| | Joined: Feb 2008 Posts: 341 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Sue I am SO happy to hear you guys had a nice time. What precious memories hanging out with family and sharing stories.
I will be thinking and praying for you guys on Wenesday. I can't wait to hear the news.
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!
| | | | | 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 |
Sue:
Glad your vacation was enjoyable. Good luck on Wed. at Sloan.
Christine
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 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Well we had our appointment at Sloan today. It will take several more tests to see if Neil is eligible for the trial. It is his only hope for at least a few more months to live. The doctor said that based on his latest scan he would only give him about 3 months to live but he looked too good to be on that timeline. We are probably looking at 6-9 months IF the trial works. A year would be a miracle and really good news for the drug itself. It seems that my husband is the rare case were the metastasis is worse than the primary. It really sunk in today for him. I knew in my heart that this was the case but I don't think he wanted to admit how sick he really is. So we have to make the very best of the time we have. We (hopefully) will celebrate our 20th anniversary this November and even though it hasn't been enough time, it still is a long time for a marriage to last these days. I consider myself lucky to have had him this long.
Sue
Last edited by suemarie; 07-09-2008 05:46 PM.
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: 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 |
Sue:
Your appointment must have been pretty rough today. Lets hope your husband gets into and will benefit from the trial at Sloan.
I will keep you and your husband in my prayers.
Christine
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: Jun 2008 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | Sue,
Glad you enjoyed your vacation and had some great quality time together. Hope Neil gets into the trial. I hope and pray you can both keep your positive attitudes.
Karen
Karen-age 47 5/07stage 1 tongue right side partial glossectomy 3nodes removed on right. 6/07 didn't get it all-2nd partial glossectomy. 11/07 stage 3(?) partial glossectomy,flap.all nodes removed on right side. 1/08 peg tube. IMRT 39tx,chemo-cisplatin. 5/08 left side 1 lymph node w/cancer - removed
| | | | | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Sue,
Wishing you and Neil all the best. I'm very interested to know how it turns out, so please keep us posted. Neil's is very, very similar to Jim's.
We went to the Dr. on Wednesday as well - his white blood cell count is very low and she is only going to do (2) more taxotere treatments on him...then scan him in August to see if it is being effective.
I'm very glad that you all went on vacation - I've got you both in my prayers.
Good Luck!
Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | If all goes well, he will start the trial in a week or so. They have to so all kinds of test to make sure all his other organs are ok. He will take a pill by PEG everyday and make weekly trips into the city for tests. He'll also have to keep a journal every day. The major side effect of the drug so far is tiredness. Since he already suffers from this-he should be ok with it. This drug doesn't even have a name yet so there's not much data on the negative effects. It targets the Sark virus which they are linking to cancer. Apparently we all have it but when it matches up with specific genes and other viruses in the body in can cause cancer. Keep your fingers crossed, 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: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Fingers crossed and toes crossed too for good measure!
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I tried to Google the Sark Virus to no avail. Tell me more. Any mention of HPV and the Sark virus?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | 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 |
Thats excellent news that Neil got into the trial. Hope he starts soon.
Christine
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 | | |
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