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Joined: Aug 2008
Posts: 100
TomT Offline OP
Senior Member (100+ posts)
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Joined: Aug 2008
Posts: 100
Well I am feeling lost. It seems most times I can make sense of what is going on. On Pam's last PET/CT scan there was some new activity in her lungs. After that PET they gave her a round of Taxotere to buy another three weeks to get another CT to determine what was happening in her lungs and what course of action to take. Last week they took the CT and it showed the new activity had expanded to both lungs, looking like "ground glass nodularity". After the MO discussed with the person reading the CT, they determined that they believe the CT was showing that Pam had aspiration pneumonia even though she is not showing any typical symptoms of pneumonia. They have prescribed antibiotics, given her another round of Taxotere and plan on doing another PET/CT in three weeks before the next round of chemo to determine how to proceed.

I think I somewhat understand all that but have mixed reactions to the CT reading. I believe it is good that it is not showing the cancer spreading that fast in her lungs but also concerned because of the dangers of pneumonia. Isn't that one of the major ways that people die from this disease? She has been having a horrible time with the antibiotics causing diarhea. Also, several times after receiving chemo, she has had leakage around her PEG tube. Once before it had a red tinge that made it appear that it was bloody and again today it is leaking what looks like blood.

I guess I would like to hear if others have had leakage around the PEG following chemo and if you have ever had the leakage appear to be blood.

The other thing would be your opinions on the dangers of aspiration pneumonia and if you have ever had scans showing this "ground glass" like appearance and if it turned out to be an infection or cancer.

Thanks,


Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
Joined: Mar 2002
Posts: 4,912
Likes: 53
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I have had aspiration pneumonia on several occasions as a result of my inability to completely close off my trachea when swallowing. This is very common in people that have had radiation for oral cancers. In most they are unaware they are aspirating anything, but in fact very viscous liquids end up partially in your lungs, and a barium swallow test will confirm this. When it gets bad enough, patients end up back on PEG tubes, sometimes many years after the primary treatment. My CT scans, when this happens, are common for this radiographic finding you are describing.

Having said that, it can happen for other reasons. So I am attaching a link to a radiographic discussion of the subject.

http://www.ajronline.org/cgi/reprint/184/2/613

Please note that many of the other things described in this paper, are very remote possibilities, and I do not think you should be alarmed about some of the scarier things that it contains. The simplest explanations for things are usually the right ones.

PEG tubes often become infected, raw, and for people that are forcibly contracting their stomach when they vomit etc., it is not uncommon to have some blood near the opening. Besides bringing this to the attention of your doctors, you should daily (a couple of times) clean the area thoroughly, and coat it with an multi-spectrum antibiotic ointment (OTC from the drug store), to prevent opportunistic infections. When you speak with the doctors they will likely want to know if it is lots of blood, or small pink amounts on the tissues or gauze you clean it with. Copious amounts might lead them to want to do some kind of endoscopic examination of the stomach to confirm there is nothing more going on that the obvious possibilities.



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.
Joined: Aug 2008
Posts: 100
TomT Offline OP
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Aug 2008
Posts: 100
Brian, thank you for the info. It never ceases to amaze me that there is almost always someone that has been there and able to share. Pam has had a couple of swallow studies and was cleared for thin liquids but I think she has been drinking much more over the past couple of months, so maybe it is just accumulating faster than she can expel it.

By coincidence her MO called today regarding some questions I had on clinical studies and I had asked er about the PEG leakage and received almost verbatim your response.

Thanks again.


Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
Joined: Mar 2002
Posts: 4,912
Likes: 53
OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 53
Glad I was helpful. I'm really not that smart.... just been doing this a long time.


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.

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