My husband was diagnosed with tonsil cancer stage IV that has entered his lymph nodes. He starts chemo on Feb 5th and for 3 times throughout 7 weeks plus radiation for 7 weeks. They are waiting to see if a neck dissection is needed after treatment is done. We are very apprehensive about what to expect when the chemo is started and then thru radiation. If someone could help us along the way and explain what to expect the first 2-3 treatments then we can go from there. Thanks so much.

Also, our dentist seems very apathetic in monitoring Todd during treatment. What experiences have been encountered with other survivor

Welcome to the club no one wants to belong to..
Apprehension is really normal, but you can make it through this. You've got a lot of challenges ahead of you, and it will not be easy; surround yourself with the best medical advice you can get (preferably at a comprehensive cancer center).

If you're dentist is apathetic, find a new one. It's an important part of both pre-Tx and post-Tx care. A cancer care center will have Dentists on staff to assist you with some of the details invovled in treating oral cancers.

As for what to expect...that's really tough to say. Each person is very different in how they react to treatment. Some common things with chemo are nausea, hair loss, sore throat, fatique, etc.

Radiation can really knock you down. Moucositis, burns, hair loss, VERY painful throat and difficulty swallowing, nausea. Todd is going to be sick, probably sicker than he's been ever before, and he'll be that way for some weeks.

It's overwhelming, it's terrifying, and it's DOABLE. Some days it's tough to get through an hour at a time, but you can. Try to off-laod as much of your daily routines as you can to family and friends, and concentrate your efforts on getting through and getting well.
keep coming here, and asking questions. Most of all let us know how you're making out
Wayne

It is doable and always remember that. Their are a good number of survivors here to walk you through everything you face and offer tips.

Keep us posted.

Jim

Hi Linda,

I had stage IV tonsil cancer as well with a single node MET.

Looks like he will take a similar path as I.

Anything I can do to help, just let me know.

It gets a little rough at the end, but it goes fast. And if he is healthy it will go even faster.

Try not to get too scared. Honestly this is a beatable deal.

The biggest thing is to fight.

Fight, Fight, Fight. Stay positive and persevere.

I am sure you will have questions. That is why we are here. I am always avalible if you need anything. Drop me a line. [email protected] is my e-mail.

Good luck and god's speed.

Robert Hamilton


The battle is winnable. Unpleasent, but winable.

Hi, Linda, in our experience, the chemo was pretty much a non-issue [John did lose his hair, and got tired,] but never had nausea. But to quote others here "the radiation kicked his butt". So expect that after the first couple of rad txs., he could start to feel lousy. If you work, you may need to take some time off, or rearrange your schedule to be available to him. Is he going to have a peg tube? If not, you need to have a good blender or food processor handy, and start stocking up on soups, shake recipes, etc. And do a search here of recipes that are high calorie and easy to swallow. I think it's better to take this treatment one phase at a time and learn [ask questions] at the beginning of that phase what issues you may need to deal with. As a caregiver, I would encourage you to get as organized as you can. Odds are, you will inherit his share of "household chores and responsibilities" for a period of time, plus it may well become your responsibility to keep up with meds,appointments, Ins. claims,etc. I've had trouble finding enough hours in the day many times. And Last, but not least, it's pretty necessary for you to stay healthy during his treatment, so sleep and "down time" is going to be important for you. You can get lots of support here- so hang in. Amy in the Ozarks

Dear Linda & Todd,

I would assume that your family dentist is probably apprehensive in providing follow-up care, rather than being apathetic. Most general dentists have very little training in this area, especially if they have been out of school for a long time or dont't take continuing ed courses in this area.

In general, most oral cancer patients are followed by the treating surgeon, oncologist, radiologist, etc. and not their family dentist. However, he or she should be able to provide you with regular oral cancer screenings, fluoride treatments and general dental care. If this is a problem, than I agree with Dragan, find another dentist.

I wish both of you good luck with the treatment and please continue to post.

Jerry

I presume that you are being treated by a team of cancer professionals, since your treatment regimen is complex and obviously not designed solely by your dentist. If your dentist isn't enthusiastic and compassionate, by all means make some other arrangement NOW......Get someone who is devoted to YOU. You do NOT want to fight the uphill battle of feeling some lack of attention by the person in charge of your treatment!!

Linda and Todd, Chemo was a bit of an anti-climax for me. I was so apprehensive about those first few treatments... The toughest part was trying to keep all the prescriptions straight and taking pills at the right time - before and after. The first few treatments of chemo made me feel cold - but that was about it. It got more intense later, but I was settled into the routines of the place by then.

Don't wait for the nausea to take the drugs that treat it. Be pre-emptive about it. It can be very tough to get it stopped if you wait until you think you need the drugs. Dehydration is a MAJOR issue in both chemo and rad tx. Don't lose fluids from either end if you can possibly avoid it. Don't tough it out - take the preventative drugs.

Being afraid is rational and sensible. There are some tough things on the road ahead. But don't let it immobilize you, let it make you mad and motivated. The medicine will do half the job - your attitude and focus does the other half. People who fight back can win. We are proof. Be smart, be focused, be positive, be pro-active. Check in here often and let us help. You are not alone. Tom J

Linda & Tom,

As you can see I was/am probably identical to Tom. I just posted my chemo/rad journey to Grace's post in this same section titled "scared wife" or something close to that. Please read that.

E me if you or he wants to talk off board. I also live in the sunshine state.