Hello all,
My name is Mark.
I am new to all of this, do not have a caregiver though i will have some family/friend support.
I am meeting in the morning for the first time my CO and one hour later will meet my RO for my last pre-radiation appointment.
CYSPLATIN 3 TIMES /RAD-35/PEG-SURGERY TO REMOVE LYMPH NODE ONCE REDUCED
Feel very confident in the hospital and process but not sure what questions i should even be asking tomorrow .
Will be taping both discussions - i am by myself and seem to forget what is said.
It has already been very helpful reading a number of these posts today.
I have a lot to prepare for and am finally squarely facing this.
I am trying to stop thinking about all of the side effects and pain/discomfort and trying to simply take it a moment/day at a time.
Some days I win , some days i do not.
It has been a long 2 months , but it is time to beat THIS and reading these posts is helping me to prepare.
So long for now and thank you for being here.

Mark, welcome to OCF!

Write down your concerns and also the replies the doc gives. Take someone with you as an extra set of ears. Too often bad news will make the ears stop working and we will not hear anything else said.

If you have not gotten a full bloodwork done including thyroid and testosterone its important to get this done before you start treatments.

I would also discuss with the MO about getting weekly cisplatin instead of the 3 big bag method. The weekly smaller doses are easier to tolerate for most patients. Also ask your doc about how often they see hearing issues with cisplatin. If you notice anything at all different about your hearing after getting cisplatin tell your doc immediately and do not get another dose. they can switch you to something else. Cisplatin is known to cause permanent hearing loss in some patients. It didnt happen to me but it did affect our other admin, David.

Have you been to the dentist for a good check up and flouride trays yet? If not, do so right away and get started on using the flouride trays.

Not all patients suffer thru their treatments. Some will sail right thru continuing with their regular life almost exactly like they always have. One of our newer members, Tony just finished and he only had some mild side effects (mouth sores) the final week of his treatments. Hopefully you will be one of the lucky ones. This is within your control..... by adhering strictly to taking in at least 2500 calories and 48+ oz of water every single day you will get thru it easier. By maintaining your weight it will help you to avoid the pitfalls of dehydration which makes you feel awful. I suggest getting the doc to write you an open prescription for getting hydrated in the chemo lab whenever you feel like your water intake isnt where it should be. You will instantly feel much better after getting the IV fluids.

Thats just a few topics to discuss. Good luck tomorrow!!!

Hello Mark:

I am the Tony referred to by Christine in last post. Yes, I was incredibly fortunate to go through treatment with very few side effects. Others on the forum have been on the opposite end of the spectrum and had a really rough time of it. Where will you fit in to that spectrum, who knows, everyone is different. Here's hoping you end up on the easy end.

No matter what happens, your new family is here for you every step of the way. That's just what we do, offering support when you need it and technical information when you need that too. Though we are not doctors and can't offer actual medical advice, we can and will tell you how it went for us. Just knowing that is often helpful to the new patient in treatment. It will be rough at times, but because all of us made it through, I have no doubt you will too, especially if you can keep a positive attitude about what you are going through, and try to keep doing the same things you did before treatment started. Whatever you do, don't resign yourself to a low energy existence in between treatments. I am a dancer and I danced all the way through treatment; most people didn't even know I had cancer (until I told them). I also play bridge and fly radio control model airplanes, both things that I never gave up during treatment.

You will lose some weight during treatment, so it is very important you eat, eat, eat. Eat way more than you think you need. You will be glad you did later when the side effects start showing up. It's very possible for your mouth and throat to feel so bad that you don't want to eat or drink anything. I'm through with treatment (last Friday), but still have absolutely no appetite. I could easily go all day without eating, but eat we must. If you don't you will get dehydrated and malnourished and they WILL put you in the hospital if necessary. You don't want that, so eat now, eat lots and then eat some more. Don't worry, you won't gain a pound, you'll just lose less in the future. I lost about 30 pounds in two months, that's pretty drastic. But I was easily 30-40 pounds overweight, so I had it to lose. If you are already skinny then weight control will be even more important for you.

Okay, I've said enough. Get that spiral notebook Christine mentioned and start writing down your list of questions for the RO, the MO, the nurses, the forum members. You will be glad you did because you have a very steep learning curve to climb right now. Get organized and it will go much smoother. Ask us when you need too. If you want to see how the whole process went for me, my two threads are mentioned in my signature. Next week I will start an Immediate Post Treatment thread.

Welcome to the family brother. We will help you get through this.

Tony

I personally don't see the need to take out the node UNLESS it doesn't respond to the Tx which I am confident it will. Do really ask about this.

You will most likely need someone for about 6 to 7 weeks, those being the the last 3 of radiation and the first 3 post radiation.

Concume at least 2500 to 3000 cals EACH abd EVERY DAY starting now. Do drink at least 48 ozs EAC and EVERY DAY.

Welcome, but sorry you are here. Dang HPV got me too. Rads and cisplatin can be burtal, but you, like the rest of will get thru it. Come week 4, you will not feel so well, and daily tasks will become difficult. My advice is to get as much stuff done now, like home repair, car service, garage work. You may need help getting to and from treatments. Especially day of and days after chemo. Even simple tasks as taking out the garbage may become difficult. Your taste buds are going to crap out on you and your appetite will be non-existant. To get cals in you should get some hi cal drinks such as ensure or boost. Start a log of what you consume, both meds, cals, and water. Beleive me when I say trying to remember what meds you took and when will become difficult. Cisplatin, and the anti nausea drugs can give you constipation. Asks the docs about this, and get out in front of this. Good luck and post often, the more people know the better the advice you will get.

Mark, want to back up David on the advice to make sure you need that follow up surgery on the node before getting it. Our cancers are similar - BOT and node. My first doc wanted to do a neck dissection, second opinion doc said studies showed 80 percent of the nodes being removed after treatment were no longer cancerous after chemo and rads. For this reason they changed their practice to waiting a few months after treatment and then rechecking with a PET scan before doing follow up surgery. I'm closing in on five years and so far so good.

On another note, It was shown in some studies that there is better outcome with a planned neck dissection, rather than a wait and and see approach. Around 30% of HNC, may be in the oropharynx, that needs salvage surgery, but may be more non HPV, but not all HPV responds positively, for unknown reasons, type B, smoking background possibly, and behaves aggressibelu like tobacco related. The key to survival is controlling the nodes. With oropharynx cancer, it's mostly regional, locoregional failure, not distant metasteses.

Mark - welcome to our family. The road ahead won't be easy.... but you sound like someone with a positive attitude so I'm sure you'll get through the rough patches. You hadn't mentioned whether or not you're currently working or what your plans are for that. I found that after 2-3 weeks of rads I wasn't able even to sit in front of a computer for more than 10 minutes at a time. But of course everyone is different, and maybe you'll be one of those who's able to keep all the plates (or most anyway) in the air.

We're here to help. Courage!

3 big bag cisplatin here. NO substantial side effects nausea-wise but it did ding my hearing. They left my big node (I had several others) as a barometer. I still have that one but one of the others didn't look right post-Tx so they removed it. Got behind the 8-ball weight wise and barely made it without a peg. I ate a lot but missed the boat on calories (I was eating healthy instead of gravy, ice cream, etc). You are in the right place for info and encouragement!

Mark:
I owe you an apology. I was re-reading your thread and noticed the last line of your signature says you already have a PEG.

So, all my comments about eat, eat, eat are only partially correct. I just wish you COULD eat normally.

So, in the spirit of tongue in cheek humor ... for you it's
PEG, PEG, PEG.

Just remember to keep swallowing; drink water, dry swallow, chew gum, do something, regularly. I've read here that people can lose the ability to swallow due to neck scaring from treatment. You don't want that, it would mean you would be on a PEG for the rest of your life.

So swallow, swallow, swallow.

Lastly, in my twisted tongue in cheek humor style, if I actually try to put my tongue in my cheek, tongue dragging across teeth makes the mucositis hurt like lleh.

Happy New Year

Tony

Mark,

Just because you have the PEG it doesn't mean you stop eating and swallowing. Quite the contrary, you should ONLY use the PEG when absolutely necessary. You need to continue to use your swallowing muscles at least on a daily basis. There are people that become lifetime dependent on the PEG because of this Tx so don't give your throat one more reason to stop it's normal function.

Hello Christine
i am not sure how this works.
If I send you a response to your response to me , will everyone read it?

Mark, if you reply to a private message then it will only go to me (unless others were included in the message). To send me a message click on my name (to the right of this message), you should get a drop down menu, click on send a PM and type your message, then click the send button.