It is with sadness I join this community, not for myself but for what I fear this place and my treatment will mean to my family.
44 years old, generally healthy, diagnosed with SCC via fine needle aspiration about a month ago. I'm doing the due diligence and have been confirmed as T2N2cMx and I have never been so afraid. I smoked for years, but my ENT is pretty sure it's HPV (hopefully he confirms that tomorrow -- he's been out of town since doing my biopsy on 3/3 because I've heard that increases my prognosis a bit).
Currently they say I am inoperable at the base of the tongue and in the neck so we're going for chemo/radiation starting on 3/31. 33 treatments with 3 chemo across 6.6 weeks. I don't really know what else to say, other than I hope my oncologist's prognosis of 60-70% cure is accurate.
I don't know what else to add. I hate that I'm so wrapped up on myself now, which is why I decided to come here. At least I can whine anonymously because I don't think I can take hurting my wife and kids any more than this already has. I hope I'm strong enough to take the treatment and win this fight.
Anyway, I tried to emulate the signature block but I probably got it wrong
.
So, howdy! Having read through some of these posts, I can only say that I hope I'm as strong as so many of you who so sadly came before me have been.
Cheers
The Hellion
Hi there, I'm sorry you're eligible for this club, but so glad you found us. Here you can whine, commiserate and get great advice from those who have gone before. Please don't doubt your strength -- you'll find resources you'd never guess within yourself, your family and your support network.
Your signature is great, and your screen name's even better. A guy who dubs himself "The Hellion" is up to the battle ahead. Now I wish I'd named myself "The Fury" or "The Wraith."
Lynn
Hello Hellion. Yes, this is indeed a scary time for you. It's scary for all us especially when we are first diagnosed.
Most cancers at the base of the tongue are HPV positive and you are correct , that does give you a survival advantage as these cancers are supposed to respond very well to chemo and radiation . So your treatment plan sounds correct and you will find many here who have gone this exact same path.
This treatment is no walk in the park and can be brutal at times. Others who have been there will come along soon with advice for you.
My advice is to stay strong and get your fighting hat on. I'm of the opinion that attitude makes a difference. Tell yourself that you can do this and that you will survive. Don't worry about statistics, they don't apply to you. You will either be a survivor, or not. At 44 you are young and I'm guessing healthy so that gives you better odds too. Your Family will be your greatest support, especially your Wife and children. For now, take it 1 day at a time.
Christine will be along shortly to give you advice on nutrition and eating lots.
Read these forums. They gave me lots of strength and excellent advice.
You will get through this,
Tammy
Welcome to OCF! So sorry you have a need to join our group but Im very glad you found us so we can help you. We have been where you are and know how hard it is in the beginning. The shock of being diagnosed with SCC OC can take a while to sink in.
Right now you need to focus on what you have within your control.... your intake. From now until at least one year after you finish your treatments your daily minimums should be 2500 calories and 48+ oz of water. If you can get more in thats even better, especially with the water. Since you havent started treatments yet, you should be eating all your favorite foods and not worry yourself with weight gain. You do not want to go into this with cravings. Your sense of taste and swallowing capabilities probably will be compromised for several weeks, maybe months, so eat now.
Get a complete blood test including thyroid and testosterone levels. Get to the dentist for a good check up including having flouride trays made. This takes a while so best to get moving on it now.
You will have all kinds of appointments. Many people will offer to help. Dont turn down anyone! Now is not the time to be too proud to take help. People really do want to help and they arent sure what they can do. Take down their contact info and tell them you will let them know when the time comes what can be done. The more helpers you have, the better. This will make things so much easier on you and your family. There are a million small things that can turn into a huge help like picking up prescriptions, doing some laundry, taking the kids to the movies or out for the afternoon, even walking the dog or cooking a meal for the family will be helpful.
Best wishes with everything!
Hi,
Speaking from the wife's viewpoint...she is as scared if not more scared than you. I know you want to be here to have support, but be sure not to tune her out in order to not hurt her, because that hurts more. You are in this together and she needs to see your humor, strength and fears as well.
You sound as though you have a great sense of humor and a fighting spirit and I will tell you from watching my Kevin that that is half the battle. you can see from my signature that we were also BOT. We are about 2.5 years out and all is well so far. We live an almost normal life now. Worry comes around scan time, but we have tried to move toward normal for our kids more than anything.
Stay in touch and ask anything. Keep a notebook handy and write down questions as you think of them. Keep something by your bed as well for those late night "I wonders".
Welcome to the family. I would encourage your wife to join the site as well. She can always personal message some of us care givers so she doesn't feel so alone.
You got this. The fear gets better once tx starts because you are actually doing something instead of waiting.
Blessings,
Kathy
Hellion,
Sorry you are here. I'm impressed with the high probability you were given, even though it is just a statistical number based on historical data. I, too, was Stage IV Base of Tongue, T2N2bM0. I was given 25%-28% and surgery was suggested although we saved it in case I had a recurrence. I was diagnosed with 3 people almost the same day and I was the only one of us that made it. That was a bit nerve wracking.
I am a bit confused why they are saying inoperable. Are you being treated at a major cancer center?
Anyway, once you get last the initial shock, things will settle into a routine. Spend some time perusing the entire site so you have some idea what you are facing. Keep an updated To Do list with all the tasks you will have to do and, as ChristineB suggests, don't hesitate delegating to others. It will make it easier for you.
Best wishes on your upcoming treatment. Many have traveled the road ahead of you and will help you through this.
Glad you found us, sorry you are here. I will add to the the great advice you have already received. The treatment can be effective but also brutal for some. It was for me. You will be very busy for the next few week, if not months. Focus on things that can be done now to make the treatment easier. I am thinking of household stuff: cars, yard, garage work, that kind of stuff. As a dad you have lots of stuff you do everyday to keep the house working. You will not feel so good and doing these type of choures will become difficult. Get as much of this work done now. Don't be too proud to ask for help. You will need it. Keep you chin up, you will get thru this.
Hi, Hellion
great screen name which (I hope)indicates your fighting spirit. I attended many doctor's appointments with my husband - carried a notebook and list of questions. It would have driven me nuts not knowing. If your wife is interested in attending with you, please do not discourage her from being part of the process. It is hard to hear the facts, but it is worse to imagine them.
Various studies slice and dice the data in assorted ways. At least one of those I have seen shows a survival advantage to being married! If you have a partner who is able to help you maintain nutrition and hydration - and make it through treatments with a minimum of interrupts - that is very important. I felt helpless and useless at my husband's diagnosis - but learning that I could be of help to him helped me get through the battle.
Best wishes to you and your family.
Maria
Hi Hellion. I too love the name and the great spirit it implies. While your cancer may be HPV positive, I am sure you know how tough smoking is on the oral cavity and the rest of your body. While you didn't specifically say, I assume you have quit.
Have you thought about getting a second opinion re surgery? If I were you I think that is what I would do. All of the previous posters have given great info - pay special attention to Christine's advice re nutrition. I fully believe that, in addition to mt OCF family and our FABULOUS medical system, I am still here today because I am a good eater and was able to physically withstand treatments.
My contributions to you will likely be more about the emotions you will deal with - more about the fear than the mechanics of treatment. There are so many here with much more expertise. First of all, yes the fear is ABSOLUTELY normal. 2ndly - Do Not Blame yourself. 3rdly, worry is like a rocking chair - it gives you something to do but doesn't get you anywhere. Rely on you friends. Take them up on those innocuous " if there is anything we can do" comments. Get them to shovel snow, or run a lawn mower, do some grocery shopping, provide a meal for the freezer (tell them of any sensitivities) ow whatever. People really DO want to help - they just feel helpless. Now is the time to lean on family and friends. I can guarantee that you will be surprised at who steps up. Be careful not to judge your friends at this time. They all handle their fear differently - they love you and some will be frozen in their tracks. Don't be disappointed. We are all different.
Hugs
Donna
Welcome to the family Hellion. Your username made some of us jealous, wishing we had thought of it first. Such is the nature of human vanity as Donna says in the previous post.
Notice that within a day or two of joining you have quite a few responses to your first post. That's how this group is, supportive and not shy about it.
I don't have any technical advice to give you, many others are more experienced than I. But, what I can tell you is, while treatment can be brutal and painful, it isn't always so. From reading the forum I was convinced my treatment would be horrible, painful, every bad adjective I could imagine, and maybe worse. But, it didn't turn out that way. Quite the opposite in fact. Overall, it wasn't bad at all. Yes, I had some mouth and throat pain but that didn't really show up until the last week of treatment. Will you be one of the lucky who escape the worst parts of it, I don't know. Do read what others say they went through, but don't automatically assume yours will be as bad.
All the above was about the physical side of the disease and it's treatment. The rest of this is about the mental side of it. Cancer is a brutal assault on both your body and your psyche. The mental side is at least as important and maybe moreso than the physical. If your basic nature is to be a worrier or a fretter over what might happen instead of what is happening, then this journey will be a little more difficult for you. You will have a million thoughts over the next few months, some good some bad. The real test will be with what you do with the bad thoughts, how rapidly you analyze them, dismiss them and move on with your life in a positive manner, ie how little time you spend on the dark side. Worrying about things won't change the result at all, it just makes you miserable in the process. It will be what it will be is a phrase you will hear over and over from this group.
One of our members, username Bart taught me a phrase early on in my journey ... don't attach to outcomes. It means don't make an emotional investment in the outcome of anything. Rather than worrying that next CT scan result will show the tumor is getting larger or hoping strongly it gets smaller, leave the emotion out of it and just wait for the result to arrive. If you got your hopes up and then the result comes in negative your emotional investment in the outcome greatly increases your chance of becoming depressed over the bad result. A much healthier way to approach the result is to say, okay we had a bad result, what do I need to do next to counter it. Thinking that way keeps you focused on the positives of beating the demon instead of the negatives of losing out to it. Being able to stay positive in the face of bad news is critical to your long term result.
You don't know this yet, but Bart has had several cancer recurrences over the last 10 or 20 years. Yet he maintains an extremely positive attitude about the continuing battle. Imagine the psychological toll had he not remained positive. That's the real message here. Do a search on Bart and get a dose of his positive nature for yourself.
I've said enough, keep your chin up, we will help you with your journey every step of the way.
Tony
Welcome Hellion,
I'm going to speak frankly and not pull any punches, and I want to assure you up front that I mean it only to be helpful. The unvarnished truth is not always pretty, but it has the virtue of always being the truth anyway.
Let's talk about fear for a moment. You are in a situation where the worst that can happen is that you die. Well, that's nothing to fear because it's going to happen anyway. In fact, everyone on the planet is going to die, and very few know when. So that's nothing to fear.
What is making you fearful is, as you said, your concern about your family, should you die sooner, rather than later. This too, is always possible, and it's always possible for every one of us who have life.
So that not anything to fear either, but it is something to plan and prepare for, and that is something for you to start right now, getting your affairs organized and in order so that your survivors will not have that to deal with. It's likely that they won't have to because you are going to get through this, but it is prudent to do this anyway.
Probably the next thing to work on is Attitude. Your attitude towards this situation will color the reaction and attitudes of the other members of your family.
The title of this thread suggests to me that you may be in the grip of the "woe is me's" already. This will frighten your kids (and your spouse); and worse, will lead to paralysis of your will; so you can't afford to go there.
Shake that off now and replace it with "This is very survivable and I am going to be one of those who do!" Avoid negativity, it actually does program you to expect negative results and in addition, actually does reduce your chances. Stress does this also, so avoid it where possible.
By the way, this meta-programming aspect of attitude will work in your favor and will produce positive results if you do it. Note well, I did not say "try it," because deciding to "try something" as opposed to just doing it, is a recipe for failure. Put your mind to it and do it.
Your chances of surviving this are very good, new treatments are literally appearing daily, and the standard treatments already offer significant success. Your chances of survival are also greatly enhanced by adopting a realistic and positive attitude.
Look at your diagnosis as simply the world's loudest wake-up call. Life exists in this moment, the previous one is gone forever; the next one is not guaranteed to even arrive, and I'm not talking about cancer patients here, but about each one of us on this planet.
Good luck to you and your family, you will get through this!
Bart
Mamacita,
I'm sorry I'm eligible, too, but I imagine we all are
. I plan on having the strength, but I know I'll be happy to have support as well. Thank you for the reply and the kind words.
As for the user name -- well, I've been a Hellion my whole life -- maybe it finally pays off. No one, not even Cancer, wants to deal with a riled up Hellion!
The Hellion
Grrrr this isn't working. I'll try a new one
I don't know why, but every post I put up comes up blank when I post it. I have many responses to your encouraging words, but i can't seem to post them! Grrrrrrr!
Tammy,
I am certainly hoping that my treatment plan is as good as can be and I sure hope it works! I know already that I'm in for a rough road. My oncologist certainly didn't pull any punches regarding the "wringer" but he did assure me it's all done with a cure in mind and that a good attitude matters. One thing I hope I maintain is my sense of humor (which is dark, but mine nonetheless) and that it helps me get through the roughest patches. Everyone says that statistics don't matter and I actually believe they're right. This one is my fight, and the only statistic for me is win or lose (and I do NOT lose with a great deal of dignity).
I'm so very fortunate to have such a wonderful support network, starting with my wife and working through several key friends, and I appreciate your welcome and kind words as well.
Thanks for the vote of confident!!
The Hellion
Christine,
Thank you so much for the advice. I'm planning on eating whatever I can whenever I can while I can. With a little luck, maybe I can actually at least drink a bit all the way through, even if I'm on the PEG for the last couple of weeks (which is what I'm told will probably happen). One of the things I'm very afraid of is losing the ability (muscular memory) to swallow, so I plan to try and swallow a few times every day. Is that actually possible? Some people seem to indicate that it isn't.
I did my blood work and dental -- 10 years without seeing a dentist and no work needed other than a good cleaning -- my dentist actually believes that with good daily care (flouride treatments, cleaning 4x daily, etc.) that I may avoid any major dental problems, so that's good. Had the flouride trays done last week.
More appointments coming -- chemo consult Thursday and the PEG install today ahead of treatments staring on the 31st. Hoping I can work throughout, but we'll see. Given the drive to the facility, I'm definitely on 1/2 days during treatment -- travel time takes what it takes.
Hoping I can take advantage of the good weather my first two weeks and still ride my motorcycle -- we'll see how the skin feels. I'm probably hopelessly optimistic, but hey, what do I have to lose by hoping?
Thanks for the advice!!
The Hellion
Kathy,
My wife has already been amazing. She's thrown herself into making this as good as it can be. She bought me a recliner to sleep in on the bad days and is having my artist daughter rig up a "crown" to go with what I'm calling my "caner trhone" -- it really is an ugly ****ing chair. She's telling all of the worst jokes (which I actually enjoy -- I refuse to be cowed into being "sensitive" about this) and she's doing more reading and research than I am to prepare us for the treatments. With the HPV diagnosis, she jumped on board with what a friend of mine is calling "the coolest cancer your can get if you have to have cancer" and telling everyone that it means I'm incredibly accomplished at certain things, and I now have the diagnosis to prove it. Hope that's not too crass for the forum -- it just makes me laugh every time she says it.
As you can guess, I'm not exactly reserved, not exactly appropriate and most certainly not above taking cheap shots at myself of this stupid disease. We have done some crying and worrying and yelling at the gods of fate about the unfairness of it all, but we're going to do everything we can to maintain the best possible attitude for as long as possible, and she's going to be the best help I can have doing so.
I'll ask if she wants to check in. Meanwhile, I appreciate your kind words and advice. With luck, we'll learn not to worry and just fight the fight once we get started.
Thank you!!
The Hellion
Uptown,
I don't know why I got such good numbers. Maybe they're just trying to make me feel better -- I was worried abut that for a few days, but I've decided it doesn't really matter anyway -- I'm not a number, I'm a free man and my blood is my own, now (to quote the mighty Iron Maiden \"/). I'm being treated by one of the highest rated centers in my state, they are saying inoperable because they don't feel the surgery significanly improves my chances relative to my quality of life, at least before doing the radiation.
For right now, I'll take their number, I'll take their advice -- my oncologist seems smart, reasonable and confident. He's warned me he's going to put me through the wringer, but he feels good about my chances for "cure". Imay have no reason to believe him, but I have no reasone to NOT believe him either
. He also believes humor is my best weapon in this, so at least we see eye to eye on that. I just hope he can handle my rather dark sense of humor -- I'm not exactly a sensitive Sally, at least when it comes to myself.
Thanks for the advice and good wishes!
The Hellion
snip [quote=TheHellion]
.....With the HPV diagnosis, she jumped on board with what a friend of mine is calling "the coolest cancer your can get if you have to have cancer" and telling everyone that it means I'm incredibly accomplished at certain things, and I now have the diagnosis to prove it. Hope that's not too crass for the forum -- it just makes me laugh every time she says it.[/quote]
It makes me laugh too, and I thank her for it!
Hockeydad,
Getting caught up on messages bit by bit. I'm already organizing ways to get out of doing household stuff, er, I mean getting ahead of household stuff -- thanks for the advice and well wishes!!
The Hellion
Maria,
Thanks for the advice -- my wife is already attending almost everything -- sooner or later she'll have to actually go back to work
and then I'll be all bored and lonely at these appointments -- stupid work, stupid "making a living"
Thanks for the well-wishes!
Donna,
Hellion by name, Hellion by nature. I was born to fight -- this is just a different target. At least this one can't put me in lock-up or leave me in a parking lot that smells like vomit and urine! Yep, already quit smoking. Never smoked that much anyway, so it wasn't really that difficult, aside from using it as an excuse to get away from my desk for a few minutes.
I'm a pretty good eater now (:)) and I hope to keep it that way throughout -- one way or another!
I'm definitley going to recruit my friends for help -- I've never had a better excuse to let other people work on my behalf (just kidding, of course).
Thanks!!
The Hellion
Tony,
I am really hopeful that my body will react less violently to radiation than some. I know it's unlikely, but one never knows. I'm holding out hope that I get super-powers. It has to happen eventually. Obviously, the Wolverine's would be pretty handy right about now.
In general, despite my initial post, I'm pretty positive. I'm scared, I'm sad, I'm worried about the pain and side-effects, but i'm not much of a quitter and I really have nothing to lose with this -- I know the outcome if I lose, so the onlyl real option is winning.
That said, I expect I'll have some pretty bad days. I think that's natural and probably quite fair. I have lived a life full of bad days, though, and I'm pretty sure I'll get through them. One thing I live for is to spit back in the face of adversity.
Thanks for the advice and well wishes, and importantly, the promise of support. I like the anonymoty of this medium -- it makes being a whiner just a little bit easier. Since I have no intention of accepting sympathy from anyone I know in person (it embarrasses me) I'll come here to whine. Since I know my sense of humor puts some of my mates off, I'll come here to tell my sick jokes (don't worry, I only make sick jokes about myself). When you guys tire of me, you can always put me on ignore!
The Hellion
Bart,
I appreciate your blunt approach -- it fits my style and I expect we will get on famously as a result.
Don't mistake my opening for weakness. I'm afraid -- this is going to be tough and painful for me an my family. I don't want to die now, but I know it's coming -- someday -- just not today. At least I get a chance to have some say in when.
When I question my strength, it's because I know this is going to hurt and I've never done anything like this before. As I've lived most of my life day-by-day anyway, I'll just have to do this as well. Not looking forward, and with no previous experience, I don't know how much I can take. I figure I'll have to take whatever they have to give, though, since them's the breaks.
I have no intention of losing this fight -- I just don't see it happening. I'm feeling pretty sorry for myself -- I think this is spectacularly unfair, all things being equal -- but I'm no fool. Life isn't fair and a lot of people have it a lot worse than me. I have a couple of life mottos, though -- and I've held them in the salt of my blood for most of my adult life:
"Crying out in fury to the gods of fate, come on and catch me if you can" -- OK, so don't throw down a wager to the gods -- got it.
The other one, though:
"Let's get one thing straight, I'll choose my fate and it's got nothing to do with you. "
Silly lyric from Judas Priest, but I apply it to all of my obstacles -- this one is no exception.
Thanks for the encouragement, though. I think we all need it, no matter how stubborn we are (and I'm pretty stubborn). I expect to have good days and bad days, good moods and bad moods. I love to fght, though, or at least, I hate to lose. I plan on winning this one, too.
The Hellion
Hellion,
Hou've definitely got the right spirit; and frankly, it's a delight to see it in action! You're also a good writer with a great sense of humor, I hope to see a lot more from you as you go through this!
Let me add, I don't see a scintilla of weakness in you, and that attitude will serve you very well throughout this rough patch of the pavement on the road of life.
Warmest regards,
Bart
I agree....you have it kicked part way already!!!
Hellion I found this forum after Googling T2N2B and found this thread. I read your introduction and it was startling how similar my story is. Same age, same stage, diagnosed at the same time. My radiation and chemo starts at the end of March. Its all a bit overwhelming, including the flood of support. Anyway without hijacking your intro thread too much, I just wanted to thank you for telling your story here, its good to know we are not alone.
Cheers
Dave (OzMojo)
Hellion...
I had the same SCC diagnosed last summer. Sage 4. 37 radiation treatment 7 Chemno. Could only do 5 chemo as I got so sick we had to back off. Lost 30 lbs in 3 weeks and had to have a PEG tube. That is the tough news. The good news is i was back to work within 2 weeks afetr I finished by raditation treatments and immediatelyafter that , i got the tube removed. 6 months cancer free now.
You keep positive and go through the treatments as it will be very difficult and you will get very sick, but you will get better and you can beat this too!
John H.
Thanks, Bart! I hope this is the right spirit -- maybe this is the one place where belligerent stubbornness is actually of value!
The Hellion
OzMojo,
I read your nitro -- sounds like we are indeed quite similar!
Tell you what, I start on the 31st with Cisplatin and my first radiation (70 gy). Three total "big bag" chemo and 7 weeks if radiation. Let's keep each other posted -- it will be interesting to have a comfortable "partner in crime".
Thanks for sharing your story as we'll -- let's beat this thing together on opposite sides of the globe!!
The Hellion
John,
Thanks for the encouragement. Not going to lie, the chemo scares me a bit - everyone says it ****s you right up. Still, it all leads to the cure, so I guess I'll have to do it, too.
Thanks for the encouragement!
The Hellion
Update - had The PEG installed on 3/19. Hurts like hell still, but I'm hopeful tomorrow feels OK. 3 days of feeling like I got punched in the gut seems kind of lame
.
Chemo appointment scared the hell out of me -- Cisplatin sounds terrible and I get three big bags, once every three weeks. I'm really hoping I don't get severe permanent hearing loss -- I love music so much and it really is a constant companion I would mss.
I think I'll do treatment updates in that section, assuming I do them. I'm notorious for starting things and then kind of fading away and my writing could well fall into that category.
Meanwhile, thank you to everyone that provided words of encouragement and relayed their experiences. Knowing so many of you did it and survived so actually quite helpful, as is knowing there is so much great stored wisdom regarding treatment and side effects.
Thank you all,
The Hellion
No doubt about, both the peg tube and cisplatin suck. My MO said 10% have hearing issues with cisplatin. Form what I see on this forum, watch out for ringing in your ears. It also leads to constipation. That's about 99.9% of the time. Make sure you talk to the docs about that. It also made me very sick and stupid. I received the large doses on Monday and the full brunt of hit hit Wed night. Driving was difficult for me tues-thurs. On the second dose I was unable to drive that week. Its kind of a mixed bag, some people are fine, others find it extremely disabling, and some have to switch to weekly doses or to carboplatin do to severe reactions.
Staying up on the meds might become difficult. I had a hard time remembering what I took and when. I resorted to a log sheet. I wrote down what I took and when. I even started to write done feedings and quantities.
Peg tube is also a pain. My advice is put a little water thru it several times a day to keep it clean and rotate it 1/4 turn two times a day. Don't use it for feeding until you have to. Eat by mouth as long as you can. Eating by far is the most difficult part of the treatment. I was never hungery. I also found food repulsive. So I ate when the clock told me to eat. I did not get hungry for 5 months after treatment.
Stay with us thru treatment, you will be glad you did.
The numbers, and information, have changed the past few years with HPV positive vs. HPV negative oropharyngeal cancer, even since 2009 when I was diagnosed. Anyway, good luck with everything.
Hellion, the Cisplatin/Radiation combo is not an awful lot of fun, and that's a fact. Hockeydad nailed it in his description. You won't enjoy it, but it won't be the end of the world either. Three months post treatment and you will be a new man with all of this behind you. I suspect that you'll find it a lot like an extended bout of the flu; you may even find yourself going from both ends, but as I said, it won't be as bad as you anticipate, and it will be over before you know it.
Meanwhile, here are some things you MUST be alert for:
Loss of hearing: I've lost about 50% of what I started with. This is a permanent loss, so do not hesitate to notify your oncologists (both RO and MO) immediately if you notice tinnitus. The Cisplatin kills the cillia in the inner ear whose function is to translate the motion of the fluid in the cochlea into nerve signals that produce sound when processed in the brain. From my own experience, I think most chemo agents cause this kind of neuropathy to one degree or another, so be vigilant if your hearing is important to you.
Constipation: It was a MAJOR problem for me, but I've had a problem keeping my bowels moved since I got gut-shot back in '67. The Cisplatin aggravated an existing problem with me, and I've had to take two Ducolax tablets AND a capful of Miralax power (ethylene glycol powder) DAILY since '09.
Constipation also adds to the importance of adequate hydration (and all chemos that I've had - Cisplatin, carboplatin, Taxol, Taxetere and Xeloda) have caused severe constipation. Adequate hydration will go a long way to reducing this problem.
Finger and toe tip neuropathy: Be acutely aware of the onset of the feeling that your fingers or toes are "falling asleep," the classic sign of the onset of neuropathy there. If you don't catch and report it immediately, you are apt to have permanent loss here as well.
And it may not be a tingling sensation, in my case, I started noticing a feeling like the inner lining of my gym shoe had come loose and was bunching up under the ball of my foot, and I ignored it. Bad move.
But the good news is that the anticipation is always worse than the event.
I have a good deal of neuropathy that is permanent, but frankly, it's really nothing but a minor aggravation and is easily ignored.
Be alert, but not paranoid about this.
Good luck, campadre,
Bart
Thanks for the advice, hockey dad and Bart! Not gonna lie, the anticipation scares me badly and the fear of hearing loss is enormous.m I think I can handle almost anything but permanent, severe hearing loss.
I know the pain is going to be pretty heavy, but I plan to find some way to eat (or at least liquid food) throughout. Just going to have to tough this one out -- sounds like you've toughed out worse in your day, Bart, so I'll hang in there. I'm glad I "know" people who have been on the road before me and made this work -- it gives me confidence I'll get through this.
Thanks fellas, I'll check in when I get going!
Cheers,
The Hellion
The same goes to watch out for any vision changes, and to tell your doctor if they occur. Baseline tests before treatment like vision, hearing,TSH, testosteroe, may be beneficial, in addition to other standard testing, to monitor during and after treatment, some which are done anyway. but not all are.
Also good to know. Thank you, PaulB!
The Hellion
Kevin also had an OSHA threshold change in his left ear. He works on the North Slope in Alaska and they have annual hearing tests because of the noise in the shop. It was enough of a loss to be considered OSHA recordable. Thank goodness it is only his left ear as I do find myself having to repeat often. Watch for the ringing. They can always switch to Carboplatin if they deem that acceptable.
I wanted to tell you and Oz that we finished tx at the end of October and he was back to work in frigid Alaska January 5th. It was terrifying for me to let him go, but he is a very determined guy, like the 2 of you, and he made it work. He usually does 3 week hitches, but the first one back he only did 2 weeks. That's 14 days in a row, 12 hour days. Needless to say he was whipped when he got home but ready to go again 3 weeks later and has not missed a beat since.
You guys got this. By summer you will be done!!
Kathy
Change to the change to the changed changes. I'm starting Thursday of this week. My radiologist has the plan designed and set, so they called chemo and Thursday is day 1. I'll get my rad then I'll go across the street for my cisplatin.
This stupid PEG is creeping me out big time, so I am going to keep hydrated/fed orally. Recently bought a blender that can probably make smoothies out of granite and diamonds, so....as of right now, I WILL find a way to get through this without this Frankensteinesque apparatus.
I'm scared and worried-- the pain, nausea, side effects, etc, but I get to keep my tongue and larynx ( at least until they see if this cured me ) and I've seen people who have it worse than me soldier on, so I shall overcome. Fear, as the Bene Gesserit say, is the mind killer. More importantly, I think it's perfectly reasonable to be apprehensive -- it's sure as hell not going to stop me. I just need to remember that this is temporary, it's an inconvenience, but my team of doctors (f*** yeah, I have a TEAM of people looking after me -- when I were an urchin living under a bridge I never thought I'd have a whole ****ing TEAM of people dedicated to taking care of me) are all thinking CURE. No way I'm going to argue with THAT!
My wife is confident we walk away from this. Changed yes, but we walk away. I think so, too. Now if I can just learn to sleep comfortably with this idiotic tube sticking out of me, I'd be golden!
If there is one thing I've (re )learned over the past month, it's that you take what you're given and if you don't like it, you do your best to punch it in the face and that's what my team is going to do to this cancer. I just wish I was the one pulling the trigger, because I'm not used to letting other people fight my fights for me.
Diagnosis to treatment was a journey - one full of fear and uncertainty, pain and no small amount of sadness. My wife and I have been walking that path, looking for this path. Now we have found it, and for the first time we've let others set our course and that's difficult for us. Now we'll walk it, though -- with trust and what passes among us for faith and, most importantly, together.
A new journey, a new life starts Thursday.
Kind of reminds me of a song:
I always drive like a madman,
But you'll soon get used to that
I believe if you're moving fast enough, then
You don't ever have to watch your back
Or if you prefer,
I'm heading north, I'm heading home doing 125
Close my eyes and count to ten -- haha, I'm still alive
Perfect, perfect tunnel vision
Razor sharp and racing, racing
These moments, immortal,
No one touches this
Cheers,
The Hellion
Great attitude! Control and knowledge are powerful tools to manage your journey through treatment and recovery. I despised the idea of PEG did not get one in and survived without it. My own belief is far too many just go and get a PEG without even working hard to consume orally.
The team approach is powerful and confidence building. When I read up about the team approach and learned about tumor board I immediately asked to join my oncologist who was presenting my case. It was an incredibly reassuring experience to hear a dozen or more doctors all focused on the specifics of your case, reviewing and discussing the details, hearing the different opinions, then a consensus on the recommended plan. I never lost any sleep wondering or second guessing any of those diagnosis or treatment decisions.
Yes, I agree, great attitude, one that will do you well throughout your treatment.
I was lucky enough to not need a PEG tube. Having about 30 extra pounds at the start of rads I had plenty of extra weight to lose. And I lost all of it (plus 10 pounds more after treatment). I say this because every week when I saw the dietitian she would fuss at me for continued weight loss and then remind me that when you get to 10% weight loss they give you a PEG tube. I reached 10% (23.2 pounds) on my last day of treatment, so I dodged the tube.
You may already feel this, but the reason I had so much weight loss was not oral pain, it was complete loss of appetite. I had to force down 5 Ensures per day (and the RO wanted me to drink 7). That loss of appetite thing is a biggie, I could easily go a whole day eating nothing. I didn't ever do that, but there were more than one day I didn't eat much. Weight loss under those conditions is easy, too easy.
I don't know where you are in treatment, but if you're early in that phase, try to choke down some more food, because you won't want too later.
take care, keep fighting, but please, driving down 125 ... keep your eyes OPEN. (LOL).
Tony
Day one after Cisplatin and I'm feeling pretty wrecked. The nausea is pretty incredible as is the acid reflux created by, I suspect, the steroids they're using for anti-nausea. Two rads in, no major issues ther (yet) so that's good.
Tomorrow the Cisplatin hangover is supposed to be at its worst, or maybe day 3. One way or another, I will need to eat tomorrow. Barely ate today but drank probably about 60 oz of water and ginger ale. This nausea really sucks.
Hanging touh but hating how I feel, I'm going to try and get some more sleep and hope for the best in the morning. Maybe I'll get my nausea out of cycle and tomorrow or Sunday will be better!
Gotta say, giving cancer the beat down is not a fault free process. I think I might switch careers to chemo research -- there has got to be a better way!
Anyone have any anti-nausea recommendations? I have been doing ginger ale and ginger candies in conjunction with antacids to control some of the most intense heartburn.
The problem, however, is that I feel like I can barely hold down the liquids, to say nothing of eating real food.
Any advice is appreciated -- about 600 calories today which is pathetic, but I held down the water so at least my dehydration risk is low.
The Hellion
I wish I had some advice for you, but I didn't do chemo. Still, you are "doing the dance" beautifully, whatever it takes to get through today, one hour at a time if necessary.
You are doing the best you can today, that's all anyone can ask for. 600 calories may not seem like much, but it's way better than zero, which is what you would likely have done if you had just given in and given up.
Keep fighting Hellion, we win this battle one day at a time. It may not happen tomorrow or this week, but it will get better.
Tony
Get some good anti-nausea meds like zofran and take it like clockwork for the next week. Dont get lulled into thinking its ok to skip a dose as playing catch up never quite works out how we want it to. Remember, everything that comes out must be put back in.
During treatments and the first year afterwards you must get a daily minimum of 2500 calories and 48-60 oz of water. I cant stress this enough. Your intake is what will make or break you in this. Its also one of the few things you have control over. As you continue, it will get progressively more difficult so get a hold of this now while you are just starting and it will be easier.
Drink your calories if you must, just get them in. Here is a recipe for something I used to make and drink when I went thru treatments. The list of foods might help you also, they mostly have a smoother texture and arent spicy which should be easier to tolerate.
Easy to Eat Food List (All measurements are estimates)
Giant High Calorie Choc-Peanut Butter Milkshake3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)
Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.
Best wishes!!!
Also see a nutrionist or designated healthcare professional at your cancer center, most comprehensive ones have one to go over your nutritional needs before, during and after treatment. Here is an USDA interactive guide that is used by healthcare professionals for your daily required intake based on sex, age, height, weight, activity. These could be more or less based on other medical conditions such as treatment, surgery, recovery, illness, but gives you an idea. Most will be surprised water requirement is more than what one would think, drink, and basically comes down to 1/2 ounce liquids for every pound of weight, plus more for activity, elevation, humidity, etc. Mine is about 128 ounces per day on this, and several other water calculators. They say 20% water may come come foods, but the rest by liquids. Protein intake may be higher, some say 1/2 gram per pound of weight, others one gram of protein per pound of weight per day. Water helps flush the Cisplatin from the kidneys.
http://fnic.nal.usda.gov/fnic/interactiveDRI/
Ditto what Paul and Christine said. Do NOT be shy about using all the resources available to you!
On of the things that frustrated my husband the most was not being able to do his normal tasks and activities at the usual level during treatment and recovery. Remember that your body is putting a lot of energy into dealing with the treatment itself. Your most important job is to complete the treatment as specified - especially to try to keep to the radiation treatment on schedule and get at least another one of the evil cisplatin bags under your belt. Your body hates it - but the cancer hates it worse!
Best wishes and keep posting. You are helping patients and caregivers undergoing treatment that are not comfortable posting themselves.
Maria
Hellion, I sent you a PM.
Also, I make protein shakes with one scoop of whey protein (I get Vanilla Ice Cream flavor and buy it in 5LB tubs) and one scoop of Carnation Breakfast Essentials.
HINT: I use 8 Oz Cold water in the blender. You can use milk; skim milk has more protein than whole milk, but I use water for less fat. This shake will give you 120 cal from the whey protein and 120 cal from the CBE. Add fruits and berries as you will, or add choc syrup. Be creative.
You will probably lose your sense of taste entirely (temporarily) so the flavor may well become moot.
I tried Boost VHC (500 cal) but it works against me. It makes me trap air in my gut, and the wakes me in the middle of the night with terrible dry heaves to clear the air. I can't belch, an artifact of the radiation to my throat in '09.
Hang in, brother, you'll get through this.
Bart
Bit better today. Feeling weak as a kitten and hating that, but hoping I can get some more food down today. That you so much for your advice and thoughts yesterday!
Hey Hellion,
I forgot to add that in making a blended shake, you get best results when you add the dry powdered ingredients after the blender had brought the liquid up to speed. This way, you will not get any lumps, but the other way almost guarantees that you will.
I keep a small bowl near the blender and measure all my dry ingredients into that. When the blender is up to speed, I rapidly pour the contents of the bowl into it and give it 4 seconds of blending.
More blending time also equals more air entrained in the shake, and that air could cause discomfort later.
Warm regards,
Bart
Glad to read you are feeling a little bit better today. The weakness is normal for most people so don't get discouraged by this. Nutrition and hydration are number one and two and affect your body by assisting in repair. Protein shakes like Bart mentioned are great ways to supplement. I used Jevity in the tube several times a day and always closed out the day with any shake. The ice cream was cooling and soothing to a radiated throat. Keep up your spirits and put on your warrior face. We will coach and try to encourage you on your journey.
Keep the water coming too. That acid indigestion feeling is exactly that. Toxic acid coursing through your systems. Keep it flushing out and it isn't as bad. Not eating turns the acid uglier.
That was amazing post Bart, thank you. That has been my thoughts this past week, off and on of course.
Kimberly