My brother is not feeling too well at the moment. He was going quite well until about 10 days ago. His weight was increasing and he was eating, though everything tasted not good.

He then started getting what seemed like flu-like aching bones symptoms. Legs, arms everywhere. That seems to have receded but today he tells me he's now aching in the shoulders and the fingers and that the hair on his fingers feels super-sensative like it has nerves (!), and that he is getting sharp pains in what he thinks might be the eustacian tube. Could this be scarring or healing?

He's very very tired, although he is waking up 3 or 4 times a night with a dry mouth which partly explains it. He also feels he is getting drier in the mouth, after a period of time when he thought taste and saliva were slightly improving.

He's on the east coast of Australia at the moment with the family, but his doctors are in Perth (west coast) and he is unwilling to see a local GP who will probably have no clue. I tend to agree. His wife is a nurse and feels he may have some sort of bug as one of the kids was a bit sick a couple of weeks ago, but he is, of course, worried about the cancer. He doesn't have a temperature.

I have told him that it's going to be two steps forward and then one (maybe two)steps backwards for months to come, but I do think he has taken a bit of a dive in the last 10 days. He hasn't eaten anything for a week, although he's chewing gum, drinking lots of water and downing 6-8 cans a days through the PEG.

We're all quietly very anxious about the upcoming PET scan in Feb.

My cancer doctors by the way have said to me, "even cancer patients can get the flu"...so perhaps he has picked something up a bug.

If you can, encourage him to try to eat something. Something soft and easy. Thrilled to hear he is drinking, but it is important that he not lose the ability to swallow so he doesn't want to go too long without eating.

Recovery is an up and down road - you were exactly right. Nothing you can do but keep putting one foot in front of the other waiting to feel better another day - and it will happen.

Please try not to worry about the scan in February. There is not one danged thing you can do to affect this scan and all worry does is borrow another day's trouble!! Worrying truly is an unproductive activity with no good result!!

The dry mouth will be something he will most likely have to live with. Get a water bottle with a lid that snaps shut and a closure. He can keep it in bed with him - have his sip of water and go right back to sleep.

Donna

For dry mouth your brother could try Olive oil. Apply a small amount of olive oil on a Q-tip. Brush tongue and inside mouth before bed. He could also try a new product from Colgate available at the pharmacy called Dry Mouth Relief - flouride mouthwash. (alcohol free)

Karen

Hi

Sounds like he might have a little infection which has made him miserable. This would also make him feel like he is not progressing. I found with Alex that initially, his recovery could be measured day by day and he was very encouraged and then he sort of plateaued at 8-12 weeks which made him feel he was going backwards. A lot of our dialogue went " you are much better than this time last week/month/year, when you couldn't .... " just to remind him of how far he had come as he sometimes couldn't see it for himself - especially when he was having a bad day. Being able to track back through emails and journals to remind him of his trials and successes has been really helpful to show him that even though he feels he is going backwards, he is actually going forwards - albeit more slowly than he had hoped.

I also think that early on, the survivor is so busy concentrating on just getting through the treatment, they don't even notice the other aches and pains which fade into the background in comparison. When they start to get better, they start to notice all the other stuff which makes it feel like they are getting worse.

Regarding the symptoms: The sensitivity in the fingers may be chemotherapy after effects (carboplatin). A friend of mine described a sensitivity to heat and cold to the point where touching something in the fridge could sometimes cause a sort of electric shock in his fingers. There is also something called Lhermittes sign caused by radiation, and which I only found out about last week through these boards. If you think it also sounds a bit like what Simon is describing, just search for Lhermittes as there is a link there that describes it rather well.

I am interpreting your description of "pain in his eustacian tube" as earache? If so, a GP could easily check his ears as he might have a plug of earwax in there giving him a hard time which could be flushed out by the GP or his nurse. Radiation also causes the earwax to dry out a bit and it can get "stuck" in the ear canal and cause pain. Also infection could be the cause and it may just be a case of time or antibiotics.

Dry mouth which causes broken sleep is also commonly described on the boards and people have suggested humidifiers to help. We have no experience of this so will let someone else talk about this.

The very good news is that he has a sister who loves him, supports him and is doing her damndest to understand his issues. Oh, and he doesn't have a temperature and the aches are receding which is also very good news.

Thanks Donna and Karen. I'll pass all that on.
Karen, not a day goes past that I don't think of you and Alex or mention you both to Simon or other members of the family. Hope all is going well.

I too constantly raved about the members opinions as they seemed to have more credibility than me. If only I had a dollar for the times I started with "DavidCPA had that" or "EricS says..." or "Charm thinks ..." as these people were male, solved problems rather than offered emotional support (Alex's preferred style of behaviour) and did it with a sense of humour.

There were many others too but those three stand out as the ones who resonated with Alex

Hi Karen Rose, thanks for your kind suggestions. Reading your signature, you've had a very tough time. I hope the surgery in January 2012 you mention goes well. Best wishes, Linda

Karen, love the olive oil suggestion. OO is also just a great additive if someone is having issues taking in calories.

Klo, great advice my dear and well written! Now let's work on integrating some of your favorite comedic lines to really bring it home! I say shake the place up a bit and mix in some classic Richard Pryor just make sure to edit it a bit or Christine will be all over you

It sounds to me like an ear infection which tends to happen 2-7 days after the beginning of a cold or other upper respiratory infection (flu) according to WebMD. Fatigue if it's not from just being drained or the flu could be linked to CRF (cancer related fatigue) and is common. As with anything consulting a Dr you trust is always a fantastic idea.

Hope that helps!

Eric