Good afternoon everyone.

My name is Colleen and my brother was diagnosed with SCC, with involvement in the lymph nodes and we recently found out that it has spread to his lungs, although they say what they found in the lungs is "microscopic".

He had a rather large tumor in the upper right quadrant of his mouth. The skin of his cheek is involved, as well as the roof of his mouth, the sinus and some of his cheekbone. A 10 hour surgery had been planned but then was scrapped at the last minute because the tumor was so large. So he began aggressive chemotherapy.

He's had one round already, and is due to go back for another round in about 2 1/2 weeks. The first round was pretty impressive as it reduced the mouth tumor in size by about half.

I do not know what stage, but my guess is 4. We are trying madly to get second opinions, but because he has already begun chemo no one will see him until he is at a "decision point" which should be after the second round of chemo.

My family and I are all terrified. He is only 55. He was a heavy smoker/drinker - and unfortunately had been using SKOALs for the last few years (since he had a double hip replacement).

Right now just looking for advice on getting some nutrition in him. He's become very thin and I want him to be able to have something to fight with!

Thank you everyone.

Colleen

Hi Colleen,

I am sorry you have to be here, but be assured we will help you in any way that we can. Please keep posting your questions and concerns.

From your first post you did not mention anything about a peg tube for feeding. Does your brother have a peg tube? Can he take any food by mouth? Have you discussed with any of the doctors about his feeding or getting a peg tube?

One form of high calorie and nutrition is a drink called Carnation Instant Breakfast Drink VHC (Very High Calorie) - 560 calories per can. During my treatment I was required to take in at least 2,700 calories a day (at least 5 cans but I did 6 cans per day). My nutritionist that was part of my team ordered these for me and charged it to my insurance. I started out drinking these but eventually had to use my peg tube as I could not swallow. If you do not have a nutritionist as part of your team, talk to your doctors about seeing one. Getting enough calories and nutrition is VERY important to the healing and recovery process.

Over the next few days you should be receiving some valuable information from a lot of caring people in this forum.

Hi Tom.

Thanks for responding so quickly. He does NOT have a PEG tube. The doctor did talk about him getting one - eventually - but he is still able to eat by mouth - well - swallow liquids and soft foods like yogurt and pudding. He says he is Ensured to death, and so doesn't want any more of that.

I have been making soft foods for him that are high in calories (banana pudding and this crab/artichoke dip where I'm pureeing all the ingredients first), and he was able to get some won-ton soup and a bit of an egg roll in him yesterday. Do they sell the Carnation stuff at regular stores - or is it special order?

I'm also worried about second opinions and whether he is being treated at a CCC facility. His chemo happens at Long Island Jewish Medical Center in Manhasset, Long Island.

I am at somewhat of a disability here because his main caregiver is his wife, and sometimes she just is not forthcoming with information. When I ask questions she says, "The doctors have their reasons". That may be good enough for her but not for me or the rest of my family, and he sometimes is too shell-shocked to remember things from his appointments. It's so frustrating!

Hi Colleen,

My brother had a large tumor on his tongue that was diagnosed last year. He had aggressive chemo and radiation. Like your brother, the tumor shrank pretty quickly after about 2 weeks of chemo. The chemo and the radiation were very hard on him, but he is doing pretty well now.

My brother is married, but my mom ended up being his primary caregiver. She ended up getting REALLY mad at me because I asked her a lot of questions and brought up a lot of issues with her (about my brother's treatments). She told me that I was being "too cold and clinical".

It seems like you are having the same kind of feelings that I did - scared, confused and sort of mad at the caregiver and patient because they aren't getting enough information. You're right; it is frustrating. Unfortunately, there is no easy way to fix this. You will have to figure out some way to communicate with both of them. For me, the best thing to do was to email questions to my mom and not talk with my brother at all about his treatment (we talked about happier things!). Your best solution might be something else ... it is not an easy position to be in, but your main focus now should be making things easier for both of them.

I hope that this doesn't sound too preachy because I certainly don't mean it to be.

Jean

Thanks Jean.

I am frustrated and scared, not really angry. I mean sis-in-law means well, but I need details and she gives me few. Brother is the oldest of us five kids, I'm the youngest. Mom and Dad have passed, and the other three live in Georgia (we're in NY). So this time the family side of caretaking is all on me, and I have to give the other siblings answers.

You don't sound preachy at all.

I suspect at some point I may become the primary caregiver, because her reaction when we found out about the spread to the lungs was to be paralyzed into inaction and stunned silence. It may just be too hard on her to do it effectively. We'll see, time will tell and I will do what I have to do.

Thanks Jean, for the words of wisdom. It helps a lot to know you're not the only one to have been in the situation.

Colleen

The carnation is a special order and my INS like Tom's pays for it and UPS delivers it. It's hard for me to down 5 cans like the Dr wants, but I try. Good luck to your brother and I hope every thing goes well for him.

You can also get the VHC from your local Walgreens or CVS without a prescription even though you have to order it thru their pharmacy dept. I would save the VHC until its hard to swallow or nausea is a problem. You didn't mention, I don't recall, why he is getting thin?

I order my Carnation IB VHC from a web site called www.imed.com. They have variations in calories - 250, 375, or 560. The 560 calorie one costs about $27 per case of 24 cans plus around $8 shipping. So living in Ohio I get it for around $35 a case of 24. I can eat just about anything now, but I still order it and drink a can for lunch because of the great nutritional value. They deliver it right to my door.

As far as getting to know more about what is going on with your brother, are you able to go to his doctors appointments with him and his wife? Can you offer to drive them to the appointments? In my case I was seeing a doctor once a week during my chemo/radiation treatments. I am not sure if you are being made aware of it, but he is probably seeing a doctor quite often.

A good place to get a lot of valuable information from this forum is to go into the "Getting through it project" forum, click on the subject "Draft Copy", and then click on "GTI draft copy" link that is in the first posting. A document will open up. There is a table of contents at the beginning.

If the doctors are leaning towards giving him a peg tube, it is better to have it done before radiation treatment than during it. That is great that he is still eating solid foods.

Thanks everyone for the good information on the Carnation and where and how to order. I'm guessing we may not need it for a while - I had them both over for dinner last night and the man ate nearly an entire London Broil by himself! Whoo Hoo!!!! Along with mashed potatoes and some peas and corn!

This is a great thing because since his release from the hospital last week, he had only ginger ale and gatorade, and the weight seemed to just be melting off of him. Now I feel like I've whetted his appetite again.

Thanks for the advice about not doing the PEG tube during radiation. He may have radation, and he may not - docs will tell us what they want to do after chemo round 2 and new scans. I am not able to go to appointments with him because I have to work weekdays and he rarely has appointments on the weekends or in the evenings - but I do know that he's been back to the doctor several times since chemo round 1 ended.

I'm going to be on this board quite a bit - educating myself. Thanks everyone for the great support.

Colleen

Colleen,

If you get to the point to where you are considering the Peg, post again as there are many of us that didn't have a Peg and I for one wouldn't get one if I had to do it over again.