My dad was diagnosed with stage 3 tongue cancer in the beginning of July. He's been going through the treatments really good - up until now. He only has 7 more days (14 treatments) of radiation and 1 chemo. The mucus in his mouth his killing him (along with his throat, fatigue, etc) He even told my mom today that he wishes he could die. He just turned 57. There's nothing I can do and I hate seeing him in so much pain! I feel so helpless. Does anyone know what happens if treatment cannot be continued (it's been 5 1/2 weeks). The 22nd should be the last day. How about the mucus?
Thanks,
Tracy

I am 58 myself. PAIN MANAGEMENT! That is the key! It is difficult at this stage, and hard to watch, but human being are pretty resilient. He should be reporting his pain daily to the radiation techs and the doctors need to be uping his pain meds. He should NOT be suffering - demand adequate pain management! He needs to describe his pain using the scale they are familiar with - 0-10 - 10 being the worst, unbearable pain.

The treatment has got to beat you up pretty good to work. Make sure that he keeps to his nutritional plan and stays hydrated.

The mucous will just up and dissapear eventually and fairly suddenly. This will all pass so he must hang tough - he's almost there! Another month or so of suffering and he will be past it.

He has done better than most to get this close to the end of treatment with few side effects.

Tracy,

This part of the radiation is where it gets really tough for a lot of people. I was 39 and had no other health problems at the time of my treatment, and when I was around the same place as your father, I also thought it would be better to die than to go on. I argued with my radiation oncologist about the need for continuing, and he convinced me I had to keep on with it (although at one point he did let me have a break of a day or two).

Your father's medical team should be doing whatever is possible to manage his pain and to monitor his nutrition levels to help him get through this -- not only through the end of treatment, but well beyond that until the effects start to let up.

Cathy

Dear Tracy33, Gary's advice is great about pain management. Also, the mucus problem might be helped with a mouth suction machine, which can be rented at a medical supply store. He will have to have a DR's prescription for it. It helped my husband alot and it cost us $40.00 a month to rent. It's a little machine with a suction tube alot like a dentist uses. Hope he can hang in there until the end. He will feel better. Amy

I really understand your what your dad is going through, I had a similar thing but spent the last 2 weeks in hospital due to being too weak through lack of food and the inability to manage.

I went and told the hospital to sort me out with food which came in the form of an NG tube and pain relief which came in the form of a syringe driver filled with morphine and anti sickness.

Now one month out of treatment I look back at those black days and cringe. Yesterday I took my 4 year old daughter to school for her first day. When faced with a wall I would look forward to the day of seeing days like yesterday which gave me heart and strength for the future.

Keep attacking its nearly at an end but get the Doctors to sort the pain out it does work and the mucus does go away.

Tracy-my dad was there too. This is the worst part. Just remind him that this is the time that all of the cumulative effects of the earlier doses hit. My dad was someone I didn't know-he told me to go to hell even!! BUT, he/we made it, he's all done with treatment. Just keep encouraging him and pushing him. It won't make it easier. I often shot him stories about all of the wonderful fighters and survivors I met here...I think that helped?? He was hospitalized and all that jazz---keep praying and encouraging. It REALLY does get better sooner than we thought anyway.

DITTO! I was in the same place as your dad also. I remember wanting to quit treatment & telling the doc's so. Somehow they just talked me through. My wife. She sure put up with alot of crap from me during that time. She's an angel & a fighter & would not let me give up. He can do this! Don't give up on him. This is one of the hardest things in life he's probably ever had to go through. Erik

Thanks for all of the replies and the hope that came along with them. My dad is continueing treatment and said he is going to finish this. The doctors put him on morphine and three other pain medications. The hardest time seems to be on Tuesdays. He has chemo on Mondays. Has anyone been sick the day after? I have told him about all of the nice people that I've met here and I think it does help. How long after treatment do you start to feel somewhat normal? When does food start tasting like something? I look forward to hearing from you all again.

Tracy

Hi Tracy --

I think a lot of people are sick the day after chemo -- the drug you get with the chemo (Barry gets Anzemet -- a 24-hour anti-emetic) wears off and you can get nauseated very quickly. Last Thursday afternoon Barry came downstairs and said, "I just started to feel a bit nauseous" and we both looked at our watches and it was *exactly* 24 hours after he got the Anzemet on Wednesday (his chemo day). He took a Compazine and it went away but if it had been worse he would have taken a Zofran. If you Dad's nausea kicks in at a specific interval after chemo he should probably try to short-circuit it by taking anti-nausea meds a bit earlier. The same with pain -- don't wait until it has hold of you before taking medications -- which is why many folks go to the Duragesic patch as it is long-lasting.

Gail

Tracy, I wish I could tell you it goes away right away. My dad has been done with treatment for uhhh...2 days now. He feels awful. Take baby steps, one minute at a time. My dad has the same things going on---just stay strong for him. As all the people on here that have actually gone through this, the radiation is "the gift that keeps giving" (Gary said this I think) even when you're done. Those wonderful cumulative effects. BUT they are kill, kill, killing cancer. Keep the pain meds pumping. Try to get a pain consult to come see him. In our experience, they are expert at giving the correct dosing and mixes of things. Today we got to go see our pain specialist so my dad could begin to wean himself off! You will get there too. Again, just keep pumping up your dad!!!! We're here for you guys.

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

Tracy,

My mom broke out in a rash all over her body it was caused by a reaction to the chemo. She went to the emergency room and they gave her benadryl and it went away pretty quickly. I know how difficult this whole process is but it will get better...

Take care,
Dani

Tracy, my dad (who is totally done and getting better every day) had fevers of up to 102. It was awful seeing him shudder when the fevers would break. It seems odd to say, but we took it as a good thing that there was nothing specific that the MD's isolated as causing the fever, this is a not an unusual thing during this treatment. After touching base with many of my oncology buddies, we have had discussions that just having cancer in general causes fevers and when tumors die, they release lots of icky substances that may increase basal temperature. These are only discussions and thoughts, so please don't apply this as fact to your fathers situation. I will say that with a little acetaminophen and Boat loads of hydration in the tube or via the iv, my dad's fevers were obliterated. Just keep thinking that your dad will likely turn around in a couple days--that's what I did and that's what happened. My dad spent a week in the hospital then another unexpected early stay. Those fluids can do a ton. Oh, also, I THINK (my feeling) is that going through all of this your body tends to be in a basic dehydrated state which also contributes to increased temperature. Take a deep breath and pray for your pops. My dad's rad was delayed as well.

Although fevers may be common, I was told to go to the ER if I ever had a fever that went past 100.5 degrees. When the immune system is really compromised, opportunistic infections can easily invade and that's why the doctors are so concerned with fevers at this stage. Hydration is important all of the time - 2-3 liters every day.

Tracy,

I don't recall if your dad was taking Ethyol (amifostine) or not. I developed a rash that kept getting worse and fevers that spiked to 104. I was in the hospital a few days in a row and they said some people develop a reaction to it. I didn't believe them but when I stopped, the fever and rash disappeared. I had 3 bags of fluids every day for many weeks.

Ed

Thanks to everyone who responded about the rash. My dad still has it and now it's moved to his back.

His arm has also swelled. Has this happened to anyone? How about constipation? He hasn't had a bowel movement probably for a week 1/2. The docs keep pumping him with medicine but nothing is working. Treatment still can't be done. They're hoping to resume on Monday now. Last treatment was Monday morning 9/19. Has anyone gone this long with postponement?

It looks like he'll be in the hospital over the weekend.

Ed - yes he was taking Ethyol but not since Monday.

Shawna - How long was your dad in the hospital. How long was treatment postponed?

Tracy

Tracy, I had to postpone the last full week of my treatments due to a machine breakdown. The only problem that it caused was that I started to feel better then had to go in for the last 7 treatments.

My dad was in the hospital for one week. His treatment was postponed for that whole week. I or his brother stayed with him every night. There was also an incident where his treatment was cancelled for a day due to an unexpected issue with the machine. We were a bit nervous about it. BUT--today he had his follow up ENT check up and he "couldn't feel anything, excellent results". My dad has fresh, new baby skin on his neck after the radiation burns have healed. It's kind of like the skin us women would like to have on our face (esp after all of this stress). We get our follow up scan the end of October. How are his blood counts? What are his White Blood cells doing?
Odd about the rash? I'm sorry, is he getting IMRT? Have the fevers broken? Bring him some movies, MAKE him walk the halls.

Hi Tracy-
My Mom did have a 2 week delay and then after the 2nd treatment they cancelled it. They felt she got too toxic so they did not want to risk it again. Are they giving him a laxative? How about an xray of his lower gi? They should be checking to make sure he does not have a blockage.

What type of chemo did he get- Cisplatin? How many more left?

The swelling can be a result of the chemo (bloating). Is he getting out of bed at all and moving?

Hang in there.....it will get better!
Tami

My dad finished his last treatment this morning. He was sent home on Tuesday but 2 hours later went back to the ER because of his fever. He's still in the hospital but he's so happy that radiation is done and that he completed his 6 1/2 week treatment (2x a day). His oncologist gave him the "head mask" as a momento. He may have to stay for a while but we're all ok with that. The rash seems to be going away as well. The docs seems to believe that he had an allergic reaction to penicillin. In 3 weeks they want to do a catscan. I'm keeping my fingers crossed.

Shawna - I'm so happy for your dad and family. How long has it been since radiation was stopped? What do you mean by "couldn't feel anything"? I know that my dad did get blood on Saturday and his white blood cell count was low.

Tami - I'm not sure about the name of his chemo either. He's completed 6 out of 7 and his last one was on 9/12. He his getting out of bed and walking around but his ankles and legs are still a bit swollen. The docs want him to have his legs up.

Take Care all. As always, you're all in my thoughts.

Oh, what started this fiasco is that my dad felt a lump up in his jaw line-It was amazing all through treatment to periodically poke at it and feel it disappear. And, when the MD's to the physical examination they thoroughly feel the chains of lymphnodes for enlargement. My dad gets his scan the end of October-they like to wait. At that point they will decide whether or not to do the neck dissection. Thank you for the happiness, we are very relieved-what a trip. His radiation was stopped 3 weeks ago. He is back to mowing his 5 acres (walking) and now his goal is to get the PEG removed. He's slowly introducing foods again, and he even looks like himself again. I CAN NOT believe what I saw my strong hero go through and I CAN NOT believe how my prayers for strength were answered, it is amazing, just amazing. Of course there is that grief that my dad and us will have to live kind of on the edge now. He is looking into going to a counselor to help with the emotional side of things. Tracy, I saw my dad in the scariest condition ever, and I am just shocked how the tenacity gets these patients through. Wow, everyone is so strong.
I am so happy he's done, that is just AWESOME. he won't feel better right away remember.
Keep trucking girl, I love Chicago this time of year.

Glad your Dad is done now Tracy-Now the healing will begin. Slowly but surely. I can understand the anticipation on the waiting for the scan. My Mom won't get hers for another month or so in the meantime we are just hoping for the best. It is great that he got that many chemos in. Hopefully it got every last cancer cell in his whole body! Keep us posted on his progress. Don't forget the rule of thumb on this board= 1 month of recovery for each week of radiation. I did mention that to my Mom a few times because she thought she was going to snap back overnite. It gets frustrating for them when they do not make the progress as quickly as they expected. So if he starts to get bummed remind him of this rule of thumb.

Shawna-When in Oct. is the scan? Keep us posted on the results. All three of us have parents ending treatment around the same time! I hope that in no time they are all feeling healthy again!

Tami

I believe the scan is like the 26th of October-then the tumor board meets, then we go meet the ENT. Last night he ate a baked potato, salmon, milk-he was very excited. He's going to banter with the docs tomorrow to remove his PEG. Hoping for the best for all of you and your 'rents.

Tracy,
Is your Dad still on pain meds? The constipation may be a combination of pain meds, liquid diet and hydration. If he hasn't had a movement in over a week, it's time to get serious about it. You would be surprised how many folks show up in ICU due to an impaction.(stool so solid the patient CAN'T move it out.) Not trying to alarm you, just a precaution to catch this sort of thing early and prevent a real problem later. Pain meds slow down the peristalsis or movement of the intestinal tract, liquid diets sometimes don't have the "bulk" the intestine needs to work things along, and hydration helps keep things soft. Plus, if he isn't up and about much, that's just another thing that will gum up the works.
Talk to the docs about these things and see what they suggest.

Andrea

Hello everyone. Well my dad is finally home after two weeks of being in the hospital. His face looks awesome and the mucus has left somewhat (just a little hear and there). The only problem now is the swelling in his lower legs, ankles and feet. They're huge and he's having a hard time walking. All the doctors keep telling us is put them up but nothing is helping. He's now in pain from this. Will it ever end? How much more suffering does he have to go through? Has anyone experienced this problem?

Hi Tracy --

My mother had this problem (quite seriously, too -- it made walking very hard) when she was in clinical trials at NIH for her chronic lymphocytic leukemia. In her case, it was from detrioration of the lymphatic system coupled with (frankly) too much hydration by IV -- as soon as they hooked her up, in a day or so her legs, feet and ankles were huge! She just couldn't get rid of this excess fluid despite diuretics. Eventually it resolved when she got ill for a few days with pneumonia and they put her into ICU (she wasn't comotose or anything, just into ICU to closely monitor the infection and control exposure to other illnesses). Among the drugs she was given at that time was l-dopamine, plus a slew of antibiotics, and in the three days the excess fluid went away! I wish I could say that the docs had an obvious explanation but they were as puzzled (and relieved) as we were. After that she was fine for several years and never had a recurrence.

This may not relate other than your dad just may be having problems getting rid of excess fluids which he may have been given by IV -- have they tried a diuretic with him? (Assume that, unlike my mom, he has no lymphatic problems.)

Gail

It seems odd Tracy, there are NUMEROUS reasons that could be going on. I'm with Gail, ask THE DOCTOR for a diuretic that can pull some fluid out. Prepare him to pee alot. It is amazing what you have to ask for and don't be afraid to do it. The worst that could happen is they say no.

He was on some kind of diuretic in the hospital but it didn't seem to help (he did pee a lot though). I'm just hoping that he feels better soon. I think if it wasn't for his legs he would be feeling pretty good after all he's been through. He's getting around with a walker now. I keep thinking positive. Eventually everything will get better.

Take Care All!
Please keep him in your thoughts
Tracy

Hi Tracy,
It may be just nothing- but as regards to the constipation for such a long period is not usual. Well again I am not a doctor-but ask your treating doctor if a Gastro should be brought in as he would be the ideal person to give you a pausible explaination on this issue.
Ananth

Tracy --

I also recall they put my mother on digitalis while she was in ICU -- she didn't really have a heart problem but had a slight murmur from a childhood bout with rheumatic fever -- this may also have helped her clear the fluids.

I would ask the doctor for help -- what can happen is that an extreme buildup of fluid can damage the lymphatic system so it needs to be looked at.

Gail