Christine,

The radiation doc will cover your radiation. And, the hemeotologist will come up with your chemo plan. I am guessing they are at the same hospital and that they are working together to come up with your treatment plan. That is the best way to work it.

Dan did not have surgery. His initial ENT wanted to cut the heck out of him, but fortunately our family doctor got us into a cancer center with a tumor board and they deemed the surgery unnecessary. Either way, he would have had to have chemo and radiation, so we were glad to save him one part of the discomfort.

I have a ADHD child well. He's creative and smart, but sometimes too creative to be spend time home alone while we are at the hospital. We've come home from days at the hosptila to some interesting surprises.

My daughter is not ADD, at least not diagnostically, but she is a typical 13 year old. Early today, I asked her to get her dad a glass of ice and a beverage, and she got as far as setting them on the counter and then someone came to the door and she left without getting my husband what he needed.

I admire my kids...and probably yours as well...they believe so well in recovery that they don't sweat the details.

I wished you lived closer, I'd help you if I could. But, since I don't you have my full fledged emotional support and a couple of ideas.

A couple of years ago, I had 3 foot surgeries and my husband traveled quite regularly. My kids, as well meaning as they are, didn't always come through in the implementation side...so, I stocked up on soup, liquid nutrients and beverages and bought a tiny refrigerator and microwave to keep in my bedroom after my first of three surgeries.

I had a lot of support for helping with my kids, but I was terrible at asking for help for me.

Another thing that might help you is a white board to track your meds and schedules...or even a notebook. And, just in case you end up with a boatload of prescriptions like my husband did...those huge RX holders that have a Morn, Aft, Eve and Night box per day have been really helpful. I have 2, one is for required medications and the other is for optional.

I also stocked up on a ton of bottled beverages so that it would be easier to keep track of the number of ounces my husband takes in dailly. Water has been good throughout.

In the beginning he was able to manage a lot of Gatorade. Now, his only other non-water option if the Peach-Mango flavored Fuze. If I were you, I'd stock up in preparation...especially on tons of bottled water. Staying hydrated is a big deal throughout treatment and can help ward off extra trips to the hospital.

Also, it took me over a week to get something that almost everyone uses at some point in their treatments...Carnation VHC (Very High Calorie). My Walgreen's kept saying they would get it for me, but then after a week, they said their distributor couldn't get it.

I found that Target can get it in overnight. You can also buy it on line, but it's nice when you can avoid the shipping...which is almost as much as the product. I wish I would have gotten that in earlier.

Your son sounds like a great kid. How nice of him to take a semester off of college to help you. In the grand scheme of life, this is going to be a tiny part of your life and his. But, there are parts that might be rather intense.

I have read that people have driven themselves and worked throughout treatment. That might be your experience. I hope so...but just in case, here's some thought...

If there is one thing that I wish I would have done is stock up on as much as possible when we weren't under any duress.

Also, stock up on Biotine products...if you go to this posting under General Board-"Help Test New Biotene Products" you'll get a whole bunch of free stuff that will be really helpful.

I'm sure you and your son will do well. If I can offer you or he any help, please feel free to call or e-mail me. My e-mail is on my profile...or write back here.

And, PLEASE...don't let any of this scare you. I'm just going through a laundry list of what I wish I would have done and stocked up on in advance of needing things in the moment.

I know you are going to do well! And, we'll include you and your family in our prayers.

Best,

Margaret:

Thanks for the advice about stocking up. I have 10 cases of water already stocked and am working on groceries. Ive been steadily trying to have things ready, but I know you can never prepare enough for this. Im waiting til I see all my new doctors on Wed. to stock up on things like carnation instant breakfast, ensure and things like that. Other people in my office who have gone thru the cancer fight have told me certain foods are encouraged while others you shouldnt have while being treated. What is Biotene?

My house has been completely overhauled. I know I wont be up to doing everything so gotta keep up w/ it. My yard work is down to a minimum. I didnt bother w/ all the flowers and lanscaping this year. I have a nice start on my wood pile for winter.

I dont know about your child who has ADHD, but it sure hasnt been easy. I have her appointments down to every other month for her doctor. I go next week and will push that off til October.

My daughter is one reason why I say I cant be sick. She needs my guidance and support. I have to always be positive for her. Positive reinforcement is what works more than any punishment ever could for an ADHD child. Does your son seem mentally much younger? My daughter always has acted like she was alot younger than others her age.

As far as working goes, Im going to try to work what I can. Im hoping I have the strength to make it to work a couple more weeks. My mouth hurts like heck, and I have trouble eating, even talking can be a hurdle. I know its going to get alot worse before it gets better. So far I have lost 15 pounds. Im sure glad that I have a few extra pounds to lose. For once being a little chubby is a good thing.

Christine,

You sound like you are in good shape and getting well prepared for treatments.

Ask your doctors about Carnation VHC (Very High Calorie). It's about 8 oz and 560 calories. It is hard to buy over the counter but can be ordered through various stores or channels. We started using it week 4, I wish I would have had it week 3. It is good for the calories and the protein...and, as taste buds tend to alter from radiation and chemo...another benefit is that it doesn't taste "metal-ly" or "mineral-ly" to my husband.

There are two things that I would recommend prior to treatment (as long as you can squeeze them in without delaying treatment). If they recommend Cisplatin for chemo, I would get a hearing test first.

Some people's hearing are impacted by Cisplatin, my husband was and we had to discontinue it. We knew the risk, and we felt comfortable proceeding once we knew that his hearing was very strong to start with. It appears that his loss is only in the high frequency range, so it's annoying but manageable.

Also, see a dentist and make sure your teeth are in good shape. It's risky to have dental work while you are under treatment...so a last minute check for cavities or anything else is not a bad idea.

Plus, you will want to up your fluoride treatments. Some people have trays made...our dentist told my husband to stop using toothpaste and gave him fluoride paste to use instead--his recommendation was 10 x a day but I can only get my husband to do it about 6. Radiation can be hard on your teeth long term and it's good to be proactive.

Our hospital had the hearing test capabilities on site and scheduled it immediately upon our request. We don't have a dentist at our hospital though...so, that we did separately...and, when we called and explained the situation they got my husband in the next day.

Biotene products will also help with oral care and dry mouth. Most mouthwashes have alcohol in them...and, you won't be able to use them during treatment, Biotene's products don't have alcohol in them. The free offer that I referenced from Brian Hill's earlier post is great, it allows you to try out the products and see which ones work for you. They are not prescription products and I don't know if my husband would have tried them all if we hadn't gotten the samples. There are some Biotine rinses that my husband finds soothing.

Most people take a hit to their salivary glands with the treatments. So, in addition to staying hydrated, there is a Biotene gel that help make things a little bit better. Dry mouth is one of the more lingering side effect post-treatment. At least it will be for my husband's base of tongue cancer treatment.

I recently got a fairly large capacity adn quiet humidifier...that's another thing that is very good to have on hand. My husband is now on a different chemo that is hard on his skin and he needs extra humidity for his mouth and his skin. I found it hard to find one in summer...everyone wanted to sell me a DE-humidifier.

You sound like an amazing mom. I know that positive reinforcement is better than punishments, but there are times where I struggle (thus my son's current grounding situation).

My son actually does well socially with kids his age or older, and he does really well in sports...it's just unattended time and school time that he struggles with making mature decisions. Boredom is a very bad thing for him. Yet, he's a really great kid,

If you are down to appointments every other month with your daughter, you should be in good shape. We had just started with a new therapist before Dan's dx and now we have put that off until Dan is out of treatment.

One of our biggest struggles is school and homework. How does your daughter do in school?

Even though Dan is tired and in bed often, he still is able to spend quality time with both of our kids. And, that helps. You'll be able to do that too. My son misses his "active" dad...as he doesn't think I'm all that good at sports. But, he still appreciates spending time with him.

Our main struggle is the long chemo days. We try to make sure my son has plans or has things to do...we brought him one time to the hospital and that was hard on my son. And, we're not entirely comfortable leaving him alone. Fortunately, the treatment time is generally 7 weeks. Then, there is the recovery time, but you don't have to go to the hospital every day once you get past the 7 weeks.

Hold on to your pounds as much as you can. They say that treatments and recovery go much easier if you have a little extra weight to spare. My husband started at about 20 over his ideal weight and mid way through he is down 10.

Some sites will put in a peg tube prior to treatments, our site will not unless medically necessary. So, keep eating and keep hydrating. What they told us is push "effortless calories" prior to treatment...if you are thirsty have a milk shake instead of water or if your are hungry choose high fat/high calorie items vs. low.

I realize you are in a lot of pain. Some items that worked when Dan was in pain were homemade mac-n-cheese and noodles with alfredo sauce. And, I throw in a ton of butter when I scramble eggs for him. Are you taking anything for the pain?

What type of work do you do? My husband is in engineering and travels a lot. He got one last trip in the 2nd weekend of treatments. But, since then, he hasn't been feeling too well and traveling isn't really an option anymore. He is still able to keep up with e-mails on his laptop and phone calls. Although, like you, his mouth hurts and talking is not comfortable.

I'm so glad your son is of driving age and able to help you.

I hope you will still stay in touch, I will be thinking about you...as I am concerned that you don't have neighbors or family near by.

Best,

Margaret:

Again, THANK YOU!!!!
I really appreciate all your detailed info. Even though everybody responds differently to radiation and chemo treatments, what you have told me is things I needed to know.

I chuckled when you told me to hold onto my pounds. I was about 40 pounds overweight, now Im 25 so still have some flexibility with weight loss. Losing more then 25 pounds will make me look anorexic. About a month ago when I started losing weight and realized what Im going to have to go thru, I started to eat all my favorite foods. I was thinking I better get it now while I can enjoy it and keep my weigh up. I drink alot of water and I love the new McDonalds sweet tea. Im going to get a few today, they come in nice styrofoam cups that store nicely for a couple days in the fridge. Unfortunately McDonalds as 1/2 hr drive for me, so I buy a few.

I did sign up for the biotene. I had been using watered down listerine which still burns like heck. Im also going to start looking for the Carnation stuff today. I have been taking vitamins to try to build myself up too.

I work for a very large phone company and my job is to talk on the phone to customers all day. They are very flexible as long as everything is documented. Everything needs to be overly documented. Thats because so many people there play around and dont go to work claiming stress prevents them from doing their job. I am very fotunate with having a good job and good insurance. I will have only about $100 co-pays for this from start to finish unless I need surgery then it will be a little more. For medications I pay 5% of generics and 10% of cost for the brand names.

My daughter also needs to be watched, cuz look out when she is bored. Since its summer, that is always a challenge for me. She has done some really awful things while being bored. One of the more mild things is she likes to cut clothing and turn it into new and improved styles. Compared to some of her other feats that is nothing. One day we can sit back and laugh at the things our kids have done. She is alone a few hours a day when my son and I am at work. I call her every couple hours and text her alot so she doesnt feel alone. She has alot of activy books, movies, pets and things to keep her busy. Homework is horrible, she always will say I dont have any. I get the teachers to email me her assignments, she is very smart but lazy with the homework. She has an IEP at school. For her its if she is feeling stress she can go see the guidence counselor. This has worked so far the past couple years. Only 2 more years of high school to get thru.

As far as my son goes. Yes, he drives, which is a good thing most of the time. He is a good driver but driving w/ a teenager can be scary too. Merging onto highways is the hardest thing for him. Being back in the country he doesnt drive on highways hardly ever. One thing that has helped my son w/ maturity is being a volunteer firefighter. He has been there about 1 1/2 yrs. He does alot of community service w/ accident clean up, pumping out flooded basements, and of course putting out fires. He feels like its his alternate family. I allowed him to join since he didnt have a father and thought the bonding would be good for him. I have been divorced since he was 3 and his father stopped seeing him when he was 5. When he asked me to join the fire company, I was hesitant but then thought it will keep him on the straight and narrow cuz of the close relationship with area police. My son was going to go to college for mechanical/electrical engineering. What type of engineering does your husband do?

Does your husband have radiation 5 times a week and chemo once a week? Seems like thats what alot of people have. How many weeks more will your husband need treatments? I was told mine will be about 6 weeks, Im hoping that knocks it out of me.

Christine,

Here's the info I repost for people re the VHC:

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in.

You can also order it online but it usually costs more and takes much longer to get.

No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you.

David:
Thanks for the info. Eckerd didnt have it, which Im not surprised because its a very small store. I did look at the website. I will try to get it by prescription.

Christine

Hi Christine,

I hope you have been reading all of the success stories that people have been sharing recently. I think it's good to be prepared, although I'm hoping the treatments go extremely well for you like they have for many others.

Funny you mentioned your daughter cutting up stuff..scissors and my son...not a good combo. And, school...homework...I am in the same situation with my son as you are with your daughter...arrgghhh!!! I am grateful we will be through treatments before homework season kicks in.

Wow, you live 30 minutes away from McDonalds, you must be pretty far out of the hustle and bustle. :-)

I got a kick out of you stocking up on sweet tea in foam cups. I ended up stocking up on foam cups at a warehouse store. My husband will only drink out of a foam cup, with a straw and a lid. He likes how the foam insulates the ice and keeps the beverage cold...or soup warm. It's an odd thing...but, it has a direct correlation to his intake daily...so I figure whatever works...

Sounds like you hold a tough job for someone with a sore mouth. I hope you have a kind and understanding employer.

I'm totally impressed that your son is a firefighter at his young age. He sounds like a great kid. How sad that his dad doesn't stay in touch with him...but, it sounds like you have done good for both of your kids.

This treatment, even if it knocks you down, it's a short timeframe in the grand scheme of life. I have to remind my husband and myself that daily, because it is true.

Stay in touch and keep indulging yourself when you can. My husband takes prescription pain pills an hour before each meal and that helps. He is down to the Carnation VHC (diluted with a little milk and served in a foam cup). And he also does well with scrambled eggs and noodles. It is so unfair, the one time of life when they encourage you to eat everything and anything...healthy or not...food is unappealing.

We have 15 more treatments left, I think he is going to make it through without a peg tube. He is only down 10 lbs from his starting treatment weight but he does have to force himself to eat and drink.

Also, my husband is in electrical engineering. He really enjoys what he does. My husband got most of his training in the air force. Now, he is works in the printing field. If your son would ever like to talk to my husband about engineering, just let me know.

My husband was scheduled for 7 weeks of treatments (5 days per week) and 3 courses of Cisplatin. Sometimes they do Cisplatin in heavier doses less frequently and sometimes they do it weekly. After the first dose, his hearing was impacted so he was switched to Erbitux. My understanding is that the Erbitux was an option because of the location of his tumor on his tongue. If it had been in his oral cavity they would have switched to Carboplatin which I think is like Cisplatin without the hearing concerns. The hearing loss is minimal, but they were worried that if the Cisplatin was continued the loss would have been much more severe.

Cispatin is often the chemo of choice in this regime. We're glad my husband got at least one dose in before they switched him.

Let me know how your doctor appointments go on Wednesday, I'll be thinking about you.

Margaret:
I have a few questions for you about your husbands treatments. The peg tube, is that the feeding tube? It sounds like he is doing really good w/ nutrition since he didnt lose alot of wieght. What do you think is the hardest part for him w/ eating, nausea or sore mouth? You have passed the 1/2 way point and do you find that he feels very fatigued? Does he have days that arent too difficult for him and he feels somewhat normal?

I met w/ my radiologist today and tomorrow is the chemo doctor. Friday I will get an MRI. I have to get a feeding tube put in on the 30th. I will have 7 weeks of radiation, I will find out tomorrow what the chemo schedule is and what kind. From what the doctor told me I will not need surgery that mine is curable. He said if it still is there after the 7 weeks then I will then need a few more weeks but wont need surgery. Which to me is great news. It turned out to be a 3 hour doctor appointment, which was very long.

I hope everything is going fine with your family.

Christine

Hi Christine,

My husband did not get a feeding tube. He had an extra 20 to spare and our doctor's didn't think it was necessary for him.

While many people consider the PEG tube a Godsend, my husband, personally did not want one nor are we at a site where they would put one in unless medically necessary. I can see the argument for both sides.

He plows through discomfort to eat soft foods. Biggest issues is where he is being radiated (base of tongue) and the sores in his mouth. Food tastes/textures are also very altered, so his menu is very liminted.

Dan is also doing 7 weeks of chemo/radiation...and, we are in week 5. It's amazing, we are on the home stretch...and, soon you will be too.

I like the long, unrushed doctor's appointments...because I don't like to be rushed...even if it means that the people before us weren't rushed and we had to wait a long time. :-)

Dan is being told CURABLE too...that's a great word!!!!!

There

are days, like today, while Dan has thrush that I wish he got the tube...as he hasn't eaten well in 3 days. But, we are using the VHC and Boost to supplement until it goes away.

Did they elude to they type of chemo? I'm guessing Cisplatin.

Dan's chemo, Erbitux, causes him severe fever, chills and sweats. After many weeks of extra blood work, they have determined that this is the way his body is releasing the cancer toxins. It's very draining for him and he often has to change clothes 3-5 times a day and the sheets 1 time per day because it gets so drenched. That fevers, (which is rare) combined with the radiation, has him very fatigued. Although, he makes it through some days stronger than others. During the first two weeks the side effects weren't so bad...they were starting, but we were able to enjoy walks together. Now, he doesn't move much beyond going to the hospital daily.

Hope that helped. Are you comfortable with the tube? WHen do you think you will start.

Good news on the "no" surgery.

Glad to hear from you...hope all is well with your family too.

Let me know how your chemo doc appt goes?

Are you being treated on an IMRT?

Margaret

Margaret:
Your info is always helpful. I truly appreciate it.

You are right, you are on the home stretch. Only two weeks left of this long journey, then its all downhill from there.

Today was the chemo doctor, which wasnt a very ggod appointment for me. I was told 7 weeks of radiation, but the chemo days dont match, so Im thinking its more like 9 weeks. I will get chemo only 3 times, if all goes well. So far its set up on the 1st, 22nd and 43rd radiation days. This was a big dissappointment for me and the final blow was my hair. I will lose some thru radiation around my ear but the rest will fall out the chemo about 2 weeks after the treatment. Nothing like broadcasting that Im a cancer patient like being a bald woman. It sounds so stupid too and I know it, but my concerns were not visably showing that I was ill was very important to me.

I will be getting what you said, Cisplatin. I do know to watch carefully for the side effects with hearing loss. That would be really bad for me cuz of my job talking on the phone all day. I have been doing other work for the past 2 weeks since my mouth is so sore that I cant talk 10 hours a day anymore.

Today was just a really bad day for me. This whole thing has started sinking in. I have said since day one I wont let this beat me and I cant be sick, I have children to raise. The further I go and more doctors I see, have given me serious doubts about how I am going to get thru this. I cried in front of my children for the first time today. Im a very strong person and I never cry, so this was a shock for them.

Tomorrow is my MRI, next week is the dentist, feeding tube doctor, and the chemo doctor again. Its too many appointments for me. I didnt want a feeding tube, but because of the cancer being my cheek and top of my mouth they talked me into doing it cuz they said it wont be long before I cant eat anymore. My food today consisted of pudding and soft serve ice cream. I drew the line when they tried to get me to put in a port. I have good veins that are easy to get to, the feeding tube is bad enough.

I honestly dont know how you have gotten thru this. I am already so overwhelmed before I have even started the treatments.

Christine