I didn't go see my dad this weekend because he wasn't up to anyone seeing him. He claims he can handle the soar throat, it's the mucus that's killing him. JAM (or anyone else) do you know if the doctors can suction this out at treatments? How hard is it to get a DR's prescription? Why isn't it offered as part of treatment? Shawna- how's your dad doing now? How's everyone doing? My thoughts are with all of you!!!!!!!!

Tracy

Tracy, It should NOT be hard to get a script for the suction machine. In fact, I would think the hospital would have them available for patients to use while there. We rented one from our[small medical supply store] when John got home and he used it for several months. It helped him alot. Our cost was $40.00 a month. Your Dad will probably benefit from having one at home. Good Luck and keep encouragig him. Amy

Thanks for the quick reply Amy. My dads oncolgist (whom I don't care for) told him there's really nothing they could do for the mucus except drink lots of water. I told my mom about what you told me and she's going to inquire tomorrow. We have 4 more days left (8 treatments) and 1 chemo. Do you know how long the mucus lasts after treatment?

From what I have learned from reading here, it is different for everyone, I'd be prepared for it to last several months [in varying degrees]Hope your Mom can find the mouth suction machine. I really think it will help him. Amy

Amy-
My mom is just 3 weeks out form treatment and she still has horrible gagging mucous. Today she said that it has been the best so far. She also claims that this is the most annoying side effect of all. In the hospital they had her on cold type meds to thin the secretions out (Guafiasen). She also used the suction machine in the hospital when it was at its worse. She goes through a box of puffs a day blotting out the gunk. She also takes Zofron to help control the naseua from the mucous. How many more radiations does he have left?
Tami

My MIL finished with her radiation (from her esophageal ca) about 3 yrs ago, and she STILL has tons of mucous that she uses her suction machine several times a day for. We have tried a variety of things that seem to help, sometimes. Guafenisin is one, she takes 10-15 ml 3x per day and it helps to thin the mucous (in her g-tube as she cannot swallow well). She also swishes with salt water and/or nystatin (she gets regular bouts with spots of thrush). She takes Claritin year round which seems to help reduce the amount a bit. She uses the lemon glycerine swabs a few times a day to help clear off some of the coating around her mouth.

She has also had several enoscopies to dilate her esophagus. She developed a web across that continues to close down on her preventing her from swallowing much. We had hoped at one time she might be able to go back to swallowing boost or ensure, but the most she ever was able to get down was 1 can per day. These days she is lucky to be able to swallow her 3-4 oz of starbucks per day. Tami, like your mom, she goes through tons of kleenex. We do have her using 4x4 gauze pads as much as we can instead, it doesnt shred and stick in her mouth the way that kleenex does.

One other thing we found helped tremendously with the nausea that comes on fairly suddenly... ABHR gel. When she was about done with chemo and radiation (they stopped treatment 2 weeks early as she was SO sick) she asked and was allowed to go on hospice. Hospice suggested the ABHR gel for nausea, and it worked tremendously well. It is a combination of Ativan, Benadryl, Haldol, and Reglan, and a compounding pharmacy makes it into a paste and puts it in a syringe. You just squirt 1/2-1 ml onto the skin (belly, forearm, chest) and rub it in, and voila, the nausea disapates nicely. At least it worked for her...!

She did go off of hospice 2 yrs ago, and really until the last year or so had pretty decent quality of life apart from the suction and need for constant dabbing of mucous/saliva...

Heidi, DIL to the bravest woman I know... Oral cancer 6 yrs ago(surgery only), esophageal cancer 3 yrs ago, and newly re-diagnosed with oral cancer (with a few bouts of skin cancer and bullous pimphergoid inbetween). Seeing oncology this week to determine where we go from here...

Tracy! I have good news of what you most likely have to look forward to. My dad did have a hard time with mucous even 5 days post treatment. It made him puke, and gagged him in his sleep. What helped is getting pumped with IV fluids, that seemed to make it less tenacious (thick). Now, we are a week out of being done and he reports it is MUCH better. No gagging, getting a full night sleep and much better. He is even starting to take things by mouth for the first time in a month!!
Keep encouraging him to pump fluids some how and know that he will most likely be a bear for a bit. It seems to drag on forever, but it is so wonderful to hear them say: "I actually feel better today-I still feel like shit, but I feel better!" We also have a designated nasty little spit cup he carries around so he can huck his loogies in. He also brings the soda salt water to swish. He's doing so good we are bringing him home tomorrow! There is hope, honey I swear.

Thanks for the replies everyone. Your opinions and thoughts make me feel so much better. Of course, there are always new questions and concerns!!!!!!! My dad is now in the hospital fighting a fever that continues to go up and down. He was told to go to the emergency room Monday afternoon w/a temp of 101.2. It's gotten as high as 102. It figures that this would happen the last week of radiation. I guess we're lucky that this didn't start when treatment began. All the tests taken came back good. The doctors are still trying to figure out what's causing the fever. He has been constipated the last week and hasn't had a bowel movement. We thought this could cause the fever but the doctors say no. I just talked to my mom and she said that he's also starting to break out in a rash. Has anyone gone thru this? Is a high fever normal? Needless to say, treatment has been postponed. They're giving him benadryl and morphine (not to mention his other 100 types of medication) They're talking about resuming treatment tomorrow thru mid next week. This is like a nightmare that will not go away!! The worst part is feeling so helpless. I cry when I think about it or just hear his voice. How can I continue being strong for him and my mom? I admire all of you so much! I can't imagine getting thru this without your support! The best thing you've given me is hope!

Tracy

Tracy, I can speak to the rash. John broke out in a rash about the 3rd week of radiation-on his chest and back- no one knew what it was, but they let him use a cream[can't remember what, but it was anti itch] as long as he showered before his rad tx. It went away after about a week. John also had an undetermined fever, about 101, for a couple of days, and was very weak and dehydrated. Couldn't pinpoint that either, but he was given an antibiotic-it went away also.There are lots of downs in this treatment, BUT there will be UPS at the end. You gotta stay strong. John's rad ended July 8th and he is driving me and a 17 mo. old to San Antonio, Texas tomorrow. We are pul;ling for you guys. Amy

Thanks Amy. The rash is on his arms. Hopefully it will go away soon. I'm glad to hear that John is doing well. Hopefully in a few months I'll be saying the same! Have a safe trip and please stay in touch when you get back.
Tracy