Hi,

I am new the discussion and new to being a wife of a cancer victim. My husband had a biopsy on 9/11/06 - not the day for a biopsy - we got the cancer diagnosis on 9/12, he had a Pet and CT scan on 9/18/06 (my birthday) and we learned he has stage 1 squamous cell cancer of the tongue with a couple tiny (less than 2 cm) spots on a couple lymph nodes, we went to a local oncologist the following week, to MD Anderson for a second opinion on 9/28. He was scheduled to start radiation with the local oncologist and at the local cancer center on 10/23/06 - that delay was very frustrating and scary. The cancer center then called on the morning of 10/23/06 to cancel the start of his radiation and could not tell us when they could reschedule - they supposedly were having

Barbara,

Please detail his Tx protocol. It's helpful when answering. Where is he being treated?

Forget the taste. We all loose it around the 2nd to 3rd week of rad. Mine still hasn't come back to normal and I am told it may be many more months before that happens.

I was sensitive to cold early on and drank my Ensure Plus room temp until I found the Carnation VHC which I also drank room temp until the cold didn't bother me.

It's very important the you make sure he stays the course with his daily water and "food". Falling behind will get him into trouble real fast.

I did not have a tube at the recommendation of my docs. It wasn't fun but there are problems either way you go. I did find that the VHC helped me a lot because I had to drink less to get the same cals.

There were several periods of my Tx that sleep was a problem. The worse was when I was loosing my salava and I was just producing the thick stuff. I would wake up choaking all the time. I really didn't like taking any of the pills they prescribed and I don't remember any pills for sleep problems.

As his Tx continues, your husband will experience many more side effects depending upon his Tx. Don't hesitate to post often. You also will play a very important role and there is a Caregivers section that can be very valuable to you.

Good luck to the both of you.

Barbara,

David is right about "normal" taste disappearing. It happens all the time with head/neck radiation -- the only question is how quickly it happens, and how long it takes for it to return. Radiation is a cumulative process, so the side effects can be expected to continue for weeks or even months after the end of treatment (the rule of thumb around here is that it can take 1 month of recovery for each week of radiation).

In the meantime, your husband can't let his lack of desire for food dictate what he eats (or doesn't eat). Nutrition and hydration are absolutely essential for recovery, and there should be a hospital nutritionist that can help monitor his condition and make suggestions about how best to keep up his intake. Some of us didn't have tubes and got through by eating very soft foods (like baby food, fruit smoothies, Carnation Instant Breakfast, eggs, creamy pasta dishes, etc.). Others have found that a tube was absolutely necessary to maintain their nutrition levels - so do whatever it takes to get enough calories (and liquids) into his system.

Cathy

Like the other posts stated, your taste definetly goes. He'll have to eat, to nourish, not to enjoy. Not an easy thing to do at first, but you know you have to. I found using a straw when drinking boast and other drinks helped. That way it just goes to the back of throat and it's down! Also I was given samples by my chemo nurse of a product called Resurgex. I ordered them off of the internet. It's high in protein,and you mix it with water, so it's not milky tasting. I was able to get that down. I still use it for the calories and protein in my recovery. Make sure he takes in water also. Hope this helps.

Thanks for all the advice. Michael started the steroid pills this morning and now has had two. He is still not eating much, but at least he ate a little today. He is having six weeks of radiation (IMRT) - the last two weeks - really parts of three weeks due to Thanksgiving, he will be treated twice per day. He starts twice a day 11/20/06 and completes treatment 12/05/06. He is being treated at the Cancer Center of Providence Hospital in Mobile, AL. They are affiliated with MD Anderson. I think to some extent we are both still in denial that this is really happening and Michael thinks there should be some

Barbara,

Don't let him fall behind on his water and eating. Not one day! That's one of the best things you can do for him. Eating a little is not the goal. He will fight you on this but be persistent. It can lead to all sorts of problems. I'm not saying you will be 100% successful but the more you get in him the better off everything will be. I fell behind often and wound up in the ER twice and the hospital once. I would even lie to my wife about how much I had had just so I didn't have to go through the pain and nausea.

Denial is normal, we all went through that. It's our way of mentally adjusting to our Dx.

As far as the "easier cure"... I told everybody, including my docs, how barbaric I thought this Tx was. I wasn't worried about the cancer as much as I was about the Tx. I survived the Tx first and the cancer second. I understand that Tx we are recieving today is better than it used to be, at least from the long term side effects.

Hang in there, both of you.

Hi Barbara,

I want to echo what David is saying that Micheal needs to force himself to eat every day as nutrition/hydration will help minimize the side effects and help with his overall recovery. It will go quickly downhill if he doesn't eat. There were days when I felt like the food police with Jack but it did pay off in the end.

The PEG tube does make it easier to maintain calories and fluid on the days when he just doesn't feel like it, but it's also important to keep swallowing even if it's just a little bit at a time. If he's going to consider the feeding tube option you don't want to wait until he is beyond a point where they can do it.

I wish there was an easier cure and maybe one day that will happen, but in the meantime just keep telling yourself that this too shall pass. It's such a shock in the beginning that you can't really take it all in - that does come with time.

Best of luck to you both.
Regards JoAnne

Hi, Barbara, there is not much to add to the good advice above, except, as a fellow caregiver, I want to encourage you to also take the best possible care of yourself. You will get weary and quite likely worn down during the next few months, so find a way to rest yourself and you need to eat wel also. Amy

Thank you again for the advice. It is a full time challenge trying to convince Michael to eat when it does not taste decent. At least it is the weekend now - no treatment for two days and no work. I have a full time job too and been attempting to work about half days since he started treatment. That has been difficult too. Wherever I am not at (with Michael or at work) I feel guilty.

I actually work for in the health care field in early intervention for the health department. I semi changed careers when we moved to Mississippi two years ago. I had worked in community mental health for years.

Our relatively new status here is also somewhat of a problem. We have some "new" friends here who have been nice. Actually they have been very nice, but since we did not know anyone here when we moved so we don't have long term friends here. We do not have children and only Michael has a sibling who does not live in this area. I have cousins around the country, but no one here. So our support system is very limited. Plus Michael really just wants me near him at this point. So yes, I am tired already - probably more so from worry and sleep problems than actually doing things, but I am concerned about the possibility of me getting sick. Also since I work with young children - birth to three - I worry about me being exposed to colds etc.

So caregivers, what do you do during those moments when the bottom literally seems to drop out of your stomach with the fear of "what if it isn't cured?" or "what if it comes back?" As an old mental health person I ought to know how to cope with this better and it is better than it was the first few weeks before we got the stage 1 prognosis, but I still do get those moments of total panic every now and then. Probably no easy cure or magic solution for that either, I guess. Right now I keep telling myself that nothing in life is certain and to enjoy each day and moment, but right now the enjoyable days don't seem too enjoyable.

Hi Barbara,

My husband was originally diagnosed with Stage III tonsil cancer in May 2002, 3 years after we relocated from Florida to Indiana. We primarily moved to be closer to my aging parents, so his illness at the time and his recurrence (yes, the "r" word) has been a double-edged sword. We moved 900 miles in order to take care of them and the role has been reversed when these cancer episodes have emerged. Coincidentally or perhaps not, issues with the health of my parents have also flared up as things get going with my husband, so the sense that I'm not doing enough for the folks I love the most is sometimes overwhelming.

The four years between my husband's original diagnosis and now with the recurrence seem, of course, to have flown by. I wish now I would have been more attentive to all the wonderful things in our lives and less worried about the "what ifs," especially at the beginning of the remission; worrying about the "what ifs" did not keep the darn stuff away.

I remember saying the first few months after diagnosis last time and when treatment ended that it was like an uninvited, unwanted guest had plopped itself into the middle of our lives. We had to pay attention to this 'guest' but I would be damned if I would let it rule my thoughts. Maybe I even fooled myself into thinking we had this thing licked.

Treatment for my husband will probably start within the next couple of weeks. I, too, intend on working for as long as I can. Now, though, I feel like I'm cheating my employer as I don't feel like I'm completly there either.

My strategy I'm planning on using when the treatment gets underway is to check in with my husband and myself every morning with the question, "How are you/am I doing?" If either one of us is emotionally or physically shaky, I'm planning on being with him. It's just too darn important.

Good luck, Barbara.

Loretta