It's not a "neglible gain" recent studies have shown as much as 13% higher survival rate when used with radiation.

The trick is to remain hydrated when you're going through treatment. You won't have kidney damage if you stay hydrated.

Cisplatin is some nasty stuff. I smelled like a chemical waste dump for about a month after it was over. Here is a very thoruogh link to everything you will want to know (and don't want to know about Cisplatin http://www2.mrc-lmb.cam.ac.uk/personal/sl/Html/Frames.html

Mouth sores maybe as long as 2 or more months after completion of treatment.

The antiemetics work 60% of the time according to the manufacturer of Zofran.

My actual "beam on" time was 40 minutes/session. The whole thing was about an hour.

The worst effects occur about 3-5 days post infusion. Just about the time you're feeling better, then it's time for the next infusion.

I am not trying to scare you but this is tough treatment and you're better off preparing emotionally and knowing what to expect.

I and many others here are living proof that you can survive the treatment. It was no walk in the park however.

Michael-

I agree with Gary -- you need to be prepared for the worse and hope for the best -- that's what Barry and I told all our doc's and nurses so we have already discussed options if plan A (or B, etc...) doesn't work. Every one of them, even our most "Ms. Sunshine" nurse, has said it is going to be very very tough. But they also have said, we are all (which includes Barry and me) going to work together to make sure you get through this...!

Barry is getting carboplatin instead of cisplatin for reasons noted earlier -- to not exacerbate his current high-end hearing loss nor contribute peripheral neuropathy to his already existing benign essential tremor (hereditary, his dad had it, does get worse with age). Also his renal function is fine but not that of a young man (he's 66). Carbo is better for all of these and also can be given in 1/2 hour; the down side is that (as a newer drug) there is a lot less data on long-term efficacy -- but what's available seems to indicate it has similar results as cisplatin as a radiosensitizer. Both work by forming platinoid bonds in cell's DNA, preventing replication. Both are potent myelosuppressors, thus anemia and platelet/white blood count depression are expected side effects and will be monitored before you get your chemo each time.

Barry plans to continue to do as much as he can while he can, continue moderate exercise and so forth. This helps with fatigue, as long as not over-done.

Barry's time in at the tomo-IMRT when there are no scans being done is only 20-25 minutes and that includes the set-up and take-down; the actual time the beam is on is about 10 minutes, watching the "Beam On" sign outside the door. They play music for him and the ceiling is a giant back-lit transparency of the galaxy.

His mask fit too tightly around his mouth when we did the walk-through; recall he had gained almost 17 pounds -- and it was pressing his lips badly against his teeth. Sort of a recipe for sores. The techs enlarged it a bit with RO's oversight and it was fine the next day ("perfect" said RO).

He is still having PEG issues and these are primarily stomach gas and burping etc. so glad to read that this is expected and should be temporary. It does contribute to his having that mild nauseous feeling, which is relieved more by Prevacid than an anti-emetic. We are going to ask nurse about this tomorrow in case she has a better suggestion.

Michael asks what to do for skin etc. Obviously nothing on before treatment (couldn't tell from M.'s post whether he was OK'd to put stuff on his head during the treatment) -- the second Barry gets out of the treatment he sips some cold water and holds in his mouth, then heads to bathroom and rinses mouth with cold 100% aloe vera gel, and swallows this. (Have to have the 100% stuff that is edible, get from GNC or similar. He uses about 15 ml. in mouth). He also smears some on his skin (or his Radiacare gel, which is mostly aloe). Then Biofine cream on skin, all radiated areas. It is too early for him to have broken skin or mouth sores; what he does at that stage will probably change.

We have a daily check list of stuff to do which includes various rinses and skin treatments, as well as the Thera-bite (7x a day) and fluoride. This works really well to remind him to do something. Having a routine helps.

Michael, keep drinking -- did your nurse give you a "target" amount of fluids per day? Barry's is 72 oz minimum. This and eating good foods as long as you can will really help. I know my mother had lots of problems eating during her chemo as nothing appealed, they told her "medicine is food" and to do what she could.

Good luck tomorrow --

Gail

Hi Michael, my dad is getting his second dose of Cisplatinum this Monday. Of all the struggles, he didn't have any issues with it. Where he is being treated, they require him to stay overnight to complete a massive fluid flush in conjunction with the chemo. They also give him an expensive battery of anti-nausea meds IV. Emend is one of them and he had no nausea. We are knocking on wood and continuing to pray that he won't have to deal with nausea.
Reagarding your question of how long all of this will last-my dad was perfectly fine until the last days of his 3rd week in. Then, pure hell. They gave him a week break and he is resuming tomorrow. Again, please be prepared for pain, meaning have your liquid oxycontin to squirt into your tube as well as Fentanyl patch for long acting pain relief. Since I haven't had to have this treatment, I can't express what it feels like. I do know that we both wished that his Medical team would have been able to be more specific about what to expect. Realizing that everyone has different reactions, we are realists and appreciate upfront news. Enjoy these next couple of weeks if you can.
The greatest thing is that since his break in treatment, his mouth feels 100%. Meaning, he is optimistic that once he makes it through treatment he knows he will feel okay again!
PS-his jaw is already tight and it is getting more difficult to shove the tongue blades in--

Thanks for the info Shawna.

Sorry your Dad had a rough time!

I got Emend ($ 40 a pill co-pay!) too, and a few others.

Sorry he had to take a break, but maybe it was good to show him how quickly he can bounce back after the end of treatments.

- Michael

Shawna --

The OCF web site cites a paper that concludes that the tongue depressor technique or the finger stretch method of dealing with trismus are pretty ineffective (go to "Trismus" page) . The Thera-bite system seems to work better and Brian posted on another forum topic explaining why the OCF site links to this company --

Medicare pays for (most of) it and so do many private insurances -- you just need your doc to sign medical necessity form and you fax to them.

Barry got it after talking to another Hopkins patient who did the tongue depressors and still can only open mouth 21 mm. It seems pretty easy to use -- will post to forum if it works...

Gail

Michael,

I just wanted to repeat what everyone else said about cisplatinum. It's a tough treatment, although everyone responds differently. It was especailly had on me because very few of the anti-emetics worked for me, although Zofran did-- usually. Compazine suppositories also helped a little (kept me from just moving into the bgathroom with the dry heaves) when everything else quit working--but I HATED the way compazine made me feel. If the first combo of stuff they give you doesn't control the nausea, be prepared for some experimenting around until they find the right combo. Everyone is different in what they respond to. I also have naturally low blood pressure so they ahd to wtch thatl, especially since I was getting amifostine too.

I'm also confused by the schedule you have. It sounds like they are giving you each treatment (3 treatements, which is the standard) over two days--I had mine in one day, which I think is the more common way, but it did take about 5 hours.

The effects on survival are hardly "negligible", though. This particular type of chemo ahs been really well researched in terms of how it affects outcomes in combination with radiation and, as Gary says, the gain is clearly well over 10% --at least for your stage. Even though I am stage II I chose to have it even though my medical oncologist said a rule of thumb would be that for stage II the gain in survival would be half what it is for stage II and IV. So I chose to have it even thoguh the gain I can expect tog et was probably more like 6%. Even that seems worth it to me. But heck, I'm also willing to take Tamoxifen for my breast cancer and throw myself into early menopause filled with hot flashes for the next few years even though the gain there is probably 5% at best. My medical oncologist (who used to be at Sloan-Kettering--moved here to bring up his kids) said his experience is that it's at around the 5% gain level where people are willing to go through some hard stuff and they still find it worth it. Maybe that numnber doesn't do it for you, though....to each his own judgment on this, right?

As for problems with the PEG, I think my gastroenterologist was very cautious about the insertion--they kept me overnight with IV feeding--he didn't want me to have anything in my stomach--liquid or otherwise for 24 hours after. But when i did go home, I never had all the problems with gas that it seems aren't too uncommon. So even though you asked a bunch of surgeons about swimming with the PEG, and they seemed to think it would be OK, I think I'm going to trust my doc when he says it isn't a good idea and water leaks in (he actually had a story about this--he's seen it happen). But let us know if you do go swimmi9ng because now I'm very curious!

I would also just like to say that if the rule here is not to use doctor's names, the two letter thing you're doing is making me a little uncomfortable--kind of like staying to the letter of the rule but maybe not udnerstanding the spirit of it (would it really be hard for anyone else to figure out which doc there those letters refer to?)

Has anyone else on here noticed that we are hypocrites at times about statistics?? We tell people not to pay any attention to them yet use them when it suits us. I have caught myself doing it also. I see it again here in this thread. I would hate for this thread to worry or scare anyone that hasn't had any chemo, only had radiation. I would hate for them to feel like they have a 10%-13% less chance at survival as no one on here can KNOW that. Some that had chemo will die, some that didn't will survive, there is no way to tell as there are so many other factors.
Ok, just felt the need to say this.
Minnie

Well, the whole thing is it's important to understand teh limitations to statistics. And what they mean and what they don't mean. The percentage refers to some percent of people that would benefit if they had both chemo and rad. that won't benefit the same way from just rad. But no one can know whether they themselves are a part of that percentage--you either are or you aren't--that part is just luck plus taking absolutely the best care of yourself you can given what you know now and knew at the time.

For me, personally, knowing the percent of people for whom a tough treatment created a better outcome is helpful in deciding whether I want to have that treatment with the hardship and possible long term negative effects that it entails. I would rather know and make my own decisions about that than have my medical oncologist decide FOR me that, say, a 5% gain in disease free survival is enough that I should have the treatment and all I hear is that I need to have it. I recognize not everyone finds this info. helpful, though.

I'd hate to think we couldn't discuss this information because it is helpful for those who want to know about it. I never would have considered doing concurrent chemo had it not been for those numbers. But I agree we need to be remind people that there is no way tell what percent you would be in when push comes to shove.

Nellie:

Thanks for the comments. Regarding Dr's initials, it's just for reference to those who already know the Dr by name.

I think the reason we don't use whole names is for 2 reasons, (I am guessing), 1) liability (for statements made about a professional here), and; 2) the "free advertising" one might get.

Using the initials solves these issues and sticks to the spirit of the rules.

I'll be happy to be your guniea pig about the swimming...You should know however that I have found several different types of G-Tubes out there and it may have something to do with the type. There are NG, PEG. PEJ. BUTTON & GT/JT to name a few. I think Brian mentioned using bags for his, and mine uses a syringe instead.

As far as Dr's statements, I think you put more stock in their opinions than I do. Just by the shear fact that they disagree on some many minor issues is evidence some are wrong. They can't all be right when they give conflicting information.

I trust and respect the medical field, but they are not Gods.

I talked to a GI here and he said the eating same day had NOTHING whatsoever to do with the bloating/discomfort, and it was simply due to the technique used by the surgeon.

So, there you have it, another opinon

As far as stistics, you are right. But there are ways to interpret them for one's own intentions and I think now they are more confusing for me than anything else.