What to expect now

Dave705 said:

1 week down

First week of radiation down. Not to bad except Friday when I had 2 doses. Doctor wanted to do 2 every Friday because of my recent tonsil removal. Really knocked me down Friday evening. Can't understand if they removed the tumor, and see no more signs of cancer, why they have to do 35 treatment. Seems to be a standard number from what I have read. But what would happen with less treatments. May talk to doctor to see if I really need the double dose for the next 5 fridays.

1st week usually not too bad. Don't forget baking soda/salt rinse and keep your neck rubbed down with your choice of cream after treatments. I had 33 with the last 4 high doses to the site. May get a little worse as you go along. Hang in there and make sure you finish. Let us know how you are doing, good luck.

Dave705 said:

Thanks

Thanks for the encouragement.  Been using aquaphor and the baking soda rinse all week. Also constant teeth brushing. Drinking 200 ounces of water and Gatorade a day. Still eating well, but know sooner or later, things will change.

Sounds like you got it under control. Aquaphor is great stuff that's what I used greasy but gets results.You may lose your taste buds but eat anyway to help you get through this.

About the double treatment on Fridays. I have never heard of it but like he says they keep changing things and the docs are different with different ideas. I'm sure they know what they are doing. The only thing I remember seeing or having done is if you missed one they would add it on the end of the treatments not double up on a day. I would think it would be a less effective treatment to double up on a day rather than another treatment another day. Just my idea though we are just curious so hope Dave can find out for us. Congrats on your first week down and keep your eye on the end and keep moving forward-Take Care-God Bless-Russ

PipLily said:

Hello!

My husband had his first radiation, and first Cisplatin this past Wednesday. As far as the radiation, he did great! No claustrophobia, but the chemo has been more challenging than I think we were prepared for. He hasn’t gotten sick, but just feels like he was run over by a Mack truck. He has slept so much! I’ve really had to stay on top of waking him up to eat and drink enough. This afternoon has been a bit better, so I’m thankful for that. If I remember correctly, you are receiving radiation, no chemo? I’m happy for you, at least, for that victory! The waiting to get started is difficult, isn’t it? My husband just wanted to get going, to be done! Stay in touch, and let us know how you’re doing! Will be thinking of you....

Hi Piplily,

Saw your post on one of the new threads.  My husband is having TORS tomorrow.  He is Stage 1.  Tumor on left tonsil and one node on same side although we were told by the PA is the surgeon's office that they would likely take 12 nodes out for testing.  

I know you said your husband experienced a lot of pain after surgery.  I am trying to brace myself for that.  Any suggestions or advice?

Thanks,

SSJLynn

SSJLynn said:

Husband in same Boat

Hi Dave705, 

My husband is in a similar boat.  He was diagnosised one month ago today with SCC of the left tonsil with one effected lymph node.  That is how he discoved his cancer as is the case with most I believe. He is scheduled for TORS surgery tomorrow.  We are braciing for a painful couple weeks.  Then we will find out what is next as you say.  Our surgeon is at one of the major cancer treatment centers and said 20% chance no additional treatmwent will be needed.  But that means 80% chance it will be.  That treatment will likely be radiation.  He has met with both radiation and medical oncologist for consults.  Medical oncologist said he liekly would not need chemo. We are hoping that to be the case.  But of course won't know 100% until path report comes back.  

He too has been eating and also started driinking two Ensure a day last week per the Nutritionist consultation.  

I wish you the best in your journey. We are not far behing you.  

Best,

SSJLynn

And certainly hoping he is one of the 20%. Best of luck on his surgery tomorrow as we are hoping for complete success and no follow-up treatment needed. And we are hoping that Dave705 is doing well with his cancer situation and he will probably have an update in the near future for us.

Take Care-God Bless

paintmatt said:

I start chemo and radation

I start chemo and radation treatment in10 days my wife would like me to take her out for her birthday dinner and drinks. do not know if i should drimk this close to starting treatment?

Eat ALL of your favorites - and I mean a LOT of them. (Radiation and Chemo will mess with your sense of taste for a while, and you may struggle a bit, maintaining weight.)

I personally don't see any issue with enjoying a little of your favorite beverage either - but I'm not a Doctor, just a know-it-all electrical engineer!  (After you start treatment, though - I'd recommend following your Oncologist's advice - which will inevitably be to lay off the drinks during chemo....)

Show your wife a great time, for her birthday; she will be your greatest asset, as you start this process!

I wish you the best possible result from your treatment, and I'm glad to see you reaching out for support. Let people help you - they will surprise you, with how much assistance they will offer!

mg

Paintmatt welcome to the group and in fact the club nobody really wants to be in but it is sure helpful. Take your wife out and have a great time with a drink or two and have a great meal. And after that keep on eating and enjoying for now because as motorcycleguy says your taste will probably suffer and things won’t have any taste which makes it hard to eat. I would have to say after I was in treatment for awhile the food taste was from  0 to cardboard  if you would have rated it.  You may have to force it down afterwhile. Unless you are carrying a lot of extra weight right now your care team would probably want you to put on a little weight as this treatment tends to lead to weight loss because of appetite loss, loss of flavor, being nauseous, etc. What kind of cancer are you dealing with? How many radiation and chemo treatments are you getting? Do you already have a feeding tube or has your team suggested it? Check out the superthread at the top of the page as it is loaded with lots of info that may be helpful. Feel free to ask any questions here as you go along and enjoy life and eating now as this treatment is rough and you may have some tough times ahead in fact any of this head and neck cancer is a rough road but many have traveled it. Don’t give up as there is a light at the end of the tunnel and you will get through this. So enjoy your meal and cherish the time with your wife and God Bless. There are many members eager to provide help, advice, or a listening ear. If you want to you can also start new postings of your own if the ones you look at don’t apply to your present situation-Below are instructions on how to start a new topic taken directly from the help section at the top right of the page CSN Help. Good luck, stay strong, trust in God, Pray a lot, do your treatments and this will soon be in your past.

To post a new discussion topic on a discussion board:

• Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page.

• Click on ‘Discussion boards’ on the left navigation menu or under ‘Connect and Communicate’

• Locate the discussion board of your choice.

• Click the ‘Add new Forum topic’ link at the top of the discussion board page.

• On the ‘Create Forum topic’ page, enter a title into the ‘Subject’ field and your message into the ‘Body’ field.

• Select ‘Preview’ to see your completed message before it is posted.

• To submit your message, select ‘Submit.’

• When you select ‘Submit’ the message will be posted on the discussion board of your choice.