| Joined: Aug 2015 Posts: 3 Member | OP Member Joined: Aug 2015 Posts: 3 | Hello, my name is Doug and this is my first post on OCF. Today I began my fight against cancer with my first radiation treatment, the first of 33. I was supposed to also have my first chemo treatment, Erbitux, but it didn't happen due to very poor communication within my medical oncologist's office. I am quickly finding that staying on top of the numerous medical providers is going to be up to me and my wife if I want treatment to go as planned. There are so many different moving parts, you have to be proactive rather than reactive. In reviewing posts on the OCF site, I know this will be an invaluable tool to help me along. It is my hope that I can help others as I learn through experience while I make this difficult journey.
Doug 48 year old male, non smoker, former drinker HPV positive 7/13/15 diagnosed SCC, base of tongue over midline. 8/17/15 start 33 radiation treatments and 6 weeks of erbitux
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Welcome, Doug. You sound well attuned to the frustrations of complex medical care. Your attitude will serve you well.
Best wishes for the treatment:) When you start feeling the side effects in a couple of week's time, you will find people here very helpful.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Hi,Good luck in your Fight in this WAR,Keep on top of your treatment and don't be afraid to get involved and ask WHY!!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome to OCF. This is an invaluable resource to help you every day as you progress through treatment and recovery and beyond.
The first 10-14 days of radiation will be fairly easy as in little to no side effects. Be prepared to find it gets very hard very fast around that milestone. Read as much as you can now to be prepared to help you find ways to ease the journey.
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 | Hi welcome... - I know you've started treatment but I'm thinking you're not at a ccc... Usually they're a lot better with organizing stuff like this. But get a book write down what is said to you and have your wife follow up in a timely manner - hugs!
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: Aug 2015 Posts: 3 Member | OP Member Joined: Aug 2015 Posts: 3 | Thank each of you for responding and for your encouraging words. Unfortunately, my doctors did not foresee the side effects of the Erbitux happening so quickly. They thought it would be a couple of weeks, but it hit hard about 7 hours after finishing my first round of chemo. Tough couple of days but feeling better now with the proper nausea meds and fluid drip. Cheryl, I am in a CCC, I am just finding communication between the different departments (nursing, appointments, nutritional therapist, speech/swallow therapist, insurance liason, etc.) can be less than ideal. Again, thank you all so much:)
Doug 48 year old male, non smoker, former drinker HPV positive 7/13/15 diagnosed SCC, base of tongue over midline. 8/17/15 start 33 radiation treatments and 6 weeks of erbitux
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Not sure as to the side effects you were having, but two main concerns that occur in a very small percentage are severe infusion reactions and cardiac arrest, most which occur the first two infusions, so they monitor you closely, and are to report any unusual conditions. The first infusion is usually a loading dose, 400mg, a week before radiation treatment begins, and 250mg weekly thereafter, which works as radio sensitizer to make radiation work better, and received IV Benadryl along with the Erbitux to reduce any reactions. You were probably advised of the notorious rash, which is a good indication the drug is working, but not always. Besides that, there are a few others like "hand and foot syndrome", mucocitis, others that may occur, so prophylactic measures should be taken. The first sign of a rash I was prescribed minocycline. I was told to use head and shoulders shampoo for dry scalp, and Dove liquid body soap for sensitive skin, and used cetaphil cream for sensitive skin for my neck, and rest of body. Avoid sun exposure as this can worsen the Erbitux skin effects. Curious as to why Erbitux was chosen over a platinum drug, which is usually preferred, although Erbitux is approved for first line treatment, I'm not seeing it used as often as several years ago. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Doug, welcome to the family. We're all here to help and I know you'll do well. Ask any and all questions here, no matter how trivial they may seem. Someone is likely to have gone through it and will have something positive to say.
Courage!
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: Aug 2015 Posts: 3 Member | OP Member Joined: Aug 2015 Posts: 3 | Thanks again for the support everyone. I want to go into a little more detail about my situation to get further feedback. Paul, your response has raised some more questions for me. I truly value and respect the opinions of those on this site. My treatment is to consist of 33 radiation treatments and 6 rounds or Erbitux to be started at the same time and run concurrent. I was told by the doctors that had I not been HPV positive, they would have opted for cisplatin. Apparently the prognosis using Erbitux is slightly better for those of us who are HPV positive than cisplatin. I was also told cisplatin can cause permanent hearing loss and kidney damage. This did not factor into the decision of the doctors to go with Erbitux. Both my radiation oncologist and my medical oncologist didn't think I would have any side effects for about 2 weeks. After one radiation treatment I noticed drymouth. I have now completed 5 radiation treatments and food doesn't taste good at all or taste like it used to. The drymouth has increased. I am not complaining about these side effects, just sharing. I know the side effects I have experienced thus far are nothing compared to what is to come soon. My first (loading) round of Erbitux was 900 mg, the remaining five will be 450. I am hopeful that now that I have the right nausea medication and the fact I can do fluids through my port at home, I will be able to better manage.
Doug 48 year old male, non smoker, former drinker HPV positive 7/13/15 diagnosed SCC, base of tongue over midline. 8/17/15 start 33 radiation treatments and 6 weeks of erbitux
| | | | 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 | If you want to read more about HPV or Erbitux, click on those words and it will take you to the main OCF pages where there is tons of info about these subjects just to name a few. From what Ive seen on the forum about those who have been given Erbitux, they usually get a itchy rash. The more rash they get, the better the chemo is working. The very best thing you can do is focus on your intake. If you are nauseous or the food isnt tasting good, I know its not easy but you must push yourself. When going thru rads and chemo, it will get progressively harder as you go on. Even when you are finished with treatments both the chemo and radiation continues to work making you feel horrible. Every single day push yourself to take in a bare minimum of 2500 calories and 48-64 oz of water. If you can get more in that will only help you to make this whole thing easier. If you begin to have swallowing issues, you still need to take small sips of water several times thru out the day to keep those muscles from forgetting how to function correctly. As with any medication, report any and all side effects to your doctor. You may think its minor and no big deal but it could be a sign of bigger problems. Everything you wrote was correct about the Erbitux, cisplatin and what you know so far. Sounds like you have a great team working for you. Check in with us often. We follow along with yoru progress and are rooting for you. Good luck! 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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Thank you Doug. Was just curious, and keeping abreast, as to the current thought, changes, with Erbitux as my treatment with it was almost 3 years ago, and keeping track of a few things since. Good luck
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Good luck and hang tough in this WAR as the battles have just begun. Take it one day at a time as the side effects can get worse before they start to retreat!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2014 Posts: 66 | Hi Doug, I went through treatments earlier this year. Eat as much as you can of what ever you can for as long as you can because you will not regret it.
Take good care of your skin during radiation, it can make a huge difference. There's a regiment that I used that I had great success with. You do need to lubricate your skin right after every treatment and continue several times a day.
It's good you have a port, it'll help so much.
Do you have an appointment calendar on your phone that you and your wife can share? Yes, it's going to get super rough but you can do it. Your wife can be a great help.
Complain about whatever you like, it's okay. Come here and rant if you need to because during those bad days, you might need to. There's also all sorts of suggestions we can give you for all sorts of troubles. Keep us informed as to what's happening
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps Went to Oncologist (TNBC) Ultrasound 2 CT Scans - body/head and neck Needle & core biopsy Pet Scan Biopsy to find primary w/ anesthesia - failed Second Opinion found primary & biopsied Biopsy confirmed HPV+ P16 Squamous cell carcinoma Radical Neck Dissection 11/22/2014 32 lymph nodes removed - 3 positive Ported 12/29/14 Chemo and rads to start January 5, 2015 cisplatin weekly 40 mg/m2 Rads M-F for 7 weeks
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