Salivary Glands Done, nada. Help
3 yrs out from treatment. 7 weeks Rad & Chemo. Finally lost the Salivary Glands, next will be the thyroid. Already on meds for that. This extremely dry mouth is driving my insane. What the hell did that Rad Dr dose Me with. Ton of stomach issues & keeping food in. Now losing My Favorite ENT, moving to new state. So in 4 months get the joy of a new one who doesn’t know me. Funny traveled around Europe for 3 yrs with an excess amount of energy& Cancer. Walked 3 miles daily. Now I just exist in bed. Mine was dime size on the left tonsil, no lymph involved. Why am I so bad. Seriously, wish I would just die. No saliva causes me to drink too much & irrates & drops a low sodium issue developed from Chemo. Already 1 stroke. Only 61 and going crazy. Don’t want to fight any more. So exhausted.
Comments
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One size doesn't fit all
DD,
I am sorry to read that you are having many issues, but hopefully you will adjust to the "New Normal" you and all of us here find ourselves dealing with.
Like you, my Thyroid is toast, taking meds for that now for many years. The right dose of Levothyroxine helps my energy level. My Saliva glands are toast as well, I've had severe dry mouth since the end of my Radiation treatments.( 14yrs now ) I was hoping I would regain some moisture in my mouth, but no such luck. I even tried Accupuncture which worked on others that I have talked with but not for me.
What to do about it, well, like many, I carry a water bottle around with me daily, sip Decafe coffee with French Vanilla creamer in it most of the day since it seems to coat my mouth well. Like ERomanO above, I chew Dentene Artic Ice gum when I am active with chores around the house. I can't do what I did years ago, but I will not stop doing anything because of my newer limitations. It just takes me a little longer.
I found that when I am more flexible with my chore schedule, I do better. It all depends on the weather as to what chores I tackle each day, inside verses outside. It also depends on the amout of energy I have after breakfast. Nothing is written in stone for me anymore. I probably could eat better but I eat what I can get down easily.
Keep looking for what works best for you, you can do this.
My Best to You and Everyone Here
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What kind of help are you looking for?
[Content removed by CSN Support Team]
I know how aggravating the dry mouth is. The worse thing about dry mouth is when my throat gets dry, so I do whatever I can not to let that happen. I have found that ACT DRY MOUTH Moisturizing gum works thr best for quick relief. Xylimelt tablets (one on each side) are good while sleeping, walking or other exercising. I find that my mouth gets a little more dry when I'm doing intense workouts, probably because I have a tendancy to breath through my mouth. Biotene oral rinse a few times a day also. I no longer drink dry red wine (my favorite) because it causes severe dry mouth. I still drink beer, but only lager, and only (for the most part) on weekends. Eating foods that are either a little spicy, tart, or other wose flavorful seems to help a bit. There is always a water bottle in my car.
I know, dry mouth really stinks, but I either deal with it or I can lament having it and never go out in public again. I think I'll deal with it, play the waiting game and get on with my life.
Last time I had a follow-up with my oncologist docs/nurse practitioners it was mentioned that my thyroid was okay, but borderline. So I may have to go on thyroid meds as well. But people I know that take them say it's no big deal.
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ERomanOERomanO said:What kind of help are you looking for?
[Content removed by CSN Support Team]
I know how aggravating the dry mouth is. The worse thing about dry mouth is when my throat gets dry, so I do whatever I can not to let that happen. I have found that ACT DRY MOUTH Moisturizing gum works thr best for quick relief. Xylimelt tablets (one on each side) are good while sleeping, walking or other exercising. I find that my mouth gets a little more dry when I'm doing intense workouts, probably because I have a tendancy to breath through my mouth. Biotene oral rinse a few times a day also. I no longer drink dry red wine (my favorite) because it causes severe dry mouth. I still drink beer, but only lager, and only (for the most part) on weekends. Eating foods that are either a little spicy, tart, or other wose flavorful seems to help a bit. There is always a water bottle in my car.
I know, dry mouth really stinks, but I either deal with it or I can lament having it and never go out in public again. I think I'll deal with it, play the waiting game and get on with my life.
Last time I had a follow-up with my oncologist docs/nurse practitioners it was mentioned that my thyroid was okay, but borderline. So I may have to go on thyroid meds as well. But people I know that take them say it's no big deal.
Mine are toast and going on 4 yrs & a surgery for them for repair they are done toast. Will no longer have any Saliva. My problem is My needing fluid constantly compounds a Sodium Condition where My sodium drops extremely low & have already had 1 stroke from it. I fond old tests from during Chemo & My Sodium was normal but continued to decline. unfortunately I guess My Dr didn’t care enough to address it before it went way below normal now for life. I now have to take 6-8 sodium pills daily & eat sodium enriched foods or dinners to try to keep it up enough not to have to spend 3 days & money out of our pocket in the hospital just to get a Saline/ hydration bag to raise it it up to My new normal which should be 125, hard to keep up tho. Read about it, very scary. It’s like water poisoning hense why your not suppose to drink much fluid. Try that with extreme dry mouth & 6-8 salt pills a day. This has in turn caused since last year a stomach issue so allot of dirrahea & pain. Losing weight back to 110 lbs after finally reaching finally 120 before stomach issues started. I am 5’6”. Went down to 98 during treatment & on feeding tube. All this Dr didn’t address & wont help now. If I could get IV infusion in his lab maybe at least every 2 weeks I wouldn’t have to take all the salt that of course also messes with My Blood pressure. He won’t due to liability issues. Should be mointered in Hospita. I know many friends that got these bags during their treatment. My Dr has a IV Lab in his building & Lab, he is in a Cancer Center. He finally broke down once and did it over a year ago before My stroke and I felt reenergized & so good. When my sodium is up I feel better. Not even My Kidney Dr will help. Just so frustrating. Was reaching out to find someone going what I am was why I asked for help.
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MarineE5MarineE5 said:One size doesn't fit all
DD,
I am sorry to read that you are having many issues, but hopefully you will adjust to the "New Normal" you and all of us here find ourselves dealing with.
Like you, my Thyroid is toast, taking meds for that now for many years. The right dose of Levothyroxine helps my energy level. My Saliva glands are toast as well, I've had severe dry mouth since the end of my Radiation treatments.( 14yrs now ) I was hoping I would regain some moisture in my mouth, but no such luck. I even tried Accupuncture which worked on others that I have talked with but not for me.
What to do about it, well, like many, I carry a water bottle around with me daily, sip Decafe coffee with French Vanilla creamer in it most of the day since it seems to coat my mouth well. Like ERomanO above, I chew Dentene Artic Ice gum when I am active with chores around the house. I can't do what I did years ago, but I will not stop doing anything because of my newer limitations. It just takes me a little longer.
I found that when I am more flexible with my chore schedule, I do better. It all depends on the weather as to what chores I tackle each day, inside verses outside. It also depends on the amout of energy I have after breakfast. Nothing is written in stone for me anymore. I probably could eat better but I eat what I can get down easily.
Keep looking for what works best for you, you can do this.
My Best to You and Everyone Here
Hello and thank you for responding to My post. I am so sorry you are going thru this also. Especially when so many on this site regain something. Any little bit helps. First since Treatments I do not respond well to prescription meds so the Levothyroxine tho looks good on lab reports does nothing for My energy and I am always cold. Hard when you live in Florida and now we are already going entering into 90s weather and I’m in long sleeves. Have to carry a lightweight sweater also anywhere I go due to places over air conditionin. Don’t like visiting friends or family in colder temps since I can never feel warm. Use to live up North and know how to layer but I have tried but end up miserable the whole time visiting and dread going outside. I also developed Sodium issue during treatments was I just explained to ERomeO above. So yes as much as I try to move forward each day brings another issue to deal with. So exhausted and with NO quality of life, don’t really care if I exist.
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My most sincere apologiesDrivingdaisy said:ERomanO
Mine are toast and going on 4 yrs & a surgery for them for repair they are done toast. Will no longer have any Saliva. My problem is My needing fluid constantly compounds a Sodium Condition where My sodium drops extremely low & have already had 1 stroke from it. I fond old tests from during Chemo & My Sodium was normal but continued to decline. unfortunately I guess My Dr didn’t care enough to address it before it went way below normal now for life. I now have to take 6-8 sodium pills daily & eat sodium enriched foods or dinners to try to keep it up enough not to have to spend 3 days & money out of our pocket in the hospital just to get a Saline/ hydration bag to raise it it up to My new normal which should be 125, hard to keep up tho. Read about it, very scary. It’s like water poisoning hense why your not suppose to drink much fluid. Try that with extreme dry mouth & 6-8 salt pills a day. This has in turn caused since last year a stomach issue so allot of dirrahea & pain. Losing weight back to 110 lbs after finally reaching finally 120 before stomach issues started. I am 5’6”. Went down to 98 during treatment & on feeding tube. All this Dr didn’t address & wont help now. If I could get IV infusion in his lab maybe at least every 2 weeks I wouldn’t have to take all the salt that of course also messes with My Blood pressure. He won’t due to liability issues. Should be mointered in Hospita. I know many friends that got these bags during their treatment. My Dr has a IV Lab in his building & Lab, he is in a Cancer Center. He finally broke down once and did it over a year ago before My stroke and I felt reenergized & so good. When my sodium is up I feel better. Not even My Kidney Dr will help. Just so frustrating. Was reaching out to find someone going what I am was why I asked for help.
I made some inappropriate comments, and I am truly sorry.
Your condition sounds very complicated... well beyond simply treating symptoms of dry mouth. Have you tried seeing a different doctor?
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ERomeOERomanO said:My most sincere apologies
I made some inappropriate comments, and I am truly sorry.
Your condition sounds very complicated... well beyond simply treating symptoms of dry mouth. Have you tried seeing a different doctor?
Thank you for your reply & you were fine. I was just dealt. Really bad hand. Unfortunately most Drs don’t seem to deal with what We do nor do My family & ffiends. Most either we’re lucky & got it cut out no treatment or maybe just chemo. And our Cancer is one of the worse foe side effects. We are the True Warriors, not just Survivors. I am thinking to head up to Moffitt in Tampa. Have researched & My ENT is out of ideas. The surgeon who opened My ducts I was close to the end 2 yrs ago. But now nothing. The Sodium Issue is scary & not much help. Every time I have gone in the Hospital for help I have to check Myself out by Day 3 due to they keep screwing up My body. Don’t give Me all My meds & I can’t take My Natural products. Their food makes Me very sick. Marine5 was helpful he’s 14 yrs with No Saliva, that’s a Marine for you, I’m going insane. Thank you tho for your help.
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dry mouthERomanO said:What kind of help are you looking for?
[Content removed by CSN Support Team]
I know how aggravating the dry mouth is. The worse thing about dry mouth is when my throat gets dry, so I do whatever I can not to let that happen. I have found that ACT DRY MOUTH Moisturizing gum works thr best for quick relief. Xylimelt tablets (one on each side) are good while sleeping, walking or other exercising. I find that my mouth gets a little more dry when I'm doing intense workouts, probably because I have a tendancy to breath through my mouth. Biotene oral rinse a few times a day also. I no longer drink dry red wine (my favorite) because it causes severe dry mouth. I still drink beer, but only lager, and only (for the most part) on weekends. Eating foods that are either a little spicy, tart, or other wose flavorful seems to help a bit. There is always a water bottle in my car.
I know, dry mouth really stinks, but I either deal with it or I can lament having it and never go out in public again. I think I'll deal with it, play the waiting game and get on with my life.
Last time I had a follow-up with my oncologist docs/nurse practitioners it was mentioned that my thyroid was okay, but borderline. So I may have to go on thyroid meds as well. But people I know that take them say it's no big deal.
Hi , Today marks 1 year of radiation and chemo being done for Adneiod cysts car. We need help with food I have tried everything Looking for reciepes for dinners or any suggestions, My husband drinks 3 ensures every meal , he can swallow but no salvia makes alot things impossible. Please Help
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Moffitt in TampaDrivingdaisy said:ERomeO
Thank you for your reply & you were fine. I was just dealt. Really bad hand. Unfortunately most Drs don’t seem to deal with what We do nor do My family & ffiends. Most either we’re lucky & got it cut out no treatment or maybe just chemo. And our Cancer is one of the worse foe side effects. We are the True Warriors, not just Survivors. I am thinking to head up to Moffitt in Tampa. Have researched & My ENT is out of ideas. The surgeon who opened My ducts I was close to the end 2 yrs ago. But now nothing. The Sodium Issue is scary & not much help. Every time I have gone in the Hospital for help I have to check Myself out by Day 3 due to they keep screwing up My body. Don’t give Me all My meds & I can’t take My Natural products. Their food makes Me very sick. Marine5 was helpful he’s 14 yrs with No Saliva, that’s a Marine for you, I’m going insane. Thank you tho for your help.
I checked and they are a top 10 rated hope you go and can find some answers there. Sometimes you just have to keep trying different doctors and or cancer centers and you run into someone who can really help you get a handle on your situation. Your situation sounds hard to manage because one thing works against the other. But hang in there and keep trying I know it's tough to wake up and feel you're in a struggle every day but many of us are and some are worse off than others. God Bless
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Cold handsDrivingdaisy said:MarineE5
Hello and thank you for responding to My post. I am so sorry you are going thru this also. Especially when so many on this site regain something. Any little bit helps. First since Treatments I do not respond well to prescription meds so the Levothyroxine tho looks good on lab reports does nothing for My energy and I am always cold. Hard when you live in Florida and now we are already going entering into 90s weather and I’m in long sleeves. Have to carry a lightweight sweater also anywhere I go due to places over air conditionin. Don’t like visiting friends or family in colder temps since I can never feel warm. Use to live up North and know how to layer but I have tried but end up miserable the whole time visiting and dread going outside. I also developed Sodium issue during treatments was I just explained to ERomeO above. So yes as much as I try to move forward each day brings another issue to deal with. So exhausted and with NO quality of life, don’t really care if I exist.
I go through spells of feeling cold, especially my hands. I attribute that to my neuropathy, or whatever is causing the neuropathy (which is still inconclusive). I live in NE Ohio and I have found myself wearing gloves more during cool weather than I normally would, but eventually I just started trying to ignore the cold feeling because it was just that - a feeling. It wasn't as though I was suffering from hypothermia or that circulation was cut off.
As to your sodium (electrolyte) deficiency, maybe a nutritionist can help you there. I'm not sure if I am understanding the connection between that and the dry mouth unless you're talking about having to ingest salty foods to try to get it stabalized. I would think taking salt tablets would get the job done without drying your mouth out more. I would also think just trying different things (i.e. Biotene products) to give you a little relief from dry mouth would be sufficient to get by.
The other day I was telling my dentist about how eating foods with citrus causes my saliva glands to get that intense feeling, like they are trying to go into hyper drive. He said that was a "parasympathetic respose". My point here is that certain foods tend to be less drying and even have a tendancy to promote some saliva production. The bonus here is that you get to eat lots of foods as you experiment.
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Sorry for your husband's discomfortrhudew said:dry mouth
Hi , Today marks 1 year of radiation and chemo being done for Adneiod cysts car. We need help with food I have tried everything Looking for reciepes for dinners or any suggestions, My husband drinks 3 ensures every meal , he can swallow but no salvia makes alot things impossible. Please Help
Many people here have talked to looking for "foobricants" - foods that are also lubricants - to help with dry mouth symptoms. For me that means sauces, mayo, olive oil, etc. I really don't eat much bread anymore, but I have developed a habit of eating two English muffin halves with PB&J with my coffee every morning for breakfast. As I'm fixing the PB&J I'll put a little dab of plain peanut butter in my mouth (which would go against the idea of lubricant foods) to use as a gage to see how much saliva I'm able to produce. I'm not sure if it's promoting saliva production, but possibly because I may have to work at it for a bit but it eventually gets diluted. So sometimes it just takes time to eat. I know that's probably not what you want to hear.
You may want to try doing some key word searches from the main Head & Neck Cancer page. Search for words like "dry mouth", "recipes", or anything that you can think of that might take you to some helpful information for meals for your husband.
I wish you all the best.
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Marine E5Drivingdaisy said:MarineE5
Hello and thank you for responding to My post. I am so sorry you are going thru this also. Especially when so many on this site regain something. Any little bit helps. First since Treatments I do not respond well to prescription meds so the Levothyroxine tho looks good on lab reports does nothing for My energy and I am always cold. Hard when you live in Florida and now we are already going entering into 90s weather and I’m in long sleeves. Have to carry a lightweight sweater also anywhere I go due to places over air conditionin. Don’t like visiting friends or family in colder temps since I can never feel warm. Use to live up North and know how to layer but I have tried but end up miserable the whole time visiting and dread going outside. I also developed Sodium issue during treatments was I just explained to ERomeO above. So yes as much as I try to move forward each day brings another issue to deal with. So exhausted and with NO quality of life, don’t really care if I exist.
Can you be a little more specific in how you deal daily to not go insane. Been stuck drinking hot tea, mushrooms coffee, some water, mostly clear Propel since anything sweet tasting or sugary tastes horrible & too much beer, Miller Lite only, just for a change of taste. Been stuck with those & such boredom has set in. I have to give up the beer. No dairy products, soy, almond, orange due to food intolerances. Rice milk only if I want a small bowl of cereal Just thought maybe something other than what you mentioned helps you get through the day without drinking too much fluid. Too much fluid makes Me pee hence there goes Sodium. I carry Propel everywhere & order by the case since it has sodium in it. My husband though maybe something may help by asking you how you have made it 14 yrs with such dry mouth & No sodium issues. This is similar to water poisoning. Explains why sodium drops & what happens if it gets too low. Mine was 109 when I had the stroke. Just looking for any new ideas. So many bring up things but when I even had just a small bit of saliva it helped. Nothing is a game changer and I hope this doesn’t happen to anyone else. I had full saliva all thru treatment & into recovery. Was getting back to living life extremely positive but one morning woke to clogged saliva ducts. ENT said probably due to damage to the ducts so it was backing up & not coming out. He recommended a top ENT Specialist in Baton Rouge La for treatment. He did surgery & it opened them but all that came out was as he put it Chemo Saliva. Thick mucus, ropey, foul tasting gunk. Was verified by other Drs. But it was a little something so could suck on a Lemon drop & use zylmelts at night since they would disolove. Now they won’t, just stick. Do use all the Biotine products (going broke buying those) & have tried so many others but preference the taste of the Biotine. Thank you for any help, Lisa
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Hello rhudewrhudew said:dry mouth
Hi , Today marks 1 year of radiation and chemo being done for Adneiod cysts car. We need help with food I have tried everything Looking for reciepes for dinners or any suggestions, My husband drinks 3 ensures every meal , he can swallow but no salvia makes alot things impossible. Please Help
I never drank any Ensure or Boost due to all the Chemicals in them. I found a great Organic ready made shake called Orgain at Walgreens & CVS & Whole food. Put that down My feeding tube. Drank it after the tube came out & would still except it has a small amount of dairy that upsets my stomach now due to intolerances. Whole other problem irritated by treatments. My Natural Dr highly recommends them & drinks them himself. I started very slow with mashed potatoes with a special vegan butter, or gravy. Found sauce has to be on everything. George’s Aloe water helps throat & stomach but to Me no horrible taste. Morning & night. Whole Foods or Amazon carries it. My taste buds are also gone so many foods taste funky now. Lean Crusine Fett Alfredo with Chicken & broccoli when I could handle dairy was easy. Slid down. One guy I know did a chicken noodle soup from a gourmet market here with either small bites .of chicken breast.. or pulled dark meat off bones & blended in a bullet so it was mushy & soft every day for lunch & dinner for 2 yrs. He has very little saliva & not much has come back in 4 yrs. Maybe some bone broth, or homemade chicken noodle soup. A buffet is good so he can try little bit to find if anything he can eat. I tried everything. I really miss My Chicken Fett. Chicken Marsala in a light sauce give the mushrms to my husband, can’t stand them. Light sauces are the best. I can do Very rare BoarsHead Roast Beef wrapped in lettuce, no bread with a boarshead pickle spear ( need my salt fix) but that came later in eating. Hope These can help some. If you have a Whole Foods maybe ask them & explain the situation & see if they can help you find something. I have to explain at any restaurant My issues & they really try to help Me with what is on the menu. Often the chefs surprises Me with something I can get down. It’s trial & error. Apple sauce, yogurt, ice cream. Good luck and may your saliva return. Took another friend 2 yrs to get it almost back to normal. Hang in, One Day at a time!
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DrivingDaisy, sounds like we
DrivingDaisy, sounds like we were hit in the same area, left tonsil SSC. Although it metastisized to one node, MD Anderson now considers that a stage I. I don't have the complex medical history you have, but my throat is always dry and has neuralgia (?)...feels "wooden"... from the radiation. My salivary glands are ok, but taste buds really never came back so food doesn't taste very good. I now eat to live; I used to live to eat...loved good food. So it's depressing, these changes. Exercise is very important for me, and at times i've taken antidepressants. Chemo brain is certainly an issue as well. Slowed mental speed, total blank occasionally on remembering past events. Seems like a wall between me and my memory. Have to be careful not to aspirate liquids. Family, of course, and work have helped. I retire soon, so I hope that's not too stressful.
I hope you can find a path that fits for you and your needs. You've been through a lot...treatment really was brutal! You deserve the BEST! Good luck!
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dry mouth and depression
and burns my maouh
I had a great radiologist and he was abele to leave me one saliva gland. It produces enough so if I do not talk or breath through my mouth I can tolerate it. not wet but a little better then totally dry. Someone here said sweets taste really bad, I have the same problem so fresh fruit is out. Here are a few things that are sweet that taste good. Yoohoo (funny but real chocolate taste bad) so I drink about 5 bottles a day... DO NOT USE CANS, all you taste is metal. I make a thick with milk, vanilla ice-cream and banana. I seem to be above to eat banana, it is just ok but I can eat them. I can eat white bred as long as I use cream cheese on it and drinking coffee or youhoo with it. Also this is strange but Hot Dogs seem to taste ok and with a little yellow mustard (I cannot tolerate any thing spice but that) on a whit hot dog bun. Sometimes I have hot dogs and baked beans. Now for my issue, it is a little over 4 months since end of radiation and chemo, I am in a deep depression, hard to get out of bed or work and I must work. Before the T&M cancer over 5 years I had 8 heart attacks. I am just 63 this June and it is so hard, would love any advice to break the hopeless felling PS: as of last month PET scan shows cancer free
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Four months is not a long
Four months is not a long time in H&N cancer recovery time. At the four month mark I was getting bummed because the neuropathy that began at around thr 3 month mark was getting worse. I was getting out and about, but dry mouth maintenance was something I really had to stay on top of. I am now 1 month shy of the one year mark and things have gotten better - neuropathy has eased up considerably and dry mouth although ongoing is less of a nuisance. I sometimes find myself leaving the house and forgetting a bottle of water (but I at least always keep some Xylimelts and Act dry mouth lozenges in the car). I guess what I'm saying is that there is always the possibility that things will get better, even if only a little. A friend of mine used to tell me that I would have to get used to a "new normal" but I didn't want to hear it. I wanted to be completely normal again. Well, I have accepted that new normal and it isn't the end of thr world. You and I are about the same age (tomorrow I'll turn 63) and I look at it this way - I accept how things are and I'll continue to try to enjoy my life as much as possible, even with the annoyances (note: when I am having fun I don't even think about those annoyances). If down the road things improve even more then that's a bonus!
I'm sorry to hear about the heart attacks. I hope those will be a thing of the past.
Best wishes to you!
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It May Not BeAlanS said:dry mouth and depression
and burns my maouh
I had a great radiologist and he was abele to leave me one saliva gland. It produces enough so if I do not talk or breath through my mouth I can tolerate it. not wet but a little better then totally dry. Someone here said sweets taste really bad, I have the same problem so fresh fruit is out. Here are a few things that are sweet that taste good. Yoohoo (funny but real chocolate taste bad) so I drink about 5 bottles a day... DO NOT USE CANS, all you taste is metal. I make a thick with milk, vanilla ice-cream and banana. I seem to be above to eat banana, it is just ok but I can eat them. I can eat white bred as long as I use cream cheese on it and drinking coffee or youhoo with it. Also this is strange but Hot Dogs seem to taste ok and with a little yellow mustard (I cannot tolerate any thing spice but that) on a whit hot dog bun. Sometimes I have hot dogs and baked beans. Now for my issue, it is a little over 4 months since end of radiation and chemo, I am in a deep depression, hard to get out of bed or work and I must work. Before the T&M cancer over 5 years I had 8 heart attacks. I am just 63 this June and it is so hard, would love any advice to break the hopeless felling PS: as of last month PET scan shows cancer free
All depression your body and you beat up from the treatments and it can take a while just to feel normal and decent again. So some of your depression feelings may not be all depression. I was very tired for a long time and it was all I could do for awhile just to get up and do some basics each day. My radiation docs nurse told me right off the bat that I might as well figure a year of my life dealing with treatment and recovery.
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