"Newby" Husband Has Tonsil Cancer

Thank all of you for your messages. My husband and I don't like surprises and you all are a wealth of info. When we get through this situation we will continue to try to "pay it forward" and support other "newbies"!!!

Butterflydance--I agree honesty is best--We got our children together yesterday and they know what is going on. The girls are very different. My oldest asked a lot of questions and my youngest, 16, didn't say much--at all. She has a tendency to internalize her stress. We'll keep a watchful eye on her. My oldest returned to college this morning, but she will be back home the first of May for the summer.

Tom--our oncologist doesn't use Erbitux--I don't know why because I haven't talked to her directly since you mentioned it, but the nurse was familiar with it. I'll ask. The plan is for him to receive Cisplatin, Doxitaxal, 5-FU--to start Monday.

~meesha---I can tell you must be artistic with the way you type your name--I have an appreciation for the creative...I'm very happy that your boyfriend is on the downhill slide of his radiation treatments. I am assuming they are daily??? Wouldn't this be #4 or so if they are daily?

Mike---CONGRATULATIONS! Clean CT, PET and biopsies---WHOO HOOO! I can not wait to be six months out and be able to celebrate too!The oncology nurse has already volunteered that Larry will be given Emend and Aloxi for nausea when the need arises. He is already on Ativan which Larry is using as an anti-anxiety drug, but I've read people have good luck with it as an anti-nausea drug too. Of those who used Ativan--what was or is your daily milligram use?? Larry is taking one milligram ever 8 hours.

Babzilla--sounds like our husbands are fairly close to start times in this mess...I am with you on everything is overwhelming, but we don't do surprises!! I am searching the web daily. I have also got some health care professional friends who are doing some investigation concerning IMRT versus Tomographt Hi-Art radiation.  We don't have Hi-Art in Georgia. Our radiation oncologist recommended going with IMRT unless Larry has distant mets. Then she offered to do the invstigation of who and where would be a good choice. We would consider moving out of state for the 6 weeks of radiation for the "new and improved" if necessary. Anyone know the bottom line---is it worth the difference??? i worry about him being too sick and isolated from friends if we move.

Joe--I like the use of "corrective mode". I hope you are right that this is the worse part as far a the fear factor. You have a new lease on life and it sounds like you are embracing your "new normal". Thanks for responding also--you are two years plus out and still paying it forward by staying in cotact with us newbies! 

You guys are invaluable--hang with me--WE need it!!!!

DeniseB

I am fairly new here too and the wealth of knowledge IS absolutely wonderful.  Everytime I am with my husband at the Dr., I already have an idea of over half of the things they are telling me because I read it here.

 This has definately been a journey for us; My husband is only 41, me 28 and we have an 8 year old daughter.  She knows about Daddy's "sickness" but I don't think she fully understands the gist of it yet.  He just had his second dose of Erbitux and his second of 42 radiation treatments today as well.  I am guessing once we get further along it won't be so easy.

Hang in there, you are not alone;  We will all get through this, God willing cancer free!!

Denise, my dose of Ativan was 1mg every 4-6 hours as needed. I was initially started on it for anxiety as well. I'm glad to see youre finding the information you need. All you need to do here is ask, someone will know.

Best Wishes...

Mike

I'd be interested to know why he's not using Erbitux. From what I've read, it's widely used. If you've been to the Oral Cancer Foundation board (www.oralcancerfoundation.org) it's all over the place.

I think some clinical trials were stopped because people were dropping dead.  My treatment was almost two years ago and things are a little hazy.  What I heard back then was that some people on a combo of Erbitux + Cisplatin were having heart problems.  That's what I had and I seem (knock on wood) seem to be fine.  I was only 45 at the time.  Maybe that had something to do with it.  All I know is, that's what I got and I'm still here :)

Tom

I don't know where you live but I live near Stanford California and there are support programs and summer camps for kids whose parents have cancer.  Keep an eye on your daughter because I have 3 children.  My son was 13, duahter 14, and daughter 16 when my husband and I were diagnosed with cancer.  My holdest daughter went into a deep depression with in 4 months of our diagnosis.  My second duaghter went into depression during her senior year as she was writing her college application essays. My son who is a senior in high school now is okay so far.  The girls are somewhat ok and are getting through college but when my husband goes to the emergency room for anything they all panic and grab friends to stay with them until they hear from me.  Cancer is very hard on kids.  I am not a psychologist by any means.  This is just what I have observed with my own three kids so far.

I hope this is helpful to you,

VWWLI

Teenagers are a trick all of their own. I'll keep an eye on them. We are anticipating that my husband and I may go out of state for treatment. We'll be six hours away from home. We do not have extended family in town. I had invisioned allowing my 19 and 16 year old staying together with neighbors being available. Now, I'm concerned that they feel abandoned instead of empowered...my husband says he won't go out of state if we don't have an adult in the house. My brother and sister have offered, but what a sacrifice.........any other thoughts.

DeniseB

Hi Denise,

If folks offer to help you, take them up on it. Your hands will be full and it will ease your mind knowing the kids are in the care of loving family members. If somebody offers assistance for anything they probably feel kind of helpless and by accepting their help it will not only benefit you and your husband but them as well. Kind of like win/win/win!

Good Luck!

Joe