Re: Mom's Results Not So Good

[Guest guest]

Sharon,

I know the feeling - I had tumors in the liver shrink

significantly and not grow significantly again - but at the same

time have cancer appear in what we now know was 4-5 other places

where it had not been before. When it first happened, it was " bad

news. " Looking back now, I'm not so sure it was bad news at all -

the spread, coupled with side effects, led the doc and I to decide

to nix treatment for an unspecified period of time.

All is not lost. I've been off of chemotheraphy for four

months, now, almost - the doc and I agreed not to go back on until

the cancer " flairs up " again, which we have yet to firmly define.

Both the doctor and I realize, I think, that waiting for it

to " flair up " increases the probability that more chemo will not

work as well - but in my opinion it has been worth it.

That is my point. If such happens to your mom, ending

chemotherapy or radiation isn't an ending - in some ways it is a

beginning. I have never felt better, and I've gained 30-35 lbs

versus losing 30 while I was on chemo. I'm running around the field

watching the kids play football, instead of sitting half shrivelled

up in a chair with gloves on when it is 75 degrees outside. I think

the bad thing about either chemo or radiation is that they steal

away a little bit of your dignity. When you do neither, you get

some of it back.

So if your mom goes back on chemo, whether it be Xeloda or

FOLFOX, hopefully things will get a little better. At the same

time, though, if she doesn't, you might be surprised that she gets a

lot better - it might even lead to her feeling the best she's felt

since the whole thing started. Good things can still happen, either

way.

Hang in there, and tell your mom to hang in there as well.

All the best - Joe

-- In colon_cancer_support , " tarcav23 "

<tarcav23@y...> wrote:

>

> Friends,

>

> The tumor has shrunk by 50% or more, but there are more small

spots.

> the radiation oncologist sees no point in more radiation; he

> recommends Xeloda. I guess I don't understand what that will

> accomplish. He also mentioned Folfox. The regular oncologist

said

> he would need a very good reason to give Mom more chemo, so I

wonder

> if he will even go along with Xeloda.

>

> Those of you on the front lines, is anyone taking Xeloda after

> radiation? Is it having any good effect? Folfox?

>

> Does anyone think that a phone partner might help Mom to cope?

> Again, I'm just trying to give her some quality of life. She is

> pretty low and has been for months now. There were a few days

when

> she had a little enthusiasm, but that did not last.

>

> Forgive me for rambling on; the rest of the family is in denial, I

> think. This is the only place where I can vent.

>

> Sharon

[Guest guest]

Joe,

I understand what you are saying.It is how my husband and I both

felt about his quality of life.Being able to actually enjoy whatever

time God was going to grant him was the most important,and,except

for his very last few days we did make the most of every day.I

remember the conversation we had with our children when he was

diagnosed and we knew time was limited.We talked about being sure

the memories we make are the ones we want to keep.And we went about

celebrating every day things,taking more photos,watching more

sunsets,lingering over morning coffee,attending more activities with

the kids,inviting friends over more often,pulling out all the stops

for the holidays, etc.I thank God for the year we were given.yes, I

will always wish it could have been longer,but not if he had been

suffering. Some friends & family did not understand why

we " accepted " the diagnosis of advanced stage IV(we already had 3

opinions and saw the scans ourselves)instead of running to more

doctors,insisting on agressive or alternative treatments hoping to

find one that told us what we wanted to hear.I think the combination

of our faith and my medical background steered us to choose quality

over quantity and I have no regrets about that decision.The memories

I and the kids have are the ones we wanted and cherish.I am often

reminded of Tim McGraw's recent country song " Live Like You're Dying "

and it sums it up pretty well.

Take care!

H.

> >

> > Friends,

> >

> > The tumor has shrunk by 50% or more, but there are more small

> spots.

> > the radiation oncologist sees no point in more radiation; he

> > recommends Xeloda. I guess I don't understand what that will

> > accomplish. He also mentioned Folfox. The regular oncologist

> said

> > he would need a very good reason to give Mom more chemo, so I

> wonder

> > if he will even go along with Xeloda.

> >

> > Those of you on the front lines, is anyone taking Xeloda after

> > radiation? Is it having any good effect? Folfox?

> >

> > Does anyone think that a phone partner might help Mom to cope?

> > Again, I'm just trying to give her some quality of life. She is

> > pretty low and has been for months now. There were a few days

> when

> > she had a little enthusiasm, but that did not last.

> >

> > Forgive me for rambling on; the rest of the family is in denial,

I

> > think. This is the only place where I can vent.

> >

> > Sharon

[Guest guest]

Hi Sharon,

I would be happy with the 50% shrinkage. Our Radiologist has found

after SBRT the tumors can continue to shrink for a year.

had to have a second go at the right lung and the small

satellite nodules that were showing up around it.

They are in the process of setting up a session on the left lung if

we can just get him in better shape.

They did put on Xeloda and Avastin after and during the time

of the SBRT. They had to take him off of the chemo about a month

ago when they suspected a pulmonary embolism. He then had his

intestines start to come out from under the stoma and had that

repaired and 3 days out of the hospital he developed a horrible

abscess in his left cheek of his behind and was put back in the

hospital.

We saw the Onc today and if all goes well they will try to schedule

the radiation to the left lung. He can not have any more chemo as

long as the abscess is not healed.

I was told by one of the nurses that I needed to make lots of noise

because that was one way of getting their attention. I have always

gone in with all my amunition and research printed out.

After dealing with this for 4 years I seem to get braver and bolder.

Hope this helps,

Joyce

>

> Friends,

>

> The tumor has shrunk by 50% or more, but there are more small

spots.

> the radiation oncologist sees no point in more radiation; he

> recommends Xeloda. I guess I don't understand what that will

> accomplish. He also mentioned Folfox. The regular oncologist

said

> he would need a very good reason to give Mom more chemo, so I

wonder

> if he will even go along with Xeloda.

>

> Those of you on the front lines, is anyone taking Xeloda after

> radiation? Is it having any good effect? Folfox?

>

> Does anyone think that a phone partner might help Mom to cope?

> Again, I'm just trying to give her some quality of life. She is

> pretty low and has been for months now. There were a few days

when

> she had a little enthusiasm, but that did not last.

>

> Forgive me for rambling on; the rest of the family is in denial, I

> think. This is the only place where I can vent.

>

> Sharon

[Guest guest]

Sharon, 50% reduction in a tumor is fabulous news....spread of cancer

elsewhere may not be as bad as you think. When my mom was diagnosed

inoperable lung cancer back in September 2002, the " statistical " odds

of her thriving and actually doing quite well today were definitely

stacked against her. My mom knows that for now there is no cure and

her as well as my primary goal is quality for as long as possible.

Anyway, her lung tumor shrunk my more than 60% and radiation took

care of the rest. However, there was a new flare-up on her hip bone

(this is back in December 2002). It has been carefully monitored

since lung cancer just loves to go the bone and to date, despite

radiation and a second round of chemo that she started in April 2003

for recurrence in lung, this particular flare up has never done

anything....thank goodness. It doesn't grow, it doesn't shrink, it

doesn't bother her, it just sits there. Good...may it sit til it

rots. Mom has now completed her second go round at chemo and once

again has been blessed with a partial response and remains stable.

Like Joe, she is being watched like a hawk and will have some

decisions to make should flare-ups occur and existing cancer start

being active again. However, in the mean time, she's off to Europe

next week for 5 weeks to visit her family and she most definitely

lives every day to its fullest and lives in that day. Please feel

free to share my mom's story with your mom. It may help her just a

little bit to hear again that there are many people living with

cancer and enjoying every minute that God grants them, putting their

energy into living life and not into worrying about what future tests

or diagnosis may hold. There's plenty of time for that, IF and WHEN

the time comes.

Hugs,

Monika

Monika

>

> Friends,

>

> The tumor has shrunk by 50% or more, but there are more small

spots.

> the radiation oncologist sees no point in more radiation; he

> recommends Xeloda. I guess I don't understand what that will

> accomplish. He also mentioned Folfox. The regular oncologist said

> he would need a very good reason to give Mom more chemo, so I

wonder

> if he will even go along with Xeloda.

>

> Those of you on the front lines, is anyone taking Xeloda after

> radiation? Is it having any good effect? Folfox?

>

> Does anyone think that a phone partner might help Mom to cope?

> Again, I'm just trying to give her some quality of life. She is

> pretty low and has been for months now. There were a few days when

> she had a little enthusiasm, but that did not last.

>

> Forgive me for rambling on; the rest of the family is in denial, I

> think. This is the only place where I can vent.

>

> Sharon

[Guest guest]

Joyce,

You and have been in my thoughts and prayers daily. I knew

there was a crisis but did not know of what kind. I wish that

was not going through all this.

Sharon

> >

> > Friends,

> >

> > The tumor has shrunk by 50% or more, but there are more small

> spots.

> > the radiation oncologist sees no point in more radiation; he

> > recommends Xeloda. I guess I don't understand what that will

> > accomplish. He also mentioned Folfox. The regular oncologist

> said

> > he would need a very good reason to give Mom more chemo, so I

> wonder

> > if he will even go along with Xeloda.

> >

> > Those of you on the front lines, is anyone taking Xeloda after

> > radiation? Is it having any good effect? Folfox?

> >

> > Does anyone think that a phone partner might help Mom to cope?

> > Again, I'm just trying to give her some quality of life. She is

> > pretty low and has been for months now. There were a few days

> when

> > she had a little enthusiasm, but that did not last.

> >

> > Forgive me for rambling on; the rest of the family is in denial,

I

> > think. This is the only place where I can vent.

> >

> > Sharon