Recovery time

I was thinking about how important nutrition and calories are during recovery. This is always stressed by cancer teams. Your body is working overtime to repair your body so keep the nutrition and calories up and hydration also. So I have a small list I have compiled of high-calorie recipes and ideas I will post and it is attempted to be done with a minimal amount of intake. Pack as much in per ounce as you can. I hope this also helps your husbands recovery and your caretaker job and makes it all a little easier.

Windmill Welcome

To the forum glad to have you. I too ended up having a small nodule on my lung and liver but they are just being watched for now and I believe unless they start growing nothing will be done. My sister had one for years they were watching and it finally started increasing in size and I believe they used a cyberknife on it and it is gone. I would imagine your case is similar with a watch and see approach.

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

Wishing You the Best

Take care, God Bless-Russ

Well, tmarm, I can't exactly remember. I had wanted to keep a small or basic written record of things but soon felt too crappy to keep it going. I can say that I was not aware of Mucinex and I only used the salt and baking soda mouth rinse as often as I found necessary and probably spit out a bunch in between to keep it cleared. I just know it eventually started easing up. I checked the internet though and found plenty of info on it and here is a little excerpt to help give you an idea of when it will start tapering off.

Mucositis caused by radiation therapy usually lasts 6 to 8 weeks, depending on how long the treatment was. In patients receiving high-dose chemotherapy or chemoradiation for stem cell transplant: Mucositis usually begins 7 to 10 days after treatment begins, and lasts for about 2 weeks after treatment ends.Apr 26, 2019

How long does mucus last after radiation?

Changes in your saliva may get better within about 8 weeks of radiotherapy ending. But sometimes it continues for several months or longer. If the mucus continues, tell your cancer specialist or nurse. They may be able to prescribe medicines to reduce the amount you make.

How do you get rid of thick saliva after radiation?

Use a humidifier to help loosen thick saliva and secretions. Rinse your mouth often during the day with a mixture of 1 liter (about 4.5 cups) of water, 1 teaspoon of salt, and 1 teaspoon of baking soda. You can sip, rinse, or gargle with the mixture.Jun 7, 2022

Also in my search, I found an old posting started in 2010 on this site and it has some interesting comments in it and of course, it is coming from people who have experienced the treatment.

Also here is a link to the National Cancer Institute page for "Oral Complications of Chemotherapy and Head/Neck Radiation" and it is a boatload of information covering this subject and I think you can find what you need here covering any aspect of this from the start of treatment to post-care and the years ahead like dental maintenance, etc. from a good source.

Lastly I found another forum which seemed to have some really good conversations on it from 2017, a site called "Cancer Council Online Community" and this one person on there had a good accounting of their treatment and effects covering a 12 week period. A bit long but well worth the read and I think it relates to a lot of our treatment regimens. This is exactly what I wanted to do but failed. Read below, very well expressed and explained.

The Posting

Hullo Again 

I had 7 weeks of radiation, and three infusions of high-dose cisplatin. (The chemo requiring an overnight hospital stay - except for the last dose, which they fractionated because they were worried about permanent hearing damage).

On that, yes, I'm still getting tinnitis. It's intermittent and was much worse directly after the chemo - but it's still there .. I don't know if it will go away fully or not, but I hope so. (If not, small price to pay to fight the cancer).

I never lost my voice, but when the mucositis was at it's worst, talking was sometimes difficult - just because of the thick mucous accumulating in my mouth and the need to spit .. so I would sometimes sound like a cartoon supervillian or someone with some kind of speech impediment as I talk/gargled through a thick layer of yuck.

(And yeah, I used flat mineral water and every other thing the internet suggests, including a concoction of magic mouthwash - which has viscous lidocaine (for numbing), sucralfate (for a barrier), antihistamine (to reduce phlegm) and other bits and bobs all mixed up by a compound chemist. You could google it for a try, as it was OK ... from my research the best mucositis treatments are new patent medicines available in the USA, and I think maybe just now starting to distribute into Australia .. google medicines like "Gelclair", which advertise symptomatic (and prophylactic) relief of mucositis. I couldnt get my hands on any in time to help me.

I stopped eating around week 4-5 of treatment, mostly because of the rancid taste dysgeusia. Everything in my mouth tasted contaminated. (A side effect of the chemo).

It's gone now, and I am able to take everything I need by mouth - but no solids .. just hydration and the formula that I'd otherwise put into the PEG I can drink by mouth now (so I'll look at getting the PEG removed in the next couple of weeks).

Yes, I still have a sometime sore throat. Basically, the radiation damage you suffer over the course of treatment is .. well it's just a horrible insult to your body. It's worse than a normal wound or injury, because the treatment actively attacks the stem cells (which normaly help you heal), so the wounds can be severe and slow to heal. But my pain is very manageable now .. just 2 panadol today. It was at it's worst the first 2 weeks after treatment.

When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst). It's great to no longer have to go into hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty-much bed-rest and just ticking away time, before you start to heal and feel better.

For me, it went something like this, over the span of treatment:

Week 1: first round chemo & 5 rads (felt fine, some nausea from chemo)

Week 2: (5 rads) minor tinnitis onset from chemo, some vomitting, radition fine

Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste

Week 4: (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomitting from chemo

Week 5: (5 rads) noticable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant

Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing

Week 7: (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine

Week 8: (first week post treatment) awful awful suffering, vomitting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days

Week 9: (second week post treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturising cream). Pain lessening, but mucositis still awful, nigh cramps in legs

Week 10: (third week post): exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc

Week 11: (fourth week post): turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was. Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant

Week 12: (fifth post): mucositis backing off more, can now take most nutrition and hydration via mouth and thinking of getting rid of PEG. Pain is manageable, dont require anything more than panadol. Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels

SO ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully it gives a little perspective. Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily .. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself. Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.

Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick" 

Here is the link to the forum where you can see all the discussions on the folks discussing this exact subject.

I am still always surprised with the amount of helpful reliable information out there once you start digging a little. Also if you can just stick a first name somewhere it would be nice I think as compared to tmarm, I could refer to you with a name, your choice though as I know a lot of people are more careful nowadays.

I hope some of this helps, please especially check out the persons 12 week account of their H&N cancer experience.

Wishing You the Best

Prayer is Powerful

Take care, God Bless-Russ

Thank you, Tina. I understand where you are at, it is a load to take care of someone and work full time. You will persevere though. I am retired and have some time to devote to helping people in some way and this is one of them. I have gotten used to doing my best to post reliable and valid information and not include anything but facts that are relevant. I am sure with a good caretaker like you Mark will get through with flying colors.

Wishing You the Best

Take care, God Bless-Russ