| 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
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