I agree with Gary. I went in two or three times for rehydration and it always made me feel much better (not sure if we're talking about the same thing - "infusion unit" - I just went to the RO's office and they gave me a bag of IV fluids for a few hrs). Also for mouth sores ask about viscous lidocaine. Just rinsing with baking soda in warm water every day is another good idea.

My best thoughts to you both.

Please mention the burning eyes to your oncologist BEFORE he gets his next chemo doses if possible (and don't let your husband con you into thinking that it has gone away or is not so bad - let the doctor determine this).

There are many side effects associated with cisplatin and 5FU and this could be one of them. As some side effects are cumulative (get worse with more doses), this might be an important. I have no idea if it actually is a chemo side effect, as only your doctor will be able to give you an idea, but would hate to think that it wasn't mentioned when it should have been.

Good luck next week

Don't know what button I hit but I had started a response that disappeared on me! Ouch! If this is redundant, I apologize.

So, as I was saying... round 2 of the inductive chemo was much friendlier. Because of significant response to first cycle -- tumor all but disappeared -- they backed down on chemo intensity and duration. It really did not shorten Jerry's 'recovery' period, but the symptoms were hugely reduced. Plus the anti-nausea meds were adjusted (replaced the Zofran with Emend) and we started the antacids four days in advance. Jerry did pick up a cold about a week ago. Nothing bad, no fever, but quite annoying. He also started to develop a rash on hands and arms about five days ago. Again, nothing huge, but also annoying. Friday -- three more days -- we go in to begin preparing for the chemoradiation phase of this treatment. Anxiety is setting in a bit. I know Jerry wants to avoid the PEG but I know I somehow should probably insist. I'm hoping the doctors insist -- or I should say "highly recommend" so I'm not left with the battle. But battle I will if it will save him from further complications later into the treatment.

I do hope that each of you were able to enjoy the holidays as best you couldl! Ours was a bit different but just being together was priceless! Thank you all for your support and wisdom! Take care!

Happy New Years Gayle!!

I'm happy to hear that you and Jerry were able to enjoy the holidays together, those are the moments and memories to hold onto during the tough times to come.

Please continue to use these boards for support when going through chemo/rads and let us know how you are doing, we are in your corner my dear. It's always a comfort knowing that there are people in your corner that can relate to what you are going through and can help steer you clear of some of the pitfalls of treatment.

Keep your chin up Gayle! It was good to hear from you my dear

Eric

Happy New Year to Everyone! My hope is that you each were blessed with special times together with those you love! I am ever thankful for the time that Jerry and I were able to spend together with our little family � two kids, two doggies! It was a bit different Christmas �missed the grammas and siblings and little ones, but have so much to be thankful for!

Last week we started the �planning� for phase two � the chemo-radiation. This site has been a huge source of support and knowledge to help me to best prepare for caring for my husband. I have to confess, however, there are some posts I read that simply scare the crap out of me! No one really knows how they will respond to the treatment. And of course I am praying that Jerry will �weather� it as best anyone can! He is willing to suffer whatever short-term misery he must to assure this disease never comes back again, however, it�s the long-term quality of life impacts that scare him the most.
The original RO at our initial consultation stated that dependent on his response to the induction chemo and the fact he had never smoked, they may be able to consider a lightened dose and perhaps only target the affected side of his neck, not both sides. Jerry�s response to the induction chemo was awesome! In fact, looking at the CT done this past week to prepare for design, there is no sign of any tumor life left! Again, feeling very blessed. However, the new RO still wants to the throw the kitchen sink at it � not sure what �it� is since nothing is there. I assume they want to �blast� the former tumor beds and the nodes and who knows. Seems reasonable and probably right � and yes, I am very ignorant! � but why the full dose of radiation? And what is that full dose? From the original consult, I recall varying levels of strengths � strongest at tumor (now tumor bed) and then two lowered levels of surrounding areas?

I am feeling so scared about this and reasonable ashamed that I am so scared! What a wussy I am! I�m just on the sidelines able to painlessly swallow and eat and� but I know I have to be strong for him; that I have to keep him swallowing and eating. I am hopeful that he will go through with the PEG. He keeps telling me he�s not going to do it yet nods in compliance when the doctors highly recommend he get one. I so so love my husband, but he can be a very stubborn man and I know he will test that on me. And I have to stand strong. There�s a part of me that understands how post cancer treatment couples sadly separate. I am so �tender� with him and afraid to get angry or mad at him because I feel so sorry for him, that well, I guess the caregiver can bottle it all up and then when it�s over be �I�m outta here!� needing to breathe. I may get some counseling myself because again, I love this man madly and want to remain strong for him, and want to be his informed advocate when he is faced with decisions regarding his treatment and care needs. Wow! See right now I am already feeling guilty because I have turned this on me and not him. And he is the victim here. He is the patient that is preparing to go into hell � again, and even harder. Cancer sucks! It took my dad and my brother and no way is it taking my husband!

So, why am I posting other than to vent? (thanks for allowing me to feel safe to do so!). I�m wondering if there are options to customize the radiation dosages and if anyone feels it worth me pushing the doctors to reconsider a more customized dosage plan? Worth asking, or is dosage pretty standard and that�s it? Also, Jerry badly wants to attend our daughter�s graduation from flight school. Please do not trivialize the desire of my husband to be there. Our daughter has wanted to be a pilot since she was 6 years still old! We�ve watched her and supported this dream for 18 years and now as she graduates from flight training we want to be there! Both of us! Based on the current �planned� treatment schedule he will be at the end of 18 radiation doses� Thoughts? (FYI, the MO is planning to lighten the Cisplatin). The MO feels Jerry is young enough and healthy enough that he will still be feeling pretty good at this time - especially with the lightened chemo component -- and feels we should pursue it! If Jerry does feel rotten then, well, obviously, he will not go. But the MO made a good point stating that wouldn�t you just hate yourself if you did not go and sat back in Denver feeling fine and wishing you were there! So, I am exploring airline tickets to get him to Texas but of course big price difference in fully-refundable vs. non. Just looking for feedback, thoughts, experiences.

Thank you everyone for your being so selfless with sharing your knowledge and thoughts, and your experience and advice. Do not remember how I found this site, but boy am I thankful I did! Hugs to all of you and wishes for healthy, happy days!!!!

Making travel plans when your husband has done 18 rad treatments is very ify. Of course everyone responds in their own way to everything and some sail right thru. For most of us we began feeling pretty lousy about the 3rd or 4th week of rads. Alot of how bad we felt was also due to chemo. Weekly doses of chemo seem to be better tolerated. I was scheduled for 3 big doses of cisplatin. After the first one I felt pretty bad so the second dose was cut way back and the third one canceled. That was just my experiences.

Being younger, he has a good chance of not having such a difficult time. Nutrition and hydration will play a huge role in how he gets thru this. Keeping up with 2500+ calories and 48+ oz of water daily will make help him to get thru it easier. Cant skimp one day thinking to make it up the next, that only leads to becoming malnourished and dehydrated.

I think its a great idea to have goals. Having the graduation to look forward to may give your husband something to work towards. It might help him to stay focused and push him to get the best nutrition and hydration he can. Everybody needs a reason to get up in the morning. Being a parent, seeing your child graduate is something not to be missed. Just be especially careful with germs and using the hand sanitizers as traveling while your immune system is low is risky.

Gayle wrote:

"I�m wondering if there are options to customize the radiation dosages and if anyone feels it worth me pushing the doctors to reconsider a more customized dosage plan?"

If the tumor is HPV positive, they are starting to look at a slightly lower dose after induction therapy in a couple of clinical trials. You could take a look on the National Cancer Institute site, and maybe reference a specific clinical trial when you talk to the doctors. That said, radiation dosage and administration is very complex. The danger is that if they don't zap it hard enough, it may come back. I've read some of the protocols, and they make my head hurt.

About your daughter's graduation - yes, go for it. My husband was still riding at that point. Just make sure he has a place to rest - the fatigue will start being an issue at some point.

Best wishes to you and your dear soldier.

[quote=Gayle]So, I am exploring airline tickets to get him to Texas but of course big price difference in fully-refundable vs. non. Just looking for feedback, thoughts, experiences.[/quote]
Have you considered getting the cheaper tickets and also getting travel insurance? Most have a "cancel for medical reasons" clause, and some allow you to cancel for any reason.

In September 2010 we bought non-refundable tickets for a trip overseas to visit our son in early 2011. There was a small possibility that my husband was going to have to have back surgery (not cancer-related) sometime before the trip, so I looked into travel insurance. We are members of USAA, and its travel insurance affiliate offered a "cancel for any reason" clause -- while the premiums were 50% higher than for the same policy without that clause, it still wasn't that expensive. (And as it turned out, he didn't need to have surgery -- but it still was worth the peace of mind to know that we could have canceled the trip if we needed to. I believe that at the time we purchased our policy it offered a full refund; now I see it's a 75% refund -- but that's better than nothing.)

I'd think the insurance cost, even with the "cancel for any reason" extra, would be less that the price difference between fully refundable and non-refundable tickets. Note that some policies include a waiver for pre-existing conditions (thus allowing you to cancel because of a pre-existing condition) as long as you purchase the insurance within a few days of getting your tickets and the persons being insured were medically able to travel on the day the tickets were bought, so perhaps you could avoid the "cancel for any reason" extra. As always with such things, read the fine print carefully; if you have questions, call the company (and take good notes!).

If you decide to get travel insurance, I'd suggest buying it separately, and not from the little popup or tick-the-box-if-you-want-it on your airline or travel agency website -- that way you can more easily customize the insurance policy for what YOU would need. If you are members of USAA, search for "travel insurance" on the USAA website -- the link to the affiliate is under "Cruises & Travel Insurance" in the search results (the page itself is titled "Vacations and Travel Insurance"). If you're not, you can go to insuremytrip.com (which offers policies from several companies) or travelguard.com -- both are reputable and have a wide choice of policies/coverage. You can at least price it out and see it works for you before going ahead and purchasing your tickets.

Check with your credit card company - visa (our visa) has. Cancellelation insurance built in. No extra fees... I discovered this this year!

Hydration was titanically important in my treatment. I cannot express how important full hydration really is. My worst moments, a few of them very dangerous, were because I was not properly hydrating. It's so easy to just go to bed and sleep the day away since you are feeling crappy anyway. I ended up in the ER three times that way. And for the patient, it's very easy to lose track of how much you are hydrating with everything going on, not to mention all the drugs make forgetting things quite common. The water also helps you to keep swallowing, which exercises the muscles and keeps them in shape. So water water water. Water is life. Have some and then have some more!

Also, please do not be so hard on yourself as a caregiver. This is in many ways even more emotionally taxing for them. The patient often becomes very focused in their attention and are concentrating on just putting one foot in front of the other. The magnitude of everything is often lost to them between dealing with pain and sickness and of course... the drugs. But the caregiver is often assaulted with the full totality of the struggle and it can be entirely overwhelming. My hubby shut down a few times from it when he refused to take a breather. You are no good to your husband if you aren't also treating your OWN struggle. Take a break. Ask for help. Talk to people you trust about your experiences and frustrations. Whatever you need to do in order to maintain a level of commitment that gets him through this.

And remember to always keep love at the front of all you do. The love is the light that cannot be extinguished. It burns as long as we breathe life into it. So remember to breathe. Remember to breathe. You can get through this. You can.