Hi Everyone,

I have been away and unable to respond so was extremely gratified to get online this morning and find such practical questions and solutions.

Alex is on no regular pain medication and left the opiates behind 6 months ago except for the occasional one when a round of golf (with a buggy) gives him a hard time. The only regular drugs he is on are a proton pump inhibitor for gastric reflux (Somac) and an anti-nauseant (Maxalon). We think the mucositis has extended all the way through his gastro-intestinal tract thanks to his chemo drugs and there is some issue with his gastric emptying cycle. I am sure this will return to manageable without drugs one day, it is just taking its own sweet time.

Maria, thanks for your point about cisplatin - I too think this has caused his foggy thinking and am looking for ways to "detangle" his synapses. Anti-depressants can do this.

Anne, Eric, and David, thanks for the reminder re thyroid. Had a blue with the radiation oncologist over this in February. He told me that thyroid levels would be done 9-12 months out and I wanted them done 6 months on. Here we are 12 months out and TSH is not done so have undertaken it myself with the primary care physician. As we didn't have baseline levels done, it is hard to know what Alex's normal is, but thyroxine is on the list to try when we get results back (due in the next couple of weeks).

Eric, yes, testosterone is low, and Alex is on baby doses of anabolic steroid injections once a fortnight. Unfortunately, the brand we were using went out of production worldwide for a few months and we had to switch brands (with different dosing) which did not agree with Alex so much. The first brand is back and we are going with it next fortnight as it definitely improved his mood and appetite, whereas the 2nd brand caused irritability and pimples.

Therapy is not an option - in Alex's mind all things ending with ology are lumped in the same category as astrology. I even struggled to get him to accept speech pathology as a rational, science based practice. Margaret the speech pathologist is his best friend now as she is the only one that listens to him and treats him like an intelligent human being unlike both ROs. Two days after a modified barium swallow that showed Alex had real swallowing issues, ROs, who have been struck out of the will, made Alex feel like a failure by suggesting that there was no functional reason for him to be not eating AND made fun of the fact he had another barium swallow at my insistance 3 months after radiation which REALLY made my blood boil.

Christine, yes a pet has saved Alex's life in my opinion and maybe there should be a thread dedicated to this. He has a Siamese (called a seal point Burmese nowadays). Besides being great company for him when he was so sick and unable to leave the house, it was a responsibility that gave him something to do when she needed feeding or letting out. This cat is like a dog and cracks the neighbours up as she walks with him to the rubbish bins up the driveway and back again every day. Unfortunately, she developed a taste for the pump feeds and if we had a leak in the middle of the night, we would have to clean it up immediately before she did it for us. She got quite fat, and I am not sure it would have been very good for her. Their relationship has changed quite markedly over the last 12 months as Alex has become very attached to her.

Thanks for the names David - I was trying to short cut the trial and error part of taking anti-depressants and was sort of hoping that someone would come back with "oh yes, I took xxx and my thinking processes improved" but in hindsight that was a little over optimistic and unrealistic. Anti-depressants are way out of my league although I know there are different mechanisms of action and they target different chemical reactions in the brain. My ignorance means that I cannot work out rationally which type would be most likely to work on cognitive function.

Can't remember who mentioned St Johns Wort - yes I considered this but it interacts with so many things that I thought we had better work with the drugs that are on the doctors prescription software so that computer will say NO if we pick one that interacts with any of his other drugs (Somac, Maxalon, or steroids).

Thanks again everyone, if anyone wants to suggest any more names I am still all ears.

Karen