| | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Hi All,
Even though I don't post much anymore, I always check the forums to see what's going on. Last year, Richard started treatments and all hell broke loose. The anti-nausea meds he was given with his first chemo didn't work and he was violently ill the first night. That was the beginning of our journey with me running back to the pharmacy for Zofran and Ativan, which luckily worked well for him. It was the start of the nightmare roller coaster that didn't really begin to subside until a few weeks after treatment ended. I know all the caregivers will understand the flashback I'm having this year. The sleepless nights, listening for any sounds from him, but still trying to sleep. All the crying done in the car, shower, etc. trying not to let him see and remaining upbeat. The 24/7 stress. I should have received an award for head cheerleader!
And now here we are today, back to work, hiking, all our normal activities and so thankful for each day. The elephant in the room has gotten a bit bigger recently, a reminder of what we went through in 2009. In early March, Richard will have an MRI. That will be a little over one year from completion of treatment. So far all his exams have been fine and the doctors are very pleased with his recovery. The RO even commented on the how well his throat has healed. So no complaints from me, only thanks to all of you on this website for all your ideas, help and support. Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | | Joined: Oct 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2007 Posts: 104 | So nice to hear life is good for you and Richard, may it continue for many years to come. Thanks for checking in and cheering us all up.
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 | A lovely success story Geri.
Much love liz
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Wishing you and Richard continued good news in 2010.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | 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 | Geri, Was he ever tested for HPV?
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: Dec 2008 Posts: 126 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | David, No, Richard was never tested. When I mentioned it to the doctors, the only comments were that they don't routinely test for HPV and the treatment would still be the same. They didn't seem to be interested in the causes, only the treatment plan and making sure he completed it. As more research is done, perhaps the procedures will change. Is it becoming clear that HPV responds better to treatment? What is the percentage of oropharynx SCC that would be caused from HPV? The only symptom Richard had was the one swollen node on his neck. Nothing else could be seen or felt until he went in for the biopsy and then it was so small the Dr had to really search for it. I know the Dr was very relieved to find the Primary, so the treatment could be really personalized for Richard. Actually if HPV means a better result, maybe I would rather not know just in case he should be HPV- I think if you're a former smoker and did drink, the doctors assume you fit the profile, even though you quit 30yrs previous to diagnosis. It seems to me that the oral SCC would be the common area for HPV+ instead of oropharynx. Any thoughts on this? Thanks for all your responses....Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Geri. So glad to hear things are going so well for both of you. We followed similar paths just a few months after you. Continued good health and happiness to each of you. Every day truly is a gift.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | That is wonderful news Geri. It makes me so happy to hear that you are both moving on with your lives and enjoying them:)
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | 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 | Geri, Studies so far have concluded that SCC of the Oropharynx region (includes BOT and Tonsils) test positive for HPV appx 70% of the time. It is very rare to find HPV in other oral SCC's. Yes I quit smoking (about 1/3 pack a day) 35 years pre Dx and I drank socially.
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.
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