The Plan for me.....

Kent Cass said:

Schedule
So, you're going to get just the Chemo for the first 9-11 weeks, then start with the 35 rads a couple months after the first Chemo?

Likely the "other" drug is what we all get- 5FU/Flouroracil. That is typically why the Port is installed, as it is delivered via pump. Usually, though, that is also given during the first Chemo at the same time as the Cisplatin drips at the Oncology center. So, first you're only getting Cisplatin drips for the first 9 weeks?

John, and others, know more about this regiment than I do-AND I ask them for input, for you. And, for clarification from you, P-51, on the actual C&R regiment and schedule. Very important. We are not Drs, but the collective lot of us do know a lot. My understanding is that the regiment goes:

1) Flushing and 2 or 3 Cisplatin drips to start, concurrent with 5FU delivered by pump for 96-hours, three times over 9 weeks

That done, then

2) 35 rad sessions with a secondary Chemo, typically Erbitux

That done, then

3) Perhaps another round of drips with another secondary Chemo

Look forward to your response, Phrannie

kcass

Kent Cass said:

Then-
They are starting you with Cisplatin drips, 5FU and rads, all at the same time?

I ask, Phrannie, because it's typical to get Cisplatin drips on a Monday, then wait three weeks for the second drip, and then another three weeks for the last of the drips- that's the 9 weeks. Also heard of Cisplatin after the initial regiment, but there are also other chemo meds that can be used. Taxatore is one, I think. Does kinda surprise me you won't be getting 5FU from the start with the Cisplatin, but it might be a new and better way. Sure do hope so.

kcass

Skiffin16 said:

My Regime'
As Kent said, mine (and a few others here) was similar, but a little different.

Nine weeks (three week cycles) of Cisplatin, Taxotere on the 1st, 4th and 7th Monday. After that on the same day, they would hook up the 5FU pump and I'd wear the until Friday morning (it would empty late Thursday night and I'd clamp it off and turn it off.

Friday I'd go in, they'd give me a bag of fluids for hydration, flush the port and send me on my way.

I would take Emend the first day of each of those Mondays, and the next two days after.

I would get Neulasta injections each Monday of the 2nd, 5th, and 8th weeks. That was for helping the blood count regeneration. As a side note, about a day or so after each of those injections, especially the first. My bones would get achy, like the flu for a day or so.

All was ran through the port also mentioned by Kent and through a pump. The pump speeds up and simplifies the process. Usually the very first day is very long, as the are seeing how you tolerate the drugs and various other things they pump into you. The also see how fast they can pump into you and tolerate it (to speed up the process).

Note: Take a lunch, it's a long day and the pro's (other patients), will have brought theirs and be eating in front of you while you are staring...enjoy your taste while it lasts.

Also, sit near the restroom's if you have a chance...once they start running the drugs, fluids, lasix and other through you, you'll start flowing... (I was nick named "The Pee King"), if that gives you a hint.

Sooooo, after that nine weeks, I started my concurrent, which was as follows;

Seven weeks of chemo and 35 daily rads... I would get Carboplatin every Monday of the seven weeks. Then I'd get the Amifostine Injection (BTW it is most effective if given within 15 - 30 minutes just prior to radiation). I'd then go down to the radiation session, get masked up and have the rads.

The rest of the week, Tuesday - Friday was juct the radiaiton sessions.

That is why I refer to this seven weeks of treatment as GroundHog Days, like the movie...same thing, day after day...

It was mentioned to me that the order just happened to be what was best inustry wide at the time. That just could have concurrent first, then the nine weeks of just chemo, or my sequence.

The concurrent as Kent mentioned has the benifit of the chemo (usually it seems either Carboplatin or Erbitux) to enhance and make the radiation more effective...or so I'm told.

The Zohran, and others are just used for any days that you might feel a little sick... I was lucky, I never got sick other than feeling bad one day when someone kept talking about it...LOL.

Good news on the PEG, at your weight, it's a great idea having it in place already.

As for the Amifostine, some start having reactions eventually towar the end of treatment...that being said only to make you aware, not to cause any anxiety.

I 100% recommend it...as a side benifit, Amifostine also supposedly helps to minimize the thick ropey phlegm you here a lot of people on here talk about... I never had that, and I did get all taste and nearly all salive back, so I can only presume that the Amifostine aided those. Most do seem to get their taste and saliva back regardless of Amifostine though.

BTW, my reaction to the Amifostine started around day 32, and was just high fevers...nothing more for me...just didn't want to leave you hanging on my side effect. We figured it out in a day or so, stopped the injections and finished treatment.

Oh, while I think of it, my injections were in my tummy each day before rads....left a small itchy spot, so they'd rotate the injection site around each day.

Any other questions, please feel free....

Anyways, more info than you ever wanted to know....

Best,
John

Kent Cass said:

The Plan
Sounds like they've got it all mapped out for you. I, too, was prescribed Compazine, but only "as needed," and only took a couple tabs during my entire treatment. Only nausea problem I had was likely due to overnight mucous from being horizontal in bed, which is why I became happy to only get 3-hours sleep/night in bed, and more sleep in my recliner. Not sure about the way your Dr wants you to take it as preventative, but maybe others, here, are aware of such.

One issue does seem to remain- where's the 5-FU in your treatment? Flourouracil, Phrannie. Think most all of us get it right from the start. Good stuff- inhibits C cell replication, and has been used for some 40-years. That's typical of why we get a Port installed in our chest. A possible answer to my question may be due to your getting the rads right from the get-go, along with Cisplatin. Still, I got the impression we all get 5-FU as a H&N Chemo. Perhaps that is the unnamed drug you allude to. Were I you, I would ask your Onco why you're not getting the 5-FU at the start. Possible your Dr thinks the side-effects would be too harsh, what with the rads and Cisplatin, but it might be a concern.

To me, I think it's a good thing that you're getting the rads right from the get-go, as there is a known Primary target, and such concurrent is the standard for NPC. As John said, it is widely thought that there is an interaction between the Cisplatin and rads that make the rads more effective. Not aware of any facts in regards to this, but it is what I also think is the case. So, that would seem to be a very good sign about your Drs quality of care.

kcass

Kent Cass said:

Gloom and Doom
It's just an anxious time, Phrannie. On one side of it, there's the anxiety of the treatment and what it'll put you thru. On the other side is the wanting that treatment to get started- to get the C out of you. And, somewhere in the middle, is the thinking that it's not fair that this C has invaded your life. Think all of us have been there, for however long.

Treatment, itself, just is what it is. Very much part of the job of your med team is to see to it you get thru this okay, as you will. All you gotta do is keep them in the Loop as to how you are really doing- that's all you gotta do, and then they'll see to it you're doing okay.

As for wanting the C to be gone ASAP- that's of the Positive we've all found so useful. Only way to get rid of this problem, so let's get the show on the road, so to speak. That is what you need, and want.

And, as for the fairness thing- just is as it is, Phrannie. Not a one of us, to my knowledge, robbed a bank, killed anyone outside of military necessity, or did anything else to deserve H&N. And the Lord didn't do this to us. It just happened. All one can do is accept it, then move forward with doing what needs to be done. Once treatment starts you will keep busy with it all, and such anxiety as you're feeling now will just not be there. Could be that's really all that's going-on tonight- you wanna be actively doing what it takes, now, to get this C business taken care of, as it will, and they're making you wait to get started, as they do all of us. You'll get there, Phrannie, and beyond to a very good life on the other side of H&N. That is fact. Know it, and

Believe

kcass