receiving. She did have brachytherapy where tube were inserted into and around the tumor in her tongue and the radiation treatments were given directly to her tongue through the tubes. It doesn't sound anything like what Scott is getting, but there are different treatments.
I understand the scariness with the bleeding. That's what happened to Kim, although the cancer ate through the main artery in her neck. At least the doctors are keeping watch on this and know what caused it. I am praying that the treatments help Scott and that he has as little discomfort and side effects as possible.
I will keep you both in my prayers. If you need to talk to just vent, please know that I am here.
God Bless you both
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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#27818 10-23-2005 02:56 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 and Scott, we will be pulling and praying for you both. 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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#27819 10-23-2005 03:10 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Dear Lily & Scott,
I am sorry about the latest turn of events. Are they planing on surgery on his tongue before radiation and chemo? Please know that I and many other members will be pulling for a good long term outcome. Hang in there, things will get better.
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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#27820 10-23-2005 03:45 PM | Joined: Apr 2005 Posts: 68 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 68 | I'm so sorry to hear about Scott. I will keep him in my prayers.
Mucoepidermoid carcinoma-intermediate grade. Removed 3/05. Additional surgery to get clean margins and selective neck dissection 4/05. 30 lymph nodes removed. All clear!!
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#27821 10-24-2005 01:57 AM | Joined: Aug 2005 Posts: 22 Member | | Member
Joined: Aug 2005 Posts: 22 | So sorry to hear about your husband. Lee had his surgery 4/05 and we as well had 911 trips and similar experiences. But even tho it doesn't seem like it now, it will get better, and life won't always be so hard. We're thinking of you.
Doreen
Stage IV scc base of tongue/larynx
Total glossectomy/partial laryngectomy/radical neck dissection 4/05 followed by chemo and rad. Tonsillar Non-Hodgkin's lymphoma 1996(cured and not related)
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#27822 10-24-2005 04:10 AM | Joined: Sep 2005 Posts: 36 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2005 Posts: 36 | Thank you for everything.
We can sure use all the support end encouragement right now. We aregetting ready for chemo tomorrow.
Yesterday was a week that we had the 911 incident and as we watched TV last night, we kept getting flashbacks. We made it through the whole episode of "Desperate Housewives" without anything happening again but it was scary.
Danny Boy
The doctor's are not planning to do another surgery until he finishes his treatment so at this point we don't know if his cancer is spreading or the staging or anything. The only thing they were able to tell us was that if the treatments do not work that they would do a surgery to remove the tumor but they would also have to remove his entire tongue at that time.
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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#27823 10-24-2005 06:04 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 | Lily,
I am sending you and Scott strong wishes for total sucess of the chemo and radiation treatments. And also that the chemo goes easily for Scott and he tolerates it well. There is plenty of support here for whatever happens as he undergoes treatment but hopefully you are done with the nasty surprise part of the cancer journey and things will go smoothly and successfully from here on in.
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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#27824 10-24-2005 09:56 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | My thoughts and prayers are with you and Scott. I am hoping the radiation and chemo are sucessfull. It is a nightmare, I am sorry you are both having to deal with it. 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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