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#119692 07-25-2010 12:37 PM
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Elianne Offline OP
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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


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Elianne #119694 07-25-2010 04:46 PM
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #119695 07-25-2010 06:48 PM
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Elianne Offline OP
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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

Last edited by Elianne; 07-25-2010 08:00 PM.

Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Elianne #119696 07-25-2010 07:11 PM
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #119700 07-25-2010 08:12 PM
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Elianne Offline OP
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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


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Elianne #119701 07-25-2010 10:13 PM
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I think his problem is aspiration, I just thought the mucous might be related to the dairy. They are two different issues.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #119712 07-26-2010 04:40 PM
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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


SCC, R Lateral tongue, T1N0M0, Diag: 3/15/10
38 yrs old at diag HPV Neg, Non Smoker Non Drinker
4/12/10 Partial Glossectomy, No Rads or Chemo
7/15/10 excision biopsy L mid posterior tongue - NEGATIVE

Michele71 #119731 07-27-2010 01:06 PM
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Elianne Offline OP
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Another good suggestion. Thanks Michele.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Elianne #119793 07-29-2010 03:52 PM
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No problem, glad I could contribute something helpful. cool


SCC, R Lateral tongue, T1N0M0, Diag: 3/15/10
38 yrs old at diag HPV Neg, Non Smoker Non Drinker
4/12/10 Partial Glossectomy, No Rads or Chemo
7/15/10 excision biopsy L mid posterior tongue - NEGATIVE

Michele71 #119798 07-29-2010 04:50 PM
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Posts: 126
Elianne Offline OP
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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


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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