Hi everyone. Still coming to terms with my diagnosis routine visit to get my teeth cleaned became a visit to oral surgeon for biopsy and SCC diagnosis a couple of days later. All this came a week before Christmas 2017. I thought I had the beginning of gum disease and put off going to get my teeth cleaned because I didn’t want to deal with it. Probably should have caught it 6 mos earlier. My dentist compared my X-rays from 1 year ago and saw I had 90% bone loss in my back two lower molars. I am lucky enough to be surrounded by many drs and dentists I call my friends and they connected me to some of the best surgeons in NYC. I chose my surgeon at Columbia and on Jan 10th 2018 I had 10 hrs of surgery to remove 5cm of my jaw and gum and cheek. It was all reconstructed with my fibula. Recovery went well and biopsy revealed one of 20 lymph nodes was positive. Started 6 weeks of radiation 4 weeks after surgery and just finished this past Monday. Have to say this week really sucks. Most pain I’ve had to endure yet with mouth sores. During the entire radiation process I was also being infused at immunologist with high levels of Vit C, and DMSO three times a week. My mouth sores didn't get bad until week 6 but now just trying to get through this week. Using magic mouthwash but it only lasts for about an hour. It’s been an unbelievable ride. I am one of the 7% that fell in the bad luck group. Non smoker ,56 year old, very active female.

Welcome to OCF, Maria! You are in a great place to help you with info and support. You've been thru alot and recovery can be a difficult time for many. You're not alone with being one of the few who have no known cause. We have many members who are right there with you. Im a former smoker so I know what caused my cancer. I dont know which would be harder, not knowing what was behind getting cancer or knowing you did it to yourself, that it was your choice to smoke and this is the result. I guess both situations really stink!!!

The very worst of rads is the last week or so of treatments and the first 2-3 weeks after rads ends. Radiation is cumulative and continues to work even after treatments have ceased. Most patients very slowly begin to feel a teeny bit better and start to notice improvements about 2 or 3 weeks post rads. Recovery can be full of ups and downs with some set backs thrown in to keep things interesting. I remember when I was at the stage you are at and felt the very worst I have ever felt in my life.

I hope you can do better than I did and push yourself to push your intake higher, you need to take in at the bare minimum 2500 calories and 48-64 oz of water every single day. If you can do more that is even better and will help speed up your healing. I can not stress enough how vitally important your intake is during these difficult days. Thats the single biggest controllable thing you can do during these bad few weeks to help get you into easier weeks where you can see you're making progress. If necessary, your doc can give you a prescription to get extra fluids at the hospital to help you to keep hydrated. You will be amazed at how much better you will feel after a couple bags of fluids. I would drag myself in, barely able to walk and a couple hours later I was all perked up and walked steadily out the door. Check with yoru doc about if its ok to add some high protein whey powder to your liquids to help speed your healing.

Mouth sores from rads are the absolute worst!!! Keep using the magic mouthwash (MM) when necessary. You can also rinse your mouth with 1 cup warm water, 1 tsp baking soda and 1 tsp salt. The salt will probably burn your sensitive mouth. Its ok to cut back the salt but do your very best to not completely omit it, try to keep some salt in the mixture so it really can help heal your sore mouth. Your doc can give you prescription meds to help ease your discomfort. Many patients who are at the same part of their treatments/recovery are using the fentanyl patch to keep a steady flow of meds in your system to manage your pain. I think when I was at about the same phase as where you are, I was using 150 mcg patch soon to be stepped down to 125, then 100, 75, etc.

Hang in there and get your rest to help you heal. Best wishes to have a speedy recovery.

Thank you Christine,

Getting calories in is very hard. Having fluids infused now and definitely feeling better. Will try harder to get the calories in. I’ve sustained myself on a milkshake a day but going to make an effort to add more. Happy to be surrounded by others who have been thru this ordeal.

Hi Maria. I'm new here and am just wrapping up my first week of radiation and chemo. I'm slated for seven weeks. Medical oncologist says she will be thrilled if she can get five doses of chemo in me. I am curious to hear about your progression with the radiation and what happened to you along the way. Like you my cancer is a head scratcher. Not HPV drank early in my career Wed-Sat? but for six years was that enough? Maybe. Anyway...if you can tell me anything to help me get through with the next six weeks I would be grateful.


Jay

Hi Jay and Maria,

I’m new here as well and I sent you a PM Syzygy48 but would love to know how your chemo and radiation is going as I start that next week.

So happy that you are done Maria! Can’t wait until I can say the same thing!!

Linda

Hi Jay,

I don’t know if my case is the norm but I started to have symptoms in week 3, food started to taste different and some mouth soreness. Week 4 was ok but by week 5 I started to feel the typical symptoms. My tongue developed sores that made eating food very difficult and I started to need a nap during the day. Week 6 everything deteriorated. I started to lose weight and wasn’t interested in food. Survived on Baskin Robbins chocolate shakes. The hardest emotional part was finishing radiation and still being in so much discomfort. I started to use a pain med at night to sleep. I think I paced myself to get to my 30th radiation treatment and there was a letdown when I was still dealing with pain. I am now 6 days post radiation. Pain is more manangeble but now I have blisters in my mouth. I had to have two bags of fluids this week because I was very dehydrated. Probably down 10 lbs in the last two weeks but I really feel that I’ve turned the corner now.

Listen to your body and rest as much as you can. Wishing you all the best.

Linda,

Best of luck. I remember when I started it seemed so far away. Take care of yourself and know this too shall pass.

Maria, Im sorry to read about what you are going thru. At just 6 days post rads, you are right in the worst of it. Radiation is cumulative and continues to work even after finishing treatments. Most patients will report the first 2 - 3 weeks after completing rads are the hardest. I'll never forget how difficult this was! I spent many days stuck in the hospital for dehydration and malnutrition. I know how hard it is but you MUST push yourself to take in as much as possible, this is the only way to begin to feel better. If you can hit the daily minimums of 2500 calories and 48-64 oz of water, I guarantee you will feel a difference. Im glad to hear you are going for hydration, that helps tremendously!!! If you dont get enough water every day, you must get a few bags of fluids.

Do you have anyone helping you? If so maybe they could make this shake for you or pick up the baskin robbins shake you mentioned? If you dont have someone there with you, are there any friends or relatives that could stop by to give you a hand? Heres what I have posted to help other patients who are struggling with their intake. 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.


PPS... Centrum 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. I think this would be very helpful to you with just completing rads. When you feel good and strong it helps you to better manage everything else. If you have a feeding tube this is a liquid and can easily be put thru your tube.

Christine,

I am very lucky to be surrounded by many family members and friends who are there to help. It’s hard getting the wa We I take you recommend. The shakes are covering tHe calories.i think the let down was not realizing the process is 9 weeks not 6. It would have made my mindset different.

Really appreciate having people who have gone through this to help. I remember my surgeon telling me that I may go through the rest of my life and not meet another person who has gone through this.

Thanks again for all the support.

Maria,

You’ve received the best advise so far, and Congratulations on finishing treatments! The worst may not be totally behind you right now, but at least you’ve finished treatments, and figure it can take just as long as treatments to partially recover certain aspects, some things as long as 2 years is possible. Remember it’s a marathon, not a sprint, and you’re doing great so far!

Btw, I’m in NYC too, know your hospital, but was treated at several different ones myself, but their all great!

All the best!

Thank you Paul!

Where were you treated?

Too many places lol. I was treated at Mt Sinai at 95th Street, Staten Island Radiology, Staten Island University Hospital, St Vincent’s in SI, Beth Israel at Union Square, Beth Israel West, but think they may had another name, ProCure for Protons in NJ, NYU on 34th steet and on 1st ave, 38th Street, and a private oncologist in Staten Island.

Paul,

So happy I found your post here. My free flap essentially failed and they had to salvage with a pec flap. I see you have a pec flap too! I would be grateful to hear about your experience and any advice you can give me.


Jay

Maria,

Thank you for the rundown of your situation. I'm glad the treatments are in your rearview mirror! I'm in my third week and even that seems like an accomplishment compared to where I started. How are you feeling now?


Jay

Hi Jay,

I have a pec flap in the left neck from a recurrence in 2012, and did good with that, but had a recurrence to another area close by in the carotid in 2013, so I had my left carotid removed, IORT during surgery, and 6 weeks later, had proton radiation and chemo, which seemed to do the trick so far!

The segmental mandibularectomy was for osteoradionecrosis side effect of radiation and tooth extraction (injury), beginning in 2014, but this type surgery is the same as if it was cancer the the jaw area.

I hope you’re doing well with radiation? You cav start a new thread, and may get more responses.

Good luck

Hi Jay,

Now two weeks post Rads and am feeling considerably better. I am now able to eat many foods and actually starting to taste some flavors. I think I was emotionally unprepared for the duration of the radiation process taking 8 -9 weeks, not 6. I am going to see my surgeon this week and begin my monthly checks. I wonder how everyone deals with the fear of recurrence. I suppose we just try and take it one day at a time but the thought is never far from your mind. Hope you are doing better as well.

Maria

Maria, Im so glad you are starting to feel batter!!! The first few weeks after finishing rads are the hardest ones. Keep up with hitting your daily minimums of calories and hydration and you will soon see even more improvements.

As far as everyone's fear of having a recurrence goes, that one hits us all. After going thru so much with the radiation treatments thinking of having to go thru it again is terrifying!

Hang in there!!!

Thank you Christine!

Your advise has been very helpful as I’ve tried to get through the last few weeks of radiation.

Knowing there are others who understand your anxiety and fear makes you feel less alone.

Very grateful for this community!

Thats what were here for... to help each other! I had a terrible time struggling thru my rads and recovery. I hope to pass along what I learned to help others avoid the mistakes Ive made. OC is a horrible disease that causes patients to suffer so much. Its not just hard on the body, mentally its just as difficult to get thru. Being able to connect with others who have been in the same situation can make a huge difference to patients who are struggling. Its ok to lean on us to get thru the worst of it. We get it and are here for you and everyone else who needs us.

Best wishes with your continued recovery

The month after radiation was the most difficult for me. In retrospect I wish I had rested more and not tried to do so much. I followed Christine B’s advice strictly and my treatment team told me I was in the top 1% of minimal complication and side effects they had seen.

All credit to Christine!