Hi All,
The latest event in Gordon's so-called "recovery" is pneumonia. He's been feeling more fatigued over the last month than he did the month before and we've been chalking it up to "recovery" and getting off the various narcotics (he's now off the fentanyl patch and tapering off the oxycodone - only taking 5 mg. 2X/day now).
A few weeks ago he said he felt like he had a chest cold. We went to his GP, who said there was a bit of mucous in his lungs, but it could be an allergy. He sent Gordon for some blood work and said if everything was OK, he'd send him for a chest x-ray. So on Thurs., we went to the dental dept. at the Cancer Clinic for his 3 month post-treatment check-up (at least he has no cavities!) and I took the opportunity to vent about the lack of follow-up after treatment ended. One of the dental assistants took us seriously and tracked down a GP Oncologist (lovely man, who we've seen several times) who agreed to see us. He listened to Gordon's chest, but said he couldn't hear any wheezing. He seemed to think it was a heart issue and sent him for an ECG. We both thought he was barking up the wrong tree, and asked again why Gordon had mucous in his chest. Anyway, we pushed for an X-ray, so he sent us back to the lab for that. Shortly after we got home, he called to tell us that Gordon had pneumonia, that he "didn't think it was related to cancer" (!!!!!), and phoned in a prescription for him. We went to Gordon's GP the next day and this time he could hear that his lower left lobe was "solid", as he put it. He didn't have the x-ray results yet, but also didn't think it was "cancer-related" (more exclamation marks). So, strong antibiotics for a week and we figure the poor guy has probably had this for a month.
Has anyone else had something like this? Why would it happen? Our biggest fear has been that the cancer has moved to his lungs, but given that the oncologists knew the state of his BOT tumour and that there was only 1 node pos., wouldn't they have done a chest x-ray before treatment if they thought it was a possible the cancer had gone elsewhere? Gordon has never smoked, and his cancer is, or I should say *was*, HPV 16 related.
We have the PET scan on Thurs. next week, and won't get the results until Aug. 3. It's going to be a hellish week.
Anne

Lots of oral cancer patients have "silent aspiration" including me. You do not sense that it is happening but when you swallow you are not completely able to close of your trachea and some of what ever you are drinking ends up in your lungs. The result if this accumulates is aspiration pneumonia. I have had it several times, usually if I am laying down for a protracted period like when I get the flu, which facilitates collection and not clearing in your lungs.

Have him get a barium swallow test to confirm if this is happening to him.

I do not aspirate solids at this point, the the dysphagia that is part of all this is radiation induced, and is getting worse the farther I get out from my treatments. I suspect that one day somewhere in the future I will be back on a PEG feeding tube for the duration if it gets bad enough, and the aspiration gets to extreme. There will be no other solution.

Thank you Brian, for this explanation. It's more help than we've had from any of the medical people here. I'm wondering if Gordon's milkshake might be the culprit, as he seems to cough more when he has it; also, he says it irritates what he thinks is the tumour site (BOT). I will call the clinic nutritionist tomorrow and see if she can offer any insight into the aspiration problem.
This website and forum are a wonderful resource. I would not have made it this far without them and all the compassionate and helpful people who post here. I can't thank you enough for providing it for all of us in need.
Anne

You just mentioned milk shake. I have found that milk (and some other dairy products) increase my mucous problems. I still drink protein smoothies, with fresh fruit whey protein powder sometimes with yogurt, and now made with Vanilla flavored soy milk. At first I didn't like this stuff, but now I have it in my cereal coffee, and anywhere I would have used milk. There are a lot of brands out there, some a genuinely nasty or just watery. The one that I found I liked is called Silk. Plain flavor... well that name says it all, but the vanilla one has become one of my staples.

There seems to be some controversy about whether dairy products cause an increase in mucous or not (in the general population). I think one's subjective experience tells the tale. If you consume dairy products and have noticed more mucous when you do, there's probably a causative link.
In Gordon's case, he's been having the "milkshakes" (fortified milk, diabetic Boost, whey protein powder and sugar & lactose-free ice cream) for over 4 months without having any discernible increase in mucous, so I suspect his lung problem is that he's aspirating something. I wonder if there's something about the texture of the milkshakes that might induce more aspiration. However, it certainly wouldn't hurt to try some soy milk to see if it makes a difference. We tried soy yogurt earlier on and he wouldn't touch it, but maybe he'd be more willing to try the soy milk now (I've seen the Silk around, so will give it a go).
Thanks again for your help, Anne

I think his problem is aspiration, I just thought the mucous might be related to the dairy. They are two different issues.

Not helpful to the aspiration, but potentially helpful regarding the dairy option - Some people who dislike Soy Milk enjoy Almond Milk (I happen to like Both-but my husband HATES the Soy and loves the Almond) and Almond Milk happens to be even healthier than regular milk or Soy milk.
Be well,
Michele

Another good suggestion. Thanks Michele.
Anne

No problem, glad I could contribute something helpful.

It seems the pneumonia may not be aspiration related, as it's in the left lung. The Dr. explained that the way the trachea is connected, any aspirated substances are more likely to go into the right lung. Not impossible to go into the left, just less likely. So, the cause of the pneumonia remains somewhat ambiguous at this point. Had the PET scan today, results Tues. The stress never seems to end.
Anne

The barium swallow test is quick, painless and not expensive. It would give you a definitive answer to something that may be the problem this time (not an opinion) or the heads up for a problem that might manifest itself in the future.

Thanks Brian, I will ask for this at the next Dr. visit. Gordon is still coughing and there's certainly something going on. He had his PET scan yesterday, and he said it looked like they scanned everything from the thighs up. I'm desperately hoping they won't find anything in his lungs (he's never smoked).
Anne

My son had pneumonia 5 months ago but after Xray recently, showing a spot on his left bottom lung followed by CT scan, doctor said spot was a result of scar tissue from the pneumonia (which was also accompanied by pleurisy and bronchitis.

These are some posts I am glad I read, You just answered some of my questions that I never ask the Drs. I use a lot of milk and just tried the Soy Milk. I liked it and will switch and must thank Brian even one more time for his great advice.

Had a visit to the RO today for PET results and it looks like it's clear. The RO said the results were as good as you'd get from any test. It did show the pneumonia, and he got checked over pretty thoroughly.
This is the first real relief I've had since we had our first visit to the surgeon on Dec. 12 (he took one look at Gordon and knew there was a problem). I know the cancer can come back, but at least we have a hopeful place to start from. Gordon, being who he is, is not feeling much relief at all and is still upset about his wonky taste buds and lack of saliva! (Well, I can't blame him - it must be awful).
Anne

Great results!

So glad for the good results! I'm sure the "wonky" taste buds will improve soon. My son's taste buds improved in small ways and in various places like front of the tongue, back, etc. One thing I noticed is that before trying anything, he would bend his head close to the food and smell it deeply for several seconds. I asked him why he did that and he said that smelling the food was almost like tasting and it brought him memories of what the food had really tasted like before his surgery. We celebrated the small successes like when he was able to swallow one noodle from his chicken noodle soup! Or the day he was able to taste and eat one gourmet jelly bean and his daughter (5 yr old) and I danced around the kitchen!

Thanks for the encouragement Anne-Marie. The story about your son smelling his food almost makes me cry.
I wish Gordon was able to be even a little bit positive about some things that have improved for him. It makes it hard for him and for me when everything is so relentlessly negative. Easy for me to say, I guess, since I'm not the one who's had to endure the treatment.
Anne

Anne - there were many times when my son was not very positive and it broke my heart to see him, and feel like there was nothing I could say or do to make his pain (emotional and physical) any better. Once when I saw him hunched over on the couch with his head in his hands, all I could do was hold him and tell him things would get better. (I may have been trying to convinced myself as well as him) Once, he got angry, accusing me of not knowing how he felt - and I guess that was true but I still wished there were some way I could take away all the hurt. He was on meds for depression at the time so maybe it would have been worse had he not been on the meds. Have you asked the doctor if Gordon could be depessed? Going through cancer treatment I would think is enough to make anybody depressed. Take care of yourself, too, so you can stay positive. Being a caregiver is not always easy.

Thanks Anne-Marie, for the encouragement. I do know that Gordon is depressed and he's on Prozac and Mirtazapine, neither of which seem to be working very well, if at all. We've lost faith in his shrink, who seems to be stuck on Prozac, so we're going to the family Dr. to see about trying something else. It is heart-breaking to see someone you love feeling this way and not be able to do anything about it. As you did with your son, sometimes I just sit beside Gordon and put my arms around him because there's really nothing else I can do. I've given up saying it will get better, because neither of us know when and how much the situation will improve. And he usually just says "when?" and to that I have no answer.
Anne

It's good that you are checking with the Dr. re the depression meds. You might ask him about side effects. They work differently for different people. On one of my son's anti-depressant prescription bottles, it said that it "may cause suicidal thoughts" in younger persons and you can be sure we talked to the doctor on that one! My son was on Wellbutrin (aka Bupropion and Sertraline) as well as Zoloft. As to the big question "when", after the end of treatment, for many it gets worse before it gets better, but it DOES get better! It's been less than a month since the end of Gordon's treatment so he's probably at the worse of it now and he could start feeling better soon. It took Paul (my son) a couple of months before I started seeing small improvements. I found quotes from other posters here that really helped us to look for the "light at the end of the tunnel" and to stay positive for Paul. It kept me from going bananas many times! Please keep coming back here and let us know how you and Gordon are doing.

Actually, Gordon is now 3 months past the end of treatment. There have been some small improvements, but not enought to suit him! Of course, he also hasn't read anything about the whole process, so doesn't have a realistic view of what to expect.
From what I've heard, one has to try a few different anti-depressants before landing on one that works. Having a Dr. that won't budge is counter-productive and even harmful to the patient. Apparently there are newer drugs called SSNI's that have less side effects and work better (or so we've been told).
Thanks again for your suggestions and support,
Anne

Anne, I'm sorry, I must have read your signature info wrong about Gordon being 3 months past the end of treatment. Recovery can be such a slow process and it can seem even longer than what it is especially with the Pneumonia added in. My son never celebrated the small improvements the way I did. He never wanted to read anything about it either. I think he was afraid of getting bad news and he didn't have a lot of confidence in my telling him what I had learned on this site. So when I found things I thought would really help him, I printed it out and just left it by his bed. That way, it would seem like someone else was giving him info and not just me. I don't know if it was the anti-depressant meds finally kicking in or what but his attitude did improve. Nobody deserves to go through this without the right meds though and I do hope Gordon can find the anti-depressant meds that will be right for him. Do let us know how that goes.

Anne-Marie, that's a really good idea to provide something in print rather than verbally. At some point, I think people stop listening, probably because it's too frightening and stressful. This way, they can go back to it when they're ready. I tend to forward helpful posts from here to Gordon, as long as they don't have anything really scary about recurrence or post-treatment side effects. I know he reads them and occasionally asks me questions about them. So, indirectly, he's getting some benefit from me having found this Forum. Anne