Here is my current state 3 weeks out from last radiation and 2 1/2 weeks out from last Cetuximab:
Radiation burns started the day I ended treatment and are now about 90% healed. Burns were from my jawline all the way down to my collar bone on both sides of my face, but more so on the tumor side.
My hairline has completely receded in the back, at least 5 inches higher than normal, apparently from the radiation
I'm still on liquids and have been since the 3rd week of treatment, patiently waiting for the tongue pain to subside. Lost about 20lbs
Inside of my mouth is starting to slightly improve everywhere except the side of my tongue back by my molar, it's so sore I have to swish with liquid lidocaine constantly just to drink my shakes and talk halfway decent. No improvement in that one spot at all.
Energy is coming back slightly but still sleeping 10+ hours/night.
Norco is killing me, makes me dizzy and sick to stomach, Zofran helps but seems to add to dizzyness...it almost feels like if I could get to the point where I wouldn't have to take it, I would feel a lot better.
Still have a nice rash on my back and slightly on my chest from the last Cetuximab dose 2.5 weeks ago.
I guess I'm just looking for viewpoints from some of you who have gone through all of this since I have no frame of reference...is all of this normal? I'm due back at Stanford next week for my first followup...thank you
Matthew, yes, what you have described is completely normal. Recovery will take many weeks, months for many.
The radiation continues to work even after you have finished treatments. Usually the first 2 or 3 weeks after the last radiation treatment the patients will slowly begin to notice they are making progress.
Hair will regrow in time. What you described is the spot where the radiation exited your body.
Over the next few weeks you will have ups and downs. Dont be surprised to have setbacks once in a while.
Hang in there, the worst of this is finally behind you.
Mathew, I thought I was reading my own diary. As mentioned, all this is normal. I did erbitux last year, and took a month or so to heal, was itchy, but today I mostly forget how much was any pains, other treatments as well, as time heals all wounds. I get sick oxycodone, other pain meds, so needed the nausea meds to counter. Don't be disappointed, it takes time, and it will get better.
thanks you guys, this was exactly what I needed to hear...i will hang in there as it appears it is just a matter of time.
Matthew, adding my yes this sounds normal to me. I pretty much lived on liquid lidocaine for months as it was the only way I could numb my mouth enough to drink anything. I can also sympathize with the nausea, had it for 3 months solid post rads. I finally got some relief with Compazine after Zofran and some others weren't doing the trick.
Hang in there - what you're going through is quite common and Christine's last remark is something you can really take to heart.
Oh and I too lost hair in the back. About an inch or so has never grown back. I consider it a small price to pay!
Keep us posted on your progress, buddy.
Matthew, ditto on reading my own story. I learned to be patient in recovery. This is not a cold you beat in a week or 2. The hair will all of a sudden grow back on your neck although to date not as far down as it used to be for me. 7 months post treatment my haircut finally seemed like a normal cut with hair on floor. Keep nutrition up or you will lose more as your body rebuilds. Source of calories and proteins is not so much a concern right now as getting them. Carbs are important too. 4000 should be your target for calories and 150grams of protein. Everyday. It is tough with just liquids but can be done. Don't skip on this and think you can make it up. The rebuild takes fuel. It took 10 weeks after treatment to go my first week without using my tube. By then Christine's miracle shakes were a steady part of my diet. Finally ask if your tongue is ulcerated and if so ask for laser treatments to keep this clean. I went for 10 treatments before mine began to heal. Almost 8 months later it is still tender but able to withstand chewing on that side. Again have patience but be tenacious.
Thanks for the comments. I stopped taking the Norco on Friday. I had one in the morning and that was it. I also at the same time finally cleaned my mouth, it had been quite some time since i had brushed or flossed because of the pain but I numbed up with lidocaine and was able to do it.
After all of this I was surprised to find that Saturday and today were the best days for pain i've had! It would appear that I will not need it anymore--fingers crossed.
What is odd is that i don't actually feel anybody, I think I feel worse. Very tired, aches, almost flu like symptoms. Could it be some withdrawl sypmtoms from the Norco? I was only on the stuff for 5-6 weeks and I wasn't taking more than 5/day.
Hugs dude... be patient you will get there.
Hi Matt: Like everyone said above, I thought I was reading my own diary too, as that's what I went through. I'm 10 weeks post radiation now and most of my symptoms have gone. Remaining are only the dry mouth problems and the hair on back of my neck hasn't fully returned but is visibly improving.
I didn't have to take the heavy pain killers you did, but seems I used several of the 300 ml bottles of liquid lidocaine before it was over. I haven't need any of that since maybe 4 or 5 weeks post radiation. And like you, I survived for quite awhile on liquid nutrition (Ensure).
So, you're coming along nicely, just hang in there as it gets better every day, sometimes it just seems the improvement is so small as to be unmeasurable.
Tony
I was very frustrated at how slow the recovery was post treatment. Not so different from what you note. I read the experiences of others, but still thought I'd bounce back in a few weeks. It was a few months before I started feeling better.
My hair has started to grow again on the back of my head at almost four months. I've kept it shaved to a 0.5 clipper in back and on the sides to minimize the questions.
Give yourself some time. Take some walks. Your body's been through hell.
I am now 6 months out and have all good news to report. My PET scan was done at the 11 week mark and it came back completely clear, complete resolution of tumor. Yesterday I just had my 6 month MRI scan which also came back completely clear. Along with the scan the Stanford team also did a complete visual inspection with the scope and all was clear as well. I can't tell you how happy my wife and I are today, but always in the back of our heads is knowing that the battle isn't 100% finished so it's really hard to get too excited. One test at a time I guess. I just thought I would pass on the good news, especially for those of you who are going through treatment or have just come out of treatment, hold your head up high and stay positive!!
Always good to hear such great news! Best wishes for a lot more reports like that!
NED is ALWAYS a good thing to be told.
Thanks for the update. Always great to hear the beast is slain!