Previous Thread
Next Thread
Print Thread
#197287 10-04-2018 06:24 AM
Joined: Sep 2018
Posts: 9
Jacs Offline OP
Member
OP Offline
Member

Joined: Sep 2018
Posts: 9
Hi, my brother is 4 weeks post op for a 70% glosectomy. He has had 1 setback due to a mouth infection but got his tracheostomy out 3 days ago. He is really struggling with the swelling and drooling. His lower face, neck and lips are still so swollen and he constantly drools. A lot. It is getting him down. His medical team are great but was wondering if anybody had similar experiences with slow healing and drooling and any helpful hints or tips to help with the drooling. He knows it’s one day at a time but we can’t seem to get a gauge on when it might all start to settle. Many thanks in advance. Jacs


Jacs
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF, Jacs! Im sorry I havent already welcomed you when you first posted, I was tied up with computer issues.

Your brother has been thru a very intricate major operation that will take many weeks/months to recover from. Will your brother have any other treatments coming up such as radiation? Usually patients who have had these types of operations will have further treatments of rads (with/without chemo) beginning 6-8 weeks after the surgery. There are many patients do not need further treatment too.

There are sooooo many variables that its almost impossible to make even a general comparison. You will see the "everybodys different" mentioned frequently around here. When comparing patients its not at all a simple as it seems, its more like comparing apples to oranges. Every single person is different even if you take 10 patients who on paper appear identical they're still very different and will have their own unique reactions to medicines, procedures, etc. Think of those 10 patients who are the same age, sex, height, weight, ethnic background, same amount of siblings and birth order, same marital status and same number of children, same size and location of their tumor, same type of cancer and stage, blood type, same allergies, same exercise routines, plus they all live in the same neighborhood and have similar jobs. Each of the 10 "similar" patients is their own individual DNA, family history, genealogy, etc which is why its not possible to give much of a timeline to predict which (if any) patients will have an easier time of it or those who will bounce back quickly.

One commonality Ive noticed is the better your brother does with his intake, the easier his recovery will be. This is especially important if he will have rads in his future. I cant tell you enough about the importance of his daily intake!!! If your brother is on the average or slim side his intake has an even bigger impact as he doesnt have the extra weight to lose. I would suggest asking your brothers doc or nurse what other resources are available to help your brother get thru this. With doctors (and nurses) having so much info to relay things like other specialists at the treatment facility can easily get missed. Something like a speech therapist, SLP, nutritionist, or even therapists would be a big help your brother, even if he doesnt want to use them. Some patients can be very stubborn! Even when the patient notices they're not quite themselves and they're having trouble balancing their cancer diagnosis, they still may refuse further help. Depression is very common with oral cancer (OC) patients and can have a negative impact on patients. Its also very common for the caregivers as well. Anxiety meds can take several weeks before patients notice a sign of it working.

I would definitely suggest discussing your brothers intake a topic of his next doctors visit! Protein helps speed healing.... on a limited diet this could be making it so much more difficult for your brothers body to heal itself after whats hes already been thru. Intake is one the biggest items most patients and caregivers underestimate the importance of. I tend to nag about intake as its something that is easily controllable and makes a tremendous difference in how easily a patient gets thru whatever procedure, treatments, or surgery their doing. Every day OC patients/survivors should strive to take in 48-64 oz of water. Luckily theres water in almost all foods and things like yogurt, soup as well. All those things Ive mentioned are simply tools to help make this temporary ordeal easier on everyone. Check with your brothers doc if he can use Manuka honey to help his to heal and if so, what number (strength). Also ask about if theres any medication he can take to help with the drooling. There may not be anything but you never know unless you ask. He may find a portable suction machine is helpful to remove any extra saliva to help stop the drooling. The abundance of saliva could very well be a side effect relating directly to the surgery, he may can have numbness and You can also ask about adding to his diet high protein whey powder put in his drinks or soup (use the unflavored one). Boost/ensure are as balanced as someone can get besides the prescription feeding formulas designed for use with feeding tubes. The whey powder is readily available in most grocery and drug stores.

Heres a couple of other helpful things I have posted previously to help other patients who are struggling with their intake. Ive drank many of these shakes and it greatly helped me to maintain my daily calories. These giant chocolate, peanut butter milkshakes are loaded with calories. You can make it as thick or thin as you can tolerate.

Milkshakes and smoothies are easier going down than many things. Also try ensure or boost to try taking in the most balanced diet as possible. The following list should help you to find things you can eat easily like canned peaches (these will slide right down) or cream soups. I also enjoyed yoo-hoo and chocolate milk during rads and recovery, plus the extra calories sure didnt hurt. You may find that would help you too.


List of Easy to Eat Foods

Here is a recipe for something I used to make and drink when I went thru treatments and recovery in 2007. This shake has anywhere from 1500-2500 calories depending on how its made. The list of easy to eat foods may help you too, they mostly have a smoother texture and are easier to eat than most other foods.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder
(protein helps with healing, check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to whatever consistency works best for you.


I almost forgot... Centrum now has an adult liquid multivitamin thats readily available at grocery and drug stores. Ive been taking it daily for 6+ months and can honestly say its helped me tremendously. Check with your brothers doc before adding anything to his diet... you just never know even something over the counter could cause your brother further issues.

I hope I didnt overwhelm you with too much info. Best wishes with everything!!!




Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Sep 2018
Posts: 71
Likes: 1
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2018
Posts: 71
Likes: 1
Hello!

I lost a fourth of my tongue on Monday and I have been using syringes to suck extra drool out of my mouth! They sent me home with several different sizes of syringes since I've had so much trouble swallowing anything. I just GENTLY suck spit out every so often when it's too unbearable. I also spend a lot of time laying completely flat on my back which stops me from having the heavy saliva problem.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Joined: Sep 2018
Posts: 9
Jacs Offline OP
Member
OP Offline
Member

Joined: Sep 2018
Posts: 9
Thank you so much. It must be so difficult for you. We haven’t tried syringes so will look into it. Stay strong.


Jacs
Joined: Sep 2018
Posts: 9
Jacs Offline OP
Member
OP Offline
Member

Joined: Sep 2018
Posts: 9
OMG thank you so much for taking such time and care to reply. I am crying. There are so many things you have said that touch a nerve. He is very stubborn and independent my brother. He is also an alcohol addict. Most probably depressed. I can see all this.
We are only 5 weeks post op really and I know it is a long long road. He still can’t swallow and this is really upsetting him. I think it’s the reality of how life changing this is that is hitting hard. I am going to take some time to digest your reply. Thank you so so so much. You have helped so much.


Jacs

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5