| | 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,
It's really helpful to readers if you have a Signature Line for us to read with every post.
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Wendy,
Sorry for the hospital visit. Will keep praying for peace over your situation. That had to be kind of scary to see though. Again, I'm so glad you have family close.
If you can find a minute to put a signature in under your "my stuff" that would be great. I know you have all the info in your first post though, and you are under a lot of stress, so don't fret about it if you can't get to it. It makes it easier for others to offer help if they can see what has happened by looking at your most recent post.
Thank you so much for updating. Like I said, will be checking daily, and thinking of you often.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Oct 2012 Posts: 12 Member | | OP Member
Joined: Oct 2012 Posts: 12 | thank you for telling me about the signature line. i didnt know how to do that. hope its easier for you to read. there is so much more but it wouldnt let me use everything. shortened it as easy and most accurate as i could.
Age 44.Tonsil HPV stage 4. Radiation/Cistplatin/peg tube. Spread lungs,stage 4. Lung wedge removal 12/5/2011. Carboplation, erbitux, 5fu until 5/2012. Clinical trial Anixinib.Disease progession in lungs,brain,colon,stomach,intestines. Hospice started 12/20/2012, passed away 1/3/2013
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Great job on the signature. Thinking of you!!
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Wendy, my thoughts are with you and Jim.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Oct 2012 Posts: 12 Member | | OP Member
Joined: Oct 2012 Posts: 12 | jim and i had a rough couple of days and thought id update for those who are interested. jim original cancer was of the left tonsil which spread to lymph nodes on both sides of the neck and then into both lungs. last week we noticed a lump on the left side of his neck and within a few days 2 more lumps on the left side of his face. one by his ear and one between his nose and cheek. went to the oncologist today and had a biopsy. they seem to think that the cancer is literally "seeping" through the skin, as they call it, and seems to have spread to skin cancer now as well. we get the results on wednesday but they are pretty certain of what it is. dont know how much more my husband can take of this. ill update with the biopsy results when i can. thanks for all the prayers, we need them right now.
Age 44.Tonsil HPV stage 4. Radiation/Cistplatin/peg tube. Spread lungs,stage 4. Lung wedge removal 12/5/2011. Carboplation, erbitux, 5fu until 5/2012. Clinical trial Anixinib.Disease progession in lungs,brain,colon,stomach,intestines. Hospice started 12/20/2012, passed away 1/3/2013
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Mega prayers to you... That's a bizarre movement of the cancer it sounds like he's very immunosupressed. Hugs and love to you all.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Thank you for updating. It sounds very aggressive and crazy.
Like Cheryl, praying for you guys daily.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I'm not sure if this will help cocoapop on here has a father with a similar situation. They had a recurrence after initial treatment (and other treatment was ineffective - he did not have lung involvement but the cancer was persistent) - there is a lab in California that requires a fresh biopsy sample within 24 hours - they take his specific tissue and test it to see what it responds to, and then suggest a treatment plan, this is more effective as im sure you understand because it's specific to his cancer and his DNA - rather than using the standard treatment. It might be worth a try - compared to most hospital procedures etc it's reasonable price wise ( I think it was 500) anyway he's not "cured" but at the present he's stable - hugs, prayers and luck to you.
Last edited by Cheryld; 10-23-2012 04:51 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | 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.
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