Preparing for Cancer Treatmet

long list

Hi Bob,

Welcome to the H&N forum, I am sorry you find yourself here, but we do what we can to help.

First off, it sounds like you caught the cancer in the early stage and you treatment will be behind you sooner than you think.  Now for my input on your questions:

what questions should I absolutely ask my doctors;

Chose an experienced oncologist and treatment center, take someone with you to appts, take notes.  Read the Superthread for ideas on questions

what has worked best for others regarding surgery, chemo and radiation;

I opted for surgery, rads and Erbitux,  all combinations of the 3 are discussed here.  Look your doctor in the eyes and ask what he would do and why.

what should I avoid doing, eating, medications, etc;

Prior to treatments, so what you normally do.  During treatments, ask your doctors and nurses about all medications, lotions and supplements.

how do chemo and radiation change one's everyday life;

On the bright side, so far it has made me free from cancer.  On the down side, I have dry mouth and not so normal taste buds, but each is truly getting better every day.

tell me about the pain I should expect (what type, when does it begin, duration, how best to manage it);

I had 2 bad pains, the first was a bad PEG tube which had to be replaced around week 5, then it was ok,  The second was neck burn during weeks 6, 7 & 8, it was terrible until I got the correct cream, then it was only an inconvenience.

what should my wife (my primary caregiver expect (tips please);

read the superthread, seek help if needed, tell your team everything that is going on, find time to herself, get use to sound of hacking, coughing, choking, buy some ear plugs (lol)

I have purchased a journal to keep notes, prescriptions, etc, anything else I can do to prepare?

There is a list of must haves in the superthread, be prepared, week-ends can last forever.

how will this affect my ability to meet with others (church, civic group responsibilities, meeting with friends, etc.).

Do what you can do.  It is great to get out and do some things.  You are going to be week and tired.

Good luck,

Matt

bob, you and ur wife come

bob, you and ur wife come here often with any question and concerns.  someone is usually here to help and answer you immediately.  we are always willing to help, pray, encourage, listen, and whatever esle you need.  u've found a great site with great people.  wishing you the very best and fewest side effects possible.  keep us posted on ur progress.

God bless you,

dj

Proactive is the ticket

Bob,

First, sorry about the diagnosis but it is what it is. Second, congratulations on being proactive to learn and get prepared for a very intense treatment plan. Third,

• what questions should I absolutely ask my doctors
  Many suggest getting a second opinion at a NCI designated CCC. These facilities are know to have a fully integrated approach to your care and treatment. Even if you do not do this make sure your care is team based and that your case is reviewed by tumor board. If your doctor does not participate in a team based approach, I would look for a provder who does.

• what has worked best for others regarding surgery, chemo and radiation;
  What works best is what is recommended and in adherence to the standard of care as defined in the NCCN guidelines.

• what should I avoid doing, eating, medications, etc;
  Keeping on weight is an issue all face. Eat anything and everything you possibly can digest. Bacon, ham, lard, eggs, whatever. This is no time to consider if food is heatly as all food consumed is far better than any food avoided.
  
  
• how do chemo and radiation change one's everyday life;
  You will most likely be sick as hell during treatment. Chemo can lay you down for a couple days or a week or more. My cycle was three weeks and just as I was finally shaking off the side effects, the next round was waiting. Radiation side effects just accumulate and grind you down. Plan on 10-12 weeks to feel the uptick. Remember, this only applies if such treatment is recommended; some just do surgery, others all combinations.
  
  It is fine to get prepared but also don't get ahead of yourself. Be knowledgable but wait to have the conversation before letting your thoughts run wild.
  
  
• tell me about the pain I should expect (what type, when does it begin, duration, how best to manage it);
  Again, pain is totally dependent on the specific treatments you receive and also your own unique medical history and condition and makeup. This is where the "everyone is different" quote comes in. In fact, everything about your cancer and treatment is unique; you can only learn what can happen and be prepared to adjust based on you.
  
  
• what should my wife (my primary caregiver expect (tips please);
  Some feel better if a second set of ears is at the appointments. Personally, the better prepared and personally involved the patient is like you, the less the need to drag her along. If you are up to speed you will be firing the questions, know the typical range of responses, so it is much less likely you will miss much. Of course others including the caregiver may find comfort attending and hearing themselves.  Some appointments and treatments benefit wtih a driver getting you home, so make sure to ask if they do not mention those times.
  The most important role of the caregiver is to ensure you address the three golden goals: HYDRATION - NUTRITION - PAIN MANAGEMENT. If you do nothing else and can only remember three things, this is the list. You cover these three areas and you will get through this in as good a shape as possible. Period.
  
  
• I have purchased a journal to keep notes, prescriptions, etc, anything else I can do to prepare?
  That should be fine. There will be lots of paperwork so get a couple binders with tabs. A three hole punch will be clunking along all the time. Staying organized with the paperwork is a big deal. Calendar is obvious to keep track of all the appointments. Use pencil as they are subject to change.
  
  
• how will this affect my ability to meet with others (church, civic group responsibilities, meeting with friends, etc.).
  This all depends on how you feel. Make reasonable effort to maintain your current routine but do not think twice and surrender when your body says you need to sleep or rest.

 

• As both my wife and I are retired, this will become my full time job but I think diversions will be important, yes or no?
  Not sure what can be more of a diversion than planning and going through cancer treatment and recoverying your heath. Between this new diversion and your current routine you won't have any time to pick up a new sport or take that trip to Vegas.
  
  You are doing great so far, hang in there, keep your eyes and ears open, be prepared, get educated primarily to ensure you do not get "blindsided" or suprised as so often happens.
  
  Don

 

phrannie51 said:

Asking questions about

about subject matter we're not familiar with is tough.  I took both of my sisters with me, and my little sis recorded both the Oncologist and the RO....I had a lot more questions once things started.  I found that my Oncologist was a very newsy guy, and my appointment with him lasted nearly 3 hours....he listed every possible side effect, assured me that I was going to be ok....and that they'd take very good care of me....they did.  The RO was possitively glib.....saying the only drawback with rads would be a bad sunburn....Ah....but my Onc took such care of me, they pretty much took over all the side effects from the rads, too.  Looking back the things I needed to know most were.....how will we control nausea.....neck burns, and what about this feeding tube business.  I had a tube placed before treatment, but when the time came to use it....nobody had told me diddly squat HOW to use it.

As long as you feel like doing things, do them!  As time passes, you'll find your energy draining, but still it's good to get out a little....take a walk, go for a drive.....but believe your body when it tells you to rest.  For now eat anything and everything you want...go for your favorites while you can still taste them.....I ate dozens of cheeseburgers and had lots of Mexican food before treatment started....I don't like them much anymore so I'm glad I ate them while they were my favorites .

Pain is relative to each and every person.....plus everybody is different in how their bodies are affected by treatment.  I basically skated through rads and the first 3 chemo's (I had large dose Cisplatin every 3 weeks, and 35 rads)....my throat never got very sore, and my neck skin held up till about the 4th week, but still it never got like Matts or Tim's.  Because I had NPC, I had adjuvent chemo....that was 3 more large dose Cisplatins with added 5FU after rads were over.....that's when things got dicey for me....5FU gave me hamburger mouth.....and I was totally dependent on the tube to eat or drink.  3 weeks after the last chemo tho, I was back to eating and drinking.  Your responsibility is to to keep your Drs. up to speed on how you feel.....if you're nauseated tell them, if your throat is highly painful, let them know......if your neck starts peeling and cracking they will help you get through that.  There are a lot of meds out there to make this experience less painful.  One thing they did make me stop taking was anti-oxidents.....no Vit E, fishoil, etc.....I quit taking all supplements during treatment.

While you are getting chemo they will be testing your blood often.....they are looking for lowered red blood cells, white blood cells, platlets, hemogloblin......these are what says how social you can be and what all you can do (of course, how you feel will also dictate what your social life might be like).  Lowered white cells means your immune system is down.....stay away from sick people and places where sick people go....like the grocery store, work, etc.  Lowered red cells will make you feel weak, and tired.....lowered platlets means they don't want you falling your head, or doing sword tricks because your clotting abilities are compromised.

My main caretaker was my husband.....he had no clue about how to caretake anything.....but he learned and was great at it.  He pestered me to eat, and I ate (usually scrambled eggs, that's all he knows how to cook ).....he pestered me to sleep and I slept.....he took me to the Onc every single day to get my amafostine shot, then came back and took me to rads.....What the patient needs to remember is that your caretaker is going through this, too....and it's worse being a caretaker than it is being the patient.....Even on the days I had a hard time being grateful for anything, I drummed up gratitude for my husband's care and let him know.  I also made sure he did the things he likes to do.....he wasn't my maid, nor did I feel that he should be with me 24/7.....

You've been dropped into a foreign country, you didn't ask to go to...... where you don't know the language or the customs..... but you're going to find that you figure things out quickly.....the language will become familiar, and getting through the day by day will start to seem normal....and then poof, it's over and healing begins.  And as I said above.....diversions are important.....a walk, a drive, seeing friends.....take your mind off of cancer for a little while.....make plans for the future (a trip to somewhere you've always wanted to go).

You're going to get through this and come out the other side.....maybe a little abi-normal (that's John's (Skiffin) word)......but hey, you'll still be on this side of the dirt, and your love of life will be enhanced.

p 

 

Bob

Sorry that you had the need to find this forum but you will be glad you did. My approach was "take it as it comes and deal with it". Not everyone gets every side effect so it can be wasted worry. I didn't get the neck burn til post tx and mine turned dark and peeled but never broke open and never hurt. I also dodged a huge bullet with the mucus issues and never got nausea but took drugs to prevent. With that being said, it certainly wasn't a walk in the park. Worst thing for me was lip sores. Mid tx I slept about 20 hours out of every 24, forcing myself to get up to eat and take a brief walk. Week 5-6 post tx, I got all of my energy back plus some, likely from a needed 65 pound weight loss. My husband gained weight from everything I thought I wanted to eat but then didn't want or mostly couldn't eat.  

I had a Hohn catheter vs. a port. And I had a G-tube vs. a PEG. I found neither cumbersome. You may wish to ask your doctor about your options. 

As far as your wife, be certain she gets some "me time" for herself throughout this journey. My husband (retired) was awesome but one of my happy memories was the day my sisters picked him up and took him to the casino. It did both of us good. Your body will tell you what you can do when it comes to outtings....just take a bottle of water with you!

Prayers that your journey is an easy one.

Candi in STL 

faithful65 said:

Thank you plus a question regarding Transoral Endoscopic Surgery

Candi,  Thanks to you as well as to Matt, dj, Keith, Don, and Phranie.  I am taking your advice and recommendations to heart.

My question is do you know of anyone who had their tonsil removed (aside from Keith who gave me some valuable information). 

John Hopkins is advocating surgery for early stage cancers of small size, and I think I qualify.  Transoral Endoscopic Surgery.  Website says: Many patients with smaller tumors in the mouth, throat and voice box may be candidates for tumor removal through the mouth (transoral).  This is a minimally invasive technique that avoids incisions through the neck or face. These procedures result in less swelling, less scarring and a lower risk of infection. It also helps preserve function and appearance. Patients may be able to eat right after surgery, and even if their voice is affected it may be still be functional.   Our team has much experience in transoral surgery using both the laser and the surgical robot (transoral robotic surgery or TORS).  Johns Hopkins was the first center in Maryland to begin TORS and remains a leader in this area.

http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/head_neck/cancers/treatment.html

Grateful for all your help and information

Bob

 

Bob

Many of us had our tonsils removed after the discovery of the tumor. I had my tonsils removed and the tumor was just over 2 cm. I was Stage 2 with two lymph node involvement on the right side. My tonsils were removed and then they pulled my teeth because they thought I would have a lot of probs with them after radiation. My tonsil removal was not done with any robotic accessory, but by the very skilled had of my ENT and she did a whale of a job and got the entire tumor out with clear margins. Following that was still a diffucult treatment of Cisplatin and radiation for 7 weeks.

 

God bless,

Jamie

spector551 said:

Bob

Many of us had our tonsils removed after the discovery of the tumor. I had my tonsils removed and the tumor was just over 2 cm. I was Stage 2 with two lymph node involvement on the right side. My tonsils were removed and then they pulled my teeth because they thought I would have a lot of probs with them after radiation. My tonsil removal was not done with any robotic accessory, but by the very skilled had of my ENT and she did a whale of a job and got the entire tumor out with clear margins. Following that was still a diffucult treatment of Cisplatin and radiation for 7 weeks.

 

God bless,

Jamie

Bob prayers out to you..I was

Bob prayers out to you..I was diagnosed with stage 3 squamous cell carcinoma in my lymph nodes in my neck on 18 Dec.. I have a pet scan next week and surgery the following week and then 7 weeks of radiation and chemo