Simon is in hospital, initially because he was unable to keep enough food or water down over a couple of days and his wife was concerned about dehydration. He has been religiously drinking at least 3 litres of fluid, mainly water since his diagnosis. Once in hospital (5 days ago) he was diagnosed with aspirational pneumonia in one lung, which is now being treated with piperacillin/tazobactam. His temperature is a bit up and down, but I assume the piperacillan will do the job on that.

More worrying is the fact that he is vomiting food and fluid up that has gone into the PEG. He's on a drip to keep hydrated, but is putting a bit down the PEG just to keep the stomach going. The swallowing mechanism is OK, but he is nil by mouth to avoid more aspiration. My query is if the stomach is rejecting, by vomiting will this cause damage to the stomach as such, in the same way as swallowing ability can be impaired if you don't keep swallowing? The piperacillin is probably making him nauseous, rather than the stomach deciding it's done with eating, but with several things happening it's a bit difficult working out WHY any particular thing is happening.

I'd have to say that even though we think the MO and RO are good at their individual jobs, we feel the left hand doesn't know what the right hand is doing. They are supposed to be part of a team which decided in concert the best treatment option for Simon. Yet the RO feels the inevitable rashing and skin issues are the result of radiation, whereas the RO claims they are the result of Erbitux. Also, the RO has expressed to Simon her strong "doubts" about Erbitux. She may well have strong doubts, but considering she is part of the team that devised the treatment protocol, and that he has just had the 6th and last dose of a very unpleasant medication, I think at this point she should keep her trap shut. Oops, sorry about the tone creeping in there!

The other thing he is concerned about is the temperature fluctuation 5 days into the antibiotic. He has a pituitary gland tumour, a microlactanoma, which he has been told (he's had it for a couple of years) will eventually resolve itself. He is a bit concerned that it has "broken out" (you can tell we don't have a medical background!) as a result of the scc treatment. Probably a question for his MO, who has been told about the pituitary tumour but has said leave it on the backburner until the tonsil is out of the way. Take care everyone, Linda

Hi sorry your brother is having such a tough time of it. Erbitux is notorious for the rash -(so I've heard - I've had cisplatin) so I guess the question is where the rash is - radiation blisters are very common in the radiation path and spray area - but outside that area like all over I would attribute it to the Erbitux since chemo is systemic.
Team Is a term i would use to very loosely describe the people doing the cancer care - because I have discovered that they basically each operate independently and follow a basic protocol, do they sit down and discuss your brother's treatment...? Maybe once at the beginning, and maybe now because he's having complications, but usually they each take care of their own area.
The RO maybe concerned because he or she read the recent study on the effectiveness of Erbitux, with HPV related cancer - I don't know that the RO would actually "agree" on a path of treatment, because as I said, he/she would look at your brother's case and say, okay, this is what my job in all this is - which is design a radiation treatment that specifically targets your brother's cancer, she would leave the MO to do the same - design a treatment protocol of chemo. The RO likely would not try to tell the MO what he or she should do though she or she may have an opinion.
I wish I could help you with the other tumor related question but I don't know about it. I do know most chemos don't cross the blood brain barrier - so it wouldn't likely affect the pituitary tumor - the rads depending on the scattering might, I would ask the RO.
I'm surprised the MO is so involved. I only saw my MO 3 times, (too bad she was awesome) primarily and unfortunately my go to buy was my RO - (who has the personality of a stump despite being brilliant) perhaps this is because of the Erbitux and all the fallout from it.

Good luck - hope things improve soon. And do ask questions - you have a right to answers, you have a right to push, your sister should be asking, because informed and educated is the way to go when managing your own treatment - I was treated at a top facility used to dealing with cancer every day and I know that no matter how good they are, they see scads of people so - the individual tends to get lost.
Take care,

Oh dear, Cheryl. Does this mean he is worse of with the Erbitux than without? I've just the "Erbitux and HPV don't play well" thread and I'm horrified !!

I think you should ask your RO - and show him or her the article or have your sister in law - it may be too late to change meds at this point. Though - and perhaps with radiation bring the primary treatment it's not that worrisome. But do ask the RO... Take care.. And wishing your brother many blessings.

Hey Linda - so sorry to hear your brother is having a hard time. I'm going to address the swallow issue you mentioned. If he has aspiration pneumonia it is because his swallow is not as strong as it needs to be to keep small amounts of food and fluid out of his lungs. He should have a swallow assessment. Aspiration in the lungs can only get there one way - by leaking into the lungs when he's trying to eat/drink - he doesn't have to cough and choke to have a problem swallowing- the aspiration itself is evidence that he has trouble swallowing.
The up/down of his temperature could be due to many things but it is a very common symptom of aspiration pneumonia. It's called "spiking"- the body raises it's temperature to burn off the stuff in the lungs that shouldn't be there - so it is typical that you'll see the temperature go up as the body tries to protect and heal itself. If he's drinking fluids now it could be that he's aspirating small amounts - if he's not drinking, he might be aspirating his saliva as he swallows it, or even the tube feeding as you say he's not tolerating it.

I would suggest he have his swallow assessed and work on swallow strengthening exercises - you can go around and around with aspiration pneumonia if the swallow is weak and not functioning as fully as it needs to.

Take care,

Hi Linda
Same same with my Alex re the vomiting - even through the PEG. The formula was blamed so we changed it to a pump feed, which definitely helped. But his stomach continued to be dicky. We realised there was more to it when he started throwing up his Champix which had been administered via PEG crushed with a little bit of water. It came up so fast, it could not possibly have been the Champix (known for nausea and vomiting for some). We still don't know what caused this but assume the clearing of the stomach (peristalsis) was damaged in some way (although goodness knows with what)and was fixed with Somac and Maxalon which he still takes daily 12 months on. To this day, if Alex forgets his Maxalon, he gets waves of nausea as soon as he eats - almost always in the mornings. Somac is supposed to be taken daily but Maxalon is supposed to be taken 3 or 4 times a day (can't remember). We find that morning is worst so take it first thing in the morning before he "eats" and the rest of the day seems to be ok.

Almost like unblocking a drain which has become stagnant ...

With regard to your other question about the stomach becoming impaired because of lack of "practice", I don't know the answer but suggest you discuss the whole thing with your nutritionist or nurse as you oncologists are a waste of time for working on side effects. Next try the GP who is more likely to take responsibility for the WHOLE of your brother's health.

And, if you get the answer, would love you to share. Alex and I never worked out what was going on and Alex refused to discuss it with anyone as by then we had so many other issues going on, this one just kept getting pushed to the end of the list.

Thanks Jennifer and Karen. I very much appreciate your input and will keep you posted. Regards, Linda