Kevin was on a low dose of Diflucan the entire time. Never got thrush. Just a thought.

Hellion I bought a Waterpik today based on the other comments. Brilliant. Highly recommend it.

Oral Thrush, a yeast infection or candiasis, is very common, and thrives on sugar, alcohol, yeast, so limiting them may help, and boosting your immune system since it's an oportunistic infection, not contagious, being your body can't make a balance of the naturally occurring candida in everyones bodies, that basically went out of control. Also, the usual treatment, besides home remedies, proper oral care, is local treatment with antifungals first, like the nystatin, so you don't develop drug resistance. If it goes further, it's treated systemically, usually with the zole medications like clotrimizole, flucanizole (diflucan), etc. it's easily treatable, if treated properly, if not, it can invade the esphogus (esphogitis), stomach, and go into the blood stream from there or through the gums, mouth ulcers. Once in the blood stream it's called invasive or disseminated candiasis, and difficult to treat, intraveniously, and can be deadly, up to 40%.

Probiotcs are often recommended by some doctors, some may not with a compromised immune system, like cancer, which can be dangerous some reports say, but in healthy people it may be ok.

In addition to the WaterPic, my radiation center sprayed my mouth everyday before or after radiation, and that help with the Mucocitis and oral thrush.

Ah yes, the WaterPik (TM)! I love this thing and have been using it since I started. I mix in a half teaspoon of baking soda and put it on 1 or 2 and let the water dig around in all the gums then I try to jet off any of the sore and icky bits from my mouth, cheeks and gums. Hurts like hell, sometimes, but I do get to see those lovely slimy bits of sloughs skin and blood hit the sink in tiny, satisfying little droplets!

My number one life support caregiver (my ridiculously lovely, patient, remarkably spectacularly beautiful wife) ordered the tongue scraper today -- We didn't know that existed.

As always, she's there and she's so spectacular and now she has to put up with a rather moody (if I'm honest) rather unpleasant patient. It's so not fair and I hate that I sometimes snap at her. I don't mean to take any of this out on her, but my patience is not always what it once was, and, if I'm also honest, it was never my best trait.

So thanks for all the advice. The thrush mess seem to be helping a bit, at least the Rocky Mountain Mouthwash no longer brings me to tears after my brushing/WaterPik (TM) adventures. No it just makes me whine like a puppy. Hopefully a couple of more days of the medicine and it will be more under control.

Monday is chemo round 2. Wish me luck!

The Hellion

Ditto - go waterpik. Warm water - mix in baking soda AND salt. Let dissolve and use. it WORKS

Hi Hellion,

You might want to print out your message (just above Donfoo's) and leave it for your lovely wife to "find"...

Happy Easter, brother, and I do wish you the best of luck for you upcoming second round of nobody's favorite chemo!

Bart

I got snapped at too. We understand, trust me. We cry in the shower....since we are sharing secrets..You are in this together. Sounds like she is rocking the care giver job and you are handling things as they come the best you can and that is all anyone can do.
Good luck tomorrow. Buckle up for the next week. Will be thinking about you. Write when you can!!
Kathy

OK,

Chemo 2 today and another treatment change. Given my side effects to Cisplatin (primarily severe Tinnitus which has faded but still comes and goes in severity), my chemo oncologist has determined that I am one if the not small percentage (I think I heard an estimate of 25%) of people that are incompatible with Cisplatin. We talked about it a long time, and she simply feels that the level of long-term, probably permanent side effect render that drug off the list. For my part, I think I can take the pain, but at the same time, I know that severe Tinnitus has driven real people really mad, even being attributed to severe self harm and suicide.

So...I know I won't commit suicide, but I think my cancer team isn't so sure and wants to play me with kid gloves. So there it is. Hearing loss they feel we could risk, but tinnitus, in this cancer care team's eyes, is too risky.

Please don't interpret the above statement as sarcasm, by the way. My wife and I have done a lot of research, but we are not experts. Before they made this decision, I met with another ENT, two audiologists, my chemo oncologist and I know they all consulted with my radiation oncologist.

What it means is I have been switched from 3 large Cisplatin doses every 3 weeks to weekly smaller doses of Carboplatin and Taxol (or something like that. I don't feel like digging out the paperwork they gave me again for the exact name). They feel better about the side effects and believe it will serve a similar cure prognosis. I asked about Cisplatin and they said they lean that way because it has a better clinical track record, or at least a deeper one, but that this is not unusual, and if a patient is incompatible with Cisplatin, well, then they just are.

What I'm hoping is that this doesn't jeopardize my treatment or my long term cure. I hate that I'm not in the best weapon system. That said, I guess my body isn't built for Cisplatin. Though it hurt like hell, I handled the nausea, general sort of achenes and mind numbing ringing/cotton head. The last symptoms, however, make my team of superbrains uneasy. I've seen I here that I'm not the only one that has received Carbo/tax in exchange, so I'm hopeful. I can say my chemo oncologist had no major concerns about my chance for cure.

So there you have it, turns out I really was too weak for Cisplatin.

On the up side, the treatment went well today. As before, my wife sat with me, held my hand, read her book while I slept, picked up my new srcips and generally made me feel like a very pampered guy today. As always, I'm so grateful for having her in my life!

So, anyone have any opinions? Did I get pushed out of the best because they're being too cautious or did I get moved to a solid alternative because the potential lifelong side effects are simply too dangerous? As I told my chemo oncologist -- I'll take whatever I have to to cure this filth. She assured me this will do the job. She is, like me, convinced that I walk away from this scarred and changed, but cured, so that's nice!!!!!

So far the side effects are better than the last time, so that's good. I have to go every week, though, for 4-6 hours, so that sucks. Although I whine a lot about the pain, etc, I have no intention of letting ANYTHING stand in the way of a full on cure.

I'll add more to this tomorrow - need to get some more sleep.

The Hellion

I had the Big 3 Bag Method of Cis and I ended up with permanent hearing loss. It isn't bad enough to warrant hearing aids but it is a nuisance. Remember I had my treatment 8 years ago so I hope a lot has changed at least in the doctor to patient communication but I remember telling my MO about the buzzing in my ears after my 3rd Cis and he said "I wish you had told me because I would have swithed you to Carboplatin which is just as effective but won't cause hearing loss." To this day I'm stunned by that comment.

It happens. As I said in many of my posts, chemo can mess you up sooner, worser than radiation to some extent, and is not to be underestimated. It's good your doctors were monitorng you, and switched to carboplatin, taxol, although they are all poisons, have side effects. Carboplatin will be given by your weight, I had 100mg, and the taxol may be low dose.

I had 5 days high dose TPF Induction chemo with Taxotere, Cisplatin, and 5-FU in 2009, which in one week is more chemo than is given in 7 weeks treatment. The bad part with this is once it is given you can't take it back, adjust, change, and I was one that had a bad side to it on the 6th day when I went home, and lucky to have survived, but it prevented me from further treatment, even other chemo's for years, and still suffer it's side effects, some which are permanent. The same with the three large bag Cisplatin some do not get the 3rd bag, and even the weekly cisplatin some do not complete the last one or two.

I had Erbitux and Taxotere for another treatment with radiation in 2012, and after three weeks the Taxotere was stopped due to worsening my neuropathy, anemia. You also have to watch out "hand and foot syndrome" eye infection due to blockage of tear duct with Taxotere, and is more likely to cause hair loss, thinning than Cisplatin or carboplatin do, but grows back.

My last treatment in December/January, I had carboplatin with radiation, which was easier than all the others for me.

Good luck.