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.
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.
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
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
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!
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:)
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.
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!
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.
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!
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
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
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