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nausea w/pci


schmaydee

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Hi schmaydee...

I'm going for my 13th and last PCI tx today. I had a wee bit of the chills the first couple of days....and a dull headache. But since then, only a mild headache some days and some days I also have been REALLY tired, where other days, not so much. I have sort of noticed that some nights, sitting watching t.v. that I am sorta cold...and need a blanket over me. Now...our weather has turned chilly, so maybe that's all it is...OR maybe I don't quite have the chills but I AM a bit more reactive to the cold due to PCI....I don't really know.

I have had NO nausea whatsoever...but I'd ask the rad onc about whether an increase in your steroids might help that. My rad onc said I might need to double my dose IF my headaches got any worse....but they haven't. I am on 6 mgs of prednisone daily for another condition...and so I've just stayed on that amount thru PCI and didn't have to up the dosage.

How much longer do you have before you finish? If you have two weeks behind you, you should be about done. But I'd still ask the rad onc or at least have the rad tech or nurse find out for you if an increase in the steroids would take care of this.

It hasn't been all that bad for me. A little more difficulty finding words in my head some days :roll: and being more tired have been the most noticed symptoms. I hope you get some relief for your symptoms....but again, it should be over soon and hopefully, other than looking like billiard balls again, we should be fine...eh? :wink:

Let us know if you get some relief...ok? Thinking of you.....

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Schmaydee -- if you're being treated by the same group I am, let me say that I am SO impressed that you're having PCI, since they won't do anything with me except wring their hands, then sit on them and make hmmmmmmmm noises!

I'm just so glad to hear from the 2 of you in the midst of this treatment, and that you're both hanging in there. YAY!!!

Di

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You and I use the same places, just opposite sides of town. I have an appointment at Vanderbilt on the 30th, so will see if they want to treat me over there!

Seriously -- I had my last chemo on Aug. 22. I had the last chest radiation on Sept. 9th. I have had NOTHING since then. Nothing. Nada.

Well, I've had scans out the wazoo, and then hand wringing and equivocation, as in "Well, it could be this or it could be that ..." -- yada, yada, yada.

If there is still cancer there, then I should be in 2nd line chemo or something, wouldn't you think? If not, then I should have already had the PCI and been done with it, wouldn't you think?

They said this cancer was "aggressive" at first, yet now they seem content to just sit on it and order scans every month, and then more scans because they don't have a clue what the last ones show, and on and on.

I realize that medical science isn't exact, but my survival depends on someone DOING something rather than just sit and wait and say "we don't know."

I hope the lung cancer specialist at Vanderbilt knows better -- I'm counting on it. And if he does, it will be my pleasure to go to that group of oncologists in person and the radiation oncologists and tell them that I'm changing providers and why.

(Can you tell I'm more than a little miffed about this? :evil: )

Di

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Hi schmaydee,

I just finished my 20th and final PCI treatment yesterday. The first week I had headaches, nausea and my eyes didn't seem to work right. They put me on 8 mgs of decadron and that worked. Mid treatment they dropped me to 4 mg a day and that wasn't enough. I went back to six and today I go back to 4. I sure hope you can find out what is causing you to feel so bad. Just hang in there and you will be through before you know it. Take care.

Hugs,

Nancy B

ps to Di - I sure would pursue the PCI (they upped my treatments from 15 to 20 just to make sure).

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is decadron a steroid nancy? do you feel better since you (completed) dont have the treatments? how long does it take to get back up to speed after youre done w/pci?

...i went in today and my rad-doc fixed me up w/some steroids....i think i'm feeling better....

i was told i might get fatigued "after" i had completed the treatments so i was a little taken back......when i got sick immediately (the next day) after getting the first treatment....

di.....i'd get on somebody's butt about the pci thing...(youre in remission right?).....if so....i'd want a reason for "why not". my onc-doc kinda told me "the (tumor) must be dead"......."youre in remission" "lets do pci and come by in 6 weeks".....

the pci thing was /is a lot more than i thought it was gonna be...i got real sick w/that stuff..... maybe the steroids will do the trick... ...s

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Schmaydee, I wish there was a good answer, but there isn't. All I've had from them for the past few months is equivocation. "We don't know."

These are the same docs who couldn't wait to get out of the starting gate with treatment initially. The cynic in me says that this is making lots of money for them, so why speed up? People would faint if they saw the bills for what radiation costs, and chemo, and the times I went in there and waited over 2 hours just to see a doctor for a few minutes and my insurance company was billed $600? Sheesh.

Now, they make more money by having me undergo scans -- at least 1 a month, and then they "don't know" what the scans show, so we wait another month and have another one. "It's probably scarring, but we're not sure," so wait another month and have another one. Of course, all these scans they want done in the imaging center that they own. (Interesting how they slowed down with the scans when I informed them I was having them done elsewhere. I figured taking away their financial incentive might lessen their eagerness to order so many, and it did. I've had 1 since radiation stopped, and will have another next week. Had I done what they wanted, I would already have had 3, one next week, and another one in January.)

That seems to be their plan anyway. It isn't mine. And it's going to change -- REAL soon.

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....i was kinda surprised they didnt have me set up for another scan...they did one ct scan 3 weeks(?) ago......and said the tumor was blah,blah (the size of a cigarette pack)...and it is blah, blah (smaller than a golfball)....it must be dead.... you're in remission......

i'm not sure i'd recommend the vanderbilt thing......that's where i had my dad go (esophageal cancer).... very bad experience..... especially w/getting in and out of there and the waiting......

i think they are just not totally sure your cancer is "absolutely gone".....ofcourse nobody can be.... doesnt mean you cant get the pci...

i got to where i was really feeling good before the pci.... close to where i could get back to work and everything...how are you? is your strength returning.....that might be some of it.... ...?...

i use dr patton (onc) at southern hills ....and dr cohen (rad) at summitt (in the annex not the hosp)...both are easy to get into see (that means a lot).... i would recommend both or either...... .....s

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As if people can't tell, I have been in a lousy mood the last few days. I am going to rant again.

This isn't the first time I have heard of oncs comparing a lung tumor to the size of a cig pack!! To me that is unbelievably--not even sure what word I want to use.

I just can't imagine an onc comparing any other tumor to a anything cigarette related.

Their choice of metaphor does not seem to be a coincidence. I think it's low, real low.

elaine

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As if people can't tell, I have been in a lousy mood the last few days. I am going to rant again.

This isn't the first time I have heard of oncs comparing a lung tumor to the size of a cig pack!! To me that is unbelievably--not even sure what word I want to use.

I just can't imagine an onc comparing any other tumor to anything cigarette related.

Their choice of metaphor does not seem to be a coincidence. I think it's low, real low.

Today I was researching on a website created for med students by some Rad onc. There were case studies, one of lc. Of course, even a idiot like me can tell when the patient will have lc even without looking at the xray. The case histories alone tell you--smoker of a gadzillion cig pack years, and loss of weight as if that alone is how lc patients present.

Anyway, when you click to the "answer" it starts out, "Stupid bas---d...."

elaine

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hehehehe....

..... the onc didnt say that....he'd never do that..... he said the blah,blah part (actually so many cm's by so many cm's)...... i was the the one that made the cig-pack analogy......

my docs have never said anything about the cig thing (i smoked 3-5 packs a day).....if they did i would think that they "must not be very smart"...and send them packing....

but then again i quit smoking when i got cancer...... ..s

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Decadron is a steroid and it really helped me. I was told that there is a 2 week lag in the radiation. The first two weeks I didn't have many side effects once I went on the steroid, some fatigue and just generally not feeling good. The last 3-4 days my forehead and temples and ears have a really good "sunburn" - they gave me Aquaphor to put on it. They said the burns will intensify the next two weeks and will then get better - also same with the fatigue. I have been going straight to work from radiation but headed home if I started to feel shaky. I just try to sit down or lay down when I need to - I am not one to baby myself, BUT there is a time!

I sure wish you didn't have to be so sick with the radiation. Take care, please let me know if I can do anything.

Love and hugs,

Nancy B

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Schmaydee -- I'm having the opposite experience from you, apparently. I don't like Vanderbilt either -- I don't like the way they treat people (and they are the only one out of literally dozens of places I've been who are threatening to sue me over a bill that started out at $350 and I've now paid down to $150. So much for the "goodness of non-profit" facilities!) and I don't like having to make my way through their maze. But this guy is a lung cancer specialist, so I'm gathering up copies of records to take to him for a 2nd opinion. I will say that if he will actually treat me and not have me sit and wait, I will probably just change over to him, and just put up with Vanderbilt as best I can.

Since I was diagnosed (June 4, 2004) and started chemo, I have not been what you would call "sick" at all. I took a total of 2 of the anti-nausea pills they gave me, because I thought I was supposed to, then found out I was only to take them if needed. I never needed them. I had a minor bladder infection after the first round of chemo, and it went away quickly (well, after the 9 hour wait I had to endure just to get something to take for it - and that is another story).

I didn't lose my hair. My blood counts stayed good throughout, except for platelets which were down once (85,000) just before the last round of chemo, but they came WAY up (360,000) within a few days. I never had a fever, my blood pressure was normal throughout.

I have worked all through this. While I was having chemo & radiation, I would leave a little early and go home to rest for an hour or so, but could then get back up and go until bedtime. The week after I finished radiation, I started working full days.

I have not felt "bad" since I was hospitalized -- just the icky taste in my mouth, the esophagitis from radiation that was more an annoyance than anything, and didn't last very long, and being a bit tired. I have the wheeze from radiation (scarring) and even it feels like it's trying to go away this week.

I have no problems breathing, and no other side effects whatsoever. I have felt better the past few weeks than I have in a LONG time. My energy level has been great since just after radiation stopped (on Sept. 9th).

I've been told just about what you were told, it sounds like. That what they are seeing in my chest is "tiny" -- the Pulmonologist thinks it's just scarring. The Oncologist just wrings her hands and wants more scans. With you though, they are actually DOING something. With me, just sitting on their hands after wringing them, and saying "we don't know."

And according to the Radiation Oncologists, PET scans are "useless" until 4-5 months after completing any kind of radiation therapy. That would put me into January since my radiation ended Sept. 9th. The Onc. have ordered one PET scan after another, I've refused, referred them back to the Rad. Onc. to find out why they aren't "useless" any more, then had them come back and order another one, and on and on. I'm having one next week, then will see the Oncologist on the 29th, and the specialist on the next day -- the 30th.

Here is what I think may happen that I do NOT want to happen -- that the PET scan will be, as I'm told, "useless." It will, as predicted, "light up" everything inside me, and the Onc. will then want to submit me to one after another invasive procedure -- biopsies, scopes, etc., to rule out what is probably no more than just interference on the PET scan. My insurance company isn't going to pay for any more PET scans (the one next week will be #2 since June, plus one CT/PET combo, plus 2 CT scans of my chest and one CT of my head) for a while, and I sure can't afford it, so there will be no choice but to just wait and see. So, it will all have been wasted -- wasted time, wasted money that the insurance will pay on a scan that they knew up front would be "useless."

So, yes -- I'm a bit anxious to get a 2nd opinion, no matter where I have to go for it! I thought I'd get that when I changed to this Oncologist from the 1st one I had, but since she's in the same practice, I guess they are playing the same game. Too bad.

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di....i dunno... my onc-doc said they dont even do pet scans for sclc (or he doesnt). said that it was for nsclc (or other cancers not sclc).

mine didnt even consider doing another ct scan....much less a biopsy....

he said go get pci and come back in 6 weeks...i said oui...

sounds like they're having a hard time deciding if they have got it (well enough) or not.....takes about 8 weeks for the chemo/rad to get done w/you after you stop.....they might have wanted to do that......

i think all these oncs pretty much know what to do...you can pretty much look at everone on here,see what kinda cancer (and stage) they have...and they are all taking the same stuff the same way.....its just a matter of how attentive the docs are,THEIR OFFICE STAFF, and their patient load. ....s

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I keep saying it's the cynic in me that leads me to believe this, but maybe not. They order scan after scan and then insist that I have them done in the imaging center that they own. The first time this came up, the reason was consistency -- I should have all the scans done at the same place on the same machine. Makes sense, huh. So, for consistency, I should be having them all done at CMC because that's where the first ones were done. Wrong. The next "reason" was that they couldn't get the results as fast from CMC. Huh? Well, if you make the appointment for the scan 2 hours before the appt. with the doc, maybe so. So, let's just make it earlier, ok? Wrong. The next excuse (we're way past "reasons" by now) was "she prefers her patients to go there." So? Which one or none of those "reasons" were real? Keep in mind that the money goes into their pocket in that practice.

Once I told them I would be having my scans done at CMC because THEY said it was a good idea for consistency, and I'd handle getting them the actual scans on CD and reports if necessary, they cooled their jets a bit on ordering more scans.

Since your doc is in the same practice and is going by a completely different protocol, I guess they either don't uniformly follow their own protocols in that practice, or don't know what they are, huh. Actually what you see are protocols from the Cancer Center, and can find the same ones on the web site that medical practice has.

Interesting, isn't it.

Di

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...sounds like bullsh** to me. and they care more about the money (or the pressure put on 'em by the hosp to use their stuff) than they do about you...

ultimately the doc makes the decision.....i didnt know any of them, so it didnt make any diff to me.... but it did make a diff about the location....

my onc-doc was in southern hills (close to my old apt) and it was very convenient.....but i moved in w/my sis (in old hickory) when i got sick......so i wanted to get the rad work done @ summitt..and it wasnt a prob.....ofcourse they're all in the same bunch (not the same practice)......sarah cannon....

thats the big prob i had w/vandy.....they didnt give a flip what my dad had to go through. he was in real bad shape and commuted 150miles to get there,only to have to wait an hr or 2 beyond his apointment time to see anyone.... unexcusable,ever, ......s

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I can think of only one time going to these Oncologists that I've been seen within 1 hour of arriving, on time, for my appointment. The norm there is a 2 hour wait, or has been in my experience. If it's "only" 2 hours at Vanderbilt, that wouldn't seem like such a bad thing to me!

The Oncologists I see own their own imaging center -- that is where they want me to go for scans, but I go to the hospital (Centennial) for those so the money doesn't go into the pockets of the docs, thinking they won't be so eager to order to many if they aren't making any money from them. So far, that's been a correct assumption on my part.

It won't be much longer now, but by the time I see the guy for the 2nd opinion, November will be over, and I will only have December to actually have anything done -- either 2nd line chemo or PCI or whatever -- as my insurance deductible & copays kick in all over again on Jan. 1, and I for sure can't pay for all of that out of pocket. Whatever will be done to me will be done in December, or won't be done at all. That's part of the reason I'm wanting them to move on right now and stop with the sitting and waiting. Also, some windows will be closing soon -- namely the window in which PCI will actually help and not harm me.

We'll see!!

Di

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...youre going to the wrong places.....i'm getting back to have my bloodwork done w/n 10-15mins of my appointment time if not before..and always see the onc-doc w/n 30mins from that.....

the rad-doc does much better than that....

..now the imaging thing is a little longer (i get it at the hospitals)....but i preregister and get it w/n an hr.....

i walked out on an ENT last week that tried to pull that 2 hr stuff (if everyone walked out i bet it would put and end to it).....docs are very busy folks...but they (really their staff) make the appointment times and they are responsible to keep them....... ......s

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I've written a few rants here already about having to wait so long -- I call it "Institutional Disrespect" -- for a variety of reasons. I never had to wait more than a few minutes at the Radiation Oncologist, either having treatments every day or to see him every Friday. I wait around 30 minutes or so to see the PCP when I go, and usually about that long to see the Pulmonologist. (Sometimes they have called to tell me he's been held up in the hospital, and offer me the choice of coming in later to avoid a long wait or rescheduling.) It's just at the oncologists where I've had to wait that long, and it's not unusual there -- not for me, and not for others I've heard say the same thing.

They would do my blood work, then put me in an exam room, close the door,and there I'd sit for 2 hours. After the first time, I started leaving the door open so they could see there was a person behind those closed doors. It made some difference, because they would stop and offer me coffee -- ha. Didn't get the doc there any earlier though.

Then, there were the stories from this morning with me trying to get copies of my records. Hahaha ... :roll:

I parked and ran into the Medical Records dept. to sign the authorization forms, and they demanded to see my drivers license or said they wouldn't release them. :o After a few words with the director on their phone, I told her to ask me any question from those records, and I'd answer it -- I can tell her my DOB, SS#, and whatever else she wants to know to prove it's me. Failing that, I ask her to meet me in the CEO's office, because I worked for that company for 25 years, and I know their CEO and have for at least 10 years, and I, in fact, knew the man personally who started the whole danged company many years ago. She finally figured I was who I said I was and accepted the release form that I signed.

I'm leaving, and run into my PCP on the way out. He asks why I'm there, so I tell him I'm getting records to go for a 2nd opinion. He wants to know who told me to do that -- I told myself to do that. Then he wants to know why, so I reminded him that I've told him many times what I think about the oncologists I've been seeing, so he should already know why. He doesn't seem to like this much, so then starts to caution me to get him a copy of the consultation, make sure the Pulmonologist "approves" it, and on and on. I stop him, and remind him that these things are MY choice, and that the Pulmonologist knows all about it, thinks it's a good idea, and it's a done deal.

(The PCP is a good doc, and is a friend of my sister's. She doesn't understand why I don't relate to him as a friend too -- because he's my doctor, and not my friend -- he is HER friend.)

So, I get to work, tell this to my sister, and she hops on me about the PCP, and how he will help me if I just let him, yada, yada, yada. I tell her that I have discussed this with EVERY doctor I'm seeing, so if it's a surprise to any of them, that's only because they were NOT listening. Not my problem. :x

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So, the saga continues.

I show up this morning to pick up the hospital records I requested yesterday morning. Same time, 8:15 a.m. They have me sit down. 30 minutes later, I ask how much longer -- "3 minutes." Why so long a wait? "It takes a while to get the copies made." Ok, so it takes a while, granted, but 24 hours plus another half hour? "gulp" Oopsie. :oops:

Finally, after I'd been sitting for 45 minutes, here she comes with 227 pages of copies. $149.95. THUD :shock:

I get to work and see that they copied a visit there from 2003 that I didn't ask for. In fact, the form I completed yesterday (a copy of that was on the very front) said that I specifically wanted records from May 31, 2004 to the present. I've just called them back, left a voice mail message, finding out who I talk to for a refund, as the 2003 records weren't asked for, and I'm not paying for them. I haven't counted pages, but they are at least 1/4 of the total. :x

Interesting reading, although I've just skimmed so far --

I was getting 700 mg. of Carboplatin, plus a total of 750 mg. Etoposide (Esoposide spread out over a 10 day period), over 4 rounds of chemo.

One report said I was a pack a day smoker; one said 1 1/2 packs a day, one said "over a pack" a day. I smoked less than half a pack a day, and had for years. I'd cut back about 8 years ago when I repainted my house and stopped smoking inside, so as to keep the icky residue off the walls. It would take me about 4 trips to smoke 1 cigarette -- I'd leave the butt each time, and make several trips back until it was gone, usually 3 or 4 hours. I could buy a carton (10 packs), and it would last almost a month, usually more.

I told them that. Looks like they really don't listen, huh.

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Well, it's only a few weeks before I see the specialist, so ...

We see people on tv every day who have been selected to have their homes made over by the ABC Extreme Makeover/Home show or one of the various TLC and/or Discovery channel teams. We see people who win $500, $1,000, or a million $$ or millionS of $$ in the lottery. We see people who are considered "miracles" because they survive horrific car accidents without a scratch. We see people on game shows who win fabulous trips, appliances, cars, etc. We see people who are the millionth visitor to a local grocery store, movie theater, mall, or whatever, and win big prizes just for walking in the right door at the right time.

I am not one of those people.

I'm one of the "Murphy" people -- as in Murphy's Law.

Always have been, probably always will be.

But like I said in a previous threat, having no expectations means I'm seldom disappointed. All I'm aiming for in this visit to Vandy is his opinion - one way or another. If he agrees with what I've already heard, so be it. I'll just stay where I am and do without the PCI. If he disagrees, I don't even know if he'll take me on as a patient, or send me back to the others with his recommendations. (Rest assured if that's what he does, they will fall on deaf ears.)

Either way, if I'm not a candidate for and can't have PCI in December, I won't have it. Murphy sez, yanno. :P

Di

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....i think youre just bummed out right now..... being sick the way we are and just having cancer is really rough..... i think you make your own luck (to an extent)......

like i mentioned before going to vandy may not be the best thing....especially if you have a low threshold for aggravation anyhow (i have always had that).....

as far as the pci..... i dont really know squat.... but i think you should do it..... it made me sick as the chemo/rad (almost immediately) but as soon as i got on the steroids it was tolerable...... there's an 85% dead rate for 5 yrs (depending on who you talk with)for this stuff and you will not have the chance to go back and get it later......you never really know whether you need it or not until you get brain mets...then its too late.....

my understanding is (most of the time) they either get rid of the cancer at the stage we're at now or they never do...if it ever comes back...you never get rid of it.....30% of the time it comes back into the brain because the chemo doesnt get in there as well as other places...

he!! you prbly know a lot more about it than i do......but pci seems worth it to me........ ....s

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Schmaydee -- I hear you on the PCI. Addie and I have discussed it too, and there are others here as well.

What I'm saying is that I very much want to have PCI, but I can't just walk into the Rad. Onc. office and ask for it! Supposedly after the PET scan next week (scan #6 since June) they will re-evaluate and reconsider the PCI. Honestly, I don't think they will do a thing, given the history I've had with them, but maybe they will surprise me.

Bummed out? Yep. But also tired of having to fight just to get standard treatment based on their own protocols and what they tell me, and then having to play this run around game just to get someone to really listen and deal with me as an adult, which only comes about when I can get them to talk to each other, because they aren't about to listen to me.

Di

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