After the first week = 5 doses are people generally able to carry on normal activities. People at work want me to attend a Music Fest with them on August 7, the day of my 5th rad treatment. My hobby is photographing musicians. They have set up rooms and done things so I would be comfortable. Some say I won't be able to and others say that early I wont even know I am being dosed.
I don't know dosages but 40-55 in back of mouth and 50 -70 in front.
I was wondering IF I could drive to West Virginia that weekend.
Wishful thinking?
While things are individual the first and second week are normally non events**. Especially if you have no or just a small dose chemo. (so much so that one wonders.... so is that it? but it catches up later on...)
Are you getting a PEG as well? It will take some time to get used to that.
** of course there is the psychological component to consider too.
M
I was told first 2 weeks you feel pretty good but the 3rd week is when you start to feel it....then again I was told by people who have never gotten treatment!LOL
For me the last 2-3 weeks were really harsh, but the first 1-2 weeks were absolutely fine. But as my doctors always say, everyone reacts to these things individually.
With the usual disclaimer that everyone is unique: my experience was that the first two weeks of radiation were a breeze. I had not trouble driving, going out to resturants, even exercising at the gym. I had not yet found OCF so I was in for a very rude awakening the remainder of my treatment.
PS. Ask your radiation oconologist what your total treatment dosage is. The standard measurement is GY, each of which is 100 Rads (old measurement). The typical aggressive treatment is 72 GY. More than that can be very problematic. You might also ask the average dose planned for each week. My first round jumped up tremendously the last two weeks.
Finally, the worst part of radiation is the time afterwards.
Hisnibs, Eat, Eat, Eat. And listen to all the folks here they know what they are talking about.
John had symptoms right away--first day weird taste and some salivary changes, by third day nausea that hasnt' resolved since, and he completed rad tx on the 14th (even with trials of various meds, feedings, etc). That doesn't seem to be the usual, though, from what I've read on this site. Everyone's situation is a little different, though--hard to predict! Best of luck.
Well here she comes the harbinger of doom lol.I posted a message ..CAN IT ONLY BE THREE DAYS? Robs skin was burnt,his mouth was burnt and all his plans to work every day up until he went for tx lasted 2 days.
I know he was not the norm,but thats the whole point.There is no norm,and no one knows till it happens .
love liz
Hisnibs -
I'm on week 3 of my radiation treatment, and it's my first week of discomfort, pain, and fatigue. Weeks 1 and 2 were, relatively speaking, a breeze. Why not plan to go and then see how you feel on that fifth day? You can always decline at the last minute -- everybody would understand.
Good luck with your treatments. I hope they go well for you!
The first two weeks went relatively well for Dan. He took a biz trip by plane after the first week. One big variable is chemo, are you getting chemo? If so, what is the type and frequency of your chemo treatments?
That is for sure cookey. I never missed a day without doing everything for my self including the day after I awaoke from the coma I was put into that lasted 4 days longer than it was supposed to. I was discharged the next day and we were having a major snowstorm.This was on March 8 2008. My daughter drove me to my hose where I got my van and drove 50 mile to her house to spend a few days > About 2 hours after we got to her house, I got my bags and drove back to my house. I was fine until I tried to carry my bags up the steps . LOL that was my 1st trouble.
Rads started today. I am tired but I believe it is because I stayed up all night worrying about potential recurrences, job and other things. I went to the gym after and did the tread mill, pool, hot tub, sauna then 30 minutes of Korean Massage around my neck dissectomy. So I am going to the show as of now.
I am driving an hour and one half to get there then back. Rads are Scheduled for 6 weeks with I think 45-50 gy in rear of mouth and 60 70 towards front. 60 -70 is scaring me. I'm being Tomo'd. On the third week I have prepped by asking for hospitality room.
Might as well say it, I fear not having let them take my teeth. The concensous by everyone was to leave them, but notw I am worried, Nothing lasts forever.
hisnibs (where'd that name come from!): with my boyfriend, fatigue started almost immediately, along with nasty altered taste and nausea. Others don't have those effects for quite some time. An hour and a half is a looooong drive; yikes! Why would they have wanted to take out your teeth? The location of the cancer?
mgmichael, they take them because rads can rot them and cause infection. I had to let them take mine and had perfect teeth until OC started to work on them.
hisnibs - Are fluoride trays an option for you? That is one way you can address the teeth issue when you have to have radiation. I am in the middle of my radiation treatment (three weeks complete, three to go) and have been doing fluoride trays since a week before treatment started. My prosthodontist says I'll have to do them for the rest of my life (!) but that it may be the best assurance that I can keep my teeth despite the radiation effects.
Ask about it.
I imagine that you will "only" be getting a combined 70 to 72 gys in total.
I hope you have someone who can drive you towards the last few weeks. You will probably get to the point that you are a danger to others to be driving especially that distance.
Well since you guys been asking......here I am! lol, and thank you for the birthday wishes! Of course last year I was in Key West drinking Irish Car Bombs this year I was sipping on VHC! Wow what a difference a year makes! So I am in the middle of my 5th week! I have been eating the same things for the past 5 days now. I switch between cream of wheat, oatmeal and yogurt and in between I drink 3-5 VHC's! As of today I weigh 189 and am still driving myself to and from 45 mins! Thursday I will start my "boost" for the last 8 treatment! I have to say the past 5 days have been pretty rough.....no more tennis or golf that has been replaced by naps! lol, they gave me liquid morphine which turned out to do absolutely nothing except make me super hot and itch! So now I am back on the perks! I take about 4 every 24 hours! I use the magic mouthwash but I just cannot take the numbing feeling, makes me gag and drool! So I have been dipping a qtip in the mouthwash and numbing only the sores....lol, which is pretty much my whole mouth anyways! So I look back maybe I would have taken the PEG, I know I am not done but what a Chore it is to make sure that I am getting enough water and calories down a day! Everytime I eat or drink I get mad because it definitely takes effort! All in all today has been a pretty good day for me, when I start feeling crummy I slam a VHC rinse my mouth and take a nap! That usually helps but then of course when you wake up from sleeping your throat feels like the sahara desert! I am on the home stretch and will keep you all posted from here on out! I am sure I could bitch about a couple more things but you already know what they are...lol! Thanks again for your support and good luck! Oh yea....def make that trip!!!!!
With that name Jim you should be driving yourself LOL. I did then and still do everything myself.My total driving time is about 1 hr 20 minutes.
Yeah got the trays, thanks. If anyone out there has sensitivity issues with the gel I started using an SF 1.1% GEL from Cypress Pharaceuticals.
The others caused excruciating discomfort. Even though I never had sensitivity problems until after surgery and roxicet pain killer.
Only? You have a way of making me feel like it could be worse.....
I picked up hisnibs as an internet handle in the compuserve days. It is archaic english for taking a point with a red Jack in acribbage match. The counter move is called hisnobs. Hisnobs means his head and hisnibs means his feet.
I don't know how accurate that is now, I could not find it recently and I am working from memory circa 1982.
Somone else uses the name because he sells pens. Remember fountain pens, quills and nibs? Others don't know about it but started using it over the last few years.
Your gums can't heal as well and I think damage is done to the blood supply in the bone. It can get bad when infection sets in or an accident ocurrs to your teeth.
I am so worried about it I am selling my saxophone because I am afraid I might hit my mouth with it while playing it.
His nibs when I was growing up was a word you used when someone insisted you do something for them, Yes sir hisnibs right away. This meant yes your highness. LOL more like an insult to them. More like saying your no one do it yourself.
Jim,
Good to hear from you. We always get worried when an active poster suddenly quits posting during Tx. We naturally think the worse so even if you have to drag yourself to the computer, post each day and tell us you are doing great. lol
You can always get the nasal tube so check it out. Ten minute procedure (of course the obligatory 2 hour wait to be x rayed) and that's it.
Hang in there big guy. You are probably about to enter that dark tunnel and in about 3 to 4 weeks you should be walking out into recovery land which is way way way better.
It's good that you are still getting some solid stuff down but don't sacrifice calories for that mental boost of remaining somewhat normal. Numero uno importante is CALORIES and WATER and as much as you can get down that throat.
Even if you do get a tube still swallow daily to keep those muscles from forgetting their purpose in life.
Dont worry hisnibs david has a way of doing that to everyone! lol
Thanks David, The hardest part I think is in the morning! Waiting and swallowing enough to basically get my throat woken up so I can take my meds and start drinking/eat Ying! It is so hard in the morning to get that first drink down and wow does it hurt like hell! Yea I would pretty much say I am in that tunnel! I am 100% focused on this only now! Just getting thru each day and making it as easy as possible. I am not really talking to anybody unless it is via text and like I said before eating and drinking as much as possible with rest. 1 day at a time is all you can do! Yea Ive lost about a good 2-3 inches of hairline accross the back of my head from the radiation exiting, even though I cut my own hair with a "0" you can still see it but its hardly noticeable! You can notice my red neck a lot more! I have been putting hydrocortizone and aquaphor on my neck and around my chin and lips. So far it is just red and not dry, cracked or that sensitive. I have been washing my face, hair and neck with aveeno baby wash....guess that is about as gentle as it gets! After today 9 left! Just keep counting them down!
Have your whiskers started falling out yet? I discovered mine when I would rub my face and my hand would have little black grains of sand which I quickly realized was not dirt.
LOL, yea they are all pretty much gone. Being italian I am pretty hairy! There is 2 places on my entire body I dont want hair removed! My head and my face! lol, of course thats what is gone! Rough morning today! Started gagging and spit up some really thick yellow mucuous mixed in with a little blood! That always makes the throat nice and tender for the rest of the day! Had to almost crush up the percocet and eat it with yogurt to get it down! So far I have had 2 8oz glasses of water, a couple bites of yogurt, a small bowl of oatmeal and a VHC shake! They moved my treatment to 3pm today! Thank God, I have been going in the morning and it has just been brutal trying to wake up at 645 just so by 945 I can endure the mouth gag and mask!
I was just up to shaving twice a week when I started radiation...I don't think I'll ever be able to grow a full mustache, beard or even chops
I guess I'll have to stick to the stick-ons.
Crushing the percocet's will definitely get them into the system quicker...just never do it with any time released meds (hci). Just a post of warning to those that may not know how badly that can go.
Jim,
Hang in there, it DOES get better. I didn't think or say that a few weeks ago, but you gotta believe. I feel your pain in regard to the facial hair. I used to have a full beard, or a gotee and needed to shave every day. Now, I can get away with shaving three times a week. The way I look at it, a small price to pay!
WFC
All of my whiskers came back but only above my chin line so I still have to shave every day but only above my chin line. Only the occasional rogue whisker grows on my neck and by the time I see it, it's about an inch long. UGH
I went to the festival.
http://www.heritagemusicfest.com/I had a great time. I am now a grad of 10 treatments. Mouth is starting to blister, and burn most of the time, especially after hygienic activities. I put some cinnamon mouthwash in my mouth and lit up like a match head tonight.
I have been doing the gym, and I cleaned out a shed today. I feel like I am dragging today but get through the activity and actually want to do more.
My mouth is drying out fast.
To be honest the pain I feel now makes me think that in 10 more treatments I will really be in pain. I usually do well with pain but I am thinking this will kick me more than your average hyper-extended knee, torn acl, or catching a line drive with your teeth.
The doc is telling me that I will be sick after treatments which mean after my job protection period is over for disability. This is the part that scares me more than the treatments.