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Take Charge of your own care/ Update

lyolan1
Posts: 95
Joined: Jul 2009

Hello Cancer fighters and caregivers,
I was supposed to start treatments last week. I was scheduled to get a g-tube on Monday, Erbitux on tuesday, and rads on wednesday. The schedule was ruined because the g-tube surgeon was on vacation till this week. The cancer center wanted me to get the tube before chemo/rads, so my treatments got pushed back till week of 9/15. In the process, there were many adjustments and cancelations because of general disorganization/vacations. Too much time was wasted and only got me agravated. I now know what JK meant by "Be Your Own Advocate". At the end of the day, I am responsible for my own care. As nice and carring as the health care workers are, it is only a job. The vacations and last week of summer are no excuses for providing sub-par care. From my perspective, a scheduling conflict between "the team" should be noticed with a simple program that tracks the patient through all the appointments and automatically notifies the staff of the schedule conflict. Assume nothing, know whats going on with your care, even if it is a world renown cancer care provider.
On the bright side. I was able to get a few more projects lined up at work and enjoy some quality time with my wife, kids,and friends this past weekend. It was a million dollar beach weekend. I am really starting to come to terms with the magnitude of my upcomming struggle. I'm scarred and depressed at the same time. Fortunately, I have a big support group and a loving family. Whats the best food for the G-tube? Alex. Pain meds and when to start using them? Skin lotion? Where do I get the Magic Mouth wash? Alex.

newbride
Posts: 142
Joined: Jul 2009

I can't tell you anything about a G tube as my husband has a peg tube. He had it put in after the treatments started. As for Magic Mouthwash which has been my husband's best friend - your radiation team can give you a prescription and have it filled at any pharmacy. Skin lotion - my husband found he loves Aquaphor by the makers of Eucerin - he gets a ton of small sample sizes from the radiation team -- ask them if they have any but I believe you can get it in any drug store - it's very greasy looking but he said it really has been helping him. As for pain killers can't really answer you on that since he had surgery before the radiation/chemo started and he's been taking them from the minute he got out of surgery.

lyolan1
Posts: 95
Joined: Jul 2009

Hi Newbride, Great to hear from you. I hope things are going well for you and your husband. thanks for the tips on care. I hope to make it as far as I can without pain meds. I also hope to work for 4 weeks, then play it as it comes 1 day at a time. Let me know how things are going. Alex.

Dazey
Posts: 86
Joined: Sep 2009

I want to wish you well on the same journey that I am starting tomorrow also. Maybe we can consider this an Amazing Race/Survivor tv series - I definitely want to be one of the winners!I will be starting IMRT tomorrow, September 14, for 30 treatments to "squash the squamous" that is apparently hiding somewhere in the head/neck. I have mixed feelings right now - anxious to get it started so it can be over, but also a tad apprehensive. I remember the Indianna Jones movie where Indy has to put his foot out and hope there is something under him when it goes down - a definite leap of faith. We can do this...even without special effects.
I can definitely relate to everything you are writing on this blog - probably thinking about the same things too. I also plan to work as long as possible....I was told to expect to feel the effects of the radiation after week 3. Don't know if that is accurate or perhaps, a guestimate based on the doctor's experience (which is considerable). I do hope you will keep posting and sharing. Dazey

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

By the time you read this you will be 1 down, 29 to go. You are on the way to beating the Beast.

As for the effects of IMRT, I had 35 about 2 years ago. Week one was not a problem. Week two I also had a PEG placed which was a temporary setback for a 58 year old guy. Week three, as you said, was when I really started feeling the "wonders of medical technology"......in other words, I started downhill a bit. Now, here's something you need to know but they may have not told you yet. In your case, assuming 5/week, you have a total of 6 weeks. In every case that I am aware of, and certainly in my own, the IMRT continued to "work" for 3-6 weeks after the last treatment. So, don't be discouraged if during the week after #30 that you continue to feel lousy and aren't already rebounding. That may not begin until that 3-6 weeks post-treatments I mentioned. It is not good news, I know. But you need to know it for 2 big reasons................1) it will likely happen and you don't need any more surprises that challenge your positive attitude, and 2) for all of these reasons it is imperative that you take care of yourself NOW and ongoing. Focus, focus, focus, on hydration and nutrition. Those two, properly attended to, will minimize your recovery time and reduce to a certain extent the severity of the side-effects. And, don't forget oral care/maintenance. Also critical to your recovery.

Hang in there. You will do well. God Bless, and keep us posted.

JK

lyolan1
Posts: 95
Joined: Jul 2009

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.

Dazey
Posts: 86
Joined: Sep 2009

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
Posts: 95
Joined: Jul 2009

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.

Dazey
Posts: 86
Joined: Sep 2009

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
Posts: 95
Joined: Jul 2009

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.

Dazey
Posts: 86
Joined: Sep 2009

Stay skeptical and questioning - what is in the erbitux, crushed diamonds? I know that they always say the cost of the drugs includes the expense of research, but..............and to make you feel yucky also - just doesn't seem fair. I would be questioning what role the pharmaceutical companies have in getting the doctors to use some of these drugs - are they reimbursed in any way?

Bottom line - that does not matter, what does matter is continuing through the treatment tunnel until you see the other side. Nine down, 21 to go for me and I know you are on a similar schedule. As Dora said in Finding Nemo, keep on swimming, just keep on swimming! Dazey

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

I hope you are doing well. Read your post and realize that I am preparing as you are at the time was your post.

lyolan1
Posts: 95
Joined: Jul 2009

HI doitforoj, It looks like you have 2 great reasons to through with this treatment program.I hope things are going well for you. Have you started yet? I use sarcasm, doubt, and skepticism to help me cope with the reality of my current life situation.See "really cool mask". Beating cancer is what it is all about, there is alot of life to live. I have a great wife and family to help me. My kids keep me positive. I think I can make it. 5 weeks to go. Alex. Keep posting.

newbride
Posts: 142
Joined: Jul 2009

I just realized you said you're going to be on Erbitux - ask your doctor if there is a chance for you to take Micolcyline (I think that's what it is - they are green and white capsules) before the rash starts. My husband started taking them after the rash began and while it has helped he was in pain - the rash from the Erbitux is (at least for my husband) pretty extensive and started in week 2. I'm not sure if you can start this beforehand to try to fend off the rash but it's worth asking. Then again you might not be getting as high of a dose as my husband is - he's getting Erbitux several times during his week in the hospital and then once on his week out of the hospital. He's getting pretty high doses of radiation and chemo so his experiences might be a bit out of the norm

pk's picture
pk
Posts: 192
Joined: Aug 2009

lyolan,

You are about to embark on the journey of a lifetime. It's good to understand how tough this can be and then each little thing that comes along that isn't quite as bad as you expected, it's such a triumphant feeling.

My husband has just completed Rad #24 with 11 more to go. He also does Erbitux once a week. I have to say that this is ajourney, but it seems to be going better than we thought. Of course the next 2 weeks could get uglier, but maybe they will stay close to the same. Time will tell. At this time he is able to drink water, and does swallow some food each day. However, he chooses to take Boost through his G-tube as nothing tastes and is quite an effort. He is not taking as many pain pills as he was at the start. So far Vicadin has been the drug of choice. He uses Aquaphor lotion on his neck and lips. He rinses his mouth with sal****er and uses Biotene mouthwash. He has a terrible amount of mucous which he is constantly spitting out. He found that his electric toothbrush does a good job of loosening the mucous in the roof of his mouth. He is very fatigued and naps alot but tries to do a couple of things each day.

I am sorry for your delay in treatment. Our oncologist have coverage when they are gone so treatment and care goes on - Yeah!!!!

If you have a good support group and family, you will find this to be much more bearable. Best to you. Keep the faith - you will make it through.

PK

lyolan1
Posts: 95
Joined: Jul 2009

Hi PK,
I hope that your husbands care is going well. I hope to do as well as he has done so far. I think that you both realize that the tough part is now. You both have my sympathy and thoughts. Let me know how things are going, Good Luck. Alex.

pk's picture
pk
Posts: 192
Joined: Aug 2009

We are on the downhill slope. Only 7 more rads and 2 Erbitux. Things are going along fairly well. Pain is not as bad as he expected, but the fatigue is driving him crazy. He's a go getter and not having the energy to do much is disheartening. Also the mucous that accummulates in the course of a day is very annoying and tends to keep him up at night. Healing and getting back to eating again will be the big big task next. BUT atleast things should only get better. Hope recovery goes as well as the treatment has.
Keep on keeping on. Stay positive and active for as long as you have the energy to do so. The first 4 weeks seemed to fly by, but the last couple have been a bit slower.
PK

pk's picture
pk
Posts: 192
Joined: Aug 2009

lyolan,

You are about to embark on the journey of a lifetime. It's good to understand how tough this can be and then each little thing that comes along that isn't quite as bad as you expected, it's such a triumphant feeling.

My husband has just completed Rad #24 with 11 more to go. He also does Erbitux once a week. I have to say that this is ajourney, but it seems to be going better than we thought. Of course the next 2 weeks could get uglier, but maybe they will stay close to the same. Time will tell. At this time he is able to drink water, and does swallow some food each day. However, he chooses to take Boost through his G-tube as nothing tastes and is quite an effort. He is not taking as many pain pills as he was at the start. So far Vicadin has been the drug of choice. He uses Aquaphor lotion on his neck and lips. He rinses his mouth with sal****er and uses Biotene mouthwash. He has a terrible amount of mucous which he is constantly spitting out. He found that his electric toothbrush does a good job of loosening the mucous in the roof of his mouth. He is very fatigued and naps alot but tries to do a couple of things each day.

I am sorry for your delay in treatment. Our oncologist have coverage when they are gone so treatment and care goes on - Yeah!!!!

If you have a good support group and family, you will find this to be much more bearable. Best to you. Keep the faith - you will make it through.

PK

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

Hi, I'm on week six of radiation and chemo for BOT SCC. 39 rads and 3 regimes of cisplatin every 21 days. What everyone will tell you is that everyone has different reactions. My personal experience so far is that the first 3 weeks were very tolerable. First and foremost you should be eating everthing in sight right now, don't worry about gainng weight , just eat and eat more. The depression is normal but managble with anti-anxiety meds. Go see your Doc and tell him its difficult dealing with this right now and to give you some meds. They also help you sleep which I initially had a hard time doing because of the anxiety. The port and Peg can be scheduled for overnight surgery on the same day. The Peg hurts like hell for a day or two. Ask for pain meds. The port is no big deal. Chemo brings me to my knees for about three days every 21 days. Don't plan anything after chemo treatments, just sit home and chill out. Radiation for me was tolerable until this week when I was no longer able to eat by mouth. Pain is unbearable when food touches my right tonsil. You need to consult with a nutrionist when this happens for tube feeding. You get used to the tube, keep it taped with cloth tape which is easy to remove everyday.Clean and flush daily. If it starts to hurt around the bumpers you might have an infection or it might be in too tight, go see the Doc who put it in.The mouth sores I have kept to a minimum. Gargle often with salt and baking soda or diluted iodine. Brush often. Use flouride trays daily. The Rads for me started hurting around week six when the area has become raw and painful. use topical ointments or prescription rad ointments. Quit messing around with prjects at work, this is the fight of your life, give it your full attention. Hopefully you are at a major cancer research hospital getting treatment. Don't be afraid to ask for second opnions, Doctors expect it. Try and maintain some normacy in the things you did before cancer, take walks, workout, whatever you like doing. It helps with the depression. Take someone to treatment who can listen to doctors and later bounce stuff back at you. This whole ordeal is overwhelming. Get your cancer staged and ask your docs what it is. Ask if they tested for HPV virus. The treatment for this cancer is one of the worst but it is also survivable.

pk's picture
pk
Posts: 192
Joined: Aug 2009

Ratface,
Amen to your post. My husband is about to start week 6. He is doing very well considering this is the worst cancer treatment anyone has to go through. My husband is tough and he tries very hard to incorporate some normal activities into his day. Helps with the attitude and also the amount of pain meds he takes. His oncologists are amazed at his tolerance and the way he is managing this horrible treatment. I am so proud of him. He is able to eat and swallow very minimal amounts of food mailnly because it just plain tastes like crap - but he is willing to try something everyday. Most nutrition comes from Boost thru his g tube. I agree with your advice to focus on this and not much else. Do what you can when you can and feel like it - otherwise eat, rest, and let people take care of you and wait on you. Hang in there - you are on the downside.

pk

lyolan1
Posts: 95
Joined: Jul 2009

Hey Ratface, I just read your post. By now you are probably in week 7. I hope that things have not got worse than week 6. The peg tube was a real butt kicker. I had it done on 9/11. Chemo 9/12, Rads on 9/12. It was a tough couple of days. Tomorrow is #3. I would love to just chill and not work, however, I own the business. The monthly overhead I have to pay beforre I even open the door is astounding. Besides, I want to keep my life as normal as possible for the kids for as long as possible. I know that I will be layed low come week 4-5. I will chill then. On my chemo/rad Friday, I am not going to work. Period. It was great to hear from you. Post again when you get a chance. Alex.

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

"scared and depressed at the same time"......welcome to our world. All of us experience that exact same range of emotion. So, to every extent possible, go with it. But, don't forget my Pity Party prescription which basically says that once a day go to a quiet place and close the door and cry your eyes out, ask "why me" all you want, let it all go......but for 15 minutes, and not a second more. Then, put on your game face......go hug your kids, wife, relatives, neighbors.............and don't forget to hug and encourage the other patients that you will encounter in the waiting areas for your various treatments. The point being, allow yourself time everyday to "get it out", then move on. Read a book, watch a movie, go for a walk, call an old friend, whatever it takes to keep you mind focused on the brighter side and to keep it from going to dark places.

"food for the tube".........mine also was a PEG but I am sure nutrients are similar. Your gastroenterologist should hook you up with a nutritionist who should hopefully provide you with a minimum caloric and hydrate intake program. Keep a log of these and force yourself to stay at or above these levels. For the nutrition they will hopefully recommend a canned supplement that will be better designed for this use than the OTC stuff like Boost and Ensure, some of which have a lot of sugar and are very expensive. For prescribed supplements not only are they probably more effective but they are usually covered by insurance and cost much less (in my case with Unitedhealthcare they did not cost anything).

"pain meds"...........you may encounter several different types of discomfort in different areas. For example, your mouth will probably get to be tender and sensitive. For this, go to Walgreens and ask for Ulcerease. It is inexpensive and is sold OTC. Also, get the softest toothbrush they have and rinse your mouth with the Ulcerease a minute or so before brushing, then brush the heck out of everything to stay on top of oral hygiene.

The tube site must be cleaned regularly. Watch for redness, even puss-like secretions. Use an OTC triple antibiotic on the area and keep it exposed to the air to keep it dry. Shouldn't progress to any pain, but if it gets tender get it looked at immediately.

Throat pain.............ask your Rad Oncol for prescriptions for 1) Miracle Mouthwash (keep track of date, it is time-senstive), 2) liquid lydocaine (taken orally for extreme throat pain during swallowing), and 3) Roxicet syrup (liquid Percocet, taken through the tube, to have on hand as a "last line of defense"). They can explain the uses, and you want to use these sparingly, but don't try to be a hero and over-extend your tolerance for pain. Extreme pain or discomfort will affect healing, and you don't want that.

OK.............you are getting there. This is going to be quite a ride but one well worth taking. You will not agree with me on that for probably about 6 months or so, but you will eventually.

Hang in there and God bless you and your family.

JK

lyolan1
Posts: 95
Joined: Jul 2009

Hey JK,
Dude! Great to hear from you again. Two guys with the same disease. You will probably hear from me alot in the next weeks. It has finally started. I opted for the Erb man. The Cisplatin side effects and long term side effects were too much. I am getting 33 rads and 6-7 chemo. JK, you are a wealth of information, I really appreciate it. My oncologist said I was doing well and that I should be okay. Got to keep up the protein and the activity. I have been on the boards sporatically because I was busy with this little thing called life outside of cancer. I really had to get in some fun and get my affairs in order, at least make an attempt. I am in the thick of it now. All your posts are gold. I am going to need them. How are you doing? Catch any tuna or marlin? Summer up here was not to good in JUne and JUly, but I did hit some good days in August and September. I took advantage of them. Keep me posted. Alex.

pattynonews's picture
pattynonews
Posts: 176
Joined: Aug 2009

I hear your frustration, in Jack case his chemo has been but off due to not meeting the contidions for the trial studies, so we have decided to try another convention chemo, We are suppose to start chemo on Monday but not sure if we will be able to start because he got sick again, He has not been able to have any Chemo for 2 months now, we are just thankful that the cancer has not spread,

As for the best food well there has been a issue about how I feed Jack with some of the concern people on this site, but I will tell you the first year Jack had his tube he did not loose one pound, he did not loose any weight until a nurse changed his food, His insurance company provides us with Isosource which has 375 calories in each can, and they give us jeven which is a powder it mixes like kool-aid it is good for the muscle mass, but I also buy a proten powder at GNC for weight gain, i put a scoop in with his formula isosource and blend it, I sometimes throw an egg in there or a sccop of honey, and there is this liquid drink at the grocery store called super food, it is organic , pure vegatables and fruit, They just check his tube it has never been changed in a year so they checked for placement and infection and it was all good, you listen to your dietician, but you also have to do what is good for your body, Jack on a good day gets close to 4000 calories a day, I know people on this site say thatz crazy but like I said he never lost a pound and he has been healthy till this last month, but use your own judgement,

And it is true you have to keep on top of all the doctors it seems like one doesnt know what the other department is doing, Because the more you get into this you will have to deal with home supplies, home health care, different test and doctors, We decided with Jack he does not use his primary doctor ( well they also dropped him when they found out he had cancer they just give him his referalls, now without having to see him ) his oncologist does everything for him he has a great nurse, but we still have to stay on top on things, and sometimes you have to push for what you want and need,

I hope this helps a little,

lyolan1
Posts: 95
Joined: Jul 2009

HI pattynonews, How are things with you and Jack? I hope all is well. It is good to see you taking charge. In the end, nobody knows your body like yourself. My Gastro said "put a cheese burger ithe tube if you can, it is just a back door to the stomach". He is a cool, down to earth guy. I really liked himm and his Physicians assistant. I'm on my way now, time to git it done! This site is great for getting out your frustrations, and better when people respond and can relate. Good luck and keep me posted. Alex

Dazey
Posts: 86
Joined: Sep 2009

see my comment in the other post. Never forget that you are your own best advocate. Always feel free to question and challenge until you either get the answer you understand or know where you can get it. Dazey

lstricker
Posts: 4
Joined: Sep 2009

Hello there, sorry to heare about the scheduling issues. Seems odd. I went into the Hospital Feb 09. I had chemo hooked up 24 x 5, and recvd radtion once a day. I was in the hospital for 5 days sunday- Friday, then home for one week and back again. The 1st couple weeks i was doing OK. Still able to eat and get around just fine. I think it was about the 3rd week they put my g-tube in and that was good timing, and today i am still on the G-tube. Doc's told me to start eating,but nothing taste good. Yogurt and scrambled eggs are about it so far. My taste buds really have not come back yet. My treatment lasted 14 weeks 7 in the hospital and 7 at home. Around the 5th week i started to feel many of the effects....I had some great nurse's in the hospital and i can not say enough kind words about my wife. She saved my life !
Let me tell you........ this will effect your family in ways you never knew and will be stressful on all. Be proud of what you have and keep your head up. Must keep a positive attitude everyday and you will be just fine.

for food they should set you up. I started with 1.5, then they moved me to two cal. I also had home care nurse's came in once or twice a week. I had hydration at home too.... my wife was able to set me up just fine. the Nurse's came in to change my portal hook-up once a week.
ask for hydration at home and maybe two cal. try to keep some weight on. I lost about 70 lbs. I had extra to spare i was bout 250, now i am at 180 and feels great.

My prayers are with you
LLS

lyolan1
Posts: 95
Joined: Jul 2009

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.

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

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
Posts: 95
Joined: Jul 2009

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.

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pk
Posts: 192
Joined: Aug 2009

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

lyolan1
Posts: 95
Joined: Jul 2009

Hi PK, I feel fine except for the rash. It is starting to break out behind my ears. The rash is sore and dry. Any reccommendations on a moist cream? Does the rash plateau? Good luck this week. Alex.

pk's picture
pk
Posts: 192
Joined: Aug 2009

Bob, my hub has been using Aquaphor. Seems to work ok. But I do notice that the rad. sights are getting a little hot.The rash seems to get better as the weeks go on. Hope he can make it thru the next 5 without a burn or broken skin. Glad to hear that you are feeling ok. Be optimistic. Not everyone has the total worst case scenario. Bob has only 5 rads to go and he took our dog out to the country for run(he didn't frun but the dog did) and he even ate about a 1/2 c. of chicken noodle soup. Keep positive- set goals. Will keep you posted as we progress.
Phyllis

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

If not, you may want to. It worked great for me and for several other Survivors I know of.

JK

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

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

lstricker
Posts: 4
Joined: Sep 2009

Alex, I am sure you will lose a few more pounds before its all over. Reagarding my food i use Isosource 1.5 & also 2 cal. The 2 cal has 475 calories per 8 oz serving and i have 6 cans a day. Ask your dietician they should know and mine goes through my insurance so i do not pay.

Keep drinking as much fluids as possible and always add a little extra via g-tube.I am tired of my g-tube too, but I can not eat via my mouth enough to live on. I try a little bit each day but it taste so bad. Yogurt and eggs so far are OK.

You are very lucky to have such a supportive family..... it really makes a difference when things get tough. The last few weeks of treatment and the 1st couple weeks i was home was really stressful on all. I am doing really good now, and i have enough strength to cut the grass... big yard takes couple hours. It all takes time, but thats one thing we have now is plenty of time. My outlook on life has changed... I actually stop and smell the flowers now HA.No reason to be in a hurry... and in Chicago everyone is in a hurry.I'm like grandpa riding down the right lane doing the speedlimit....

I wish you the best, and my prayers are with you.
LLS

lyolan1
Posts: 95
Joined: Jul 2009

Istricker, Thaanks for your kind thoughts and prayers, 2 Erbitux and 5 rads down. So farso good. I am glad you are doing well. Stay in touch. Alex.

k-ky
Posts: 3
Joined: Sep 2009

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

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

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

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