Warning: Curmudgeon now has plenty o' postwhoring time on his hands!

What chemo are they giving you if you don't mind my asking? That's my job, so quit eating all that salsa queso. Or better yet, bring some in for the nurses.

Yeah, the kid is now my slave. Cheaper to make 'em than pay 'em.

bastomatic, my chemos are Cisplatin and Gemzar. Right now I'm off it because of the kyphoplasty, this week coming I have an appointment with the oncologist to get me back on schedule. It has been a 6 hour session every 2nd Tuesday, then a 2 hour session the next day, then a shot of Neulasta to bring the white cell count back up.

It looks like, due to something that got screwed up (and I am PISSED about that!) I will probably have to go back for radiation again to catch something that may have been missed. The worst part of that was, when I was in for the initial radiation, it looked to me like it wasn't being used on all the tumors. I asked, was told 'we just aim where we are told' and thus assumed the docs had it under control. I now discover, not so much.

This next appointment will NOT be a pleasant one for the oncologist. I'm a patient man but even I have my limits.

Curmudgeon wrote: It looks like, due to something that got screwed up (and I am PISSED about that!) I will probably have to go back for radiation again to catch something that may have been missed. The worst part of that was, when I was in for the initial radiation, it looked to me like it wasn't being used on all the tumors. I asked, was told 'we just aim where we are told' and thus assumed the docs had it under control. I now discover, not so much. This next appointment will NOT be a pleasant one for the oncologist. I'm a patient man but even I have my limits.

record this encounter... and tell them their incompetence is going on youtube!

Berkleying defecation heads... its tough enough when they do their jobs correctly...

best of luck!!!

Cisplat and Gem, know em well. Make sure you're drinking metric tons of liquids while on the Cisplat - kidneys hate the stuff. Maybe you can make money panning for platinum in your urine.

Any time you're not sure something is being done right, speak up for yourself. Assume everyone is fallable, and mistakes are going to be made. Might as well try to avoid having them made on you. They better get it right!

Question: the Cisplatin has metallic taste as a side effect. The docs have advised me to use plastic utensils etc which does help, but is there anything else which could lessen that? At least I'm off the Gabapentin which just KILLED my sense of taste; man I had forgotten how good vanilla wafers taste straight out of the box!

Just read that surgery description. I am amazed.

Best of luck.

Yeah, that thing is amazing. It really works; I was able to stand up straight and walk out. Best of all: I slept in my bed for the first time since July! No it wasn't perfect because the incisions still throb a bit but man it's so much better. Only down side: the doc says due to the tumors I am on light lifting (less than 10 pounds) for the rest of my life. That's gonna make it hard to pee... Once the next round of radiation and chemo are done, I might have him take a second look. But no I don't expect to ever yank engine blocks etc around, I will have to be very careful and recruit help if needed.

Curmudgeon wrote: Yeah, that thing is amazing. It really works; I was able to stand up straight and walk out. Best of all: I slept in my bed for the first time since July! No it wasn't perfect because the incisions still throb a bit but man it's so much better. Only down side: the doc says due to the tumors I am on light lifting (less than 10 pounds) for the rest of my life. That's gonna make it hard to pee... Once the next round of radiation and chemo are done, I might have him take a second look. But no I don't expect to ever yank engine blocks etc around, I will have to be very careful and recruit help if needed.

you bragging or complaining

There is really nothing to be done about the awful taste unfortunately. It should go away when you're done with the cisplat, but while it's going on it sucks. Neuropathy should also lessen after chemo, but may not disappear completely.

I am so glad to hear that you got relief for your back pain, that's amazing how fast it worked!

The neurologist said relief would would be almost immediate and he was right. He said to wait 48 hours before pulling the dressings off and taking a shower so that's where I'm off to. Not a moment too soon, I have had a terrible urge to stand upwind of myself.

Are you in violation of the Clean Air Act again?

no that was when he had hot salsa queso prior to trying to get the nurses to do the sponge bath

Platinum based chemos mess with your nerve cells - you've figured this out by now... They are also slow to heal. Some of the medical literature indicates PENS (percutaneous electrical nerve stimulation) and TENS (transcutaneous electrical nerve stimulation) therapy is as effective as meds (gabapentin/neurontin). Good blood flow helps the healing process. Some patients swear hyperbaric oxygen improves neuropathy, but the science is sketchy at best and insurance probably won't cover it. Some also say vitamin b6/12 and E can help. Vitamin E (antioxidants) and radiation therapy aren't particularly compatible though.

Things you can do to manage taste changes:

Maintain good oral hygiene - brush your teeth before and after each meal.
Choose and prepare foods that look and smell good to you.
Eat small, frequent meals.
Do not eat 1-2 hours before chemotherapy and up to 3 hours after therapy.
Use plastic utensils if food tastes like metal.
Eat mints (or sugar-free mints), chew gum (or sugar-free gum) or chew ice to mask the bitter or metallic taste.
Substitute poultry, eggs, fish, peanut butter, beans and dairy products for red meats.
Marinate meats in sweet fruit juices, wines, salad dressing, barbeque sauce, or sweet and sour sauces.
Flavor foods with herbs, spices, sugar, lemon, and tasty sauces.
Chilled or frozen food may be more acceptable than warm or hot food.
Try tart foods such as oranges or lemonade (this may be painful if mouth sores are present).
Avoid cigarette smoking.
Eliminate bad odors.
Eat in pleasant surroundings to better manage taste changes.
Increase your fluid intake.

Thanks for the list! I am not on chemo at the moment (suspended due to the kyphoplasty) but will find out this week what my schedule will be.

Gabapentin was the replacement for morphine, it gave me my life back; morphine is some awful stuff. I think the oncologist went overboard on the pain med prescription. The drawbacks of Gabapentin: hands tremble like crazy and it killed my sense of taste. I could smell stuff just fine, but when taking a bite, nothing. I quit those last Thursday and my sense of taste was back inside 24 hours.

A few folks I talked to today swear that sour foods - Granny Smith apples, sour apple Jolly Ranchers, lemonheads - eliminate the metallic taste in their mouth for a little while.

Also, apparently Zyrtec-D works really well at relieving bone pain after Neupogen or Neulasta.

That's good to know, I'll give it a try. Neulasta didn't seem to give me bone pain but the problem in my back may have overshadowed it, I was on the Gabapentin. I'll ask the oncologist (new one, not the one I am gonna fire today) about that.

Oh, and about apples: man I love honeycrisps!

Well, things have changed a bit. I have alluded to some dissatisfaction with my first oncologist, I cut her loose and hired someone new. The first thing he did was order a PET scan. So it was done last Wednesday, I had to stay away from the general public for a day because the PET made me radioactive as hell.

Friday morning I go in to discuss the findings. The damn PET scan looks like a Christmas tree; I have tumors in one rib and others in the soft tissues in my lower abdomen. I'm standing there gaping, the doc says 'unfortunately I have no baseline PET scan to compare so I don't know if you are getting better or not'. That's because oncologist #1 never ordered one.

So now I have to undergo MORE chemo, only this one is 'more toxic' (that's the doc's words). The higher toxicity means I won't be able to work for at least 3 or 4 months so I have had to quit my job with all that entails. The company is keeping me on the payroll and the insurance till the end of this month (they have been great through all this) but then I go COBRA, ACA or possibly on SS disability and/or Medicaid. Whoop de berkeleyin' do.

No word on my chances, this doc doesn't believe in playing that game. We will see.

Aw man....

Well, best of luck and medical science to you, man. Please keep us posted and let us know how we can help.

Pullin Hard for ya Curmudgeon.Bulldog it best ya can, and if ya need someone to slap come in here and berkeley with Bravenrace .

Jesus some people's kids are lazy shiny happy people.

Hopefully you are able to get all the correct care you need.

And if you ever decide to run away to coastal Maine I can recommend some amazing oncologists in Bangor.

We are all cheering for you, Curmudgeon!!!

Aww crap . . . More prayers being sent up . . .

Will be thinking of you, Curmudgeon. Hope you tolerate the chemo well and get a good result. The latest chemo drugs are really good at what they do. Keep us updated.