My name is Julie, my husband is Mike and he has SCC - 4.8 cm tumor at the base of his tongue.

In mid August 2016 Mike has 2 teeth removed and shortly thereafter I noticed he was slurring some words. I urged him to go see his regular doc and he did. She have him some anti-biotics and said if it wasn't better in 6 weeks to come back. He caked back in 2 weeks and went back asking for a referral to ENT. ENT sent him for an MRI. That MRI was on a Thursday night. Since the next Monday nothing had been the same.

10/3/16 - rcvd call about a mass
10/7/16 - ultrasound assisted biopsy on lymph node & PET scan
10/11/16 - Surgical biopsy of tongue mass
10/14/16 - phone call confirming cancer type and staging
10/20/16 - oncology team appointment (radiation team, speech therapist, social worker, dietician, mask making for radiation, flu shots)
10/21/16 - chemo consult
11/2/16 - PEG installed
11/7/16 - Cisplatin & Rad begin

Crazy times. It's such a blur and so much information to have pushed all at once. I'm so grateful it has moved quickly. Now the tough stuff begins. Deep sigh.

I've done some looking around here and I'm grateful for this well put together information and the people who contribute here.

I'll continue to look around.

Thanks.

Julie

Hi Julie,

Welcome to the forum. I am sorry you need to join this circle of friends but we are here for you.

The initial diagnosis and the preparation for treatment are tough times. There is so much to take in and so much to find out about. It sounds like the hospital has a good team looking after your husband, not every hospital provides the services of a dietitian and/or speech therapist. So, trust that your husband is in good hands. We are not medical people here on the forum, but we have all gone through the experience either as patients or caregivers, so we know how it feels.

Please keep us updated and hope that everything moves along smoothly for you and your husband.

Thanks. I do have the sense we are in good hands.

Welcome to OCF! Looks like you and your husband went from being ok to a whirlwind of appointments and right into treatment. Speed is good but there are many things that should be done before he starts rads. You have found the very best online resource to help both you and your husband get thru his treatments and recovery. We have been there and know how difficult it can be, we completely understand where you are coming from.

Prior to starting or any surgery, your husband should have gotten a thorough dental check up and flouride trays made. Any teeth that arent in the best shape should have been pulled before rads started as there could be problems doing so after rads. Also strict attention to always being diligent with brushing and flossing his teeth several times daily is very important. A waterpik is a great tool to help get in between teeth. Use the waterpik on its lowest setting with nonalcoholic mouthwash mixed with warm water.

He also should have gotten a full blood work up including thyroid and testosterone levels. Its not easy to get these levels after everything has started so I hope his physicians have done these tests already.

As I tell all new members who are getting prepared to begin treatments, focus only on what is within your control... intake, pain management, etc. Avoid all the speculating as much as possible, anything that starts with "what if" should be avoided and focus on more positive things. If your husband is able to eat, encourage him to have all his favorites now and to keep eating as long as he can. Even with having a feeding tube already he still must continue to swallow every day even if its only small sips of water. Eating spicy and hard to eat things like steaks, ribs, Mexican foods, etc may become almost impossible to eat during and after rads. Most patients lose significant amounts of weight during their treatments. Usually the doctors have a goal of no weight loss (even if the patient is overweight). By losing weight, it means they arent taking in enough calories. Even 2000 or 2500 calories a day isnt enough for some patients, they need 3000, 3500 or more. This higher intake must be done every single day even if its difficult to achieve, it is vitally important. Those who skip a day or two here and there quickly fall into a viscous cycle of playing "catch up" and "I'll do better tomorrow". But tomorrow never comes and catching up never seems to happen. I was one of those and ended up hospitalized for malnutrition and dehydration several times. Your husband can get extra hydration a few times a week in the chemo lab with a prescription from his radiation oncologist. This will instantly make him feel better so I would definitely recommend getting that script so he has a standing order to get fluids.

Try to line up some drivers to help traveling back and forth to rad treatments. The American Cancer Society has a volunteer driver program that might be available. Anyone who offers to help, let them know when the time comes you will contact them. Write down their name and number and reach out for help if you need a hand. There are a million small things that can add up to making treatments and recovery much easier. Even caregivers need help to get a break once in a while. So please be smart and take good care of you too. Set aside some free time to get away to do your own things to give you a breather to catch your breath.

Pay close attention to any changes in your husbands hearing. Make sure to immediately pass this along to his medical oncologist. Do NOT get another dose of cisplatin if he notices any change no matter how slight, even if its only a humming or low buzzing noise. Cisplatin is known to cause permanent hearing loss. It cant be corrected which is why it is so important to let the doctor know so they can change the type of chemo to avoid having any further hearing issues.

Best wishes with everything!!!

Hi Julie, I don't have any new thoughts to add to Christine's post above. You will find that she is incredibly knowledgeable as well as many others on this site. Please heed the suggestions as this will make the road less bumpy.

Also, please keep us updated and do not hesitate to ask any questions. I found it very helpful to just start reading by topic every post on the site. It took many days but was well worth it to learn all I could. Some might think that was a little over the top but I learned so much !

Do remember to take time for you too !

Jo

Thank you both very much.

Mike did have a dental visit and trays made to help protect his teeth, that also happened before treatment started.

He did have a full blood workup as well but I'm not certain of thyroid and testosterone levels, I'll ask.

He's eating 100% by mouth one week into radiation and getting about 2,000 calories a day. I can see that it won't be long before we start using the tube. He's been on a weight gain mission and gained 18 pounds before treatment started. His sense of taste is already messed up.

I'll read through your words of caution again and add them to my daily checklist of things I'm doing and looking out of.

I really appreciate everything you've shared and value your advice.

Hi Julie, I too am sorry that you have need of this site. Mike's symptoms sounded a lot like what my Husband Kris had. That slurred speech! Kris also had a lot of ear pain. It took 6 months for him to get a diagnosis, but was pretty quick after he developed the slurred speech. ( Caused by a lymph node pressing on the Hypoglossal nerve.)
This is a tough road. No one here will kid you about that, but it is doable. I didn't find this site until we were nearly through treatment of rads and chemo, so I envy you that you have come here so quickly.
Please come here often for support help and advice. Nothing is a silly question.
Thinking of you guys,
Tammy

P.S. Kris is alive and well, coming up on 6 years since he was diagnosed. Had 1 blip on this road, but life is good.

Julie -

Glad you've found the website. Sorry for the reason. Christine provided a great deal of relevant details associated with treatment and based on your response it seems as though you and your husband are aware of and addressed most of them. You will be receiving a lot of information from your doctors / nurses. Its always a good idea to ask questions if something isn't clear.

I would add the following -
Make a comfortable space for your husband during treatments and the recovery that will follow. Extra pillows / blankets / etc. Make a space for his meds close to where he will be spending his time. Consider separate beds. (His sleep will be very inconsistent and you will need your rest as well.) In a very short period of time, his favorite foods will no longer be appealing, so you will need to stock up on some type of nutritional supplement, ensure or other.) Sometimes even the smell of food can cause an adverse effect.

Stay strong and alert. Do not be afraid to ask questions. But also be aware that your husband may need some space to deal with the emotional and mental strains that treatments can cause. Keep a positive attitude!

Good Luck

Hi Julie, please let us know how Mike is doing. bjmpittsburgh provided a great list for the "getting ready" time period. As I read that post I kept saying yes to each suggestion. Now is the time to make everything as comfortable as possible. Don't forget to take advantage of offers of help from family and friends. Doing so will provide much needed assistance. Take care of yourself also as this is an extremely stressful and tiring time for the caregiver too. So glad to hear Mike had put on some weight and is keeping his nutrition up. This will help a lot down the road. Hoping to hear from you soon.

Thanks everyone.

Day 8 of radiation complete.

We took a vacation to an all inclusive resort and Mike used that as part of his weight gain plan. His starting weight wasn't "static" so is not a huge surprise that he's lost a bunch of weight in the first week - down 8 pounds. His calorie count has been at 2,000 a day, he's working on upping that.

The first week of chemo was tough, he was just so very tired I had to wake up for eating and drinking often. I didn't enjoy that, but it is what it is.

We have a recliner all situated with a side table on each side. I placed a crib mattress protector over the top of it to help save the chair from sweats etc. A have a basket full of meds that I've labeled the tops of the bottles so they can be easily read. We are using the App Dosecast to track medication - I'm loving the app.

I've got another situation set up for cleaning of the peg. I put all the supplies in a pretty gift bag. Doing as much as we can to minimize a medical environment and have things be convenient.

Under his side table I have a basket of an extra sheet along with the hospital type puke bags I bought on Amazon.

Across the room we have a cool mist humidifier set up.

As for me, I'm continuing to go to bootcamp a couple times a week. My friends have asked repeatedly what the can do - I've told then if they are making a healthful meal and wanted to make one extra serving I'd be grateful. I've had delicious chili, grilled salmon, roasted veggies. My friends and family are truly the best. Mike's eats are 100% very soft and high calorie so they aren't really a match for me.

Mike had received a thyroid test a while back so there is a baseline for that in place. Hearing is being tested today. I asked about a testosterone baseline today and the RO didn't see a reason for it ... anyone able to say more about that?

The RO looked today and said the tumor is responding to treatment already - that's good to hear.

Thanks everyone for the words of wisdom, car, concern and prayers if that's your thing.