Today John is "officially" half way through treatments. Friday was his 4th chemo. He is hanging tough but things are pretty rough. He is taking Zofran for the nausea but it doesn't seem to be doing a lot to relieve it. I put in a call to the Oncologist for maybe something stronger. He has lost 10 lbs. and should be using the feeding tube more than he does. He hasn't had to take any pain meds yet. The mucus is getting to be a big problem. He is very nauseas and tired. He saw the RO last Thursday. He put the scope up his nose and down into his throat. He said he looks like he would expect him to look at this point. He said from what he can see the tumor "appears" to be shrinking a little.

My question is - what happens when treatment stops? I guess I have been a little in denial but I haven't considered that the treatment wouldn't get rid of the tumor. Wanda

Hi Wanda,
I can totally relate to your concerns. During treatment, you just hunker down and do what it takes to get through it. Another mind set starts when you are finished with treatments. It's been 31/2 weeks since Richard's last treatment. The RO seemed to think the node should be totally gone. She mentioned that the nodes are sometimes more stubborn than the primary. The MO was very encouraging and told us the treatment would continue to work for several weeks. The MO was correct and the node continues to shrink and get smaller. So we will have more info when we see our Head and Neck surgeon on April 15th. She says that she always likes to wait 6 weeks after finishing treatment to see the patient because the treatment is still working. So, we wait and that is the most difficult.

As for now, Richard is doing great. He's eating almost all his calories and is back to doing most of his normal activities. He still has many issues from the treatment and takes his naps, but we both feel like we are starting to get our lives back again. Take each day as it comes and enjoy what you can in your life. We can't change the past and we are not promised the future, so the present is all we have. This is the hardest lesson of all. Take care... Geri

Well, we all seem to be within weeks of each other on this topic. My husband finished chemo, Erbitux, and RT on 3/12. Our appt with the surgeon is 3/30. RO says the tumor on the tongue is gone however the node on one side has not gone down enough and he thinks we'll be looking at neck dissection. We are in the "thank God we don't have chemo or radiation today" phase and Mike is doing well with peg tube - now that we've switched to gravity feedings. The mucous problem has been kept pretty well in check by using the rinse (water, baking soda, and salt). Life seems rather calm at this point....we are taking it for what it is and hoping as the treatment still works that the node will shrink further. As Geri says, enjoy what you can, the present is all we have.

Wanda,

When the Tx stops the radiation and chemo still continues to take it's toll on the body for weeks and for many it is the worst time of the entire Tx experience. The total body weakness continues for months. The dry mouth and lack of taste can take years to recover as much as it will. The mental aspect is different in all of us but it is something that we all deal with. Watch out for the thyroid as the radiation can render it ineffective months post Tx.

Hi guys,
My h has completed 13/35 rad treatments, and is in terrible pain.
If the tumor and/or nodes do not go away completely, do you know how long the doctor waits before surgery? How long does a neck disection "take you out of service"?

Judy,

Easier said than done but try to calm down. Without knowing anything about your H's cancer, staging, Tx, etc. he has a long way to go before one can determine if the Tx was successful so concentrate on today and don't worry about the what if's.

If he is in pain then his docs need to know that. There is no need for pain and there are many drugs that can be tried as the intensity of the Tx will only get worse usually abating a few weeks AFTER radiation has stopped. You also do need to make sure that he is well hydrated each and every day, shoot for 48 ozs of water and make sure he consumes at least 2500 to 3000 calories each and every day. Also make sure his docs approve anything you are told to do on this site.

Is he on a liquid diet now?

Does he have a Peg?

Is he getting concurrent chemo and if so what type(s) and frequency?

Tell us more and we can refine our recommendations.

Keep with this site as it will prove to be the best in many areas of his Tx.

Thanks david,
He has a stage 4 SCC w/ spindlke cell variant timour in his hypopharangeal space. It takes up the entire space, so they can't remove it with margins,and it had spread to lymph nodes on both sides of his neck. We live in NY and I'm sure we are getting excellent care- we are at NYPH and had the same recommendations from memorial sloan kettering- so I do ahve faith in the doctors. He had induction chemo (3 diff chemicals- I know cysplatinum and FU5, not sure of the 3rd)in the hospital for 5 days while they wrote the IMRT program. He started chemo/radiation 3/5/09- he's getting cysplatinum every 3 weeks and radiation every day for 35 times.
The first 2 weeks of radiation were fine (so was the induction chemo) and then he turned a corner. He developed thrush and they've given him an antifungus med that starts with an F. Hopefully that will reduce the pain. He does have pain killers but he can't even talk and cries or sleeps most of the time. I just think he needs to focus on an end to the treatment. He does have a PEG adn he is feeding himself through it with 4 cans of food and 60 cc's of water each feeding- and trying to drink but really only gets down a few bites of yogurt or a few sips of ensure. This is pretty awful.

There is no set rule for his being out of service except for the hugging and kissing thing. We are all different and all handle things in different ways and times. Make him think positive for starters. The more upbeat the better the healing goes. No guarantee tho.

You need to get his pain under control. Make sure you tell his docs the same thing you just told me. There are many different types of pain meds and they should be able to find a combination that works for him. Might even want to consider some meds to deal with his depression as well. As I said before, his side effects will probably only get worse from now thru 3 or so week post Tx so you really need to get this under control before things really go south.

His thrush med is probably Diflucan which works really fast to stop the symptoms.

It also sounds like he's not getting enough calories or especially water each day and those 2 are extremely important to insure his Tx is as effective as possible.

Get some Carnation Instant Breakfast VHC. It comes in a small 8 oz can and packs 560 calories so he will get more bang for his swallowing. You can either order it online or thru a pharmacy like Walgreens or CVS.

Watch out for the Cisplatin as it can cause hearing loss. Ask him to tell you immediately if he hears "ringing" in his ears and if so you need to tell his chemo doc.

Unfortunately your job as the Caregiver is to make sure your patient does all the right things and coming to this site is just the beginning.

You might want to update your signature line like most of us so you won't have to repeat yourself everytime you ask a question.

We are here to help the both of you get thru this but you need to get on top of the things I have just mentioned ASAP.

The main thing is to take one step at a time. I hate that comment myself but it's true. David is absolutely right in the fact that the pain has to be managed.

I think the fentanyl patches are great as you only have to change them every 3 days, can take "breakthrough" pain meds as needed and is an effective pain med by its self.

It's easier to have hope when you're not in pain. Worry about the neck dissection when it comes, thinking about everything can be too overwhelming and I do think antidepressants should be used.

My thoughts and prayers

Eric