| Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | He will be having chemo every 2 weeks from what we have been told and that each time he will stay overnight. He has 3 courses of chemo during his treatment. I feel sorry for the nurses having him overnight because he's not a sit down and be quiet kind of guy. He had never been in a hospital himself until his biopsy. Pretty good to reach 43 without any ops. He will be the patient from hell when he is forced to stay overnight, I'm sure.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 113 | Hi Friends. It's been a long time since I've posted. Just thought that I would let you all know that we've called in Hospice as things here have gotten worse. Jim can no longer stand or walk. Each day he is getting weaker. I've been by his side for a year and a half, hoping that treatment would work. But, it did not. All those treatments were in vain. I am so very very sad and tears cover my face all day and night. Looking at him suffer is more than I can handle. Where did my strong energetic husband go ? Where is he ?
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Oh Claudia, I feel so sad for you and Jim. I have no words that would even begin to make any difference to you. Just know that you and Jim are in my thoughts and prayers x
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | 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 |
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Wendy,
I had 3 rounds of Cisplatin (I don't remember you saying what he will get but Cisplatin is pretty standard) and watch out for what they call "ringing in the ears" or if I were you tell him that if he notices ANYTHING funny in his ears tell his chemo doc straight away!! I ended up with permanent high frequency hearing loss because perhaps I didn't recognize this "ringing in the ears" soon enough.
My first chemo was pretty much a non event. Second round caused a lot of nausea but it was also after 15 rads so who knows. The third round was horrible re the nausea but I had also had all my rads so who knows again?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ 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 | Claudia, I am so sorry to hear of Jims struggles. I will keep both of you in my prayers. Please remember we are here for you. 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: Oct 2007 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2007 Posts: 104 | Claudia I am so sorry to hear Jim has not responded to treatment and is now palliative. I do hope hospice is able to provide comfort and support for you both in this very difficult final stage of your lives together. May you find strength and courage to face each day. Know we are all here for you.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Hey clauadia
(((((HUUUUUUG))))))
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Thanks for the warning David. I'm not sure what he's having for chemo yet. They haven't told us but we will find out this time next week. Even though Steve doesn't get on this site he does listen to everything I tell him I've learnt from you guys. So I've passed on your warning about the ringing ears. Is hair loss associated with Cisplatin? The reason I ask this is that Steve has alot of hair and I think we should cut it really short before we start chemo but he doesn't want to. He's never really cared about his appearance (hence the long hair) but I'm really worried the actual event of losing his hair may upset him when/if the time comes. I've read some chemo's don't result in hair loss but wouldn't have a clue which ones. Also, what should we do about beards and radiation? The doctor said the hair will go but should he shave before having radiation. I was thinking maybe a couple of days before. He currently has a full beard.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | 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 | No hair loss from Cisplatin but the rad will "blow" the hair off the back of his neck where the rad will exit. The rad will also most likely cause his whiskers to fall out like little grains of black sand. The hair on the back of his neck will slowly grow back and some of the whiskers may return. I lost all my whiskers and the hair on the back of my neck. Back of neck returned after almost 2 years; whiskers above my chin line came back but the ones below never did so I don't have to shave there except for the occasional rogue whisker or 2. Remember we all can turn out differently and always keep that in mind. Whatever happens to him will most likely be NORMAL for him.
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.
| | |
Forums23 Topics18,245 Posts197,129 Members13,316 | Most Online1,788 Jan 23rd, 2025 | | | |