Introduction
Comments
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We're Just over the hillletumwork said:Ice
That's an interesting tip- I haven't heard of doing this but it's worth a try! I'm located in Clayton which is next to Walnut Creek. I will be getting my Chemo and Radiation at John Muir Hospital since the plan and all of the scans are already complete except for one more MRI needed which will happen Monday and it's 20 minutes from my house. Stanford reviewed the plan and agrees with the treatment as it is pretty standard. Stanford offered a clinical trial that puts the Chemo before the concurrent chemo and radiation but I would have to start the whole process over at their facility thus creating another 3 week delay plus having to either battle hours of traffic each way for treatment or find temporary housing in the area away from my Wife and Daughter and Dog and support group as well as creating issues with my insurance to redo everything that has already been done. I will be receiving follow up treatment at Stanford after the initial treatment is completed since they are better equipped to do surgery for secondaries or recurrence if needed. I guess we're lucky we have so many quality Hospitals in the Bay area. I feel for those that have to travel hundreds of miles to receive the care they need. That would add an extra hardship to the battle that would be difficult to deal with on any level let alone while fighting Cancer.
John
from you in Berkeley. I guess I never thought of going to John Muir but I see that they are a great hospital! And so close for you, lucky indeed. We chose UCSF for it's location and reputation, but woah, the traffic! I hope for those who have the long distances to travel at least get to do it on long, clear stretches of highway, so much less stressful than Bay Are traffic. I mean, Stanford is just 45 miles away but at the wrong times, could take 2 or more hours each way. Not too different to S.F. We may even pick up a casual carpooler to get to use the carpool lanes.
Since you did exhaustive research on remedies, what have you decided to try? I'm just now buying all our supplies too. Is your team recommending a PEG tube or are they going to wait and see? Our rad/onc doesn't automatically recommend them because she thinks people become too dependent on them, get lazy about keeping up their swallow function, and have more problems later. After reading that so many people say that it "saved their lives" it makes us very nervous to go without. Hence, the zillion hours spent pouring over the best products/remedies that the fine people on this board recommend. I'm trying to get Muguard but may not have the time to fight the insurance comapny before treatments start. *sigh*
Good Luck getting started. I hope you're enjoying this beautiful weather while you're still feeling well.
Helen
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I get resentful towards the Dr.'s whoHelenBack said:We're Just over the hill
from you in Berkeley. I guess I never thought of going to John Muir but I see that they are a great hospital! And so close for you, lucky indeed. We chose UCSF for it's location and reputation, but woah, the traffic! I hope for those who have the long distances to travel at least get to do it on long, clear stretches of highway, so much less stressful than Bay Are traffic. I mean, Stanford is just 45 miles away but at the wrong times, could take 2 or more hours each way. Not too different to S.F. We may even pick up a casual carpooler to get to use the carpool lanes.
Since you did exhaustive research on remedies, what have you decided to try? I'm just now buying all our supplies too. Is your team recommending a PEG tube or are they going to wait and see? Our rad/onc doesn't automatically recommend them because she thinks people become too dependent on them, get lazy about keeping up their swallow function, and have more problems later. After reading that so many people say that it "saved their lives" it makes us very nervous to go without. Hence, the zillion hours spent pouring over the best products/remedies that the fine people on this board recommend. I'm trying to get Muguard but may not have the time to fight the insurance comapny before treatments start. *sigh*
Good Luck getting started. I hope you're enjoying this beautiful weather while you're still feeling well.
Helen
say that patients get "lazy" if they have a PEG tube....not a one of them have ever been through treatment, so what they perceive as "lazy" is in reality, "agony". In the year I've been on here, there are darn few who made it all the way through treatment without a PEG getting placed at some time along the way....I'd be really interested in what the percentages are of people who ended up having to get a PEG after they've started treatment...when their throats are already so sore, they can't eat....then have to endure the tube being shoved down that throat. I'd wager that the grand majority of folks ended treatment with a PEG in place.
Using a PEG isn't a cake walk....I'd far rather put food in my mouth, chew and swallow, than flush, clear, wash around, and tuck a tube....it's a LOT more work having one than not. I guess I resent the word lazy, because it is totally untrue. My Dr. placed my tube before treatment, then put the fear of God into me about losing my ability to swallow....I simply made it my business to swallow something every single day because it was in my best interest.
p
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Welcome..
Letum,
So glad you did enough research to land here! it's a wonderful place to spend time as you go through treatment, and a great place to help others through later. I am a bit slow at keeping up as of late, since I just got back to work from my husbands treatment. He was diagnosed with stage 4a tonsil cancer in October. My best advice to you (coming from a caretaker) is tell your doctors how you feel everyday when they see you and ask, how are you? they mean it. If you give them a chance to manage the symptoms, they are wonderful. If something gets out of hand, it's much harder to get it back to tolerable.
I wish you the best of luck on your journey, and ask tons of questions as they come up... these fine people here, were life savers, not only for my husband but for me as well!
Kari
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Peg tube and suppliesHelenBack said:We're Just over the hill
from you in Berkeley. I guess I never thought of going to John Muir but I see that they are a great hospital! And so close for you, lucky indeed. We chose UCSF for it's location and reputation, but woah, the traffic! I hope for those who have the long distances to travel at least get to do it on long, clear stretches of highway, so much less stressful than Bay Are traffic. I mean, Stanford is just 45 miles away but at the wrong times, could take 2 or more hours each way. Not too different to S.F. We may even pick up a casual carpooler to get to use the carpool lanes.
Since you did exhaustive research on remedies, what have you decided to try? I'm just now buying all our supplies too. Is your team recommending a PEG tube or are they going to wait and see? Our rad/onc doesn't automatically recommend them because she thinks people become too dependent on them, get lazy about keeping up their swallow function, and have more problems later. After reading that so many people say that it "saved their lives" it makes us very nervous to go without. Hence, the zillion hours spent pouring over the best products/remedies that the fine people on this board recommend. I'm trying to get Muguard but may not have the time to fight the insurance comapny before treatments start. *sigh*
Good Luck getting started. I hope you're enjoying this beautiful weather while you're still feeling well.
Helen
The Doctors at John Muir are leaving the PEG tube up to me. The Doctors at Stanford recommended a wait and see approach. I'll probably get one as soon as I can schedule the surgery. I may start treatment tomorrow instead of Monday but I won't know until Noon. I'm very familiar with Berkeley. I spent 27 years working in Emeryville in the Fire Department before going to Alameda County Fire. Lots of fun!! Supplies I've been accumulating- Biotene products for the mouth, soft toothbrushes, ACT 2 with Fluoride mouthwash, Waterpick, Nasal pulsator, salt and baking soda for a rinse solution, Clariton to take before, during and after the Nuelasta shot, Ativan, Zophran and Compazine for Nausea plus I will be getting Emend with the treatment, pill cutter and crusher, Vitamens that the Medical oncologist wants me to take to help prevent Nueropathy include: Vitamin B6, Vitamin B12 and N-acetylcysteine NAC, Magic Mouthwash, Moisturizer for skin, Immodium, Miralax, Milk of magnesia, and organizer bins to keep everything organized. Calendars and notebooks to log drug, fluid and water intake and keep track of appointments, phone numbers and side effects. Some new books to read and a new Camo blankie if needed. I'm sure that's more information than anyone wanted to hear but that's what I've accumulated so far. I know there will be more stuff including pain meds!
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Emeryvilleletumwork said:Peg tube and supplies
The Doctors at John Muir are leaving the PEG tube up to me. The Doctors at Stanford recommended a wait and see approach. I'll probably get one as soon as I can schedule the surgery. I may start treatment tomorrow instead of Monday but I won't know until Noon. I'm very familiar with Berkeley. I spent 27 years working in Emeryville in the Fire Department before going to Alameda County Fire. Lots of fun!! Supplies I've been accumulating- Biotene products for the mouth, soft toothbrushes, ACT 2 with Fluoride mouthwash, Waterpick, Nasal pulsator, salt and baking soda for a rinse solution, Clariton to take before, during and after the Nuelasta shot, Ativan, Zophran and Compazine for Nausea plus I will be getting Emend with the treatment, pill cutter and crusher, Vitamens that the Medical oncologist wants me to take to help prevent Nueropathy include: Vitamin B6, Vitamin B12 and N-acetylcysteine NAC, Magic Mouthwash, Moisturizer for skin, Immodium, Miralax, Milk of magnesia, and organizer bins to keep everything organized. Calendars and notebooks to log drug, fluid and water intake and keep track of appointments, phone numbers and side effects. Some new books to read and a new Camo blankie if needed. I'm sure that's more information than anyone wanted to hear but that's what I've accumulated so far. I know there will be more stuff including pain meds!
I lived on the Oakland/E'ville border for 13 years. Vallejo street. Never had to call the FD, though. It's a strange city with all the development, changing almost week to week, yet never really feeling like a normal city. But I have good memeories of living there. I used to love a place near me called Carrera's. And of course, The Townhouse for those pint-sized margaritas and the chicken salad. Yum.
We haven't had a our appointment with the MO yet, I guess I hadn't thought about the additional meds/vitamins that might be suggested there. Sheesh. I'm wondering about that Nuelasta shot.
I'm planning to use an app for tracking food. Usually used for weight LOSS but I'll use it be on top of protein and calories. Most sites let you fill a "fridge" with the foods you use most so it's easy to add things throughout the day. Just thought I'd suggest that although, of course, I haven't actually used it for this. Also, we may get a recommended hand-held steam inhaler for night-time moisture. It's unfortunately expensive, called my pur mist.
Is that your daughter? She's adorable. We have a 7 year old.
Best Wishes as you start your journey, we are right behind you.
Helen
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Your Area...HelenBack said:Emeryville
I lived on the Oakland/E'ville border for 13 years. Vallejo street. Never had to call the FD, though. It's a strange city with all the development, changing almost week to week, yet never really feeling like a normal city. But I have good memeories of living there. I used to love a place near me called Carrera's. And of course, The Townhouse for those pint-sized margaritas and the chicken salad. Yum.
We haven't had a our appointment with the MO yet, I guess I hadn't thought about the additional meds/vitamins that might be suggested there. Sheesh. I'm wondering about that Nuelasta shot.
I'm planning to use an app for tracking food. Usually used for weight LOSS but I'll use it be on top of protein and calories. Most sites let you fill a "fridge" with the foods you use most so it's easy to add things throughout the day. Just thought I'd suggest that although, of course, I haven't actually used it for this. Also, we may get a recommended hand-held steam inhaler for night-time moisture. It's unfortunately expensive, called my pur mist.
Is that your daughter? She's adorable. We have a 7 year old.
Best Wishes as you start your journey, we are right behind you.
Helen
I was just out in your area last month Helen....
Spent a few days up in Inverness...Point Reyes area..., absolutely beautiful.
I even had the opp to meet up with my bud on here Hawk (Steve) for a Starbucks and a few fishing stories...
JG
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Yes! I saw your son's photos!Skiffin16 said:Your Area...
I was just out in your area last month Helen....
Spent a few days up in Inverness...Point Reyes area..., absolutely beautiful.
I even had the opp to meet up with my bud on here Hawk (Steve) for a Starbucks and a few fishing stories...
JG
Really, really beautiful! I was trying to figure out what venue the wedding was at--it was sooo cool. I feel really blessed to live in such a great area with so much to offer. Now, if we could just keep that impending, overdue earthquake away.
Did you say that your son lives north of here? I think I read, but don't remember.
Helen
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awesome picture!! thanks forletumwork said:A feel good picture
awesome picture!! thanks for sharing.
God bless,
deb
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I worked at the Station onHelenBack said:Emeryville
I lived on the Oakland/E'ville border for 13 years. Vallejo street. Never had to call the FD, though. It's a strange city with all the development, changing almost week to week, yet never really feeling like a normal city. But I have good memeories of living there. I used to love a place near me called Carrera's. And of course, The Townhouse for those pint-sized margaritas and the chicken salad. Yum.
We haven't had a our appointment with the MO yet, I guess I hadn't thought about the additional meds/vitamins that might be suggested there. Sheesh. I'm wondering about that Nuelasta shot.
I'm planning to use an app for tracking food. Usually used for weight LOSS but I'll use it be on top of protein and calories. Most sites let you fill a "fridge" with the foods you use most so it's easy to add things throughout the day. Just thought I'd suggest that although, of course, I haven't actually used it for this. Also, we may get a recommended hand-held steam inhaler for night-time moisture. It's unfortunately expensive, called my pur mist.
Is that your daughter? She's adorable. We have a 7 year old.
Best Wishes as you start your journey, we are right behind you.
Helen
I worked at the Station on Hollis Street 3 blocks from Vallejo St. That's an old picture of my Daughter and Dog. The Daughter is 9 now and Drake the wonder dog is almost 11 but he still acts like he's 2. I need to move into the current century so I can use aps, texting etc. I still have a flip phone! Just can't bring myself to conform!
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pegletumwork said:A feel good picture
Letum, love, love the picture ! Beautiful baby ! Is that a Lab ? We have a 5 year old Yellow Lab that we love so much.
No one ever mentioned a Peg to me alltho they were always telling me to try not to lose so much weight . I think because I had plenty to lose and if I had lost more then they would have . I lost about 50 pounds during treatments and have lost another 20 since treatments but I can afford to lose 20 more!
So your a Fireman ! Firemen are good people ! I know this because my husband has been a vol. Fireman for over 40 years ! Sounds like you are well prepared for your journey . Please continue to come to this wonderful board and ask any questions that you may have.
Best wishes, Peggy
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Launch for HireHelenBack said:Yes! I saw your son's photos!
Really, really beautiful! I was trying to figure out what venue the wedding was at--it was sooo cool. I feel really blessed to live in such a great area with so much to offer. Now, if we could just keep that impending, overdue earthquake away.
Did you say that your son lives north of here? I think I read, but don't remember.
Helen
Helen, if you look at that boat house far left and back on the water in the distance..., that's where they were married. Big huge rustic barn like building out on the water..., we (JP, Niki and me) fixed it up really nice and they had an awesome planner that took care of a lot of the other details.
They use to live downtown SF, right on the corner acrodd from the park where the Painted Ladies are. But now they are down in Venice Beach... I look for them to move back to the SF area eventually though.
JG
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Okay, I'm not sure she used the word LAZYphrannie51 said:I get resentful towards the Dr.'s who
say that patients get "lazy" if they have a PEG tube....not a one of them have ever been through treatment, so what they perceive as "lazy" is in reality, "agony". In the year I've been on here, there are darn few who made it all the way through treatment without a PEG getting placed at some time along the way....I'd be really interested in what the percentages are of people who ended up having to get a PEG after they've started treatment...when their throats are already so sore, they can't eat....then have to endure the tube being shoved down that throat. I'd wager that the grand majority of folks ended treatment with a PEG in place.
Using a PEG isn't a cake walk....I'd far rather put food in my mouth, chew and swallow, than flush, clear, wash around, and tuck a tube....it's a LOT more work having one than not. I guess I resent the word lazy, because it is totally untrue. My Dr. placed my tube before treatment, then put the fear of God into me about losing my ability to swallow....I simply made it my business to swallow something every single day because it was in my best interest.
p
but she she's a tough-love sort of doctor that's for sure. She says that only 10% of her head and neck patients use the peg. I will ask again if that considers those who do chemo as well. My husband doesn't have any weight to lose and I find it very concerning. I am confident that if we ask for it, she will comply. We'll see what the chemo guy says. We have a little time.
I love reading your comments on this board. I'm a big-time lurker and am endlessly impressed with your (and everyone else's) advice and generous support.
When do we hear about your scan results? I'm keeping my fingers crossed for NED.
Helen
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My Sweetheart
Hello everyone!
I imagine you will be my best friends throughout the next few months. My husband was recently diagnosed with tonsil and lymphnode cancer. We go to Stanford Hospital on Monday to find out the plan for his treatment. We've been told by the referring doctor that he will have surgery and radiaton but we are not sure in what order. I'm so scared for him and have searched the boards for answers. This forum has been the best and appears to be honest with answers. I need to know everything possible I can do to help him. We have grown children but it will pretty much be me taking care of him. Any questions we should take with us on Monday? We have some but since we are so new to this I'm sure you could give us a better idea of what to ask. Thank you, thank you.... and God Bless you all. You will be my examples to him when he gets frustrated and beaten down. I love how positive and strong you all are.
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i'm sorry you ha ve to beChristine Gabrielle said:My Sweetheart
Hello everyone!
I imagine you will be my best friends throughout the next few months. My husband was recently diagnosed with tonsil and lymphnode cancer. We go to Stanford Hospital on Monday to find out the plan for his treatment. We've been told by the referring doctor that he will have surgery and radiaton but we are not sure in what order. I'm so scared for him and have searched the boards for answers. This forum has been the best and appears to be honest with answers. I need to know everything possible I can do to help him. We have grown children but it will pretty much be me taking care of him. Any questions we should take with us on Monday? We have some but since we are so new to this I'm sure you could give us a better idea of what to ask. Thank you, thank you.... and God Bless you all. You will be my examples to him when he gets frustrated and beaten down. I love how positive and strong you all are.
i'm sorry you ha ve to be here but you're in a good place. i'm sure many will help you with quesrtions. u and your hubby will be in my prayers.
God bless,
debbiejeanne
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MugardHelenBack said:We're Just over the hill
from you in Berkeley. I guess I never thought of going to John Muir but I see that they are a great hospital! And so close for you, lucky indeed. We chose UCSF for it's location and reputation, but woah, the traffic! I hope for those who have the long distances to travel at least get to do it on long, clear stretches of highway, so much less stressful than Bay Are traffic. I mean, Stanford is just 45 miles away but at the wrong times, could take 2 or more hours each way. Not too different to S.F. We may even pick up a casual carpooler to get to use the carpool lanes.
Since you did exhaustive research on remedies, what have you decided to try? I'm just now buying all our supplies too. Is your team recommending a PEG tube or are they going to wait and see? Our rad/onc doesn't automatically recommend them because she thinks people become too dependent on them, get lazy about keeping up their swallow function, and have more problems later. After reading that so many people say that it "saved their lives" it makes us very nervous to go without. Hence, the zillion hours spent pouring over the best products/remedies that the fine people on this board recommend. I'm trying to get Muguard but may not have the time to fight the insurance comapny before treatments start. *sigh*
Good Luck getting started. I hope you're enjoying this beautiful weather while you're still feeling well.
Helen
Helen, Go to the mugard.com webpage and call the contact phone number shown for the company rep (I talked to Bonnie at (214) 905-5100) although I do not know if the number is still the same or if Bonnie is still there since I contacted her in July 2012 but there is a "contact us" area on the website. The company that makes Mugard checked with my son's insurance company and when the insurance company would not cover, the Mugard company provided it to my son free of charge. The company rep was wonderful about getting the Mugard quickly delivered to my son in time for him to start using it on his very first day of rad tx. Your Rad Onc will have to fill out and fax the online prescription form provided on the website since Mugard is not available at most pharmacies and will need to be shipped to you directly from the company. My son's Rad Onc had not heard of Mugard but was willing to let my son try it (which is why the Mugard company is willing to cover the cost ... in order to increase awareness and hopefully get insurance companies to start covering it). My son used the Mugard faithfully 5 to 6 times each day during treatment and he did not get any mouth sores. His Rad Onc was so impressed with the effectiveness of the Mugard that he is now prescribing it for all of his oral cancer patients.
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-double postHelenBack said:We're Just over the hill
from you in Berkeley. I guess I never thought of going to John Muir but I see that they are a great hospital! And so close for you, lucky indeed. We chose UCSF for it's location and reputation, but woah, the traffic! I hope for those who have the long distances to travel at least get to do it on long, clear stretches of highway, so much less stressful than Bay Are traffic. I mean, Stanford is just 45 miles away but at the wrong times, could take 2 or more hours each way. Not too different to S.F. We may even pick up a casual carpooler to get to use the carpool lanes.
Since you did exhaustive research on remedies, what have you decided to try? I'm just now buying all our supplies too. Is your team recommending a PEG tube or are they going to wait and see? Our rad/onc doesn't automatically recommend them because she thinks people become too dependent on them, get lazy about keeping up their swallow function, and have more problems later. After reading that so many people say that it "saved their lives" it makes us very nervous to go without. Hence, the zillion hours spent pouring over the best products/remedies that the fine people on this board recommend. I'm trying to get Muguard but may not have the time to fight the insurance comapny before treatments start. *sigh*
Good Luck getting started. I hope you're enjoying this beautiful weather while you're still feeling well.
Helen
edit to delete double post
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Christine Gabrielle - try new thread as introductionChristine Gabrielle said:My Sweetheart
Hello everyone!
I imagine you will be my best friends throughout the next few months. My husband was recently diagnosed with tonsil and lymphnode cancer. We go to Stanford Hospital on Monday to find out the plan for his treatment. We've been told by the referring doctor that he will have surgery and radiaton but we are not sure in what order. I'm so scared for him and have searched the boards for answers. This forum has been the best and appears to be honest with answers. I need to know everything possible I can do to help him. We have grown children but it will pretty much be me taking care of him. Any questions we should take with us on Monday? We have some but since we are so new to this I'm sure you could give us a better idea of what to ask. Thank you, thank you.... and God Bless you all. You will be my examples to him when he gets frustrated and beaten down. I love how positive and strong you all are.
I found your "Hello everyone!" post here at the bottom of this thread that is several days old and started by another new member. It would be a good idea to start an entirely new thread just for yourself so that your questions do not get lost way down here. If you click on "Topic" at the upper left on the forum page and then click on "Start New Topic", you will be able to start a new conversation. It is ok to start a new topic as often as you like, and is the best way to focus the forum on what you want to ask or share.
Hopefully, you will have multiple opportunities to ask your medical team questions since the pre-treatment doctor appointments are usually numerous. Write down questions as they occur to you and keep the list with you so that you can refer to it. If you don't understand an answer the first time, ask for a clearer explanation. The nurses are usually the best ones to approach with any issues that you are confused about and they are the ones who will guide you through this. Make sure you tell the nurse when you are having pain or a flair of other symptoms. They have ways to help you but need to know before they can act.
0
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