Hi Everyone,
My husband (47 years old) was recently diagosed with stage 3 throat cancer. He is undergoing radiation along with chemotherapy, with the hope of shrinking the tumors. It has metastasised to the lymph nodes on both sieds of the neck, but according to a recent PET scan, it hasn't moved elsewhere.
It is currently inoperable because of the involvement of the coratiod artery and the other large vessels in the neck.
I guess I am hoping to find a support group that I can lean on when times get tough. Its hard being the spouse of someone who is going thru such a difficult time. He had a PAG tube installed today, because the docs seem to think that in the near future the radiation will begin to make it difficult for him to swallow.
I would love to hear from others who understand what we are experiencing.

Leslie,

Im sorry to hear what you and your husband are going through and I wish you the best in winning this battle.

Being a caregiver is one of the toughest jobs there is and your husband is lucky to have you by his side. You have come to the right place for support and you will find that some of the most caring people in the world will be here soon to answer any questions you have.

Jerry

I've been reading lots of previous posts and have learned lots in a very short period of time. Primarily, that we have a long and difficult road ahead of us, but we also have positive attitudes, and believe that we will see this thru to the light at the end of the tunnel.
Can someone explain to me some of the lingo listed underneath each persons name?
For instance: SCC? of the _______
Cisplatin (which is what my husband is currently getting) x 3?
Thanks for your replies....

Leslie,
One place on this forum I found to be a valuable source of information is the following:

Go to the main Forum List.
Go to the last topic "Getting through it project" and click on it
Go to the 5th topic down "Draft Copy" and click on it.
At the top will be a link "GTI draft copy, click on it.

Something that will be helpful to others who will post answers to your questions is for you to put in your signature a description and stage of your husbands cancer, what type of treatment/how many he is having, when did he start treatment. Take a look at what others have posted in there signature.

Base on my experience and what I have read, the symptoms such as sore mouth and excess moucus will start around the 4th/5th week.
What is really important now is to keep the nutrition and hydration up. My doctors instructed me to take in at least 2,600 calories and drink 48 oz of water a day. This is very important to the healing process. When I could not take food in by mouth I was pouring 6 cans a day (2 per feeding) of Carnation instant breakfast VHC (560 calories per can) drinks down my peg tube a day. The nutrionist at the hospital ordered these for me and charged it to my insurance. It was delivered to my house.

If he is on a lot of pain medication, make sure he is taking a stool softener to prevent constipation.

I took Cisplatin and 5fu for my chemo at the first and fouth week of my treatment in which I was in the hospital for 5 days each on a 96 hour drip. Everyones treatment can be different.

Keep posting all your questions and comments. There is a great support group on here that will help.

Hi Leslie,

I wish you and your husband all the best with the battle ahead. It will by no means be easy but you can expect a huge amount of support from the people on this site. They have a wealth of knowledge and many will have been where you are going.

SCC stand for 'Squamous Cell Carcinoma' which is the type of cancer that most, but not all, of us are battling (or have beaten). Cisplatin x 3, just means that the person had 3 treatments with Cisplatin. Personally I had x5 (was supposed to be x6).

I hope this helps. If you have any other questions please fell free to ask. Good luck!

Sue

Leslie:

Welcome to OCF. You will find lots of abbreviations used, sorry but I couldnt find the post where they were listed. What is under the signatures are facts about the persons diagnosis and treatment, etc. It greatly helps people responding to your posts if you have info listed.

You will also find here lots of support and answers to your questions. How far is your husband into his treatments? Is he being treated at a cancer center? If you have questions, feel free to ask away, you will get lots of help thru this difficult time.

Leslie,
I was given this list shortly after joining and found it to be helpful.

Acronyms:
BaCC = Basil Cell Carcinoma
Biopsy = tissue sample removed for microscopic examination
BOT = Base of tongue
Brachytherapy = Radiation therapy with internal radioactive �seeds�
CAT = Computed Axial Tomography (scan)
CCC = Cancer Care Center
CT = Computed (computer) Tomography (scan)
Dives = treatments in a HBO unit
DX = Diagnosis
ENT = Ear Nose and Throat Doctor and surgeon
FNA = Fine Needle Aspiration � (Needle Biopsy)
HBO(T) = Hyperbaric Oxygen Treatments
HIPAA = Health Insurance Portability and Accountability Act
HN = Head and neck
HNC = Head and Neck Cancer
HPV = Human Papilloma Virus
IMRT = Intensity Modulated Radiation Therapy
Met(s) = Metastasis or cancer spread
MRI = Magnetic Resonance Imaging (scan)
NCCN = National Comprehensive Cancer Network
PCP = Primary Care Physician
PEG = Percutaneous Endoscopic Gastronomy (G tube or tube) Feeding
PET = Positron Emission Tomography (scan)
PT = Physical Therapist
QOL = Quality Of Life
RND = Radical Neck Dissection (sometimes Resection) also Modified
RO = Radiation Oncologist
RT = Radiation Therapy also Radiotherapy (Radio)
RX = Prescription or treatment
SCC(a) = Squamous Cell Carcinoma also SqCCA and sq cell ca
TX = Treatment
Xerostomia = low saliva
XRT = X ray Radiation Therapy

Welcome, and sorry you are having to go through this. I think this whole ordeal is harder on the caregivers than on the patients.

Are there plans to do a neck dissection after the radiation and chemo?

Lots of great information here, both in the Search areas and from the forums. Keep coming back!

Thanks so much for the list of terms..it will make future readings and postings more informative and accurate.

Leslie,

You are already doing two things that are the biggest help to you and your hubby:

You have found this board and.....you are reading, reading, reading. Taking time to read a lot here...not only the boards here but all the information the main site provides gives you a lot of ammunition to fight this battle.

There are a whole host of amazing people on this board and their ability to provide insight into many subjects regarding OC (Oral Cancer) is such a help when you feel so alone. You will receive answers to not only the medical/technical questions but also the emotional issues everyone faces with this disease.

So, keep doing what you are doing..you are helping yourself by reading as much as you can and we will be here when you have questions.

Deb

Leslie,

This site is here to make your journey easier so ask any and all questions you have.

Here is a Post I made shortly after my Tx was over. I hope it helps you understand what he MAY go through as each of us can respond differently to the same Tx regimen.

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

Don - thanks for the list of acronyms! I had figured out many but not all - it was like taking a vocabulary quiz! CMB

Hey the list sure clears up some mud for me too THANKS!! And even though I am new to this site I am sure you will find the information you need as well as make some valuable connections with some wonderful people who want to help. I kinda wish my hubby was computer literate maybe he still will...Miracles do happen.

Best of luck to you and your husband sounds like you make a good team!

Dianne