ROLL CALL 2022 - First Posting January 1, 2022

Hey Matt, I have not checked in some time. I see the thread is not very active these days either. Anyhow, I appreciate the work you do for all. I am still here almost 13 years out. Been mostly good but the last few been a severe challenge. I am down in SW Oregon not far from you. Love it here. I have issues that are not common and not much help available but I press on. I have kids and grand kids I wanna see grow up.

Take care and keep up the good work

Thanks for the Reply Matt! Glad your still fighting the fight.

My daughter and family live near Salem and son just above Portland. I hope to be up there even more spending time with grand kids. Hope all is well.

Take Care

Mark

Hey jackflash22. Glad you are "still here". Congratulations on being a member of our select society of cancer survivors. Sounds like you are one tough individual. Hang in there and keep on a keepin on. And, BTW, will power is perhaps the strongest of all. Take Care

Whoops- i see my email above- typo- tdstevens49@gmail.com

Hi to Duggie88 & Mike metz. it seems you are using a feeding tube?/ My brother has rejected this avenue because he thinks we will find dental help. His surgeons and oncologists just tell him "no teeth implants, no gum ridge for dentures" UGH! surely in USA there is SOME SPECIALIST who is finding a certain degree of success(?) so a person can enjoy chewing again??

I didn't notice where you are. If you are near Tucson, AZ, the Dentist you need to see is Dr Kevin Haley. His practice is LA CAÑADA HILLS DENTAL, on North LA Canada, Tucson. .any years working at VA Hospital with HNC patients.

Silverbelle, welcome to the CSN H&N forum. I am sorry your brother is dealing with this dental situation. Your brother I assume had an ENT and a cancer team with him during treatment monitoring him. You should be able to contact them and they should be very aware of providers in your area that have experience with H&N patients and dealing with tooth loss that so often comes with the territory. The dental people you would see would want to see his radiation records and work closely with his radiation oncologist as per where the fields of radiation were applied and the strength of the radiation around the lower jaw and upper palate area before they would recommend anything and give you an evaluation. You say he has some back pegs and a few front teeth. I know some folks on here have had tooth implants where they implant an anchor into the bone and the artificial tooth goes on top of it. These are expensive but worth it. Your brother may not get all the teeth he needs to be implanted as there are various approaches to follow-up dental care and replacement such as dentures, partial plates, and using dental implants as anchor points for partial plates, etc. But you are first going to need to find a provider to take his case and get a full evaluation so they can decide what to do and what they can or cannot do. See below there may or may not be problems doing certain kinds of dental repair hence he needs an evaluation before starting anything.

Can you get dental implants after head and neck radiation?

If radiation was applied to the lower areas of your body, you could be a good candidate for dental implants. However, if radiation was applied to your neck or head, you may not be eligible for dental implants since radiation can negatively impact your jaw. Mar 16, 2020

All this is not a fast process but you have to start somewhere and today you did.

As I earlier recommended to you about seeking the advice of your brother's care team if they do not have a good recommendation for you seek out local dentists and orthodontists and call them if necessary to find ones that specialize in this kind of care that will work closely with his radiation oncologist.

As others have recommended you can also seek out major hospitals in your area or do you have a major teaching hospital in your area?

Here is a link to a dental office with some info about dental implants they are in the Dallas-Fort Worth area--

In the meantime, your brother needs to get nutrition in to stay healthy and at a healthy weight. I know he wants to eat of course but in the meantime, he may just be limited to softer foods like noodles, fine ground meat, mashed potatoes, and mashed anything with a lot of butter or gravy to help it go down and give flavor. Also, have him drink a Boost VHC once or twice a day to get his weight up to a desirable level.

Also, you may get more responses on your inquiry if you make a new posting which is not hard to do. Instructions below--

To post a new discussion topic on a discussion board:

• Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page.
• Mouse over ‘Discussion boards at the top of the page
• Locate the discussion board of your choice.
• Click the Blue ‘Add topic’ bar on the right side of the discussion board page.
• On the ‘Create Forum topic’ page, enter a title into the ‘Subject’ field and your message into the ‘Body’ field.
• Select save draft as you type to save your posting.
• When you are finished and satisfied with the wording click Post Topic
• Also, keep in mind that once posted you will have a week to edit your posting.

I am also going to add here a list of weight gain recipes and suggestions from past postings. I hope this info helps in some way. Also, prayer helps in any situation for guidance and comfort. Recipes below--

Wishing You the Best

Take care, God Bless-Russ

Silverbelle3789 Welcome

The 2 times I had substantial treatment for cancer I had a feeding tube and both times when it was finished it took a while to gain the weight back. I think now I am pushing to be a bit overweight but I found through my experience it is good to have a little reserve. To gain weight, for now, don't worry about any certain I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size. This boost is 530 calories per 8 ounces serving and you can drink more than one a day till your weight picks up. This is a quick easy drink to pack in 530 calories. Usually, the Boost VHC is mostly available online unless you can find it locally mostly regular boost is in the stores. Here is a link showing the product made by Nestle https://www.nestlenutritionstore.com/boost-very-high-calorie.html I bought it by the case on eBay but you can buy it online in many places like Walmart online etc.

Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.

Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--

Deb,

So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:

1 box (3.4oz) of instant pudding

3/4 cup half & half cream

1/2 cup of water

1 cup of carnation evaporated milk (use canned not powdered etc.)

Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!

Karen

These Recipes and Tips Are From Debbiel0 on CSN H&N Section

And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it--

• Coffee cream ( 18%) 1 cup 480 calories
• Coconut milk 1/3 cup 150 calories
• Greek style yogurt 1 cup 270 cal
• 2 tbsp Ground Flax seed 100 cal
• 3 tbsp Hemp Hearts 170 cal
• 1 tsp nut butter 100 cal
• 1 tsp honey 100 cal
• banana 80 cal.

I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.

Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)

Use honey as much as you can in tea or coffee, or just in warm water.

I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.

Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.

I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!

Split pea soup and baked beans with honey are great for calories..

The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)

Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.

I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.

Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!

Also Here Are A Few More Postings For Weight Gain From The Forum

Flyinhigh says:

High calorie

I use a powdered mix from GNC called 1340. If you followed their mixing instructions and used 4 large scoops with water and you supposedly get 1340 calories. I mix it half or third strength with 12 oz. of milk and figure I get 500-600 calories, plus a lot of protein. You can try this and if you don't like it or can't tolerate it GNC will take it back and refund your money. It comes in vanilla, chocolate or strawberry(my favorite).

Grandmax4 says:

calorie

I used a drink called Scandishake, bought it through Amazon. It's really good, can't remember the calorie and protein, I made it with crushed ice and milk in a blender, delicious

Drivingdaisy says:

Drinks

Only drank Orgain, organic and small amount of natural sugar. Decided no more chemicals in My body. I just poured it in My feeding tube. I still drink it but the plant based. Became lactose intolerant. Good stuff. I'm more of a naturalists but to each their own. Going on 4 yrs NED, so did something right.

Suzj says:

if you want to mix it up..

If you get the urge to mix it up, go with a high Protein Boost, mixed with a carnation instant breakfast, and a few scoops of Ice Cream - that'll up your calories

In Closing:

I too and most folks on here had trouble swallowing and getting some foods down but it will come just be patient but for now eat what goes down easiest with a high calorie count. You may have to add liquid as you eat whatever you prefer. Try donuts and coffee. Eat in small bites and be patient. With my 2 cancers and 2 radiations to this day, I am thankful I can still eat but it is just a slower process. but in your case, it will probably come back completely. get with your speech therapist and do your swallowing exercises. I assume you have had contact with a speech therapist on this journey because most of us have it is standard procedure in this Head & Neck cancer game. if not contact your doc and get one assigned to you.

Lastly I highly recommend that you Do Not have your PEG removed until you can have a stable weight or have some slight gain in weight going on but it is your choice. I know after my first cancer they would not remove my PEG tube until I could maintain a stable weight for 2 weeks.

Be patient and Eat, Eat, Eat.

I hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ

Don, so glad to see you doing so well. You are doing exceptionally well and I am glad for you and certainly hope your good health continues. I think you came through treatment really well with minimal effects, congrats. Congrats also for your longevity out of treatment, very good.

My treatment started in January of 2013 so we are pretty close on treatment dates. At the time I was a lurker reader only but I got so much knowledge and inspiration from folks like you, Matt, Hondo, Skiffen, long-term survivor, and so many more, it was a lifesaver. I finally joined after my second cancer in 2018.

Yes, teeth issues are a problem I am at the point where I maintain and do my best to stay stable with the condition of my teeth and keep what I have. I see the dentist every 6 months.

I have gone through the HBOT for a previous tooth extraction.

Sorry, you missed out on the cave trip but using your good judgment and playing it safe is probably the better option.

Wishing you good health and God's Blessings moving forward Don.

Take Care, God Bless-Russ