Re: 's Update #2

[Guest guest]

,

I think that is great news! To just NOT have to see the doctors thru the

holidays is something to be thankful for! I hope you enjoy every day!

Just to update you and everyone:

My Brother will be seeing a team of doctors at Markey CC in Lexington KY

tomorrow. He has " gathered together " all of his tests over the past 2 years,

Pet/CT scans, results from resection in 2001, CEA, -et. al and will see surgeon,

onc. radiologist team, who will recommend and/or approve his next action--does

he have operation first, do a couple of radiation treatments on his new met,

start another chemo regime? I am so anxious for him to do something, since it

has been a month since discovery of latest tumor near aorta.

His wife has had 10 radiation treatments so far--sailing thru them without

any symptoms at all. She indicates she feels better now than she can remember

in a long time. What wonderful news. They are both worried that if my brother

has surgery soon she would not be able to take care of him..

Merry Christmas and have a wonderful holiday.

Gurlstar (betty)

[Guest guest]

- Just wondering what the reason is that they won't do radiation

concurrent with the Xeloda therapy? My husband had daily (5X a week)

radiation for 6 weeks during his 5FU/Leu chemotherapy and it was never a

consideration to do it separately. Since Xeloda is oral 5FU/leu I was

curious about what they might have told you about the reasons for

needing to stop the Xeloda before doing the radiation.

Peggy

altman23 wrote:

>

> Having just started cycle #3 of Xeloda therapy, the rad onc seems to

> be recommending completing it BEFORE beginning any radiation to

> spinal mets. I guess her " take " is that the spine mets are

> not " crisis " stage just yet, and perhaps it is not a good idea to

> break off the Xeloda in mid-cycle.

[Guest guest]

Thanks, Betty!

<<and will see surgeon, onc. radiologist team, who will recommend

and/or approve his next action--does he have operation first, do a

couple of radiation treatments on his new met, start another chemo

regime?>>

I'm not sure...it seems there are a variety of " ways " you can go. I

suppose for " soft tissue " mets, they sometimes reduce the size with

surgery before going for resection. Regardless, the good news is

that it sounds like they are going to do SOMETHING, so he is in a

rather positive situation, don't you think ;o)

Wishing you & your family ( & everyone here!) a joyous holiday season!

Best,

[Guest guest]

Hi Peggy,

Peggy wrote:

<<Just wondering what the reason is that they won't do radiation

concurrent with the Xeloda therapy?>>

Yes, I was wondering the same thing too.

When I asked, the rad onc said she was afraid the Xeloda dose was too

high (3000mg/day), and would likely cause significant GI toxicity

when done in combination with the radiation therapy (for those of you

on much higher Xeloda doses, you have to remember that dose is weight

based and I am pretty light right now at around 116 according to doc

scales today...and the heavier coat I was wearing while being

weighed!).

I think some of this has to do with the location of the L4 lumbar

met and the projected radiation beam path (going to hit intestine, I

suppose). Normally, radiation is considered synergistic with

radiation (makes it work better), so this was a disappointment to

me. Because the Xeloda appears to already be working, I feel very

reluctant to go off it altogether. And because there is a week off

at the end of each Xeloda cycle, starting radiation at the same time

my current cycle ends would imply only 1 week " off " rather than 2.

But the rad onc also said that MAYBE the dose could be reduced to

1800mg/day instead of a complete halt to the therapy. Both of these

sounded like good ideas.

Oh...now here is another odd twist. In addition to the Xeloda, it

was mentioned that the Decadron i'm on (steroid to reduce swelling)

could contribute to diarrhea/GI tox at my current dose(4 mg

4xperday). She told me to cut back to 3/day, and said to be sure to

take plenty of stomach acid blockers with this drug (a tidbit not

emphasized by oncologist!!!)

Gee, I hadn't looked real hard at this before, but that dang stuff

looks a bit nastier than I first thought WRT side effect!

http://www.healthsquare.com/newrx/dec1118.htm

Hmmm...I wonder if this has been partly responsible for some other

recent side effects (e.g. " mood swings " , bit of depression and

such?). I just have not " felt " myself these last couple days. So

now I've got an excuse for my rambling posts too lol!

Why does everything have to be so darn complicated (sigh!)

Best,

> - Just wondering what the reason is that they won't do

radiation

> concurrent with the Xeloda therapy? My husband had daily (5X a

week)

> radiation for 6 weeks during his 5FU/Leu chemotherapy and it was

never a

> consideration to do it separately. Since Xeloda is oral 5FU/leu I

was

> curious about what they might have told you about the reasons for

> needing to stop the Xeloda before doing the radiation.

>

> Peggy

[Guest guest]

,

Peggy got the jump on me. I was just getting ready to ask the same

question. The did not take off the Xeloda while doing the

radiation to his lung mets. Maybe it's a different type of

radiation or just a difference in doctors opinion.

Glad to hear you at least will have Christmas at home with your wife

and little girl.

Wishing you a Merry Christmas

Joyce

>

> >

> > Having just started cycle #3 of Xeloda therapy, the rad onc

seems to

> > be recommending completing it BEFORE beginning any radiation to

> > spinal mets. I guess her " take " is that the spine mets are

> > not " crisis " stage just yet, and perhaps it is not a good idea to

> > break off the Xeloda in mid-cycle.

[Guest guest]

Hi -

It sounds nice to be able to spend the time at home on Christmas

Eve. I am wondering if the rad onc discussed all this stuff with

your medical oncologist today? It sounded like your med onc was

pretty anxious about getting you started with some treatment ASAP. I

am a bit suprised that even if they weren't going to start treatment,

that they didn't do a planning CT so that the dosimetrists could be

starting on treatment planning.

5FU like stuff potentiates radiation. I don't know if anyone has any

information to say that there would be less radiation damage to

normal tissue because of the greater uptake of Xeloda into tumor

tissue versus normal tissue.

How many fractions are they planning to give you? For the regular pre-

op radiation for my rectal tumor I got 30 over 6 wks. For palliative

radiation to my aortic nodes, they did 25 because my radiation

oncologist was worried about giving me larger doses with all the

surgery I had had. I got the impression that perhaps they would have

done larger doses and fewer treatments if I had not had surgery.

If you get treatments like that, they would overlap your Xeloda

treatment.

One thing that may be useful to ask is whether they are going to hit

your stomach. They did mine. They warned me that I might vomit

after treatment. I figured that would only happen as the dose built

up, but nope- I vomited each day a little while after treatment. I

did start losing weight. Since I was pretty low weight to start

with, I went back on TPN for a few weeks so that I would be in better

shape to start chemo again.

I get Decadron as part of antiemetic treatment with my oxaliplatin.

I don't sleep well the night of treatment I am pretty certain that

is a result of the Decadron.

I wonder if it is worth hashing over with your medical oncologist if

steroids are still necessary, since you seem to be doing better

since on the Xeloda. However, I guess that steroids are supposed to

give you the munchies. Good when you are trying to gain weight.

There are drugs, misoprostol for one, that help control the

gastric side effects of steroids. Maybe it is worth asking if they

would want to use something like that during radiation if they are

concerned about the steroids, before you get signs?

Best wishes,

Kris

[Guest guest]

Hi Kris,

Thanks so much for your thoughtful reply.

Yes, the rad onc did call the oncologist during my visit to her

yesterday. She was planning on a total of 10 fractions (1 per day),

which sounded consistent with what some others here seem to have

received (e.g. Mark). From what she indicated, the radiation

planning did not seem difficult...1 beam directly at the tumor could

be done pretty much immediately. If things worsened between now and

the planned therapy start, I suppose that is what they would have to

do.

Kris wrote:

<<For the regular pre- op radiation for my rectal tumor I got 30 over

6 wks. For palliative radiation to my aortic nodes, they did 25

because my radiation oncologist was worried about giving me larger

doses with all the surgery I had had. I got the impression that

perhaps they would have done larger doses and fewer treatments if I

had not had surgery.>>

That sounds right for primary rectal tumors...but I think things get

a lot more variable for spot hits in the lungs and elsewhere.

Supposedly, larger doses of radiation will result in better tumor

kill at the expense of more side effects. And, larger doses of

course have the advantage of getting the treatment over with

quicker!

In thinking of the big picture here, I believe that much of what

oncologists (including radiation oncs!) do is based on what they

perceive the patient prognosis to be. Since my hospitalization in

Sept., I have never sensed a lot of optimism for my case. I can

accept this - so long as what they actually DO is " close to " the only

things which COULD conceivably be done. If there is a better way of

stopping a spinal met than they have planned, I would want to know

about it and I would do it regardless of how the rad onc felt.

But, I must admit that I am SO looking forward to a " doctor free "

Christmas that I am probably not protesting as much as I normally

would about the aggressiveness of treatment. My friend and his wife

are coming over for dinner tonight...so happy that the afternoon

won't be wasted on waiting in the doctors office to make me late

getting home, etc!

Being aware of the close prognosis/treatment link, I went ahead

and " bit the bullet " by asking the rad onc HER perception of " how I

was doing " , etc (not really wanting to hear the answer). And her

reply was more-or-less what I had expected...she thought I " had maybe

3-6 months left " , and that the " progression of cancer " is

currently " rapid and significant " . Here, I suppose she is referring

primarily to the growth of visible mets (lumps/bumps) on my back

(which incidently seem to have slowed following Xeloda therapy

start).

Well, hey - when I was in the hospital (Sept), they " said " I had

maybe 5 weeks left (deadline come and gone lol!), so I know you can't

take these things TOO seriously!

And, as this is the first time I have had chemo, I'm not quite as

quick to throw in the towel as the oncologists might be. But this I

think is partial motivation for WHY the rad onc acts the way she does

(Sometimes appearence of " lack of concern " . I read somewhere that

oncs in general tend to overinflate projected survival times when

talking to patients by about 1/3...so she really thinks I " have " 2-4

months. Obviously, it would therefore make no sense in her eyes to

give treatments which take up a significant amount of that time!)

There was also a bit of confusion in what the rad onc said

regarding " how ill " the radiation would likely make me. Didn't seem

to think it would result in a lot of vomiting (contradiction?!), but

just a concern about the meds taken WITH the radiation treatments.

Guess I had better call her and try to probe this more carefully.

She is not always the easiest to talk to...Spain is her native

country, and there have always been some language problems during our

discussions.

Kris wrote:

<<I get Decadron as part of antiemetic treatment with my oxaliplatin.

I don't sleep well the night of treatment I am pretty certain that

is a result of the Decadron.>>

How much/how many times per day were you on Decadron? I cut back a

pill yesterday, and seemed to do a little better (now taking 4mg 3 x

day) sleepwise/emotionally. I have just been really surprised by how

much this stuff has affected my own sleep patterns. Last night was

the first night since starting Decadron I slept all the way thru

without significant " awake time " .

Thanks again for your taking the time to reply. I'll have to check

into the misoprostol (and anything else I can dig up on steroid side

effect!)

Best Wishes,

[Guest guest]

Hi keith-

I hear you about excaping from the doctors for a little while. I

begged a few days off from chemotherapy a few weeks ago so that I

could go to some professional meetings in Chicago. Then, to get me

back on the " routine schedule " I am getting treated this Friday,

insead of tomorrow. Hurrah for both small favors.

Smaller, but more numerous doses of radiation tend to cause more

acute effects but lesser long term side effects, some times not

showing up until years down the line. Smaller numbers of high doses

have the oposite effect. Some regular tissues exhibit fewer bad late

side effects so they can get away with doing higher doses. If they

don't have to have as big a field they can get away with more also.

If they are only going to treat a very small area, and especially if

it won't involve the stomach, I bet gi signs won't be an issue for

you. I was getting treatment of my whole abdominal aortic chain of

nodes down to my pelvis.

I still am so impressed that you have gone so very long with no

chemotherapy. I was just reading elsewhere about a 42 old lady with

20 plus lung mets, 5 liver mets plus some lymph node involvment at

initial diagnosis who is now 14mth later NED on PET/CT with

oxaliplatin/5FU and liver nodule resection. So I'm with you, don't

give up hope for some sort of longer term remission.

My radiation oncologist treated me on weekends when his tech was

coming in to treat other people just to get me done faster. Although

he did not want to treat the large lymph node in my chest (he didn't

want to damage more of my bone marrow), he did treatment planning in

case he had to treat me on an emergency basis. It was growing so

fast they were worried I might get compression of my trachea before I

could move to Wisconsin within a few weeks. Here I am 7 mth later

doing well !

Hopefully your radiation oncology center is close by. Once set up

was done, I think they were the most efficient of any of my

appointments. I could be in and out in 15 minutes!

As for the Decadron, I only get it along with Anzemat as an IV

infusion just before oxaliplatin. It helps with nausea, although

apparently no one knows why. The other thing that steroids do is

make me urinate larger amounts. That does not help with getting

sleep either.

Have a wonderful Christmas with friends and family. Tis the season of

miracles.

Best wishes

Kris

[Guest guest]

Best wishes back at you....Hope everything stays in place,pain susides,and

no

untoward growths appear. This is the season and You have given us all a

Reason

so now let all our prayers and positive energies sustain you,sharing is

caring and

you have carried all of us at one time or another. The " Littlest ANel cried

and her

tears became the jewels in His Crown,so now it's your turn to gather the

harvest.