#72460 04-05-2008 03:33 AM | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Just to let everyone know- we got an appointment at Sloan for a possible trial and/or 2nd opinion for April 21. They got back to us within an hour of my husband faxing them his info. I don't want to feed into false hope but what else is there? Just have to realize I can't predict the future and just have to "keep on keepin' on".
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 | Let's hope Sloan has something up it's sleeve that works for your husband. Keep on keepin' on.
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: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Good luck, Sue. I have been following your story and am hopeful your husband will receive some positive news at Sloan.
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Sue:
I hope Sloan will come thru for your husband. The 21st isnt that far off, hang in there.
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: 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 wish we could develop a way to time warp us ahead to Tx days, visits and results days. The mental torment we all go thru waiting takes the wind right out of our sails. Lets hope your time passes quickly.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 |
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Is the person that scheduled this appointment aware that this is a reoccurrence that is not responding to treatment? I would have thought they might have been able to get you in sooner. The 21st isn't that far off, but always the sooner the better.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Hi Eileen- We sent all Neil's records over to Sloan. They know all the info and he needs to be off the Erbitux for awhile before they will treat again. I also had a friend who is a chemo nurse tell me to call everyday and check for cancellations. I just might do that as I agree with you that April 21 is too far away for my comfort. Thanks, 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: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Sue, Good luck on going forward with Sloan. How long does Neil have to be off the Erbitux before treatment? I hope that you will be able to get an earlier appointment. Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | On our way to Sloan today. Wish us luck!
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: Jun 2007 Posts: 10,507 Likes: 8 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: 8 |
My hopes and prayers are with you today.
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: Mar 2007 Posts: 163 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2007 Posts: 163 | Fingers toes and eyes crossed down here for you!
Marica
Caregiver to husband (Pete) Stage IV Base of Tongue. Dx 04 2003 Chemo/Radiation no surgery.. doing great!
| | | | | 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 | Hope everything turns out just like you want.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | The doctor at Sloan suggested that Neil tries the Taxoteer(sp). He still may be eligible for a trial at a later date but he feels like this chemo has a 40% chance of working vs an unknown percentage of the trial drug. The other trial has already been closed out. He said we should know if this works within 2 months. At that time we will repeat scans unless he starts feeling the effects of the metastasis sooner. Even if it buys a few years it'll be worth it. If not, the quality of life issue will be up for discussion.
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: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Sue:
Im glad the news from Sloan was encouraging. When does Neil start treatment?
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) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | I have to call his doctor and make an appointment for next week. The side effects are supposed to be less than the Erbitux so hopefully he'll just be tired and lose his hair. He is not vain so that is the least of his worries. I told the doctor a t Sloan that none of this has taken his hair out yet but he said this definetly would. That's ok-I think bald men are sexy. 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: Jan 2007 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2007 Posts: 97 | Hi Sue-
That's good to hear that they're going to try the taxotere and that that the scan will be soon. One day at a time, hang in there!
Melissa
Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Neil started the new chemo today. So far no side effects but I know he's trying to be brave. He is losing weight and seems to be very pensive lately. I try to tell him that I'm the worrier not him. Keep him in your prayers-this is finally taking it's toll on him.
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: Feb 2008 Posts: 341 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Sue - I think you said he could get this treatment in NJ - is it a long drive? how long are you there for treatment? Is it daily? Weekly? Prayers headed to you from Alabama (actually they have been there for a while, but tonight I'm doing some extras) 
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: 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 | Sue,
Lets pray this works and gets rid of the spots in his lungs quickly.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Thanks everyone-The treatments are once a week. So far just some nausea last night. Nothing that couldn't be tolerated.
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Praying for this to work! K
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Praying for this to shrink them thingers to nothing! Thinking of you every day.....
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | We just got the PET results from last Friday and more bad news. The metastasis has spread into the lungs-not just on them. The uptake in is head and neck has declined but the increased activity from the previous scan may have been from the radiation. So they can not do anything else for him here. We will be trying at Sloan again to see if the trial is still open. My husband is an incredible fighter and wants to continue with treatment. Hopefully a relaxing vacation next week will help take the edge off.
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: Jun 2008 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | Sorry to here of your bad news. Your husband's positive attitude has to help somewhat. Try to enjoy your vacation and good luck at Sloan
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: 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 | Yeah, good luck at Sloan.
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: 8 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: 8 | Sue:
Im so sorry to hear the scan wasnt good news, hopefully you will get into the trial at Sloan. You both deserve a break, try to enjoy your vacation.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Sue, Enjoy the vacation and I hope your husband gets into the trial at Sloan.
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"
| | | | | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | HI, Sue, have sent you a private message. Hope the trip to the shore is a good one. 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
:
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | We had a great week at the shore. Neil's family all came down and everyone just hung out on the beach and told tells about each other from "back in the day". Needless to say, all our kids got a kick out of hearing that the parents were as bad as they are. So now we go back to Sloan on Wednesday to see if there is a trial open. The doctor had told us last time that the Taxotere would not disqualify him for one. This disease is truly a horrible monster.
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: 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: 8 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: 8 |
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) | | "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: 8 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: 8 |
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) | | "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: 8 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: 8 |
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 | | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | David- I don't have the paperwork since the doctor needed another copy to have signed-so he took mine. I will get another one soon as his oncologist here wants to see it also. I didn't think to ask about HPV. Neil was negative for that. I just went onto the MSK website and the virus is listed as Src. If you put Src virus in cancer in your search engine alot will come up. It is the Rous Sarcoma Virus that they are studying in this trial. The MSk website has great info under the Head & Neck cancer section. There are several trial going on. Hope this helps, Sue
Last edited by suemarie; 07-11-2008 05:30 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: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Very interesting.....best wishes for help from this new drug/trial.
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Just wondering if someone has had this problem. My husband has had a new mass seemningly pop out overnight in his neck. He had this happen in a different spot back in December and it was removed when the biopsy came back positive. This new one was shown to his new doctor at Sloan and he was concerned. When asked about surgery he said that they won't do surgery if they know it won't remove all the cancer and since he has distant mets, that wouldn't happen. He had 2 more CT scans on Thursday but since then the mass has caused his skin to crack, bleed, and seep clear fluid. We are keeping a dressing on it and will be back at Sloan on Monday to start the trial. He is also already on an antiobiotic for an infected finger. Has anyone had this happen? It really scares me as the doctor was more concerned about the mass than the mets to his lung. I'm afraid its really big and will cut off his airway if the trial doesn't work. If anyone has any insight I would be glad to hear it.
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: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Hi Sue,
Have you talked to Liz about this? I think, but quite likely could be mistaken, that Rob may have had something like this show up on him.
Good luck - we're all praying for y'all...
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) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Hi Paula- The doctor said that the mass is pretty superficial right now but could become a concern as it is close to the carotid artery. We really have to keep an eye on it. When it bleeds it usually stops within a few minutes but bleeding from the neck is always a concern. It actually seemed to shrink a little this week. This head and neck cancer just keeps on giving doesn't it?
How's Jim and how are you? Did he feel better after being hydrated? It's always amazing to me how much better people feel when they're not dehydrated. I hope you are relaxing a little and enjoying your time together!
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: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Jim is doing good - he is very, very tired all the time...most likely from the heat when trying to remodel. I have been busy with my daughter and our first grandbaby this week...I'm worn out, but will do a walk tomorrow for cancer...then I'm done for the weekend...no work, no play, just couch potatoing it and gonna watch the Dallas Cowboys play!
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
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