New Here, just finished treatment

josborn73

I’m a 49 y/o male that was diagnosed with a large mass at base of tongue in April of 2022. It all started with severe pain in the right ear in September of 2021 .I was told by several different urgent care Dr’s that it was fluid in my ear, a severe ear infection and allergies. I ultimately made an appointment with a ENT Dr that did a CT scan this is when the mass was discovered.After 3 biopsies ( first 2 were negative), I was told that it was positive and a result of HPV. After initial PET scan I was told Stage 3 with base of tongue and right lymph node. Treatment seemed like it took forever to start , 35 rounds of radiation and 3 rounds of chemo. Once treatment started , after first round of chemo and one radiation appointment I tested positive for COVID. This was found when I was tested prior to G Tube placement. This put all treatment and G Tube placement on hold for about 2-1/2 weeks. Thankfully I had zero symptoms the entire time. Treatments started back and the tube was placed once I finally tested negative. So glad I decided on the tube, I lost 20 pounds the first 2 weeks as I was unable to swallow .Once back in treatment I fought my way through the radiation appointments, they didn’t seem bad the first few weeks( besides getting over the fear of wearing the mask and being strapped to the table). I really had to calm myself and find a happy place while laying there. This is where I thanked God . It was tough , but I am thankful that this was identified and I was able to receive treatment . Treatment did get harder as the weeks went on, especially the last 2 weeks. I had a really rough time with fatigue and wasn’t sleeping the last couple weeks. My Wife was a life saver during this time (she”s been my rock throughout all of this ). She’d help me get dressed and out the door for my treatments. I completed my 35 rounds of radiation on 9/21/22 andI thought I was done. Told my family I was going back yo work in October. I had no idea what was to come. It is now October 11 and I’m still dealing with the side affects of the radiation. Lots of phlegm and saliva, not sleeping and a lot of fatigue. Things are slowly getting better. I still depend on the tube for feeding due to the sores on my tongue. They are getting better, but it’s a very slow process. The phlegm is not as bad today as it was the first 2 weeks . I’ve bought several boxes of the foam swabs( Dr called them dental lollipops) to help clean my mouth and remove the phlegm.. Swallowing has become a lot easier again and the lump in my throat is finally gone and so is all of the pain. I have been able to ween myself off almost all of the pin medication . Down to 2 twice a day and plan to be off all within the month. I am still fighting the fatigue, some days are harder than than next. I’ve been told not to expect a lot of changes from day to day and to take it slow. I am so thankful for all of the support I received and continue to receive. . I couldn’t have done this alone. My radiation Dr has said that my mouth and throat look good and we are expecting positive results.I am scheduled for a follow up scan in December.

Please make sure you vaccinate your kids for the HPV virus. Thankfully my kids have been. The Dr said the HPV virus can take 20 years before it is discovered.

God bless you all,

JO

wbcgaruss

JO thank you for joining the forum and being open about your cancer and treatment. I am so glad you are finished treatment and recovering now. As you have explained this treatment of cancer in the H&N area is a tough haul and not easy at all, a real battle and you have been through some of the worst. And now as you are finding out following treatment is the recovery from the treatments which is a long process measured in weeks and months. I know you want to go back to work but you have to just give yourself time to recover and get through the rest of this recovery. You can't rush this along. Dealing with phlegm and fatigue is not easy but one day you will start feeling better. Sleeping problems that you are having can occur. I had no problem sleeping, I was so tired and fatigued that I had to push myself to get done what I had to do each day because if I sat down I would soon fall asleep. I also pushed myself to walk and do things around the house and I think being active helps in recovery. I think it is generally estimated it takes 6-8 weeks following treatment to start to notice improvement and lessening of fatigue and starting to feel better but each person is different as per their cancer area and treatment regimen.

One thing you can do to fight the phlegm and help your mouth feel better is the salt and baking soda rinse. Rinse and clear out your mouth as often as necessary. I think at my worst I was doing it every 20 minutes or half an hour.

JO Here Are Recipes

For the salt/baking soda mixes.

Rinse as often or as little as needed to deal with thick saliva even the stringy stuff.

The trick is to stay ahead of it as best you can.

There are no easy solutions but this will eventually quit.

You may find it beneficial to sleep in a recliner to keep the thick stuff out of your throat and airway.

Laying down directs it to the back of your mouth/throat area.

Even in a recliner I would wake up at times with my air cut off and had to work at getting it cleared out.

Wishing You The Best-Take Care-God Bless-Russ

Mouth Rinse Recipes to Use During Chemotherapy

Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

Soda Mouth Rinse: A Good Rinse for Before You Eat

1 teaspoon baking soda

1 cup of warm water

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

Saltwater Mouth Rinse

1/4 teaspoon salt

1 cup of warm water

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

Salt and Soda Rinse for Gummy Mouth

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

1/2 teaspoon salt

2 tablespoons baking soda

4 cups of warm water

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

Peroxide Rinse for Crusted Sores

If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

1 cup hydrogen peroxide

1 cup water or

1 cup salt water (1 teaspoon of salt in 4 cups of water)

If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.

Use a non-peroxide rinse for two days, before returning to this mixture.

Wishing You the Best

Take Care God Bless-Russ

josborn73

Russ-

Thank you so much for taking the time to reply and for your encouragement. This has truly been a life changing moment, but it’s so relieving to know that I’m not alone. Hearing from someone who fought through this is so much more valuable than anything a Dr could ever share. Thank you for sharing your experience and for the all the very helpful recipes. I have been rinsing multiple times daily, but only with the baking soda ( this was all the radiation Dr. told me to do). I did start with the salt/baking soda this morning and I could definitely feel the difference afterwards.

I will take this slow. My biggest thing is I’m used to going all day, up at 3:00am for work and going all day long till I’m home around 6:00. I’m not one to sit around (lol). I know this is an exception and I will continue to do what is needed to get my mind and body ready for the future. I am working on setting a daily routine , up around the same time each day , keeping the same bedtime each night and setting small goals for for each day .I do have a recumbent bike that I will start using (I’m going to start off slow and work my way up).I know that sitting here is not option and will not benefit me down the road.

I have so much in my life to be grateful for and so many loved ones to fight for. I am so blessed to have an amazing family and so many incredible friends. This is definitely not something I could have done alone.

Again , thank you so very much for your words of wisdom and for sharing your experience, strength and hope with me.

God Bless,

Jason