CancerCompass message board discussion started by gulfgirl on 3/16/2008 http://www.cancercompass.com/message-board/message/all,22045,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Thank you everyone!  I'm not sure how to get this posted within the same group, but my husband is the patient, but I'm doing all the reading about how he can get and stay as comfortablea as possible through all this and beyond.  You are all so helpful and I really appreciate you. Not to mention it is so heartwarming to her from so many people who made it through to recovery.  As I type, he is getting up saying today is the worst yet - he couldn't breathe.  Time to implement some of your suggestions.  Did I say Thank you????  Gwen gulfgirl Sun, 16 Mar 2008 00:00:00 GMT Hello, My husband has the same problem during treatment - he felt like his throat was closing and he couldn't breath at some points. A lot of mucas. He kept "barf bags" - sorry so indelicate ... such as cancer :) by the bed and spit into them day and night. He also gargled salt water, magic mouth wash and took glutimine (amino acid powder from the health food store)How far along is your husband in his treatment? Julie21 Sun, 16 Mar 2008 00:00:00 GMT  On 3/16/2008 Julie21 wrote:Hello, My husband has the same problem during treatment - he felt like his throat was closing and he couldn't breath at some points. A lot of mucas. He kept "barf bags" - sorry so indelicate ... such as cancer :) by the bed and spit into them day and night. He also gargled salt water, magic mouth wash and took glutimine (amino acid powder from the health food store)How far along is your husband in his treatment?Julie, thank you so much for your message, and for the tips. I'll pick up some glutimine today.  Today was his 19th of 30 radiation treatments. He goes daily, five days a week and once a week for cetuximab.  Because he is in good physical shape - other than cancer;) - he thought he'd be one of those people to 'breeze' through treatment, so he's having a bit of a rough time accepting how really awful it is.  He's lost 6 lbs, and needs to increase his liquids.  So this morning he decided to really get with the program.  I actually drove him to a business appointment, and all went well and then he insisted on choking down vegetable beef soup at his favorite local soup & sandwich restaurant!  So now he figures he's earned a good rest for the rest of the day ;)   He's finding that macaroni and scrambled eggs (cooked in butter, unbeknowns to him)  and junket custard are great, and I make excellent smoothies. The radiation nurse said that lots of cancer patients really like carrot juice.  When we bought an expensive vitamixer I thought, "what an expensive blender".  Who knew it would be my best friend!   At least my husband has only one side of his tonsil affected. It's the sore tongue from radiation that gets him more than anything else & the blobs of mucus & bloody noses.  We're going to add a humidifier to the mix, maybe that will help.  How is your husband doing?  Thoughts and prayers are with you both and everyone else. gulfgirl Mon, 17 Mar 2008 00:00:00 GMT Hi Gwen, my hubbie sounds like your's - super healthy, never smoked, etc. His cancer was at the bottom of his throat, above the espoh, so they put a g-tube in for feeding during the treatment- by about the 3rd week he could not swallow anything except liquids. I think the cancer location impacts ability to eat or not - at least this is what his team of docs told us in justification of placing him with a g-tube. He starting eatting solids about 4 wks after treatment ended and was back to a full diet 6 mo out of treatment - fast forward a year, and the only thing he can't really eat is spicy foods. if you met him on the street, you would never know what he's been through - In my experience as a caregiver these were the most critical elements to a successful, non-stop treatment: lots of liquids - almost 2500 cals daily of liquid ensure / nutrin - I never let up on this, not even for a daylots of water -lots of glutimine - about 30 mg a day > important protector of cell lining in mouth and muscle - my hubbie lots a lot of muscle during treatment, but put it all back on once he started going to the gym again - his body looks better post treatment! pain medication - my hubbie was resistant at first - at about wk 4 he started meds for pain - and continued with it until he was about 2 wks out of treatment. I wished we would have gotten ahead of the pain instead of trying to control it after the fact > fiber and stool softners to avoid the unpleasent complications of pain medicationIbprofrin - (sp) to reduce swelling of throat / pain - just make sure he's getting lots of liquid for liver following the anti - nausea medication directions before each chemo treatment religiously. swallow, swallow, swallow - even at the end of treatment, he would swallow at least a glass of water through out the day dental visits - he gets his teeth cleaned every 6 -8 weeks and uses a special floride tooth paste  food wise - same as you - lots a eggs, foods with sauce Best of luck and health, Julie    Julie21 Mon, 17 Mar 2008 00:00:00 GMT ps: my husband just celebrated his first full year in remission :) and life is almost totally back to normal, minus the mental game Julie21 Mon, 17 Mar 2008 00:00:00 GMT Julie,  You are a sweetie.  Thanks for your input - it is so helpful. My husband now says I'm his hero for sticking on the message boards!  Turns out in the last 1/2 hour we've determined he has thrush, which is why his tongue has hurt so much and so early in treatment.  part of his depression is that he thought he was wimping out so very early on.  Well, the tongue pain is worse than the throat, so now we're waiting for a call back from the doctor for a prescription.  thank heaven for everyone on the boards.  Wish I could say he didin't smoke, though he quit off and on, he was a smoker for 40 years.  Like many smokers, he feels really stupid now.  Radiation nurse told him this morning that theydidn't put in a tube early on because they didn't anticipate him needing one; and they don't like to insert it this far into treatment because they'd have to stop therapy for a while.  so getting this tongue thing under control would be such a big help.   Thank you thank you thankyou for all your tips.  I am on my way out to get the glutimine. Gwen gulfgirl Mon, 17 Mar 2008 00:00:00 GMT Hi Gwen, Good luck with the thrush - my hubbie had it at the very end, after treatment had stopped.   Julie21 Mon, 17 Mar 2008 00:00:00 GMT  On 3/16/2008 gulfgirl wrote:Thank you everyone!  I'm not sure how to get this posted within the same group, but my husband is the patient, but I'm doing all the reading about how he can get and stay as comfortablea as possible through all this and beyond.  You are all so helpful and I really appreciate you. Not to mention it is so heartwarming to her from so many people who made it through to recovery.  As I type, he is getting up saying today is the worst yet - he couldn't breathe.  Time to implement some of your suggestions.  Did I say Thank you????  Gwen My husband had the horrible mucos.  He was spitting constantly.  His doctor told him to swallow instead of spitting it out.  Believe it or not, his mucous slowed down some.  Also, the constant trying to get it up did not help with the soreness. Ripswife Mon, 17 Mar 2008 00:00:00 GMT  On 3/17/2008 Ripswife wrote: On 3/16/2008 gulfgirl wrote:Thank you everyone!  I'm not sure how to get this posted within the same group, but my husband is the patient, but I'm doing all the reading about how he can get and stay as comfortablea as possible through all this and beyond.  You are all so helpful and I really appreciate you. Not to mention it is so heartwarming to her from so many people who made it through to recovery.  As I type, he is getting up saying today is the worst yet - he couldn't breathe.  Time to implement some of your suggestions.  Did I say Thank you????  GwenGwen, interested in why the doctor's told him to swallow instead of spitting it out.  I am 17 months since radiation and have terrible mucous still & had to learn to pour extra warm salt water through my sinus and try to cough it out.  I also had a G-tube inserted as I was loosing too much weight, and at the site where it was placed, on occasion the force of coughing and spitting this stuff out feel tugging with some pain. On occasion I get some soreness.  Even till this day I also get an episode of Thrush and also take Dibulucan for the outbreaks.   I thank you all for your messages, and I too would have gained more peace had I found this early on in treatment, but grateful for all today!! God BlessMy husband had the horrible mucos.  He was spitting constantly.  His doctor told him to swallow instead of spitting it out.  Believe it or not, his mucous slowed down some.  Also, the constant trying to get it up did not help with the soreness.  pcn17 Mon, 17 Mar 2008 00:00:00 GMT  On 3/17/2008 pcn17 wrote: On 3/17/2008 Ripswife wrote: On 3/16/2008 gulfgirl wrote:Thank you everyone!  I'm not sure how to get this posted within the same group, but my husband is the patient, but I'm doing all the reading about how he can get and stay as comfortablea as possible through all this and beyond.  You are all so helpful and I really appreciate you. Not to mention it is so heartwarming to her from so many people who made it through to recovery.  As I type, he is getting up saying today is the worst yet - he couldn't breathe.  Time to implement some of your suggestions.  Did I say Thank you????  GwenGwen, interested in why the doctor's told him to swallow instead of spitting it out.  I am 17 months since radiation and have terrible mucous still & had to learn to pour extra warm salt water through my sinus and try to cough it out.  I also had a G-tube inserted as I was loosing too much weight, and at the site where it was placed, on occasion the force of coughing and spitting this stuff out feel tugging with some pain. On occasion I get some soreness.  Even till this day I also get an episode of Thrush and also take Dibulucan for the outbreaks.   I thank you all for your messages, and I too would have gained more peace had I found this early on in treatment, but grateful for all today!! God BlessMy husband had the horrible mucos.  He was spitting constantly.  His doctor told him to swallow instead of spitting it out.  Believe it or not, his mucous slowed down some.  Also, the constant trying to get it up did not help with the soreness.   I was diagnosed with tongue cancer a year ago this past February.  I had chemo and 36 radiation treatments.  I did exceptionally well with the chemo but was burned severly with the radiation (took a two week break because of the burns).  After treatments my scans came back clean.  As of right now I have no cancer cells.  I attributed this to much prayer and a nothing but faith in God.  My cancer was stage 4 and was told that 90 percent of my tongue would have to be cut out.  My church (St. James Missionary Baptist Church, Leighton, AL), the entire community (Muscle Shoals, Quad-Cities areas) and family and friends from all over the country went into prayer for me.  God definitely answer prayers!  I am talking and still have my tongue intact.  No surgery was needed.  As of now, my esophagus is closed because of the radiation treatments and I am unable to eat by mouth.  I have a feeding tube.  My mucus is not very bad.  I know in time the Lord is going to give me my eating abilities back.  They wanted to do surgery to give me a pen hole opening in my esophagus to allow me to at least sip water but the side effects is not worth it.  I prayed about it and I am going to wait on the Lord.  Good luck to everyone out there who has or is going through any type of cancer treatments.  Just pray, keep the faith and just know the Lord will not leave you or put anymore on you than you can bear.Leawaiia leady Tue, 01 Apr 2008 00:00:00 GMT yeah we were just saying today that thank god for remission and now feeling so well, you would think that it would be business as usual but it isn't, the journey does a number, it so does change the prespective on life.but life is ever changing, for me i fell better than i did before and these changes are worth every breath. god blessOn 3/17/2008 Julie21 wrote:ps: my husband just celebrated his first full year in remission :) and life is almost totally back to normal, minus the mental game  jusykitty Tue, 01 Apr 2008 00:00:00 GMT