Take Charge of your own care/ Update

lyolan1 said:

Same Journey
HI Dazey,
It was great to here from you. You must have had your 2nd or 3rd rad by now. Are you going with the Erbitux? My impression of Cisplaatin is that it is very toxic, it does a number on your liver. Let me know. I really think that they should do a "Survivor" with only cancer fighters/survivors. My other favorite would be a series with people who have had knee, shoulder, ankle... surgery. Call it "Survivor Gimp". I hope things are going well. Myself, I am glad that I have started the actual process of treatment. I went to the Bills vs. Pats last night with my son, what a game! I want to keep up the work and normalcy for as long as possible. I realize that the treatment will start to get rough in3-4. I will expect the worse and be ready for it. We have to keep up the protein and the exercise. the weight loss comes from muscle deterioration. The healtier we are the sooner we get better. Alex.

no chemo
Good to hear from you - I am not scheduled for any chemo - straight IMRT - 30 treatments - have done 2 -today will be the 3rd. I agree with keeping up the normalcy and the exercise -while I am no longer a gym rat - I am doing some aerobic and free weights - have increased the protein by adding soy protein to a lot of strange items. Keep up the activity as long as you can - then modify it if at all possible and don't eliminate it. I am also glad that I have started (not sure glad is really the right word )- it will only be over once it is started. How did you do the the mask? Keep your thoughts high - love the Survivor shows-interesting how many different types could happen - of course, there could also be a combination show- "Survivor-Hell's Kitchen"- Chef Gordon Ramsey as MC.....imagine those shakes................................ Good luck-Dazey

lyolan1 said:

Taking Charge/care
Hi Istricker, thanks for getting back to me. My dietician is recommending a very similar regimen. On the protein, I want to use soy in the mix, is that what the products contain? Or is it animal protein? I am at 200lbs. I also would not mind being at 185 again. I was at that weight for most of my adult life. I had an ACL repair on my knee that still is not right. Consequently, ihave not been as physical and have gained weight. I do not mind losing the weight, I just don't want to loose too much muscle. My wife is also being very helpful, considering she is a ful time teacher. My kids are just great, real loving and supportive. I am drinking more fluids than ever because of the treatments, I will probably need more. the g-tube is really going to get annoying toward the end. I realize how imporant it is now, but when it is over, I am going to burn it and have a celebration. Keep in touch and best of luck. Alex.

You sound pretty upbeat-keep it up
I must caution you about overdoing work again. I want you to be careful if your line of work is something like involving machinery or moving dangerous parts. Sometimes I sit on the couch and cannot remember which button on the remote to push to change the channel The point here is that at times concentration just disappears. Now is the time to take advantage of all those people who keep asking what they can do? Give them something to do, perhaps someone can open and close for you? Or give a trusted employee some added responsibility?

This is week seven for me on RADS. Had chemo on Monday. Was supposed to have it on Friday but my white blood counts were low. By Monday they had doubled. This has been a bad week because the Cisplatin really beats me down and the radiation burns really started hurting. I had to get on pain meds for the radiation burns and get some prescription silver oxide cream for for the burns.

I started this at 212lbs overwreight. I got down to 196 and now am at 200 because of the feeding tube. I'm on Jevity 1.5 360 Calories, six cans a day. The feeding tube will get manageble. It's more of a pain to keep clean. Mine is about six inches down from the left breast and is a number 20 tube wise. Initially it was put in too tight and caused pain and minor skin irritation. It had four bumper pads , looked like a four leaf clover. Went back and Doc cut one of the pads out to relieve tension. I learned from this that the pads slide up and down on the tube and was able to move the remaining one up about 3/8 of an inch to relieve more tension without returning to the DOC. I clean and tape everyday. I shower with the tape on to let the water make it easier to remove and keep it out of the way. I have all my cleaning supplies in the bathroom and change everything after the shower.

I have week eight to go and then 3 make-ups. I think two machine breakdowns and one holiday. Don't sweat a breakdown they seem quite common.

I also hear that the radiation keeps on giving after they finish so I know I'm not out of the woods yet? Can anyone tell me when the burns start to diminish?

Alex you have a great attitude going in, keep it up, seems like you have a lot to live for, great family and business. There is only one direction to travel from here-Onward!

lyolan1 said:

Care/Update
Hi Ratface, What's the good word? Things going okay? You sound like you will be on the upswing soon. I just finished week 1 with 2 Erbitux and 5 rads. The Doc changed/ added a anti-nausea medication to my "White Lightning" chemo treatment and I feel better. the rash is a real annoyance, very itchy. I had an unbelievable case of heartburn last night. I could not go to bed until 3am. 2 Zantac did not touch it. I do not touch the equipment at work and I do have a great crew that is getting the work done. The nausea was killing me last week, no energy. How many rad treatments are you getting, 40? I am getting 33. Are you still eating by mouth? My G-tube is bothering me much, I clean and flush every day. I also started at 205, 20lbs. overweight. My intention is to get this tube aout as soon as possible. I am getting a lower dose of rads on my right with then hope of saving my salivary gland and tastebuds. Keep me posted. Alex.

lyolan
Oh boy, do your comments sound familiar. The rash is a good sign according to my husband, Bob's oncologist. There is not scientific study on Erbitux, but his onco said that those who break out in the rash seem to have better results with their treatments than those who don't. So BE HAPPY!!! The nausea will get better and soon you will not need to take them - once you get used to all this deadly stuff that's goiing into your body and you will also have to get used to the supplement you will eventually take in thru your g tube. Bob's g tube bothered him for awhile too. That will eventually settle down. Your treatment sounds identical to his-35 rads with Erbitux weekly. I can tell you this from our experience with only 5 more rads to go: It's tough, but not as bad as we were led to believe, it almost gets easier as the weeks go by - perhaps the body adjusts to all the torment, the pain has become tolerable(not taking much pain med anymore), food is horrible so drinking water and using the gtube is the way to go with an occassional taste of something, it is possible to swallow, not everyone's skin breaks open in sores etc. ( his hasn't yet), check in with your own physician during this ordeal as he/she knows you and will offer good suggestions also,don't worry about your weight as you will lose and pretty soon they will be harping at you to maintain and tell you to use more supplement thru your g tube, and be prepared for a fairly long recovery. Bob is also anxious to get rid of his gtube but knows it won't happen as fast as he wants because of the inability to eat - everything tastes so horrible. Keep on keeping on.
PK

k-ky said:

my dad
my dad got diagnosised with laryngenal cancer- stage 4A 2 weeks ago we are having trouble talking my dad into going away from the small area we live at for treatment does anyone know about the cancer treatment center of america in illinois

Alex, I take a prilosec OTC
Alex, I take a prilosec OTC med every day to deal with the acid reflux. Has been working for the last 7 weeks. I'm interested on why you are on Erbutux rather cisplatin, would like any infor you give give me pro or con. Did your Oncologist give you a choice

jkinobay said:

Did you give Emu oil a try?
If not, you may want to. It worked great for me and for several other Survivors I know of.

JK

Nausea
Has your Doc tried Compazine? May help significantly better than OTC antacids.

lyolan1 said:

chemo/rads
Hi Dazey, I am curious, why no chemo. At first, my surgeon said that I would probably not need chemo. Then I met my medical oncologist and said that I had to choose between Erbitux and Cisplatin. I have said all along, that HPV head and necks were getting too much treatment. Instead of 35 rads onboth sides, they settled for 33 rads and 6-7 Erbitux, and my right side was going to receive less intense radiation to save my salivary glands. Did you have surgery to remove your lymph nodes? I have to admit that from the beginning, I felt like I was in a test tube durring all the diagnostic tests, they spoke to you without looking at you. The docs have admitted to me that they do not know enough about hpv cancer to recommend a reduced treatment. I was wondering if the medical community was slightly reducing treatment till they find the right dose? What do you think? Alex.

no chemo
Yes I had the node removed( originally they thought it was a cyst); had a cat scan first and then a PET scan after - they could not find a primary anywhere in my body with the PET scan, so they recommend only radiation, I have had the best consults - Sloan Kettering- and have been told this is curable with radiation only.

I am receiving IMRT treatments - 30 (8 down, 22 to go) Tomotherapy.

I have a bit of dry mouth right now and an annoying soreness in my throat, but nothing I can't deal with at this time. I have a wonderful dentist who took me right in when he heard the news and wouldn't let me leave until he fixed anything that needed fixing and he gave me a tray and fluoride for treatments I do every other day.

Of course, I am curious about how they will follow up. If my first PET scan showed nothing, what will a follow up scan show. I probably should forget about logic and just focus on live long and prosper.

I want to keep a positive attitude and will deal with whatever comes my way. I continue to work daily and leave work at 3 to get to my appointment. If and when that has to stop, I will stay home. We can all do anything as long as we know it is not forever.

Please keep posting - this is a journey better taken with others. Dazey

lyolan1 said:

Care/Update
HI Dazey, I'm glad you are doing well. It looks like we started on the same program schedule. My primary was in my tonsil as you know. I have 33 rads and 7 chemo. I must say, you are lucky you are not doing the Erbitux, this stuff is weird and nasty. This rash is unbelieveable. My surgeon said that I would probably not need chemo because the surgery went so well. I believe he said that because he wanted to spare me the difficult(unnessary?)treatment. However, these cancer centers are very expensive and somebody has to pay for them. The Erbitux treatment costs $30,000 for 8 treatments. I don't mean to sound like a conspiracy freak, but, it always comes down to the money. Therefore, I can not help wondering how money influences treatment strategies. Call me paranoid, but, how come we only hear about the big money treatment centers and the big pharmaceutical drug companies? I have made my decision and am going to follow through, even though the chemo is killing me. So far, the rads are uneventful. Skeptical in Boston.

Cetuximab

Erbitux is why Martha Stewart went to jail.