Updating from last post

[Joppette]

Hello again,

I have not been here for the last few days (again) because my internet just has not wanted to work. I have a new service provider coming in on Wednesday to change to Satelite, and am hoping that will help. I'm a pretty regular "poster" here (LOL), so if a few days go by, it's likely that I just can't get on line.

Update is that cycle one was finished on the 24th, and I am thankful for that. It was a rollercoaster ride for sure. There were normal and expected side effects of muscle and bone pain, fatigue, loss of appetite, and nausea. But there were a few I didn't know about or expect. I kind of knew about "chemo brain" but this has been something else! Just taking my medications has been a challenge from getting the pill out, to putting it in my mouth and swallowing, to writing it down that I took it. If anything distracts me (like a phone call, dog barking, squirrels LOL or other), I can forget where I'm at in the process.

The vision changes were a surprise. At first I was getting what I can only describe as flashes of color. My floor tile is multiple shaes of gray, with tiny specks of blue in it. The blue became this intense cobalt electric kind of blue that hurt my eyes. The alarm clock display was so bright in the dark that it made my head hurt. Other days the vision was just blurry for no reason. I've talked to the doctor, and they feel that it is probably side effects of the chemo. They offered to do a CT scan of the head just to make sure that the cancer has not spread, but there's no reason to think that, and I don't. They did a scan in January, so it would be dramatic for it to change so fast.

They think the chemo may be causing these migraines that don't cause intense pain, but instead cause vision changes.

The mouth sores surprised me too. I got them five years ago, but only after the 4th cycle. These started a few days ago, and have been disturbing. I just didn't expect it nor did I have it this severly the last time. Yesterday they prescribed a BMX mouth wash that is a pain killer that works well. It tastes awful, but who cares? In addition, they prescribed a anti-fungal medication (Nystatin) that is supposed to help get at the root of the problem and solve it. I SWISH and SPIT the BMX, and I SWISH, SWALLOW and SPIT the Nystatin. So I wrote them down in my medicine log (for sake of abbreviations) as S&S for BMX, and SS&S for the Nystatin. My abbreviations at least gave me a little grin.

The other side effect that I didn't know about or expect was the intense hearing issues. When the chemo was first infused, I got these incredibly loud whistle sounds, that were high pitched and loud. After that, I'd get this hum sound that was loud and distracting to say the least. In the last couple of days it has turned into a loud "white noise" kind of sound. They said a rare side effect of the chemo (I think it's the Cisplatin that they are blaming) is hearing loss. The options are to consider cutting the dosage back, or stopping Cisplatin entirely and going to Carboplatin, which I've had before.

I'm supposed to start Cycle 2 this Thursday. My Onc. and I are meeting first to talk about all of this and decide what the next steps should be. I don't know what he will advise, and I don't know what to ask, so I'll just wait to see what he has to say and we'll go from there.

Now that I have internet (hopefully long enough to post this), I hope to go back and catch up with all of you on the dialy AIR. I've missed reading that every day. It always manged to give me a smile even in light of this tough stuff.

Judy in MI

[Bud Baker]

Sorry to hear that you're having such a hard time with the chemo, Judy. The Gemzar (gemcitabine) gave me such a headache that they did an MRI on my head to make sure the cancer hadn't spread there, so you're not the only one who's headache made them think twice. Hang in there. I hope it gets easier.