Tim has had 4 chemo sessions so far, the last one was on Wednesday. I took him to the ER for a fever at 1:00 today, as per our discharge instructions. They admitted him for the night to give him IV antibiotics. His blood work was "okay" (WBC=4.0) but they aren't sure why they can't get his fever to do down.

He has such a long way to go yet with his treatment, and I'm worried. His mouth is all torn up and he can barely eat. He's only had 11 radiations so far.

Did anyone else deal with extreme side effects so early in the game? I'm looking for a little reassurance that this does not mean he's going to be in the hospital every weekend! (and that he'll be able to continue with his treatment)

Thanks for all of your help.

Hi Wendy,

I start my rad Txs on the 16th of this month. My radiologist told me everybody responds to treatment differently. And that I should get a pretty good idea in the second to third week of Txs. He also said there is a possibility that it will be pure hell if not worse...not exactly what I wanted to hear. Your day 11 would fall in line with what was told to me.

The good news is that you're following your Doctors orders and took care of the situation. If he's not drinking a lot of water (48oz) and taking in 2000 to 3000 calories a day...Does he have a peg tube to help? I would definitely tell the treating physicians everything. Ensure, boost, VHC has a lot of calories. I used all of them when I was on a liquid diet...diluted all with vitamin D milk.

Good luck...others here will have more and better information to lay out for you...

As Ray stated we all respond differently to treatment. There have been a few who had a more difficult time early in treatment, but it's not that common. He could have the flu or some other unrelated infection as well.

It seem to be more normal to at least make it to the fourth week before having a significantly sore mouth.

You might ask for some liquid Lidocaine. I was prescribed this "just in case", but never needed it. Nevertheless, I understand it helps with eating when you have a sore mouth.

In week four I quit wanting to eat because of my taste bud. Does Tim have a PEG tube?

Tim does have a PEG and I'm going to insist that he starts using it today. He's still in the hospital and they still haven't determined the reason for his fever, which has been going up and down (currently down and normal). He also has thrush (they've been pumping him full of antibiotics). He's 100% miserable and now I'm more worried because from the sound of your replies this is not "typical" at this point in treatment.

Ugh, is it 2009 yet? Time travel would be such a nice skill to have. :-(

Do make sure that he gets all the daily calories and water that his docs recommend and I hope they recommend at least 48 ozs of water and between 2000 and 3000 calories EACH and EVERY day BUT make sure that he continues to exercise his swallowing muscles. It doesn't take long without activity before they will just shut down and create problems post Tx.

Wendy,

It does seem a little early for him to have all these problems but, everyone is different.

I had to take Bill to the hospital because of fever and neutropenia around week 5. Because of his immune suppression, he was placed in a private room and lots of gloving and masks for all who entered.

They never found a reason for the fever but he responded to antibiotics and fluids and it seemed that after his hospitalization he just simply got better even with another week of treatment, etc. I have theorized (this is just my opinion) that he had mouth sores that became infected and once those responded, he was so much better and was eating by mouth totally the second week after treatment.
Keep your chin up...it will be over soon and you will be on the recovery side of this mountain. David mentioned keeping his nutrition and fluids up...this is so important, so use that PEG to get the optimal amounts in every day (I charted it since it all becomes a blur after a while,) but also make sure he is swallowing a glass or bottle of something each day also -something that you can monitor.

Hugs, Deb

Thanks, everyone. He's still in the hospital. Major problems w/constipation right now. Too much info, sorry. His fever is down and they did not determine a cause, but your idea about the mouth sores could probably be true for him. His mouth is an absolute mess. We're waiting for the dietician to stop by so we can get started with the PEG, but I will do my best to make sure he continues to swallow. Poor guy.

Wendy . . . my mouth was in terrible shape after just 10 tx. Not typical but it does happen. I had to write notes to wife as I could barely talk. Had to forego tx for a few days to have peg put in. Thereafter poured in 2,500 cals a day of Jevity and also medications which I simply could not have swallowed. Your doctor should be on top of the "blockage" problem you noted as that is par for the course during this period of treatment. Very difficult to believe now but better days lie ahead. Keep the faith and best wishes to you two.

Wendy-The mouth issues and fever can be side effects of the Erbitux. My husband had both these symptoms with it. He had Cisplatin with the rads first and had the Erbitux a few months later and had a much stronger response to it. Try to get your husband the liquid Senna. It is a vegetable laxative and can be put through the PEG. It has worked wonders. It's not too much info- so many people on this board have great remedies for such issues. Things WILL get better-hang in there!

Sue