Hi everyone,

My name is Pam and I have been reading posts for several months now and decided it was time to introduce myself. I was diagnosed with SCC-Base of Tongue/Stage IV in Feb.04 at 41 years old. I had 40 radiation tx's - 1/2 were conventional and 1/2 were IMRT. Also had 3 rounds of chemo consisting of Carboplatin, Taxol and 5-FU which ended in June '04. Had right radical neck dissection in July '04 -path reports showed no sign of cancer which in itself was surprising since I had large tumor in neck and an enlarged node near collar bone upon diagnosis. All scans since then have also been clear. I finally had the PEG removed in January of this year but didn't manage to gain any weight until just the last 3 months. Eating is a challenge due to the fact that swallowing remains difficult - it has improved and continues to do so slowly - such a lesson in patience! There are items I'm sure I'll never eat again but with experimentation I've discovered there's plenty I can eat. My overall nutrition has improved because I rely heavily on vegetables and fish. Just about any baked fish works well. I can get into a more detailed "laundry" list of what works for me later if anyone is interested.

One way the cancer experience has affected me is in bringing a desire to study nutrition. I am considered starting college in January to pursue a degree in dietetics/nutrition. I would love to be able to work with fellow cancer patients - that was one area I felt was lacking in my treatment - I only saw a nutritionist once and all she did was give me a 6-pack of Boost - alway felt we were on our own to figure out how to get enough calories with the tube - and I didn't because even with the Jevity/Boost/Ensure I still lost 80 pounds - thank goodness I had it to lose but this had to have slowed down my recovery. I feel like I had wonderful medical team - am crazy about my ENT oncologic surgeon and radiation oncologist. So anyway, if I want to pursue this career path I will be almost 50 by the time I could enter the workforce - seems kind of late to get a career started but I think I want to go for it. I have always been a stay-at-home mom, but my kids are now 20, 16 and 14 and are encouraging me to do this as is my wonderful, supportive husband. We will see - I will start with 1 or 2 classes at my local community college to get my feet wet.

Now, I feel like I am rambling on and on. I was shy about posting and now I won't shut up! I wish I had found this site while I was still in treatment because you guys offer up so much support and help. But during treatment I wasn't up to surfing and posting anyway - I'm just glad I found you a couple months ago, everything I have read has given me encouragement to keep moving forward. I just hope I will be able to help someone. Thanks for reading and being here.

Pam

Pam.

Welcome and congratulations on your progress over the past year. I think you're right that this kind of cancer experience can get you focused on nutrition. I always thought that I had a pretty good, balanced diet even before having cancer, but in the years since I've paid even more attention to getting plenty of fresh fruits and vegetables and fish (partly because I was concentrating on things that were easy to eat). Good luck with your studies -- it sounds like you're well on the way.

You may be surprised at how much improvement you continue to see in your eating ability over time. When I was about a year out from treatment, I assumed I had probably hit a plateau in terms of healing, but I saw quite a bit of progress beyond that point as well.

Cathy

Pam, Hi. I have 3 immediate reactions to your post[so glad you did post].#1 If you love you Docs, then Tell them about the lack of info from the nutritionist and suggest they find a good one to refer patients to! #2. Go for it with your career-50 is young[I'm 65 and now raising a 14 yr. old and an 18 mo. old]#3. We live in a "frozen fish" part of the country. Any good fish recipes would be gladly tried. Good for you. Amy

Hello Pam,
You remind me of myself in some ways. I, too, would read the posts but yet never join in. I was in denial for a long time. Also while some people have a "need to know" what's going to happen during and after treatment, I was the opposite, I didn't want to know.
I totally understand what you mean about the nutritionist. I never saw mine but she phoned twice and sent literature. She suggested things like "try adding ice cream", even though I told her that it was very 'bitter' tasting and that I couldn't tolerate it. Then she added "try a different flavor of ice cream", dah, don't you think I tried that too. Also she would suggest things that were difficult for me to swallow. Most people can't grasp the concept of what this is like, they don't have a clue. It would certainly be a relief to speak with someone who has been there.
Start your classes in January, you'll be glad you did. Don't worry about age, it doesn't matter. As long as you are doing something constructive and fulfilling then go for it. The fact of studying and being tested on food groups doesn't bother you? I mean, you wouldn't find it depressing at all in view of the fact that you can't eat certain things? At any rate, wishing you all the best. Barbara

Pam,

Welcome and I'm glad you have started posting. Your response to me about my struggle to get off the feeding tube was very encouraging--your perspective is definitely needed here! I teach at a community college and I can tell you that you probably won't be anywhere near the oldest person returning to school your community college has seen. And we faculty all love the older students because they really are focused on learning, not "partying" while they are there!

And it's definitely true the world could use more good nutritionists ( I saw one briefly at our hospital who also was not very helpful).

Nelie

Barbara,

It does sound like we are alike in ways. I pretty much went into some kind of auto-pilot during treatment. I wouldn't say I became totally reclusive, but I didn't have the strength for anything other than treatment and immediate family tasks. I didn't e-mail anyone or do research - frankly,I had done some research prior to treatment and decided I didn't want to know anymore right then, it was too depressing. My doctor even cautioned me about reading too much online because so much of the information was not peer-reviewed. I didn't find this forum till just a couple months ago and have been reluctant to post because basically I'm a quiet, somewhat shy person.

I hope that studying about food won't bother me - it's strange, but as soon as I finished with my treatments, I started cooking for my family more than I ever had. I couldn't eat what I cooked, but I could have my hands in it and smell it and kept telling myself that I would eventually eat some of it again. I have literally read dozens of cookbooks searching for things I could prepare and hopefully eat.

You're right about how people cannot comprehend where we are coming from - they just don't understand when you tell them "no, I can't swallow mashed potatoes and milkshakes don't work either." Thankfully, milkshakes did eventually come around, but mashed potatoes still don't work well - might as well be eating glue! Once in a while, I get upset or mad because I can't eat certain foods but I get over it pretty quick - I just look back to a year ago and think how much better it is now and I'm satisfied again. It's just that we can't really put our cancer behind us because of the eating and swallowing issues - we have to study what to eat and think about where to go if we want to dine out - nothing is spontaneous anymore - and we are faced with this at least 3 times a day - other people just don't get it.

Thanks for your encouragment about the return to school - I need all I can get, that's for sure. Wishing you continued improvements

Pam

Cathy,

Reading your post about seeing improvements continue past the first year is very encouraging. I sure hope there are still improvements to be had! I have noticed that about every 3-5 weeks or so there is some noticable improvement. It's great to see how many years out you are from all this - gives a lot of hope -I refuse to believe this can't be beat - and then again, I have been accused of having a "pollyanna" attitude. Anyway, one day at a time.

Do you have a dry mouth or did you avoid that? I have some saliva production but still carry a water bottle everywhere - it's livable and I certainly stay hydrated! Thanks for your encouragment - you give me hope.

Pam

Amy,

Thanks for helping me decide I needed to start posting - like you see, now I won't shut up! In answer to your post - I have mentioned to the docs about the nutrition area and they said they appreciated the input - once Dr. S was joking around and said if it was him, he would be figuring out how to pour a margarita down the darned tube! Anyway - wow, raising a 14 year old and an 18 month old - what a chore - I'm sure you'll receive many blessing while doing so though. My 20 year old is in school at Fayetteville and pretty much takes care of herself but I have a 16 and 14 year old here at home - keeps me on my toes.

Here is an easy baked fish recipe that I love-I have used both catfish and tilapia - both frozen fillets I got at Wal-Mart - I put soft-cooked broccoli and squash with this and usually some kind of slippery pasta - has become one of my comfort meals

catfish
1 cup dry breadcrumbs
1/2 cup parmesan cheese
1 tsp paprika
1/2 tsp oregano
1/4 tsp basil
2 tsp salt
1/2 tsp black pepper
1/2 cup melted butter

Pat fish dry. Combine breadcrumbs, parmesan cheese, and seasonings. Dip fish in melted butter and roll in crumb mixture. Arrange fish in a well-greased 13 X 9 X 2-inch baking dish. Bake at 375 about 25 minutes or till fish flakes easily with a fork. If using the tilapia fillets, I decrease the cooking time to about 20 minutes.

I never, repeat never baked fish prior to cancer - I grew up in Arkansas - we fry fish! But I have discovered that baked fish can be delicious.

One last note - isn't Arkansas beautiful today? The rain came through last nite and today is absolutely gorgeous - finally starting to see some fall colors - I was afraid the lack of rain this year would take away some of the color, but it is starting to show. I've taken the dog on one walk already, but it is so crisp and nice out, we're going again! Take care and tell John hello from me.

Pam

Yeah Pam! Thanks for posting-isn't it fun I will try the fish for John. He likes both tilapia and catfish, but is tired of the way we cook them. I am looking for chicken thigh recipes for you. Our little part of Arkansas is getting really pretty. The maples and dogwoods are gorgeous. I've had Elli outside for at least 2 hrs. a day for the last couple of weeks and I can't get the dogs to come inside. Dr. S told John to "go for beer down the tube if it made him happy" Any advice about living with a 14 yr. old would be appreciated-it's a little out of my age group-and my homework expertise[ the 18 mo.old is easier to research- Amy

Pam,

I wasn't able to avoid dry mouth problems. When I had radiation, I think there wasn't anything available as a preventive measure against it, so it was fairly severe for a long time. Eventually I started taking Salagen (oral pilocarpine) when the clinical trials began around 15 years ago, and I've kept taking it ever since. It has helped me get back some of my saliva production, and the Biotene products (mouthwash, gel and spray) have been an added help. Thankfully, my saliva has gotten back to a much better level than I ever thought it would, and I have very few eating constraints.

BTW -- I also bake catfish and tilapia and adapted a sauce that I found at Whole Foods market (just spread this over the fish before baking):

2 tablespoons olive oil
Juice of one lime
2 teaspoons prepared mustard
2 tablespoons chopped cilantro
(I also add either some Old Bay seasoning or a small amount of chopped chili peppers -- not recommended for soon after radiation, but maybe later )

Cathy

HI Pam, You Make me miss Arkansas. I loved it at this time of year. I won't get any snow here in Florida. I'm on a soft diet. You might want to add
that when talking about what to eat. I eat bake
potatoes, sweet potatoes and baby food. Lots of
Ice Cream.
Cathy

Hi,

I am new to this site and am my Mom just had a partial glossectomy. She is 83 and the surgery went well. They did not do any node removal. It seems that most of your posts state this 2nd step.. Her CAT and Pet were neative

Hi Pam, Welcome. I am also and educator who has has experienced a bought with cancer. A positive attitude will get you everywhere. You wanting to get an education in a field you feel strongly about due to a personal experience gives you a real incentive to persue your career. It is never to late to get an education. It is something you will not regret. You will find that now that you have a purpose, school won't be as difficult. There is a nutritionist from the University of Wisconsin who has published a cook book entitled Easy to Chew Easy to Swallow. I purchased it and it has great reciptes, in addition to many very helpful suggestions for persons who have had oral surgery and radiation. I notice you live in Arkansas. It is a beautiful state. My son lives in Berryville. I visit your state when ever I can. Some advise for your education. Don't take a full load (15 credits) at first. I would suggest 12 at the most. Take your classes at a junior college where you are in a classromm with a teacher. THat enables you to ask questions and participate in a discussion. Classes on line are not very personable and neither are classes that are presented on a TV monitor. Best of Luck. If you are interested in the name of the nutritionist who wrote the cookbook let me know. Hacklene

hello everyone, my name is lenny, glad I found you folks. i have been recently treated for cancer of the tonsil, I have completed 33 radiation and 3 chemo sessions, I will be having a neck dissection on wed jan 11, my cancer had already spread to lymph nodes before treatment began, in fact that is how I found out was through that lymph node, sure am scared. hope that there are some long term survioors out there who can give me a boost, sure need it, e-mail me please [email protected]