Hi all. Well, hubby is 8 weeks post treatment tomorrow. He still has his PEG but is working hard to take food by mouth. He's been doing pretty well with his swallowing and minimal throat pain. His RO said he can't feel his lymph nodes any longer and wants him to have his PEG out in a month. I don't see how he will be ready by then but we'll see. His PET scan is scheduled for Nov.

I'm writing today for 2 reasons: he is having a major issue with constant post nasal drip. We've tried everything the dr. has suggested and nothing slows it down. Advil Cold and Sinus helped a little. Could the rads have hit his sinuses? I didn't think the beam hit that high on him with his cancer being base of tongue.

The second issue has me very worried. The past week his throat pain has increased quite a bit. It hurts pretty badly when he first starts eating but then backs off as he continues his meal. Then, he's started seeing blood off and on when he spits. He is still hacking and spitting all day because of the post nasal drip, I guess. We have an appt. with his ENT in 3 days but I wanted to see if any of you have experienced blood in your spit this many weeks out from treatment. I'm sure you all know what I'm afraid of.

Hope you all are doing well and life is good for you.


Carol

The post nasal drip problem is from many things including radiation and chemo. It's important to keep lots of liquids helping to thin it out along with Mucinex. You need the mucus to continually remove dead and sloughing cells throughout all areas containing mucus membrane.

Also, some of the muscles near the BOT get hit hard from radiation. Specifically the muscles that help get the post nasal drip down. It then pools up at the back of the to gue and has to be constantly cleared and spit out. I would guess that is where the blood is coming fom, although you need to take photos of it and let the doctor see it to make recommendations. Constant coughing could cause that and I have mouthfuls at times, 11 years after treatment.

Make sure you take all concerns to the medical team first and foremost. They are not only trained but have experience that shows them symptoms from every perspective.

Once the sputum turns clear all the time, there are some things to try at night for better sleep.

Have you tried a home suction machine? It is making a nice difference for my husband (half way through his 35 rads, has thick mucus and a good case of mucositis). Avoids at least some of the hacking and effortful spitting. Seems very likely that the fragile, irritated tissues inside his mough and throat would easily bleed with all that coughing, etc.

Thank you for the replies. Uptown, thank you for the insight on the weak tongue muscles. I have been researching the issue and I think you're spot on. The primary tumor was Bot and he was already having issues even before radiation. Uptown, I just read your signature and all I can say is, "Wow! Just wow!" You are completely amazing and an inspiration. Thanks for your input.

Thank you, Carol. It's all old stuff, though. Nothing new this year.

Carol,
Congrats to both of you for getting this far out of treatment! Let us know what the ENT says this week. It's likely nothing to worry about and is probably just irritation like others are saying. One comment I had was that if your husband is not bothered by the PEG tube then I wouldn't rush to get it out. Mine was getting annoyed with it and I think had it out too soon, before he started gaining weight back. Now he hasn't been able to gain any back. Let us know how things are going. It should just keep getting better from here!
Best,
Randi

Thanks for your reply, Randi. He really wants that PEG out but he just plain isn't getting enough food down to hold his own without it. His RO is really pushing him to have it out before his next appt. which is first week of Nov.

Our visit with his ENT went well. He scoped him and said that everything looked good. He said that hubby is right where he should be and to just keep trying different foods.That leads me to my next question: what in the world does everyone eat? We are trying different foods but he is definitely having a rough time. I know this is to be expected. I'm just running out of ideas. The funny thing is, he is actually tasting quite a bit! Sweet tastes good to him. He is tasting savory but salt, garlic, those kinds of flavors are coming out very strong to him.

He is scheduled for his PET scan the second week of November.That will be 3 months out from tx. I have been kind of reading through the forums and it seems that a lot of you are getting PET scans later than this. Is 3 months a little too early? I'm afraid of false positives from his still inflamed throat.

Well, that's about all the news. Each day is passing by and he is working on eating. He is a bit depressed because he feels he's not making much progress and he's still hacking up mucous. He's not big on patience and I keep telling him that he is still a newbie in the recovery phase but he doesn't seem to believe me.

Thanks for listening everyone. Don't know what I would do if I couldn't come here and read and learn. Bless all of you.

Hi Carol,
You are doing great caring for hubby.
12 weeks is quite a standard milestone for the first PET. It is generally a good balance between getting a good look while experiencing fewer false positives.

What I did was get a 10 dollar baby food grinder and throw all sorts of stuff in there, even meat, to experiment with different foods that were edible. Taste buds are so whacky it is really hard to know what works until you just give it a try. The little grinder was great as it made a perfect amount to taste while still getting a few good bites too.

He should be having more good days than bad by now. It is not a straight shot to being up and running around like days of old. Do get out as much as you can, even for a short walk around the block.