Still loosing weight after peg removal

Windmill

G'day im new here and have been eating by mouth for about a month. The problem I'm still loosing weight, I have the peg still but am very reluctant to use it. I'm going down to the hospital to have a cat scan and the peg removed this week as they found a spot on my lung. I've had my post treatment scan and there was a small amount of activity where the primary tumour was. The doc said it was probably inflammation so I had another pet scan 5 weeks later thats when they found the spot.

I've lost about 4 and a half kilos. I'm eating ok  but still have problems getting some foods down. Is this normal to loose weight for a while until your body gets used to normal food again.

Thanks

motorcycleguy

Wind,

I got a PEG tube, but never used it. I couldn't wait to get rid of it.

But, I went onto a Construction job, before I finished chemo (which was too soon, I realized afterwards).

Anyway, all I could eat for a while were eggs/over easy. I continued to lose a couple pounds a week, for about 3 months, before I turned it around.

Keep trying to eat different foods, and get the calories you need. You might want to supplement in some high cal, protein drinks - to help get those cals.

I suspect you'll get it turned around in a few weeks - just keep trying new things (soup, chili, cottage cheese?). The foods that work are out there!

(Certainly, though - if you CAN'T get the weight loss stopped in a short period - you should be talking to your Oncologist.)

MG

wbcgaruss

Windmill Welcome

To the forum glad to have you. Not that you wanted to be here or any of us for that matter but this is the best place to be as we help each other with the H&N situation we are all in. I too ended 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 diet or food type 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 although 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

 

 

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! 

 

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

 

 

 

 

 

Windmill

wbcgaruss said:

Windmill Welcome

To the forum glad to have you. Not that you wanted to be here or any of us for that matter but this is the best place to be as we help each other with the H&N situation we are all in. I too ended 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 diet or food type 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 although 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

 

 

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! 

 

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

 

 

 

 

 

Thank you very much for your

Thank you very much for your replys. We live in the bush about 3 hours drive from the hospital where I was treated and tomorrow I'll be driving down to have my ct scan and peg removed. It's very comforting that I found this forum as I really don't have anyone other then my wife to talk to about this and I don't like to burden her with all this. I had prostate cancer 3 years ago and that was a very lonely experience but this diagnosis has been more difficult to get through with pain, side effects etc.

On a brighter note my oncologist emailed me yesterday to tell me that he had discussed my recent pet scan at a specialist head and neck meeting and that the Pet Physician is not convinced that we are dealing with secondary cancer on the lung. He will ring me next wednesday with the result so fingers crossed.

motorcycleguy

Wind,

I remember how happy I was to get that PEG tube an blood port taken out!

I hope your CT Scan is clear, and the PET Scan is mistaken about secondary Cancer. (I've had small scares on PET Scans, but so far they've been false warnings).

Keep us informed about your weight challenges, and let us know (soon) that you've turned that around.

I wish you the best possible outcome, with all of your tests!

MG

LitlCJdoll

Hello Wind,

Hello Wind,

There are so many problems, and sequelae associated with this particular blasted cancer, which cause us to lose weight.

I got on my digital scales this morning and found I'm down to 69.4 pounds. 69..... 

Drats !!! 

See, I just got out of the hospital recently,  and I have Bilateral bacteria pneumonia.  Its in both lungs. What cultured out, from the Broncos copy in May, was E. Coli.

How did that nasty Gram Negative rod bacterium get into my lungs??   Well, I Aspirate. Everything.... And Silently. I'm not even aware its happening. To help with this problem, 2 years ago Cancer Services gave me an adjustable hospital bed for my bedroom so I can reliable sleep at 30* angle.

However, it happened again anyway. This is Pneumonia #6 for me and its destroying my lungs.  I now have irreversible lung disease ( Bronchiectasis , which is a COPD)

Wind, I am 100% dependent on my Mic Key G tube and I feed continuously. I've not had actual food in 4 years. I am allowed liquids " for comfort measures" but I know everyone is now asking " Is it worth it Crystal?? Is it worth damaging your lungs to the point you have trouble breathing??"

I can never swallow food. I have no ability to. My primary tumor was a huge monster which altered,/ paralyzed my swallow apparatus.  

But there Are good Supplement drinks, shakes and foods out there!! You can benefit from those because you CAN swallow well enough !!

I can put them through my G tube if thin enough. Plus, over the past few days I have increased my feeding pump rate, so that I get more Protein and calories per hour::

 

And I've still lost weight ?? 69 pounds... In the hospital, they Diagnosed me again with Severe Protein Calorie Malnutrition. My BMI is a 14.6... 

Below is an email from my pulmonary / critical care doc,  telling me its gonna rake Months to recover, if indeed I can from double pneumonia. Some people do not recover from it, and many die from it too.

Right now, I am getting ready to set up my Sterile field, to infuse the antibiotics through my double lumen PICC Line. I have a few more days. I was inpatient 6 days and my white count kept dropping so they wanted to get me outta there, to home. Thus the PICC line.

Wind, this is just my little opinion for what its worth---- Please do not let go of your Tube just yet. Make very sure you can eat and get in enough, first.

Example:: My Beau, ...my sweet love Randal died May 18th.  Years ago he went through something similar between his 2 cancers. They took out his G tube, not knowing he already had a second cancer on board ( Stage IV HNSCC).  Sure enough, he had to get another tube ( another Stoma, of course)

I'm just saying be careful ...Talk with a Nutritionist, your Oncology Dietician, a  Speech Language Pathologist to make sure your swallow is SAFE.  

My double pneumonia resulting in Breathing problems is the source of my weight loss right now. All because of aspirating. I never had pneumonia before this cancer. Never.  This is yet another consequence of late stage HNSqCC.

Dr. Meier responding to me, below today::

RE:bronchiectasis exacerbation/ bilateral pneumonia

You've certainly had a lot on your plate medically for a long time now. And patients with multiple medical problems do tend to have a bit of a functional decline with fatigue and shortness of breath with exertion for several weeks to a couple months recovering from a pneumonia resulting from deconditioning (it's hard to keep up any degree of exercise capacity when a pneumonia wipes you out!). Have your cough/fever improved since starting ceftriaxone and getting airway clearance in the hospital? If so then it may be worth discussing with primary care physician to see if there are other factors which would lead to excessive fatigue.

 

 

Reply

 

 

T

Windmill

I am truly sorry to hear

I am truly sorry to hear about the issuses and problems you have faced with this cancer. We all have to keep going, one day at a time. Keep fighting.

I had my peg removed yesterday, that didn't tickle but at least it's out. All I have to do now is wait for my Oncologist to call me with the results of the ct scan.

LitlCJdoll

Windmill said:

I am truly sorry to hear

I am truly sorry to hear about the issuses and problems you have faced with this cancer. We all have to keep going, one day at a time. Keep fighting.

I had my peg removed yesterday, that didn't tickle but at least it's out. All I have to do now is wait for my Oncologist to call me with the results of the ct scan.

Oh my,  well my strong hope

Oh my,  well my strong hope is you can Eat enough now to get all the nutrition you need !  Perhaps keep in touch with a Nutritionist too, if you find you need extra help.

Crossing my fingers all the scans and imaging come back clear..  The very best wishes for good outcome so you can breathe a sigh of relief and go forward. 

 

Crystal

Windmill

Well it looks like I'm

Well it looks like I'm holding weight, yaaaa. My oncologist called me yesterday with the result from the cat scan and stated that the spot that the pet picked up has gone, but there is another smaller spot a couple of inches under where the other one was. So now I have to wait 6 weeks and have another pet and ct scan. I just can't seem to get off this bloody wagon. 

SuzJ

Food

Banana, Boost / Ensure, Ice crream, carnation instant breakfast, blend! its a LOT of calories.

I didn't lose till after, Chemo revs your system so you can consume 3500 cals and not keep up

AnotherSurvivor

I lived on homemade eggdrop

I lived on homemade eggdrop soup for treatment and post.  I never got a tube, lost +55 lbs.  It took a couple  of months to rebuild to real food.  I would sit with the food in front of me, willing myself to eat.  It did come back, pretty much like my oncs told me.  At 5 years post I am fighting to keep weight off.  During recovery I only allowed myself to regain 10 pounds, today I now 5-6 pounds beyond that.  I was overweight at start of treatment, was glad to lose, was smug for 4 years of post because weight just didn't accumulate.  Them days is over, now I'm back to diet and exercise, and losing the battle an oz and a day at a time.