| | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | OP  "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi all, Kris had a PET scan early July which showed that the tumour at the base of his tongue had responded very well to treatment and was no longer an issue. There was however ongoing activity in 1 lymph node and there was still quite a large lump in his neck. He had a level 2-4 Right Neck dissection 2 weeks ago from which he has recovered very well. We saw the ENT surgeon yesterday. All the nodes are negative for cancer. The mass in his neck was a necrotic node post radiation and chemo . YIPPEE The Doc even told Kris he was cured - though I know one cant say this until 5 years post treatment . Yay the benefits of being HPV positive. We had a discussion on HPV initiated by me. The Dr said that we were the first patient /spouse that he had ever had this discussion with. Hopefully he will now have more. I talked to him and the NP about this wonderful website (OCF) and how much it has helped us through this journey. I asked them to please give it to all other oral cancer patients they see. Im sure that the team will do this,- I bought it up on their computer to show them. We also discussed spreading awareness of oral cancer and public education, and I told them that we would be willing to participate in any forum they organised. Prior to Kris's diagnosis I knew nothing about oral cancers (I am an ICU/CCU Nurse)and we do need to spread the word and educate. I tell anyone who will listen to me. Thankyou thankyou to all of you. You have all inspired us and helped me enormously to care for Kris through this journey. I am not leaving this site, I logon most days to follow everyones progress as well to inform myself. Now we are onto monthly followups and scoping down the nose for routine surveillance for the next 12 months. Love and hope to you all, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | That's fantastic news Tammy! Congratulations to you and Kris! You're so right about the need for education and outreach - I fear that we are just seeing the beginnings of oral cancer in a younger than typical population now given the HPV connection. Take care!
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
| | | | | 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 | Tammy, congrats on the wonderful news! Hope you and Kris celebrate this milestone! I love your activism. Thru tireless efforts from people like Brian Hill and word of mouth from many others this disease is finally starting to get noticed. Its our duty to warn others of the sneaky hidden side effects of this terrible disease. Keep up the great work!
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | yes a very big congratulations to you and kris! i'm on board with "EDUCATE!" actually just today i was thinking, why didn't my RO or my ENT surgeon give me any information on the OCF website/forum, or any websites for that matter. i found out all my information through google, and thank goodness i came across this forum. speaking of education...a friend of mine said to me "well you really don't need to mention to anyone you have (insert whisper) HPV" my response was "are you kidding me i want to stand on the side of the freeway with a big poster and warn anyone who is willing to listen to me!" thanks for inspiring me to keep on educating others.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | OP "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 |
Thanks guys.
That's not to say it is all plain sailing now.
Kris has does have on going issues.
There is still the PEG to get rid of - hopefully soon. Food/eating is a huge problem. As well as the desert /dry mouth his tongue is paralysed on the Right side. This is because the troublesome lymph node was pressing on the Hypoglossal nerve and the damage is permanent. The speech therapist has told me he will always be on ensure to maintain calories. We argue every day regarding his intake. He can only swallow liquids and smoothies custards and yoghurt are pretty limiting. I'm trying to "let go" and give all the responsibility to him, but after managing his care and treatment for 8 months now I am finding it hard.
But, he's alive and surviving. I am so grateful.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Tammy
great to hear the biopsy results on the neck dissection!
Liquids certainly are a limitation - but remember that with a blender many things are possible. If any texture at all is an issue, the baby cereals (rice, oatmeal, mixed grains) can be added to fruit smoothies for a tastey concoction. It is difficult to get veggies perfectly smooth with home equipment, but you can whip of a batch of pea soup with toddler peas and carrots and your own (mild) spices.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | 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 | That's awesome! Glad he's NED!
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 |
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
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