New caregiver here - looking for some encouragement and advice!

Hello Michaelene,

I too, was a caregiver for my husband when he was diagnosed over 10 years ago with stage 4 squamos cell carcinoma of the piriform sinus with 2 lymph nodes also cancerous. These first days/weeks are so scary and upsetting. But here we are, 10+ years later and my husband is doing great. I agree with the advice to go to a teaching hospital or large cancer center if possible. We chose the University of Chicago and never regretted the choice. Taking care of yourself so you can be there for him and your children is also very important. You mentioned teeth and fillings. UofC recommended mouth guards made by our local dentist to use during radiation to help prevent mouth sores. He also was prescribed a mouth rinse that really helped, also. He did not lose any teeth and does not have any dental problems now. These are scary times and the treatment can be very difficult but there is hope. This site is filled with others who have been and are where you are now. The advice, wisdom and support here is and was a real help and comfort to us. It may feel like it sometimes, but you are not alone.

Knowledge is power. Study up on the cancer and the treatment options. Normally, there is a standard therapy and optional lines of treatment, but depending on the specific molecular makeup of the disease, sometimes one of the options might be better. The list of potential side effects may sound horrible - but none is as horrible as untreated disease! As to appointments, you will have many questions - best to write them on a note pad so that you do not forget to ask them. PROGNOSIS...well, that applies to groups of patients and to no one in particular. I see too much focus on prognosis. Seeking a prognosis (predicting the future) is a real double-edged sword. As an example of prognosis, mine began as "poor" and dropped to "extremely poor" after an immediate relapse. Well, it relapsed again, then split into two different cancers and I developed a third marrow cancer from years of treatment. After that first relapse, no prognosis could be given. Indeed, none applied. Anyway, I ramble on, so keep reading the comments here as they will be a great help.

Michaelene,

I am sorry that you are here seeking answers to all your questions. You have received some great advice from knowledgeable people. I can't add too much that hasn't already been mentioned but in your original post you asked about vitamins. Please check with your Doctors on this since some feel that vitamins can interfere with the treatments.

A lot of information will be headed your way, and it will seem like you are drinking from a Firehose. As mentioned above, take notes and have questions ready beforehand.

Another couple of tips, Motorcycleguy mentioned Eating, please make sure Michael takes in at least 64 ozs. of fluid daily. Dehydration and constipation can cause problems down the road during treatment. I used a stool softener every other day and had no problems in that department. You can also get some helpful information from the top of the Head and Neck Discussion Board in the first Thread (Superthread, Read Only)

I had Base of Tongue cancer in 2004 , part of my tongue removed along with a Radical Neck Disection. Then Melanoma on my left check which was removed with some reconstruction to balance my face in 2005. It sounds like Michael has a strong positive attitude.

My Best to You, Michael, Family and Everyone Here

Hi Michaelene,

My husband was diagnosed on June 14th and he is in his 6th week of radiation and gearing up for his 3rd round of chemo in a few days. Your post is so timely because even though I am deep into treatment, I was just researching how to support him through this next phase. Here's a few things that helped me: 1) I have one notebook that I use for all things related to his treatment. It contains notes and questions for and from doctors visits, nutrition tracking, insurance info, FMLA info, and notes on symptoms so that I can help him recall at doctors appointments. 2) The second opinion at Cleveland Clinic was extremely helpful!!!!! Don't be afraid to ask every question from your list. 3) I used post from this group to help figure out things that I may need to have on hand to prep for treatment, i.e. VHC Boost, humidifier, new blender, hydration multiplier, Biotene, etc. I found that directing my energy into the operational aspect helped me be less fearful and anxious. 4) I gave him space, but let him know I was there. 5) I provided updates to family and friends. It's taxing explaining things over and over again. I set up group text and provided updates & details based on who the group members were. 6) I tried to help him keep as normal routine as possible. It was important to him to continue working and for the most part I supported him in that. 7) I tried to end all my nagging sentences with "I love you". I figured it would be harder for him to be irritated by my nagging if I put a little sweetener on the end. 8) This group is so very helpful. Don't hesitate to reach out as you go through this journey.

Keep in mind that some days you will walk right beside him. Some days you will walk behind to push him forward. Some days you will walk in front to pull him. Just keep walking forward.

You will be fine!!

Best,

Tawanda

Yeah, it's not much fun. But more than likely his disease is HPV related and has a very high rate of successful treatment. Then if they are able to find the primary tumor (the lymph node is where it has spread...and if it's in only one or two and not ginormous that is another positive sign) you'll likely have some decision to make re: your treatment plan. The standard is chemo + radiation but the data suggests that for some people you can do surgery and radiation alone... And some others, a reduced course of radiation.

The best news is that you are at City of Hope which is an NCI Comprehensive Cancer Center...they will take great care of you and you'll get the right treatment the first time. You're team will focus on head and neck cancers...they are experts on it. That's a good thing.

But as others have said...it's a long journey. Some folks breeze through this (I feel like I was one of them)...and others really struggle. It will depend but many people are able to work all through their treatment (I only missed like 8-9 days to heal from my two surgeries, total...).

My wife did what wives do... She helped me with wound care and nagged me every time I got up to go do something ("sit down!"). Some days I flipped her the bird and laughed. Some days I sat back down and she took care of whatever I got up for cause I did really feel crappy. She made me mashed potatos and gravy for supper for like 2 weeks straight because it was all I wanted to eat and could swallow.

A few tips for him...drink tons of water. Always have a water bottle with you. A wet throat is a happy throat. I solidly believe my water intake was primarily why I feel like I made it through without much incident. Use the salt/baking soda rinse as much as possible. Eat solid foods as long as absolutely possible. Its like any muscle, if you don't use it, it will get stiff and make it that much harder to deal with after.

Anyway, good luck. He'll do great and so will you.

Brandon

When it comes to proton therapy I would say it is the best way to go if they can use it in your case. Proton therapy loses little energy entering the body and the depth it travels and delivers its dose to the tumor is very effective. It delivers the dose to the tumor to kill cancer but they can set it to stop and not travel beyond the tumor thus sparing surrounding tissue and killing just the tumor. There may be some damage to surrounding tissue but if there is it is extremely reduced. With regular radiation, it can be regulated somewhat but it damages tissue around and beyond the tumor.

Proton therapy, also known as proton beam therapy, is a radiation treatment that precisely delivers a beam of protons to disrupt and destroy tumor cells. Compared with traditional radiation, protons have unique properties that allow doctors to better target radiation to the size and shape of the tumor.

Here is a link to a video that explains it.

Here is some reading as to what is best for you--

Also, the proton machines are very expensive and there are only so many of them in the united states, below is information detailing costs and the way they work and the benefits thereof, from "Oncology Nurse Advisor", I am putting the article contents in this post because the link will not post. and another link showing a map of the United States and the location of Proton Machines in operation and the ones being built. Penn Medicine near me within 20 minutes has put one in but it is not operational yet. I think it is to come online sometime in 2023. Too late for me but it will help others in the future, what a Blessing.

Cost vs Benefits: The Controversy Over Proton Beam Radiotherapy

Proton beam therapy systems are now available at more than 2 dozen sites across the United States — including, most recently, the Miami Cancer Institute’s new Proton Therapy Center (scheduled to be unveiled March 15, 2018). These facilities are very expensive. Depending on the number of rooms and other factors, these facilities can cost more than $225 million each and have been called the single most expensive medical device ever built.1 Perhaps not surprisingly, treatment costs exceed those of traditional photon external-beam radiotherapy (EBRT) modalities.1

Most proton beam facilities costs less, $20 million to $150 million for single- and multiroom facilities, according to Scott Warwick, executive director of the National Association of Proton Therapy.

But proton therapy’s allure is strong despite its costs. Imprecise radiation beam targeting, skin surface dose, and in-path irradiation of nontarget internal-organ tissue are the main causes of dose-limiting radiotherapy toxicities.2 The large mass of protons reduces beam broadening and scatter seen with photon EBRT modalities, and most proton beam energy is deposited in target tumor tissue without significant irradiation of nontarget tissue along the beam path behind the target volume.1,2

It stands to reason that proton therapy is most promising for tumors close to the body surface. Proton therapy’s dosimetric depth-precision (its sharp lateral penumbra and distal fall-off) have fueled interest in its use against ocular melanomas, tumors of the spine and skull-base, and childhood brain cancers — as well as its potential for reducing cardiovascular toxicity during breast tumor or esophageal tumor radiotherapy.3-5 Authors of a recent systematic review of 13 studies of proton therapy for breast cancer concluded that mean radiation doses to the heart and lungs were reduced with proton therapy compared with conventional photon EBRT modalities, including intensity-modulated radiotherapy (IMRT).4 However, large, well-designed comparative clinical studies are needed to confirm those potential clinical benefits, the authors cautioned.4

“There are many advantages of proton therapy,” said Minesh Mehta, MD, deputy director and chief of radiation oncology at Miami Cancer Institute. “Proton therapy delivers radiation with pinpoint accuracy, with little to no dose to tissues beyond the tumor, making treatment very effective and much gentler. Patients experience fewer side effects and in certain cases have less chance of recurrence due to the opportunity to deliver higher tumor dose. One of the many open questions patients have with regard to proton therapy is who is a good candidate for this type of treatment. Though every case differs, typically, the best candidates for proton therapy are children with various cancers, and adults with skull-based tumors, tumors in and around the spine, orbital and eye tumors, as well as cancers of the head and neck, esophagus, pancreas and hepatobiliary system, sarcomas, as well as those with left-sided breast cancer.”

Proton Therapy location map

Wishing You the Best

Take Care God Bless-Russ

Michaelene

I am truly sorry both you and your husband have to go through this battle. But because it is HPV cancer it is not the end of the world. I too used my voice to make a living, I was Vice President of a local Teamsters union hall and made a decent living yelling at lawyers and employers. I had cancer at the base of my tongue and needed a full neck disection removing my epoglotis, part of the base of my tongue, and uvula. My voice changed a lot and isn't qite as strong as it once was point I could still get my point across.

All said above is great advise and I really can't add to it but I would like to stress that he should drink lots of fluids and even when he doesn't want to he should still eat. I lost 92 pounds throughout my battle but at the time weighing 297 it wasn't a big deal. You both will have good days and bad but battling this F...ing beast is a team effort. I am glad you have confidence in your doctors and don't be afraid to ask questions and as another has said above keep notes along with questions between visits. Tell your husband that Jeff said..."If I can do it anybody can"

But most importantly you both have to... StayPositiveStayStrong

Jeff

Michaelene,

You are more than welcome to reach out any time you need or just want too. We will all help to get you all through this :)

And sorry I made you cry, but good time to get tears out of the way :)

You are doing everything you should right now, know that it’s enough. Your love for your husband is admirable.

Welcome to our little club,

Kari