Re: Dad - notmore treatments? Help!

[Guest guest]

Hi Nicky: We know how you feel,hope someone on the board has an answer.

Think of it this way. You have a reprieve for the holiday. Enjoy it for the

time and

by then something may come up. Nick has been in an Avastin trial for almost

two years. Alone it does nothing in combo with the Camptosar(CPT11) it worked

about six months. he on it,plus 5FU+LV+OXY right now. We go for a pet scan

Fri.17th.

So we will see where we stand. Don't give up,this is the season of miracles.

Hope,

faith and peace and Hugs. God Bless Nick & Jane

[Guest guest]

Quick question. Did you try contacting the pharmaceutical company yourself?

[Guest guest]

Nicki- I am so sorry to hear that your dad is not responding to

oxaliplatin. Have you and his oncologist thought about clinical

trials? These offer new treatments before they are available to the

general patient population. I can't recall if you are anywhere near

a major cancer center, but a second opinion at one of these may be

helpful. Sometimes oncologists at places such at these can help sort

through such trials and offer suggestions as to which might have most

merit.

As far as lung metastasis goes, there can be a fairly large number of

nodules in the lungs without clinical signs being apparent unless a

nodule presses on a bronchus and causes coughing, or causes fluid to

accumulate around the lungs, reducing their ability to expand.

Here is hoping that you find some other possibilities.

Kris

> Dear and Friends,

>

> I was just informed today that my Dad's onc won't be giving him

> anymore chemo treatment until Avastin or Erbitus becomes available

> early next year.

>

> My Dad is stage iv with mutiple lung mets. He was on his 4th cycle

> of oxaliplatin/xeloda (from 8/29-11/14). His CEA was the following:

>

> 8/22(prior to chemo): 82

> 10/24: 98.7

> 11/14: 86.2

>

> Prior to starting oxaliplatin/xeloda, he was on CPT-11 (April -

> June '30), and xeloda only (Nov '02-March '03). The most current

> MRI/CT results on 12/4 indicated that his cancer is worsening,

there

> are mutiple mets in his lungs. The 7/29 PET result only showed 3

> mets, all in the right lobe of the lungs. However, is liver and

> other organs are still clear and he as normal liver functions.

>

> His onc said it does not appear that oxaliplatin is working and my

> Dad exhausted all chemo options (oxali, CPT-11 and xeloda). His

> doctors also said he is not eligible for radiation or surgery

> because of the number of mets and location. [i am waiting for a

> copy of the MRI/CT report.]

>

> Does it make sense to discontinue him on oxaliplatin? (What if

> oxaliplatin is slowing down the growth). What are the symptoms of

> lung failure beside breathing?

>

> I just feel so hopeless and devastated right now, especially since

> Jan 1 will be my Dad's 63rd birthday!

>

> Thank you all,

> Nickie

>

> Any suggestions you may have will be greatly appreciated!

[Guest guest]

Hi Nicki,

Sooo sorry to hear about your Dad. My husband also has mets to the

left lung and a very tiny one removed from the right He just

completed IMRT radiation to the lung about 6 weeks ago. We go for

ex-rays Dec 30th. You may want to run that by them. There is also

a radiation treatment called SR.

Best Wishes,

Joyce

> Dear and Friends,

>

> I was just informed today that my Dad's onc won't be giving him

> anymore chemo treatment until Avastin or Erbitus becomes available

> early next year.

>

> My Dad is stage iv with mutiple lung mets. He was on his 4th

cycle

> of oxaliplatin/xeloda (from 8/29-11/14). His CEA was the

following:

>

> 8/22(prior to chemo): 82

> 10/24: 98.7

> 11/14: 86.2

>

> Prior to starting oxaliplatin/xeloda, he was on CPT-11 (April -

> June '30), and xeloda only (Nov '02-March '03). The most current

> MRI/CT results on 12/4 indicated that his cancer is worsening,

there

> are mutiple mets in his lungs. The 7/29 PET result only showed 3

> mets, all in the right lobe of the lungs. However, is liver and

> other organs are still clear and he as normal liver functions.

>

> His onc said it does not appear that oxaliplatin is working and my

> Dad exhausted all chemo options (oxali, CPT-11 and xeloda). His

> doctors also said he is not eligible for radiation or surgery

> because of the number of mets and location. [i am waiting for a

> copy of the MRI/CT report.]

>

> Does it make sense to discontinue him on oxaliplatin? (What if

> oxaliplatin is slowing down the growth). What are the symptoms of

> lung failure beside breathing?

>

> I just feel so hopeless and devastated right now, especially since

> Jan 1 will be my Dad's 63rd birthday!

>

> Thank you all,

> Nickie

>

> Any suggestions you may have will be greatly appreciated!

[Guest guest]

Dear Nickie,

a has written a very good post - she makes an excellent point

about the difficult balance between quality and quantity of life.

I'm not a doctor, but if I were in your father's shoes I would lean

VERY heavily towards exploring the options of Stereotactic

Radioablation or Radiofrequency Ablation for the lung mets. I know

both of these treatments are probably options if there are only 3

lung mets and no mets elsewhere. Joyce has given some specific

surgeon names who are willing to perform RFA on lung mets - you can

use the SEARCH box to pull up some of her old posts, or I'm sure she

will repeat the info. I collected some of the doctor names she and

others have posted here http://tinyurl.com/yh0k - see Nielson

website. (NOTE: Joyce or anyone - feel free to add new links to

the " aggressive surgical oncologist list " if you'd like!)

Indiana University has a good Stereotactic Radioablation program and

a long history with using SR - see e.g. http://tinyurl.com/zgur

Contact Higinia Cardenes for more info

http://tinyurl.com/zgwo

There are other cancer centers which perform SR, but I do not have

personal experience with them (U Penn probably does this too).

Both SR and RFA are " easy " procedures, which DO NOT compromise

quality of life for most patients anywhere near as much as most

chemos do.

On the other hand, if the recent scan report says there

are " innumerable " tiny lung mets, along with other mets outside the

lungs, these cannot be treated except by some form of chemotherapy.

As others have suggested, it is possible that there are clinical

trials out there which he is eligible for, but there is no " super

drug " I am aware of currently in trials which has a HIGH probablility

of " working " .

I think a few here (Mark?) have tried a new drug called " Velcade "

(which is on the market and somewhat successful in certain cancers),

but it didn't work for them.

http://www.mlnm.com/products/velcade/index.asp

http://www.mlnm.com/media/news/2003/2003-05-13-0.asp

[snip]

Millennium is conducting an international, multicenter phase III APEX

trial of VELCADE in patients with either relapsed or refractory

multiple myeloma as well as two phase II trials with VELCADE, one in

patients with metastatic colorectal cancer and another in patients

with advanced non-small cell lung cancer

[KEITH'S NOTE:] Because Velcade is FDA approved for Multiple Myeloma,

it is " on the market " and can be prescribed OFF LABEL for ANY cancer

patient by ANY oncologist. You do NOT need to be in a clinical trial

to get it!

So anyway...step 1 is finding out exactly what the scan report says

(please post main results!). In the case of " innumerable " lung mets

cited above, I think a has really hit the nail on the head. The

best thing to do is have a long, honest discussion with your Dad

about what HE wants to do regarding further chemo treatment.

Stopping chemo may well improve his quality of life. If he has

progressed on both Camptosar and Oxaliplatin, the chances of getting

a response on yet another regimen (Mitomyacin, for example, is

sometimes used as a " third line therapy " , or returning to Camptosar)

may be minimal (discuss this with oncologist!) and only make QOL

worse. I have followed the cases (on the Internet) of " too many "

patients who were desperately searching for a 3rd or 4th line therapy

to stop their rapidly advancing disease. Everyone knew the chances

were virtually zero that these things would work, but the fear of

dying can often cause irrational choices to be made. What might have

been a " good " final few months of life instead turned into living

hell due to horrible chemo side effects. But its always easy to look

back and say what " should " have been done, considerably harder to

decide while in the thick of things.

There is an excellent article I read yesterday about this very topic -

" When is enough enough? " , i.e. when is it " best " to stop treatment

altogether? I'm going to put it in a sepearte post though, as I

think more people may see it that way. This is a very difficult

question, and there are no right answers. I do know the decision

MUST involve the patient's wishes as much as possible.

Avastin and C225 will PROBABLY NOT be available SOON after the new

year (this is MY PERSONAL FEELING, guess, or what have you...your onc

may believe otherwise, and I could well be wrong). Having

followed the approval of new cancer drugs for awhile now, unless the

FDA has really changed the way they operate and decided to REALLY

kick things into gear, I believe it will be well into the year before

these drugs actually hit the market. They'll get here eventually,

just not " fast " as we would like. So I would NOT make any treatment

decisions right now which ASSUME you can get them in Jan/Feb.

Hope this helps. I will be thinking of you, hoping whichever

direction you and your Dad choose is right for him.

Best Wishes,

> Dear and Friends,

>

> I was just informed today that my Dad's onc won't be giving him

> anymore chemo treatment until Avastin or Erbitus becomes available

> early next year.

>

> My Dad is stage iv with mutiple lung mets. He was on his 4th cycle

> of oxaliplatin/xeloda (from 8/29-11/14). His CEA was the following:

>

> 8/22(prior to chemo): 82

> 10/24: 98.7

> 11/14: 86.2

>

> Prior to starting oxaliplatin/xeloda, he was on CPT-11 (April -

> June '30), and xeloda only (Nov '02-March '03). The most current

> MRI/CT results on 12/4 indicated that his cancer is worsening,

there

> are mutiple mets in his lungs. The 7/29 PET result only showed 3

> mets, all in the right lobe of the lungs. However, is liver and

> other organs are still clear and he as normal liver functions.

>

> His onc said it does not appear that oxaliplatin is working and my

> Dad exhausted all chemo options (oxali, CPT-11 and xeloda). His

> doctors also said he is not eligible for radiation or surgery

> because of the number of mets and location. [i am waiting for a

> copy of the MRI/CT report.]

>

> Does it make sense to discontinue him on oxaliplatin? (What if

> oxaliplatin is slowing down the growth). What are the symptoms of

> lung failure beside breathing?

>

> I just feel so hopeless and devastated right now, especially since

> Jan 1 will be my Dad's 63rd birthday!

>

> Thank you all,

> Nickie

>

> Any suggestions you may have will be greatly appreciated!

>

>

>

[Guest guest]

Hi Nickie,

Well, I'll take a shot at this (others feel free to kick in w/

opinions too!). But remember, I'm NOT a doctor, so I can't guarantee

any of this stuff I've said is right! You should CONFIRM the

interpretation with your Dad's own doctor before you believe it!

> MRI and CT Findings

> Lungs:

> - " mutiple focal areas of abnormal high T2 signal, mass in the

posterior right chest previously at 3.7 x 3.9 cm is now at 4 x 4.1cm "

[iNTERPRETATION: A tumor in the right chest has increased SLIGHTLY in

size. This does not seem a large increase to me, and could even

be " caused " by different scan readers measuring the lesions in a

slightly different way. Also, if the scan " slices " were not taken in

EXACTLY the same locations (unlikely!), then you can get slightly

differing measurements due to the " biggest " slice being in 2

different locations for each of the 2 scans]

> - " additional smaller lesions in right lung base "

[iNTERPRETATION: I guess a few NEW small tumors have shown up at the

bottom of the right lung]

> - " adjacent lesion within right lower lobe at 2.8 x 1.9 cm as

compared to 15mm in prior study "

[iNTERPRETATION: A significant growth in a previously existing tumor -

it was 15mm (VERY tiny) and has now grown " a lot " .]

> - " lesion within the posterior right upper lobe measures 18mm as

compared to 15mm in prior study "

[iNTERPRETATION: Minimal growth in another previously existing upper

lung tumor. Again, there might not actually be ANY growth in this

particular tumor, because the scans are not accurate to the degree of

several mm]

> - " no pleural or pericardial fluid is present "

[iNTERPRETATION: Good sign! Means there is no fluid on the lungs

(which can be caused by tumors, and which can cause serious problems

such as I experienced earlier this year]

>

> MRI Abdomen:

> - " a 4.3 x 2.2 cm right abdominal wall mass posterolateral to

remaining right lobe of liver and abnormal signal in anterior abdomen

extending from subcutaneous tissues to peritoneum measuring 4. x 2.9

cm "

[iNTERPRETATION: 2 new tumors in the abdomen (?) I guess they are

new, because the report didn't say " old " tumors increased in size.

It is not clear that tumor #2 is really a tumor, because it is only

described as an " abnormal signal " .]

> - " two lesions in anterior right abdominal wall, larger extending to

subcutaneous tissues 8.3 x. 3.9cm, appears to be scar tissue "

[iNTERPRETATION: They don't know what they are " seeing " with the

scan, but are GUESSING that these two " lesions " are scar tissue from

previous surgery and NOT cancerous tumors]

> - " also omental caking and a 3.3x1.4 cm implant at rectovesical

poutch "

[iNTERPRETATION: The Omentum is a thin covering of the intestines

http://www.theisticscience.org/books/worcester/omentum.html

I'm not sure what the " caking " is, but they didn't indicate it is

cancer.

The " rectovesical pouch " is the space between the rectum and the

urinary bladder in the peritoneal cavity of the male. The 3.3x1.4 cm

implant is presumably a new tumor (since they don't talk about

an " old " one growing from previous scan)

They don't sound as " sure " of themselves about interpretation of MRI

results in abdomen (e.g. references to " scar tissue " , " abnormal

signal " , etc).

>

> CT Abdomen:

> - " previously identified nodule in subcutaneous tissues of anterior

abdomen increased in size and now measures 2.6 x 3.4cm as compared to

2.2x2.2cm. "

[iNTERPRETATION: Old tumor increased in size. Not a " huge " increase,

but this is probably " real " and not due to scan reader differences or

maximal " slices " in different locations]

>

> MRI and CT Liver:

> - " no hypervascular liver lesions and remaining liver is normal "

[iNTERPRETATION: Excellent! Nothing in the liver!]

> - " spleen remains markedly enlarged, but no focal finding "

[iNTERPRETATION: It might be odd that the spleen is " enlarged " , but

there is no OBVIOUS tumor seen there. However, it could be there

is " diffuse " seeding (e.g. " cancer sand " , or tiny nodules which

cannot be spotted on scans) which have caused this. If the spleen

was enlarged before, there is probably nothing to worry about]

> - " no abdominal or pelvic lymphadenopathy "

[iNTERPRETATION: No lymph nodes in the abdomen or pelvis were seen to

be cancerous]

Well, that's my guess as to what this is saying. Overall, it doesn't

sound like there has been " a lot of " growth, though (good sign!). I

suppose the " worst " thing would be the increase in lung tumors?

Hope this helps!

Best Wishes,

[Guest guest]

Hi Nickie- Although I do go to some of their meetings, I'm not a

human radiologist, so, as said, be certain to discuss all this

with your Dad's oncologist as well. My thoughts however, to add to

's...

Although radiology is getting much more accurate, the gold standard

for diagnosing cancer is by a pathologist's microscopic evaluation of

the tissue, and radiology has not put pathologists out of business

yet. Those words " possible " or " probable " in reports remind the

oncologist that they would have to biopsy the tissue to be more

certain. If oncologists could get biopsy samples of all the abnormal

areas on a radiograph, CT or MRI scan as easily as they can suck

blood from us, they probably would!

MRI can provide additional information about the properties of

tissues. Therefore, in certain situations, it can better distinguish

between normal and abnormal tissue compared to CT. That may

explain the difference between the number of things reported on the

CT and MRI scans.

Since MRI allows some differentiation of types of tissues in the

abdomen, they are more able to suggest that a clump of tissue

is " probable " scar tissue on an MRI than on a CT scan.

is right that mild changes in measurement can be artifactual.

Omental caking is worrisome. It is a result of thickening and

clumping of the usually paper thin omentum that lays over the

abdominal organs. Omentum is rich in blood vessels and can provide a

fertile ground for metastatic tumors to grow. I'd ask your

oncologist, but most commonly I believe it is associated with

infiltrates of tumor into this tissue, with severe inflammation a

much less common cause.

Kris

[Guest guest]

Hi Kris,

Kris wrote:

<<Although I do go to some of their meetings, I'm not a human

radiologist>>

Ha - so that's how you know all this stuff! Well, you're probably a

bit ahead of me on this...everything I learned was from reading and

asking questions about the scans I've had. Wish I had more knowledge

about scans in general!

I've personally had only one or two MRI's in my life, so I don't feel

very " qualified " to say much about them one way or the other.

My gut feeling has been that PET (or more specifically, PET/CT

combination scan) is the " best " way to get a good overall

impression of what is going on cancerwise everywhere in the body.

But this combo scan cannot give good indication of tumor SIZES...that

takes a high contrast CT scanner with " fine " slices (note the CT part

of combo PET/CT is uncontrasted). I've also noticed the scan readers

are a lot more accurate in their interpretation of a contrasted CT if

they can look at the combo PET/CT first (i.e. they overlook fewer

tumors that way).

I don't really have a good feeling for the role of MRI in all

this...it sounds a lot more " fuzzy " , with unclear interpretation,

etc. And also, most patients don't seem to get repeated MRI scans

for comparison purposes. It's not really " fair " to compare a prior

CT scan with a current MRI scan. Even if you did an MRI and a CT on

the same day, and could " see " exactly the same tumors, the tumor

sizes would appear totally different between the scans anyway (LOL!)

Best,

PS Kris, just wanted to say thanks for all the great posts you've

made here. You're one of our very best posters and I've always

learned a LOT from your comments!

> Hi Nickie- Although I do go to some of their meetings, I'm not a

> human radiologist, so, as said, be certain to discuss all

this

> with your Dad's oncologist as well. My thoughts however, to add

to

> 's...

>

[Guest guest]

Hi Nickie,

Be sure you see Kris' excellent post #8057 too - very good comments

regarding MRI scans. You still might want to review a few key parts

of these reports w/ the surgeon ;o)

Regarding the temporary discontinuation of chemo, it is actually very

unclear that being ALWAYS and continuously on chemo will actually

result in a longer survival time. For example, consider this article

from 2001

http://www.medscape.com/viewarticle/418466

[snip]

In managing patients with advanced colorectal cancer, for how long

should chemotherapy be administered? Is there a benefit to continuing

chemotherapy in responding patients until objective evidence of

disease progression? Or would " drug holidays " allow patients to

experience less toxicity without adversely affecting survival? These

questions were addressed by an interesting study reported by Dr. T.

Maughan and colleagues[18] on behalf of the Medical Research Council

(MRC) Colorectal Cancer Group.

The investigators randomized 354 patients receiving a variety of

chemotherapy regimens to 2 groups: 1 group stopped chemotherapy after

12 weeks if they were responding, while the other continued treatment

until disease progression was noted. In the group that stopped

chemotherapy, therapy could be restarted at the time of disease

progression.

The patients who received continuous chemotherapy experienced

significantly more serious adverse events and a significantly worse

quality of life. Yet there were no differences in progression-free

survival or in overall survival between the 2 treatment arms. Median

survival rates from randomization were 11.8 months for the " stopped "

group and 11.2 months for the " continuous " group; 2-year survival

rates were 18% and 14%, respectively. These results were not

significantly different.

It makes intuitive sense that unless continuation of chemotherapy in

a patient with metastatic disease will result in a situation in which

a palliative approach to the management of that patient can be

changed to a curative approach (such as resection of residual

metastases with curative intent), continuing chemotherapy after the

initial response has been demonstrated may not be helpful and may

only add toxicity. In a discussion of this paper,[17] it was noted

that the chemotherapy regimens used in the MRC study were relatively

nonaggressive, so the value of " drug holidays " should be reevaluated

in patients receiving more aggressive combination treatments before

it is accepted by oncologists treating colon cancer patients.

Also see the abstract http://tinyurl.com/3xny5 about the same study.

So I dunno. It seems rather uncertain to me what the " correct "

course of action is. Maybe the onc was trying to give your dad

a " good " Christmas holiday, chemo and otherwise!

I think in the case of palliative (non-curative) therapy, the

philosophy is moving towards " treat the symptoms " for many

oncologists...rather than to base decisions so much on tumor markers

(e.g.CEA). If the tumor sizes have increased (some of which seem to

have) and NEW tumors have arisen, then the onc conclusion that chemo

is not working is based on this alone. I guess he/you can't really

tell if the slower growth was caused by the Oxal, or if it would have

happened that way even if he NOT been on the Oxal.

<<The good news is my Dad continues to gain weight, has a healthy

appetite and shows no symptoms from these mets in his lungs or

abdomen>>

Which is indeed excellent...and in combination with the slow tumor

growth is probably the reason for the chemo holiday.

Whatever path your Dad decides to follow, I will be thinking of

him...sending positive vibes and hoping for success!

Best Wishes,

> Dear ,

>

> Thank you so much for helping me understand these reports. You have

no idea how wonderful you are to me and my family over the past

year! My Dad's onc would never go through this report with us you

like did. I guess the reports don't seem as certain as my Dad's

oncologist think they are and I need to get a second opinion soon.

Maybe the 6 weeks off will give my Dad time to recover from all the

chemo he has had this past year. I am trying to talk to his onc

about putting my Dad back on Xeloda and add Celebrex end-Jan. His

latest labs indicated another decrease in CEA (from 98.7 in 11/14 to

79 in 12/15) and his blood count and liver functions are normal. It

just seems to me that the MRI/CT are not certain, some of his tumors

did not grow very much, his CEA continues to decrease....all these

factors, his onc should have kept him on Oxaliplatin/Xeloda for a few

more cycles. My Dad has no major side effects from it. The good

news is my Dad continues to gain weight, has a healthy

> appetite and shows no symptoms from these mets in his lungs or

abdomen.

>

> UCSF called me today and I will schedule an appt with them for a

second opinion. It's not how my Dad would want to spend the holidays

but he wants to fight this disease.

>

> Thank you again for all your help!!

>

> All the best,

> Nickie

>