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This is It !!!!!!!

John oldtmr
Posts: 33
Joined: Jun 2009

Hey Everyone,

Got my PEG tube Mon. Got my second dose of Erbitux yesterday and had mapping done today. So tomorrow is it. "First round of radiation." Will be getting Amifostine shot before each treatment, so will be taking Benedryll and Compozine an hr. before the shot. Only 33 Rad treatments to go !!!! Wish me luck, I'll probably need it before this is over. I'm actually glad to get started. Get on a schedule.

They sent out a home health nurse yesterday to show us how to take care of the PEG. She nearly killed me. Didn't soak up the gauze under the button and I thought she tore a rib out. Ruth said I turned white as a sheet. It was sore all day yesterday. I cleaned it and redressed it today and it didn't hurt a bit. We called home health and told them not to come back out, that we wouldn't be needing them.

So wish me luck and thank you all on this site for all the info,it sure helped with all the docs and everyone 'Cause it helped me with what to expect and the questions to ask everyone.

So once more,
Thank You all VERY, VERY, Much !!!!!!!!!
John

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

John, I admire not just your hope and enthusiasm, but also your ability to put a smile on my face :).

YOU GO!

That said, I am not sure what "This is it!!!!!!!" means.

I would certainly not want to be the one to dissuade you from your optimism. I find it refreshing in this joint, frankly. But there are considerations, and you should prepare yourself for them.

To begin with, you have just started chemo, the Erbitux. I am not familiar with it firsthand, and hopefully it does not have nasty side effects. If it does, however, they may not show up first go-round.

Chemotherapy is a cumulative ordeal, and so you may experience effects down the road. I'm just saying.

That said, I really believe that if you got through the first round with no serious adverse issues, you are apt to be okay with it!

Radiation is another thing altogether, however. You MUST follow every treatment with a post-rad rubbing on of the ointment. It should be a non-oil based thing; it should be water-based. And you should apply it religiously (or your wife should), after each and every treatment.

Know that the effects of radiation are not likely to expose themselves for at least a couple of weeks, maybe longer if you are fortunate. (I do not recall the duration of your rad treatments.)

The rads are likely to lead to some burning, no matter what you or your medical folks do to alleviate it. If things have not changed so dramatically in the last four years, there will be some redness, at the very least, and, in my case, my upper chest turned turtle-shell hard for awhile despite our efforts to reduce the effects.

You may experience some fatigue. Between chemo and rads, it is LIKELY that you will experience fatigue.

What usually comes with fatigue and all that you have been through and are going through is grouchiness, shortness of temper, that sort of thing. Expect it.

If none of this happens, you have done a fantastic job of beating the stuff. If any of it happens, you have also done a fantastic job of beating the stuff.

In the meantime, you might want to reconsider the home health care nurse. YOU might not like having her there, but what about your wife?

I had bad home health care nurses when I was going through some of my stuff, and we just called and asked that they not be a part of my care in the future. Many, most, of them are kind, gentle people, and all of them, as far as I know, are explicitly trained for the jobs they are sent to you to do.

Some are unbelievably bad, I agree. But you might want to consider another shot with them, with the proviso that this one who did such a bad job not come back.

It's not that your wife will get any kind of a break because of this, although she will, from a mental perspective... I know that she is apt to be standing over the entire procedure anyway.

It will, however, help.

And, the fortunate survivor who has a loving and caring wife, apparently, you should encourage her to leave you from time to time, to go out, to eat lunch with friends and family AWAY FROM YOU, to forget this thing, to make herself a better caregiver by taking good care of herself.

I'm just saying.

Congratulations, John, and thanks for the positive message!

Take care,

Joe

John oldtmr
Posts: 33
Joined: Jun 2009

Hi Joe,

The Erbitux is supposed to make the tumor more receptive to the radiation. The main side effect is an upper body rash. They give me a small bag of Benedryll first and that really knocks me out. I got the rash but so far isn't too bad.

I've been a little nauseous, but don't know if it's from the PEG or Erbitux. They gave me a nausea med that I've got to take before rad. 'cause I will be getting a shot of Amifostine 45min. before rad. I can take it anytime though.

This is it!!!!! Was to mean that now I'm into it now, no matter what. I'm pretty sure that this is going to be worse than I can imagine, and bottom line, the alternative really sucks!!

Oh,I almost forgot Joe, what are the ointments for the burn. I'll ask the nurse today too.

Thanks again for you're input and encouragement,
John

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

John,

The cream I used was called Biafene. At the time (05-06 time frame) I believe it was a prescription product in the USA, although it had been used in Europe for some time previous. My wife, the ET nurse, tells me that it is now an over-the-counter product, one she still swears by.

In any event, if not Biafene, then others advise Aquaphor, still others NATURAL aloe, emphasis intended on the word NATURAL. As Trish advises, be sure that whatever you use is water-based rather than oil-based, and use only AFTER treatment, unless otherwise directed by RadMan. As always, consult with him/her before applying anything before OR after.

As for amifostene, again my reference is back in the time frame of late 05, early 06, but at that time my doctors were ambivalent about its effectiveness in protecting the salivary glands during radiation, and this included my ENT, OncoMan, and the radiation doctor.

The treatments were expensive (as I recall about $400 per shot, and I got two shots every morning for 33 of a planned 35 treatments, but all of this covered, with doctor's referral, by insurance). The consensus was that if I was willing to endure the shots and the potential side effects (the nausea they are trying to protect you from comes first to mind) then I could go for it. And so I did.

Unlike in your case, from reading subsequent posts, I did receive two shots. I did not take any pre-delivery meds such as benadryl or anti-nausea meds, as no presumptions were made. Perhaps they have learned a bit since then; perhaps your dosage is stronger. In any event, I did not experience the nausea, although I concede they considered me one of the lucky ones.

As for the cortisone cream, back then, in the ancient days of 05-06, the nurses were kind enough to switch the location of the shots on a regular basis. By using my stomach to start with, they had some area to work with (and there was no pain). They would then rotate to one arm and then the other before switching back to the stomach, and I never had an issue.

Maybe things have changed.

In any event, John, those are my EXPERIENCES (and not opinions) for what they are worth.

Best wishes, and again, congratulations on your survivorship and excellent attitude.

Take care,

Joe

bogey4on17's picture
bogey4on17
Posts: 6
Joined: Apr 2003

Enjoyed your post, John, and certainly wish you the very best as you start treatment. One thing you'll find as you begin walking this path is opinions are like butts and everyone has one. Taking what you read and hear with a grain of salt and coming to your own educated conclusions will bring you the most satisfaction and peace-of-mind.

As a graduate of Amifostine treatment, and having worked closely with the folks at MedImmune Oncology (the company who manufactured and marketed the drug until they were sold to AZ), the major key (within your control) to successful completion of Amifostine treatment is hydration, hydration, hydration. Drinking a liter of water an hour to 90-minutes before administration of the drug will minimize its side-effects and maximize its ability to do all the things you're expecting of it. As I said, opinions are like butts.

FYI, I'm a survivor of Stage IV H&N cancer. This crap can be beat!

All my best,

Jeff

John oldtmr
Posts: 33
Joined: Jun 2009

Hi Jeff,

Thanks for the tip on the Amifostine. The nurse yesterday stressed this about the hydration. I also have to take a nausea pill and Benedryll an hour before I go for the shot. She also said that the shot site can get red and she said to rub cortisone cream on after each treatment.

I really appreciate everyone's input, Thanks a bunch,
John

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Jeff, I note that you twice state the rather obvious (I direct you to the subject line of this post). Actually, opinions are not so much like butts, as it turns out, as it seems that we all have opinions, while, regrettably, having been on this site for several years now, I have learned that some of us no longer have butts.

I am curious as to why you make this statement not once but twice in an otherwise kind response to John. Has someone offended you?

I like to recall the words of another member of CSN, a lady named livingforhope, who responded to someone who apologized if he disagreed with her or offended her that if she was not seeking diversity of opinion and even disagreement, she would not post in the first place.

That said, I would advise that in this particular board you are more likely to get experiences than opinions, although opinions abound, to be sure, sought out, I would strongly suggest, by those who, after all, ask for them.

Congratulations on your own survivorship! You are a beacon for others and I am hopeful that as a survivor, you can continue to make a positive contribution to the board (and other boards, for that matter).

Take care,

Joe

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi John, Just wanted to tell you how happy I am for you that you are finally on a schedule. I know what you mean when you say you are glad to be on a schedule, I felt the same way, to me it meant I was finally on the road to beating this disease.

I have cancer of the larynx and lung cancer. The larynx cancer had caused me to almost completely lose my voice but after only 2 chemo (cisplatin) and 9 rad treatments I have most of my voice back. It doesn't sound quite the same but at least I can finally talk to my husband and family again. I saw my rad and onco doctors on Tuesday and they both said my voice was improving because the tumor is shrinking. Just hang in there John, there is hope!! I also got the results of my brain MRI - nothing!! Needless to say I am on cloud 9.

So far my side effects have been mild, I am tired and suffering from non stop nausea but no vomiting. The doctors do remind me every chance they get "you are going to get a lot worse before you get better" (pain and vomiting) but have been told they have meds to help keep both of these under control. I also have a peg tube but I am still eating and drinking everything by mouth. Just make sure to keep drinking as much as possible and eat every couple of hours, drinking Ensure Plus has also helped keep me from losing weight. The doctor told me to drink at least 3 Ensure a day as I am small and he doesn't want me to lose any weight.

I hope you and your wife can stay upbeat and optimistic throughout your treatments. There may be some rough days ahead but just keep reminding yourself that better days are coming.

Good luck and stay in touch so we know how you are doing.

Glenna

John oldtmr
Posts: 33
Joined: Jun 2009

Hi Glenna,

Just wanted to touch base with you. Sounds like that cisplatin is a lot worse than the erbitux. I'm nauseous off and on but don't know if it's from the erbitux or from just getting the Peg tube. I could stand to loose the weight but they said they didn't want me to loose more than 25%. Everyone on here and my team have stressed the need to hydrate.

So hang in there and keep in touch.
John

Tricia05
Posts: 2
Joined: Dec 2008

The cream to use, which is non greasy and no oil is AQUEOUS - there is also another but i can't remember its name. Do not use any oil based ones! Aqueous really does help when having radiation. I live in UK and am a 4 year survivor of SCC of the nasal septum and my hospital here gave me tons of the stuff - I still use it as I love it so mch for the face underneath foundation. Good luck John with treatment.

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

I said when having radition, i meant after radiation. I was told not to use any creams whilst having rads. That was my experience. Everyones is different, so check first.

ravenswing115
Posts: 3
Joined: Jun 2009

Hi evil stepper! (John). When Katie (baby next door) burned her foot severely, I got her some PURE cocoa butter at Paradise Health Food store. It is hard as a rock, and you (Mom)have to rub it between your hands for a minute or two, but really makes a difference. Both the burn doctors and Katie's Mom said it helped tremendously. - I will try to pick up some today - use it or not - I'll still love you. The other option IS a natural oil like grape seed or sesame, even olive oil. None of these will clog your pours, and allow your skin to breathe. DO NOT try baby oil.

I have a question for all.....

A year or two ago, I took care of a friend who was in a terrible accident and broke pretty much everything. I started taking pictures the minute she got out of I.C.U. At first she thought I was nuts, but once she returned to earth from the drug high, and was able to return home (after a 4 month hospital/rehab stay), she was grateful, as she couldn't remember things. Have any of you done this during your cancer battle? I just think that both the patient and care givers are such warriors that it should be commemorated. I want my kids and (hopefully) grandkids to know what their grandparents survived. Is that crazy or offensive? Many of my scrapbooking magazines have "Cancer" pages, and they also have a month devoted to "scrapping" for Cancer.

Love ya Grampy. Still praying for you (and everyone here). (Am I allowed to say that?)

Renee (John's evil step-daughter)

p.s. - couldn't they name the drugs something easier to pronounce, like VILE or 'Noxious?
tee hee

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

For the rash, which is apparently resultant of the Erbitux, I would be careful of what I applied, as it may impact the radiation. My wife, as I mention above, is an ET nurse (Wound Care among her professional duties), and she admonishes without equivocation NOT TO USE OIL-BASED products on the skin when radiation is being provided.

Your heart is in the right place, Renee, but I would darn sure double-check on this one.

As for the photos, many folks never want to see them. A guy once posted his post-op ICU pics in here and was ultimately banned, I believe :). Seriously.

Me, I finally saw a pic of me in the ICU a month or so ago (more than three years after the event) and was blown away (intrigued) by the image, never having imagined that I was in quite that shape.

It was provided, incidentally, in a scrapbook my daughter made. My wife finds it grotesque and doesn't even want to glimpse it from far away, the memories, I suppose, a bit much. She also thought it would gross me out somehow, but, again, I studied it forever.

I suppose each of us, therefore, comes to these sorts of things with his/her own mindset.

At the very least, you are to be admired for your great intentions, which I am sure your stepdad will appreciate.

Take care,

Joe

ravenswing115
Posts: 3
Joined: Jun 2009

Joe,

Thanks for the input, Joe. I really appreciate the time you took to answer me, though I'm just a bystander. I was thinking along the same lines as far as photos....it has to be a personal thing. I guess I would probably be fascinated myself, looking back, but I can see both sides!

Any ideas on how to make the primary caregiver's life easier. My Mom-O is a stubborn one (as is John - the patient), and I want to help if I can. Neither will ask for help if they think they can do it themselves. Just worry that both patient and caregiver will overwhelm themselves being stoic. It's hard to watch the people you love go through such horrifying things.

Anyone have any input?

Renee

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Renee, I am not sure how old you are (which could be important in terms of what you are capable of doing for them) but here is what I have experienced that was quite beneficial to both me as survivor and to my wife as primary caregiver:

Without being asked, friends and relatives rained down on my home for a spell while I was in hospital and then treatment and, without asking, besieged us with dinners and dishes that were MOST WELL RECEIVED even if not asked for; my grass was cut for me; weeding was done, plants were cared for; heck, it's embarrassing to say almost, but both of my sheds were reorganized :).

Friends and former soccer moms of teams I coached (also friends, I should add) arranged to rotate in providing me transportation to radiation once the first week was behind me, and this was a great boon to my wife as well as a nice chance to see some friends for me.

We asked for none of these things, and yet all were provided and all were gratefully received.

As for mom, I would strongly advise that you INSIST on taking her to lunch, to get her out of the house and away from it if only for an hour or so once or twice a week, if possible. Maybe a shopping trip, a movie, something that you can do together that she enjoys.

They will not ask, but you, and other recruits, can DO. With the above in mind, maybe you can think of lots of other little things you can do to help that will not be considered intrusive. (For example, I am not sure how mom would take having help with the home, mopping floors, dusting, etc...some folks are quirky about that, but, still, another idea.)

Best wishes, and again, a salute for your caring and giving attitude.

Your parents are lucky in that regard, and they almost certainly know it.

Take care,

Joe

lyolan1
Posts: 95
Joined: Jul 2009

Hi John, Hang in there pal. I was just diagnosed with Squamous Cell Carcinoma. they think it is in the early stages. Could be HPV related. I won't know until my neck disection and biopsy, PET scan first, surgery to remove lymphs, radiation and Chemo. Like they say, the tratment is worse than the disease. I have not decided on the PEG tube yet. I am in good shape and think I might be able to make it. Keep me posted and let me know how the PEG procedure went. Alex.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Trust us, you will be glad to have it even if you don't need it. It will absolutely be one of the smartest decisions (of the many) that you make. With the tube you can easily manage your hydration and your nutrition, both of which are critical to withstanding treatments and therefore beating this Demon.

PLEASE, PLEASE, PLEASE.............GET THE TUBE. And do it before the end of your 2nd week of treatments. After that it is more difficult.

JK

John oldtmr
Posts: 33
Joined: Jun 2009

Hey Alex,

Can't offer too much yet. Got the tube the 6th,was kind of sore 'till Fri. Have been sleeping in the recliner since the placement, then Fri. 'cause I felt good, got the bright idea that I could sleep in bed. That didn't work out so well as I kind of pulled it or something. Sore today and had some seepage, but after shower and dressing it's fine. Finished the night in the recliner last night and will be there for a few more. So far am reading everyone's posts about the PEG on here and playing it by ear. I'm not in a position to give any advice, but after reading all I could here, had made up my mind to get it, even before the rad doc recommend it.

Hang in we will all get through,
John

Fireman
Posts: 28
Joined: Feb 2009

Joe; Thanks for your response to Jeff. I too am glad that he is on the road to freedom, but was scratching my head a little. Your perspective was right on and I for one appreciate your continued perspective, support, experience, and input. As for John, attitude will help more than you can imagine. Get the information you can and learn from the experience of others even though your experience may be different. You can help someone down the line who shares a similar experience to yours and your attitude is most welcome as encouragement to all.

John oldtmr
Posts: 33
Joined: Jun 2009

I just want to thank everyone again for all you're encouragement and info. Got 2 doses of Erbitux and 2 rad treatments down, only 31 rads to go.

Got a PEG question though. Got it in last Mon. and am getting along with it all right. Only thing is I'm getting some seepage around it. It isn't sore, or red around it, but wondered if that's normal. Will be seeing docs tomorrow so will ask them. I know you guys aren't docs but value the tons of hands on experience you all have.

Thanks so much again,
John

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

John,

I post on the esophageal board, but thought I'd jump in....I had a tube for a few weeks after my surgery, and mine did have some pussy type seepage as well...the docs told me that was normal as long as it wasn't hurting or red, so it sounds like the same deal! I wish you luck on all your upcoming treatments!!!

Cathy

John oldtmr
Posts: 33
Joined: Jun 2009

Hi Cathy,

Thanks for input. Went for treatment today and rad nurse told me almost the same as you. Said that if it still bothered me to bring in dressing and they would take a look.

3rd treatment today, 30 left!!!!!!!

Thank Everyone,
John

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

John,

3 treatments down!! Way to go!! The countdown is on! :0)

Cathy

denistd's picture
denistd
Posts: 481
Joined: Apr 2009

I do not believe there is a justifiable reason for not having the peg tube. Four weeks ago I completed 35 radiation treatments and 3 cisplatin high dose chemos. The first two weeks were real easy, no reactions to the cisplatin except a couple of days of annoying hiccups. fatigue from radiation, but kept eating, docs nurse admonished me for losing 5lbs over the two weeks. Things started to get rough on the throat, so I started using the canned formula. My goal was a combined 2000 calories a day. The formula was 300 calories a can. I also drank 2 ensures a day. I kept increasing the cans of formula to compensate for lack of eating orally, although I kept on eating small amounts. I also kept myself hydrated with the peg as thin liquids were difficult to swallow. I did and still do suffer a little nausea. the nausea is a dekayed effect due to low white and low red blood cells. I am anemic at this time. I am 4 weeks post tx and am eating normally, during tx I lost a total of 8lbs and have regaind 5 since the tx stopped. The peg comes out next week. Get the peg, it's as much neeeded as the brakes on your car. Denis

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Denis, congratulations on your successful conclusion of treatment!

As for your comments regarding the peg tube, I am a big supporter of the tube when needed. In my case, following surgery, rads and chemo I lost 75 pounds and that was WITH the peg tube in place.

So, as a general rule, I would advise that if someone's doctor suggests or recommends it, it a pretty good idea to go with that call.

Even so, a sweeping generalization is going to be somewhat incorrect in the cancer world, simply because no two cases are the same. There are a few reasons I can think of why a peg tube should not be placed: if doctors presume with good reason that it will not be needed, why would one want to undergo a somewhat invasive procedure (they do put a hole in you to insert the tube), the wound site which is potentially a source of infection, and which may provide a handy crutch, potentially, for avoidance of getting back into the eating-normally groove again?

I am certainly not disagreeing with your intent, Denis, but with the idea that the tube is the right choice for everyone.

Again, congratulations on getting through it and for the impending removal of your tube as well.

Take care,

Joe

John oldtmr
Posts: 33
Joined: Jun 2009

Hey everyone,

Just an update. Tomorrow will end the first full week. Have had 3 doses of Erbitux and tomorrow will make 7 rads. So far a little dry mouth and taste is starting to change a little.

Saw nutritionist this morning. Doc wanted them to set everything up as I am type 2 diabetic. She is getting me lined up for Glucerna 1.5, about 7 cans/day. So far not having any real problems.

Nutritionist was really impressed with how knowledgeable Ruth and I were about all this and I gave all you folks on this site all the credit. If it wasn't for all of you I would be completely in the dark. Thanks to you all I've known the questions to ask and a lot of time already knew about what they were telling us to do or expect.

I can't thank you all enough,
John

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Take every opportunity you can to celebrate an accomplishment, especially as great as this one.

Hey, a tip on the nutrition/hydration, you may already know. Get a notebook and keep detailed records of the time and amount of nutrition or hydration that you take. This will make it easy to achieve daily calorie intake goals as set by your Nutritionist. Also, this will help to stay ahead of your hydration. As you progress you are going to find that 80-100 oz. per day of plain water may not be enough. You may want to substitute Pedialyte for some of those ounces. Toward the end I was doing 50-50.

You can use that same inventory to track meds, mouthcare, etc.

One quick way to predict dehydration is to use one thumbnail to press the other thumbnail just in front of the cuticle. If it turns white and stays white when you release, then chances are you need to up the fluids.

I love your attitude. Wish you could bottle it and share it.

JK

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