Take Charge of your own care/ Update
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.
Comments
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Some answers
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.0 -
One More Thing
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 norm0 -
lyolan,
You are about to
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 saltwater 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.
PK0 -
lyolan,
You are about to
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 saltwater 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.
PK0 -
Answersnewbride said:Some answers
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.
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.0 -
on week sixpk said:lyolan,
You are about to
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 saltwater 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
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.0 -
Ratface,ratface said:on week six
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.
Amen to your post.
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.
pk0 -
A few quick comments
"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.
JK0 -
I hear your frustration, in
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,0 -
same time, same journeylyolan1 said:Answers
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.
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. Dazey0 -
Take Charge of your own care/ Update
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
LLS0 -
CongratulationsDazey said:same time, same journey
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
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.
JK0 -
Same JourneyDazey said:same time, same journey
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
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.0 -
Delay/Treatmentpk said:lyolan,
You are about to
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 saltwater 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
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.0 -
Radsratface said:on week six
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.
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.0 -
Alexlyolan1 said:Delay/Treatment
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.
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.
PK0 -
Carejkinobay said:A few quick comments
"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
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.0 -
Take Charge/ updatepattynonews said:I hear your frustration, in
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,
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. Alex0 -
Taking Charge/carelstricker said:Take Charge of your own care/ Update
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
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.0
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