Start treatment Monday, 2 May. What can i expect?

Mask
My tech told me everything that was going on for the mask fitting. I didn't have a problem with it. Seems like it took awhile, there was another scan after it was done. Make sure that you have a pillow under your legs (knees) there is not reason for any other part of your body to hurt.

All I can say is take a deep breath. Use this time to pray. After the mask fitting it took more than a week for the radiation to begin. I did not have chemo. Make sure that you get to the dentist before treatment.

The first rad treatment I had a strange taste in my mouth. I got thrush by the end of the first week. I am Type II diabetic, thrush comes easily to me.

I was late to respond to the worst of the side effects. There is no reason to suffer. There are meds to help you get through. I was able to drive myself to most of my treatments for about 4 weeks and then it hit the fan. My husband drove me to the rest of the treatments.
This is not fun but you can do it. Think about LIFE at the end of the tunnel.

Starting Treatment
Mike, Fire away with all your questions mate.

I didn't think the mask fitting was a big deal, of course if you're claustrophobic it may be a different story. If I remember correctly, the fitting took about 30-45 minutes. Many here brought in their own music to listen to during the radiation treatments, ask at your treatment center if its ok. It helps to take your mind off what's happening. Allow your mind to drift away. The best advice I have for dealing with the mask is to just try and relax. The actual rad treatments are usually only 10-20 minutes long (depending on how much area they are treating). Never made it through an entire CD. I was always in and out of the hospital in under an hour.

I had 7 weeks of rads for base of tongue cancer with 3 concurrent infusions of cistplatin in weeks 1, 4 & 7. The 1st chemo in week 1 was pretty easy on me, which I believe is generally the case. It was the following chemo infusions in week 4 & 7 that were quite a bit more difficult. I would feel the effects from the chemo for 4-5 days after each infusion. I made it through week 4 of treatment without too much problem. My worst weeks were week 7 and the 1st week post treatment.

The rads effect on my energy level was one of those cumulative processes, whereas with the chemo infusions it usually BAM, knock you on your butt for 4-5 days. The actual chemo injection was the same as having an IV hooked up. I didn't really feel it going in, though it was a bit of a cold sensation at first. They kept me hooked up to the IV for 2-3 days after the chemo was finished to help flush the chemical from the kidneys and you have to drink water, water and more water to keep the fluids moving through and out of your system.

When did it start to suck? Probably when I first heard the words "you have cancer..." Seriously, for me the last 2-3 weeks of treatment were not a lot of fun. But it is definitely doable and a positive attitude is great way to start.

Eat all of your favorite foods now and keep on eating them as long as possible. Keep up with the exercise also. Stay Strong. Cheers

Jimbo

What happens (my version)
Oh geez, you know I have to give you a 200 page answer....... The mask fitting went something like this: I went in and laid on a table, they do a scan then when you come out they take a big sheet of warm plastic with a whole bunch of little holes in it and lay it over your face. You have to lie very still while they mold it to your head, face, neck and shoulders. They also stuck a sponge type thing in my mouth to form a plastic mouth piece. Once the plastic has hardened they do more scans, mark you up with magic marker (I could smell the marker while they did it) and take a few pictures. It really isn't a bad experience. Radiation started about a week after mask fitting. The first radiation takes a little longer,as they're setting everything up. You're scared and they're trying to get the machines adjusted and pin pointed. The main thing is that you go in there and think about something besides the fact that you are buckled to this table getting "microwaved". I prayed, sang songs in my head, they never gave me the option of music so I had my own preloaded in my brain. It really is all about the mind control. I never used any sedatives during radiation, but I never thought about it....maybe it would have been a good idea. After they unbuckled me from the first radiation, I sat up and cried. It's so overwhelming and I don't think it actually hit me that I had cancer until I had to lay there and go through that. I started getting mouth sores around week 3, right after my first chemo because the chemo intensifies the radiation. The skin on your neck will also start to get radiation burns, so make sure that you ask about cream to use and use it as directed. It started out with a really sore throat and taste started to go. The best advice I can give you is not to panic. Go with it as much as you can. Take your pain meds and try not to get frustrated when you can't eat because it hurts and there's no taste, because I'm 11 weeks post radiation and I'm 100% better. IT DOES GO AWAY! I didn't really get tired until week seven, and then had to take 40 minute naps in the afternoon and was in bed by 7 o'clock at night. I'm a single mom, and God bless my 9 year old because she was so amazing through all of this. After the first one, I had rads every day, Monday through Friday, and each session took about 20 minutes. You lay on a table, they buckle you down in the mask, everyone goes out, the machine went around my head, started on my left side and three clicks somewhere under the floor in the bowels of the machine, then a certain number of buzzes. Stop one was behind my head on the left side. 3 clicks, 12 buzzes, then the machine moved to the next stop, directly across from my left ear. 3 clicks, 8 buzzes, etc... until it went all the way around my head and ended on my right side behind my head.

Chemo: I was scheduled for 3 cysplatin but only had two. It took about 6 hours,the initial chemo day isn't bad. You can sit there and watch tv, eat, talk laugh, you don't feel any side effects right away. I had my chemo on Tuesdays. On Wednesday, I got up, went to work but by around 4pm I started to get body aches and feel flu-ish. Day 3 is the worst one. My doctor said that chemo doesn't even effect some people, it's no different than taking an aspirin for them. I spent day 3 wrapped around the toilet with such horrible body aches that I could hardly move. I still went to radiation every morning though.... My recomendation, they will give you several anti nausea meds, start them immediately and take you pain meds as directed no matter what, make sure you take one about an hour before radiation. I was terrified that I would throw up while I was buckled down in the mask. I never did, nor ever came close though. I slept my way through my chemo days, they're all blurry, which is good. They don't seem as bad. The first chemo I ate nothing but ice chips for 4 days. Ice chips are God's gift to chemo patients. The second one was worse, about 6 weeks in, your butt is kinda already starting to get kicked from radiation so it's much harder on you. You have to make yourself take water and take your meds. If you get a PEG tube, they have liquid everything so you don't have to swallow and get it stuck. If you can't take liquids, even if you can, go in for IV hydration. They'll give you saline and potassium and it really helps you feel better faster, at least after that you can go home and sleep a little easier if nothing else.

The difference between rads and chemo: for me, chemo is horrible for a week or so, then it goes away. After about day 5 or 6, I was up doing normal stuff again. The radiation wasn't bad during treatment until the last week. I had radiation every morning and then went to work. Granted, some days I worked in sweats and a t-shirt with no make up, but just knowing that I made it helped me get through it. Keep in mind, they do not expect you to work and most people that I've talked to couldn't. You see, I'm somewhat of a control freak and as you know, as soon as you receive that diagnosis, you pretty much lose control of everything from this point on, so this was my way of giving cancer the middle finger so to speak and keeping at least some control of my life. (I sure hope that doesn't offend anyone!) The last week, I had to take naps on the floor (On a mat with a blankie provided by my bosses. I'm so blessed to have them!) of my office every afternoon and that helped tons! I finished on a Tuesday, I worked Wednesday, and then I stayed home and slept, literally 20 hours a day Thursday through the following Monday. Then I went back to work. Two weeks or so after radiation, my energy started coming back but my throat and tongue were about the same, sore, no taste, etc...then somewhere in week 2 or 3, I got blisters. Pencil eraser size blisters all over my tongue and troat. BUT, at this point my taste started coming back so it was like a game. Take my pain meds, spray my magic mouthwash, then find what smelled good and see if I could taste it. When you find something you can taste, it's like winning an Emmy! Lot's of cheering and woot wooting!

I wish I could hug you and cry with you and your wife. Just typing this has brought back some pretty hefty emotions and I've sniffled a couple of times. I was where you are at 3 days before this last Christmas. What you are about to face is going to be horrible, I'm not going to sugar coat it. But you know what? There is positive in everything. Look for it. I remember when my hair started falling out, I cried for an hour, while holding the large wad of my blonde curls in my hand. Then I went hat shopping. I still have the hair in a baggie. I found that doing nice things for my doctors and nurses helped me to feel better too. They saved my life, with God's guidance and direction which I prayed for several times a day every day. I was in treatment in the dead of winter so 3 dozen cupcakes with bright spring flowers on them or 4 dozen donuts would show up to treatment with me on occasion. Needless to say, they loved me and did everything they could to make sure that I was comfortable and smiling. Cry when you need to, be afraid, but then pray about it, give it to God because you sure as heck can't control what happens from here on out, but God can. Then get up, dust yourself off, and FIGHT!!!! You will get through this. I layed on my couch during chemo and thought about the snow melting and the breeze getting warm and the smell of rain. The first time it rained a few weeks ago, I stood out there with my face to the sky, breathed deep,thanked God, and smiled like a crazy woman! I'm a SURVIVOR, and you will be too! I have surgery in just over two weeks. I'm a little nervous. They told me that this will be nothing compared to treatment. I kinda think they may be lying. Haha! No worries, I'll get through it.

God bless you my friend, hopefully you don't fall asleep reading the book I just wrote! Will keep you in my prayers as you begin your adventure on Monday! You will make it through, and be a better person because of it, but YOU have to choose to let this be a blessing and not a curse!

Hugs to you and your wife!

Karen

Goalie said:

Just reinforcing
What the others said already is very true with the usual allowance that everyone is different and your mileage may vary.

The mask is really not bad. It is like putting a mesh laundry bag on your face. You can breathe easily, you can see out, and some will even cut out the part in front of your mouth to make it even easier. Again, check out the superthreads where all of this is covered in exhaustive detail. I used to watch the machine come over me and watch the louvers open and close while it focused. Count the clicks and stops and it is over in maybe ten minutes. For the first six weeks it hit left and right sometimes going clockwise, sometimes not. The last couple of weeks it just concentrated on the one sure lymph node tumor and it was only about five mins. Oh, and they may give you a small tattoo (the size of a freckle) in the middle of your chest so they can line up the laser. My kids were so excited to hear I'd gotten a tat. Boy, were they disappointed.

What you may not like is getting locked down with the mask. This is a tad confining. And at my hospital (Georgetown) they also like to strap your arms down to make sure you don't move. This would be too much for some people I am sure. For me, no big deal.

Frankly, I usually went into a trance and fell asleep and they often had to wake me up even though it had only been ten minutes.

What else? The rads are like walking down stairs just one step at a time getting lower. Chemo is like jumping down a flight of stairs all at once. Wham! Like others, I was just too sick to get a third chemo but they are finding that it makes no difference statistically so why go for a third?

But over the course of the nine weeks I had a little of everything including low white blood cell count that postponed the second chemo, blood clots that hospitalized me and finally made me stop playing hockey (I played the first few weeks), unilateral neuropathy that made my foot flop while walking that was likely caused by losing 35 pounds and all of the protection that nerves need, vomiting for several weeks on end because we found I was allergic to most painkillers, what else? Again, you may get all or none of these things.

But I did not get a PEG and am glad I didn't as it would have been just one more thing to recover from. But for someone whose health is more on the edge and hasn't my conditioning, I fully support it. Nutrition is important - keep eating until you can't stand it - but far more important is hydration. For the last few weeks of treatment and the first month after I would go to the local infusion center at least 2x a week and just get hooked up for a quart. I was hospitalized one time for dehydration and they nearly killed me while I was there (another story) and I was determined not to let that happen again.

In three months you will be on the other side of treatment and beginning to say it wasn't that bad and in six months you will have forgotten the worst. We're here for you. Doug

Hi Mike

I think everyone already covered it so I will just say good luck and will keep you in prayer.

All the best
Hondo

Goalie said:

Just reinforcing
What the others said already is very true with the usual allowance that everyone is different and your mileage may vary.

The mask is really not bad. It is like putting a mesh laundry bag on your face. You can breathe easily, you can see out, and some will even cut out the part in front of your mouth to make it even easier. Again, check out the superthreads where all of this is covered in exhaustive detail. I used to watch the machine come over me and watch the louvers open and close while it focused. Count the clicks and stops and it is over in maybe ten minutes. For the first six weeks it hit left and right sometimes going clockwise, sometimes not. The last couple of weeks it just concentrated on the one sure lymph node tumor and it was only about five mins. Oh, and they may give you a small tattoo (the size of a freckle) in the middle of your chest so they can line up the laser. My kids were so excited to hear I'd gotten a tat. Boy, were they disappointed.

What you may not like is getting locked down with the mask. This is a tad confining. And at my hospital (Georgetown) they also like to strap your arms down to make sure you don't move. This would be too much for some people I am sure. For me, no big deal.

Frankly, I usually went into a trance and fell asleep and they often had to wake me up even though it had only been ten minutes.

What else? The rads are like walking down stairs just one step at a time getting lower. Chemo is like jumping down a flight of stairs all at once. Wham! Like others, I was just too sick to get a third chemo but they are finding that it makes no difference statistically so why go for a third?

But over the course of the nine weeks I had a little of everything including low white blood cell count that postponed the second chemo, blood clots that hospitalized me and finally made me stop playing hockey (I played the first few weeks), unilateral neuropathy that made my foot flop while walking that was likely caused by losing 35 pounds and all of the protection that nerves need, vomiting for several weeks on end because we found I was allergic to most painkillers, what else? Again, you may get all or none of these things.

But I did not get a PEG and am glad I didn't as it would have been just one more thing to recover from. But for someone whose health is more on the edge and hasn't my conditioning, I fully support it. Nutrition is important - keep eating until you can't stand it - but far more important is hydration. For the last few weeks of treatment and the first month after I would go to the local infusion center at least 2x a week and just get hooked up for a quart. I was hospitalized one time for dehydration and they nearly killed me while I was there (another story) and I was determined not to let that happen again.

In three months you will be on the other side of treatment and beginning to say it wasn't that bad and in six months you will have forgotten the worst. We're here for you. Doug

Q&A
Jeepman. Really, the only thing to "worry" about is what happens to you and your's if you don't go thru the treatment. And because you are starting treatment, soon, then there is nothing to worry about. We are all here to provide testimony that H&N can be survived, and very well, as you are about to discover for yourself. Yes, I know a lot to the negative gets entered, here; however, I would encourage you to stay in the Positive. Everyone truly is different, and odds are you will never experience the worst-case scenarios you may read of on this forum. No, H&N can be tough, but such is life, Jeepman. You have H&N C. Accept it and move forward, as we all have.

If you're worried about the suffering, please try to realize that it will not be nearly as large as you might imagine. Keep your Drs. in the loop as to how you are physically dealing with it all, and they will keep you doing okay. This is 2011, and that is a key part of the Dr.'s job in caring for their patients. And, keep asking any questions or concerns you have, here, and you will likely get that kinda help, too.

kcass

cobra1110 said:

My mask fitting was like
My mask fitting was like having a warm wet towell placed over my head and chest, other than that I can't be to much help because I start chemo and rad treatments tommorow to.

Cobra1110
Good luck and God bless you! You can do this!

Prayers and hugs!
Karen

Long Day
Good Luck today.....it's going to be long.

One thing I was going to mention about my first day. It being so long because the first day they feed the chemo slow to see how well you tolerate it.

Around lunch I was starving smelling everyone coming in with lunch or having brought theirs.

So anyways, I know it's late but wanted to add that. Eat while you can, they chemo alone will make you lose taste for a week+ if you are on the three weeks cycle.

Thoughts and Prayers,
John

cobra1110 said:

My mask fitting was like
My mask fitting was like having a warm wet towell placed over my head and chest, other than that I can't be to much help because I start chemo and rad treatments tommorow to.

Welcome Cobra
Welcome to the forum and glad that you found our little piece of heaven...great people, tons of experiences and history here...

Good Luck on your upcoming treatment. You can do it and life will go on....

Best,
John