Diagnosed last Monday (Squamous Cell -throat cancer)

Chefdaddy said:

Thanks John and Hondo,
To
Thanks John and Hondo,

To think I haven't even started my radiation yet, this is just trying to get some nourishment with these screaming gums and a sore throat. lol I've never been a fan of water, I think I've had too much nasty tasting water in the past. It's always had to be flavored with tea or coffee for me to drink it. I know from what you all have written that my mouth and throat will be in for a huge change after the radiation begins. I'm certainly not looking forward to it, but not doing it is certainly not an option.

Have you guys experienced people coming out of the woodwork with all these multi-level marketed health "cure-all" vitamins and other weird stuff? Wanting you to stop your treatments and start using the products they are pitching? It seems like as soon as they hear the word cancer they have the solution. When my son was diagnosed with leukemia his doctors made it very clear to not give him anything that wasn't prescribed by them as great harm could come from it.

I know some people really believe in their cure-alls, but I wonder if they realize how dangerous it can be for someone.

God Bless you guys
Mike

So Extremely Sorry
Chef, I have to tell you that you are one strong person!! I am so sorry for all that you are facing and very thankful that you have a strong faith in God because nobody can help you like Him! My heart just breaks for you and your family with all that you are facing. The members are correct saying you must keep your faith. Reading your post here makes me feel very lucky. I was diagnosed in Aug. 09, went thru 35 rad treatments and am now waiting to regain my ability to swallow and taste. That seems so trivial when I read your posts and I just want you (and the others) to know that I will pray for everyone. I wish I could so something to help you but my prayers will have to do. Please don't ever give up, keep your sense of humor and hang in there. The prayers will be never ending.
God Bless You,
Debbie

Chefdaddy said:

Dearest Debbie,
The only
Dearest Debbie,

The only reason I may appear to be strong right now is directly attributed to God's mercy and all the loving people here on this site. I truly believe that the prayers coming from all of you has reached Gods ears.

Debbie, I am praying that your swallowing and tasting returns in full.

A question if you don't mind, did the burning aspect of the radiation come on quickly? I've read here that about the third week into the radiation it gets bad but I'm curious as to how bad and if that's when you have to start using the PEG to eat? I realize not everyone experiences the same.

Thank you for writing to me Debbie, my prayers are with you.

Mike

Burning
Chef, you are so right about the prayers!! I couldn't make it thru w/o my faith in God and His grace and ability to cure. About the burning, it didn't start on me until about the last 2 weeks of treatment. It was very bad. My skin was on fire and so burned that it cracked open anytime I moved. But I have to say that once the aquaphor was put on the pain immediately stopped! I kept it caked on my neck until it was healed which was only a matter of days. It did an amazing job. I got the peg before the neck burn. The radiation swells your throat badly so you can't swallow. I still have the tube and I'm still unable to eat most solid foods w/o choking. I try to eat something almost everyday but when I get choked I get scared to death and stop trying for a few days. I have to say, this hasn't been easy but compared to others I've had a walk in the park. It breaks my heart when I read what others are going thru. I pray for everyone and thank God for getting me to the point I'm at.
I hope I've answered all your questions, Mike, and I will keep you and your family in my prayers. God is the true healer!!
God Bless,
Debbie

Radiation and Burning
Mike,

For me it started around the 4th week of radiation, maybe even the 5th. Like I said, everyone reacts individually. My burning was both internal and external. Internally my throat becasme kind of raw like step or similar. The external was like a vry bad sun burn with peeling. Nieither was unbearable, and both were very tolerable. You'll just have to see how you react and adjust.

You can handle it, you can handle anything once you commit to it and let God give you the strength. Yes I was uncomfortable, but it wasn't something that was a constant painful thing. I was always aware, but seldom was it so bad I couldn't stand it. It was only painful when I swallowed, LOL. I know that sounds funny, but I meant primarily when you swallowed food or drink.

I tried the Aquaphore and still have a bunch I believe (I'd have to look). But more than likely your radiaologists will have plenty for you as samples. For me it actually bothered me more than comforted me. It was kind of greasy and just annoid and irritated my skin always leaving it open and moist.

Like I mentioned before, mine was just dark and dry, peeling until the dead skin was gone, and the new skin was pink and fresh. You just want to stay out of the sun so as not to expose the new skin very much.

I also tried Aloe Vera with about the same results. Although whe I tried that was when I was having reactions with the Amifostine and Radiation and was getting really sick and fevers. I was associating that with the Aloe Vera, and stopped using it.

I'm sure you'll be fine and can handle it....like most of us at one time have done, you are seeing a wide variety of reactions and assuming the worst. That's good maybe in preparing for the worst, but it also doesn't mean you'll be one of the worse.

Hoping and praying that you'll have it easy, and it'll be very tolerable....not sure if you were in the military or not. I was in the Marine Corps for six years, and boot camp was 13 weeks at the time I went in...Parris Island. I pretty much told myself, if I can survive that, I can survive 9 weeks of Chemo and another 7 weeks of Chemo and Radiation....and I did, so will you my friend.

Stay focused on your healing, and cancer killing....

Live Strong, Cancer Free......
John

Chefdaddy said:

Hi Hondo,
I just learned
Hi Hondo,


I just learned about the phone not working a few minutes ago. my brother has been trying to contact me with no success. I've been down on my back all weekend and haven't tried to call anyone.

Last Friday my brother helped me switch my cell phone plan to a different plan and changed my cell phone number to a local phone number and the cell company messed up everything. They are working on it now, but I don't have any idea how long it will take. I have so much going on this week between doctors appointments, the kids meeting with their attorney and court on Friday, it couldn't have happened at a worst time. I will send you my new phone number as soon as they get it working.

Please pray for me, between pain and incompetence the flesh is getting thin.

Talk to you soon my friend

Mike

New Phone
No probelm daddy Mike, I just want to make sure you were OK. Will keelp you and the kids in prayer

Chefdaddy said:

Thank you Debbie and John,
I
Thank you Debbie and John,

I have a better picture of what to expect.

You both mentioned Aquaphore and I found several more personal experiences using it on other sites.

Did you ever try RadiaCare Gel? I guess it's non-greasy and it is a water based gel. It does require a prescription.

John, my stint in the military could have been the basis for a sitcom. In 1971,I was drafted into the army (waited to late to join the Navy) I ran to the Navy recruiter trying to see if there was any possible way of getting into the Navy and after talking for quite a while he learned I was a boxer with few loses and he started making phone calls and the next thing I know I'm in the Navy. At the time I was also an IBEW electrician apprentice and so I was told I would be an electricians mate on a carrier and would be boxing. Two days before I was to report for duty at AFEES, I was hit by a car, smashing my legs, which put an end to both my boxing and my military career. After a lot of rehab and therapy I was eventually able to return and become an electrician.

You just never know what's around the next corner.

Thank you again you two,

God Bless you both

Mike

Accident
Very sorry about your accident, glad you survived that...see, you already know how to be a survivor.

I wouldn't really be overly concerned about your treatment at this time. I know that's easy to say as I've already been there done that. But you really can't do much at this time other than be concerned and informed...the informed part is a blessing and my (our (other forum members) gift to you.... I'm glad you have found your way here. I wish that I would have found my way here sooner, but glad that I eventually did find my way here...

When I was going through my treatemtns, and actually before the radiation, I found this guys blog. It was very informative and he's a great guy also....

http://users.blogforacure.com/jacquesusa

He had it very rough, but I think he had about the worst reactions and treatment that I've seen.

I don't think he had chemo, I think he had a neck dissection and then radiation...twice a day, talk about rough, his neck look liked it was skinned. But he made it through and is doing great.

If you need anything that I can talk with you about, just ask, I'll do what I can.

John

Chefdaddy said:

Dearest Theresa, Hondo and
Dearest Theresa, Hondo and John,

I'm glad your dental experience went off smooth Theresa, mine did for the most part.
This surgery (No. 3) went well as far as no bad anesthesia problems as the two before.
I woke up in recovery fairly well but in a lot of pain in my throat which I attributed to the air pipe rubbing on the tonsil surgery area. The mouth pain kicked in really fast which really surprised me, as the doctor told me he was going to numb my mouth up before I woke up, maybe he forgot. They medicated me but it didn't help much. I guess the surgeon had some very difficult teeth and roots to contend with. I'm doing pretty well other than a mouth full of stitches and several long stitch "tie offs" that keep sticking me in the tongue, some are about a half inch long. I'm going to give my young Oral Surgeon a bad time and send him a "How To" sewing book. lol

Today I got a troubling phone call from my kids awesome court appointed attorney, she had wanted to extend out the court hearing on the 22nd to at least 4 weeks out to give her more time to put a plan together between the kids counselor and their mother's counselor, myself and her to submit to the court, taking this issue out of the court. The kids mother had agreed, but then called back today and backed out, so now I have to go to court looking and sounding like Gabby Hayes (Roy Rogers side-kick for you youngsters) She has no custody and no visitation due to the amount of abuse by her and her boyfriend. She recently fired her fifth attorney and the court ordered an attorney for the kids. It will be interesting. Please keep us in prayer to keep the kids protected. They are afraid that the Judge will feel sorry for her and make them have supervised visitation with her.

John, when I'm in the shower it makes my stomach start start aching where the PEG is at. Did you have any of that? I usually stand in the shower, but now that I'm on pain meds I have to sit on a shower seat because I can't control my numb legs as well, I fell the other day.

Thank you, all of you, for your kind words, prayers, encouragement and friendship.


Your blessed friend

Mike

Prayers ...
I'm so happy that the teeth are gone and it went fairly well. We've been busy around here the past few days so I haven't had any time on the computer.
My heart breaks for your poor children and the fears they have about changes in visitation. I hope the judge can see that they belong where they are. I will be especially keeping all of you in my prayers until I hear that all went well and they are safe with their chefdaddy!
Theresa

Chefdaddy said:

Thank you John and
Thank you John and Kevin,

John, I checked out Jacques site and I feel so bad for what he went through. My concern is mostly because I'm worried of the possibly of not being able to care for my kids during this journey. Due to the court issues that would be very bad.

I started having trouble with my left shoulder a couple weeks ago, I had cortisone shots in it in 2008 and it worked but it all of a sudden came back with a vengeance. This morning I was trying to get a blanket off me and I heard something rip in my shoulder with an incredible amount of pain and no longer able to lift my arm. Fortunately I already had an appointment with my primary care doctor and they think I either blew out the rotator cuff or I have something called frozen shoulder. They are scheduling an MRI this week to see if I have to have surgery to repair it. They're pretty sure that I tore something. When it rains it pours, in my case it appears to be an ongoing monsoon! LOL

Kevin, I will ask about getting some RadiaCare tomorrow while I'm at Radiation.

I hope to find out my starting date for the radiation. I don't know when or how the Erbitux is administered.

I received a call from my ENT doctor today and he reported that the biopsy's from the tonsils they removed came back negative for cancer. They still don't know where the primary is. He said he is going to presume that the remaining left neck lymph node is cancerous.

One of my friends that knew me back in 2001 when I had the radical pancreatic whipple surgery now calls me "spare parts". I used to think that was kind of funny....not sure anymore lol

Thank you for your input and support as always,

Mike

Stay Positive, Stay Strong
It's all just a test of your faith and endurance...you can over come. You've already shown you're a survivor....

Pam M said:

PEG Cramps
ChefDaddy,

I've been reading your thread, and am hoping for the best for you and your children.

Have to ask - was your cramping at the PEG site only? Since my 12-24 PEG placement, I've been having some (sometimes hard} cramping (not as bad as yours) several inches away from the incision site, and haven't been able to get a possible explanation.

Good to read about the PET results. Keep up the good news.

Pam

Cramps around PEG site
I started getting cramps about a week after my PEG was installed that would reoccur every few days. Never did figure out what was causing the cramping that almost felt like my stomach was turning over. Maybe it was just an adjustment period because the cramps when away on their own. I have had my PEG tube now for about 2 months.

smfitztx2010 said:

Teeth Pulled
I am so sorry to hear that you had to have your teeth pulled, especially after 6 years. I consulted two dental specialist, one oncology dentist and one periodontal specialist before making my decision to fight to keep my teeth. Both told me that I had a great set of teeth and better than they normally see in my fellow veterans and that they would recommend that I do everything I could to keep my teeth. They did talk about the possibility on jaw bone necrosis should my teeth become decayed.

smfitztx2010

Hi and welcome to CSN, I too made the decision to keep my teeth but now I wonder if that was the right decision. My mouth can’t open more then ½ inch so no dentist will or can work on me. I have to do my best to keep the teeth clean; I don’t use fluoride as I have read so many bad things about it. I have one tooth that is falling apart in my mouth, I told my doctor about it and he said they will need to do 20 hyperbaric treatments before letting anyone do any thing like trying to pull a tooth. All the rest of the teeth are ok for now. But I wonder if I pull one now should I not just pull them all and get it over with.