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It seems my previous question was difficult to understand , here it goes again!.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

What I mean is, if you got some minor Mets ,primary already sorted out and operated successfully ,We know that is very possible to make them despair just with chemo,So no tumor evidence so technically NED, not Cured,I know!.Ok if not tumor evidence ,nothing to operate!( it happened once to me).Question :Any body in this situation has achieved more than a few months with not evidence of tumors or CEA Rising?. I think betsydoglover would be an example!..
Thankyou!

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

I'm kinda wondering the same thing...I'm stage4, mets to liver...no cancer elsewhere. I've been on chemo for a few months and have recently been told that my tumors have shrunk enough to consider liver resection (awaiting a meeting with Huntsman Cancer Center surgeon when Medicaid is approved). Since I'm not having bad reactions to chemo and I'm scared of the surgery, it would seem easier on me to just do chemo until the tumors are gone.

However, I'm led to understand that the tumors will not continue to decrease from chemo indefinitely...in fact, my Dr Doom says that this chemo I'm using will stop working sooner rather than later. Then, if liver is not resectionable, we'd need to change chemo to continue getting positive results.

Also, since all chemo drugs seem to stop being effective at some point for most people, it is best to reserve chemo usage for when surgery isn't an option.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

What means chemo not working forever ?,what would happen if once free of tumors you stop chemo?No chance of staying free of it for long term? .
What's the difference to be operated and NED or necrosed with chemo and NED as well? Considering cancerous cells wouldn't be in the tumors removed or killed any more, they use to be in the blood flow or lymphatic system so..... both can't be operated so must be killed with chemo,.Resuming don't you think to get free of cancer once you got a met is not more a question of chemo than surgery?.How those mets arrived there from the colon ? via blood or lymph system not via the primary tumor by it self!.
Well interesting question !

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

I am Stage IV and had surgery to remove primary tumor in the rectum 12 lymph nodes removed(7 tested positive) and met removed from liver in Nov 2009. I followed with mop up chemo from Nov 2009 to June of 2010 and was cancer free or NED for about 10 months. Then in March of this year found mets in my lungs. Some people will remain NED for years some don't. Why?? I have no idea. Now I am on 5-Fu to prevent growth and my oncologist insist that they will never go away unless surgically removed but I am not a candidate. Can't wait to prove him wrong!! Hope that helps:) Melissa

mukamom's picture
mukamom
Posts: 402
Joined: Oct 2010

cancer is as unique as the person that it has invaded. Regular protocols for your type of cancer pretty much works (to an extent) as a whole. Sometimes it doesn't. Maybe cancer cells mutate according to your genetic make up in order to survive. Maybe your genetic make up does't allow for the cancer to mutate or spread. I think it is a crap shoot.

Just my .01 cent worth ;-}

Angela

smokeyjoe
Posts: 1428
Joined: Feb 2011

I love how you call your onc. Dr. Doom....mine seems to be the same. I think maybe some of these cells are sitting somewhere, on liver or lungs but just are not big enough to be detected by scans. They've travelled via the blood or lymph nodes till they set themselves somewhere and start to grow. Hopefully chemo. will wipe these suckers out before they have an impact. What I don't get is if the chemo is floating around your system why these don't get wiped out when they are just cells floating about. Why do they need to become a tumor before you see the results of chemo. shrinking mets. Or perhaps a lot are wiped out this way, but some escape?? Seems some people are fortunate enough to have these things wiped out and not reappear later, from what I've seen there are a few on here who have gone NED for a long while.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
”…..it would seem easier on me to just do chemo until the tumors are gone.
…..However, I'm led to understand that the tumors will not continue to decrease
from chemo indefinitely...”

This gets confusing.

Chemo can’t kill a cancer cell, if it can’t identify it as a cancer cell. That’s the
problem with today’s technology. The chemicals kill just fine - like an atom bomb,
and just as arbitrary of a killer as an atom bomb. The bigger problem, is that there
isn’t technology to aim the bomb accurately, or deliver the bomb to the exact
target….. it’s like an Iraqi scud missile.

So (as far as my understanding goes), when/if the tumor shrinks to a small size,
the chemicals lose the target. The cancer that remains is still strong enough to
remain alive, and will eventually grow in size once again.

I know I’ve typed this before, but: There’s some newer studies that seem
to indicate that the immune system often becomes sensitized to the chemicals
that dying cancer cells release. If the immune system is strong enough after
being bombarded with those atom bombs, it often seeks out and destroys
the balance of cancer cells that remain.

It makes sense enough, that many oncologists are now using less chemicals
for shorter durations, and using a “wait and see” approach, rather than the
old “keep pumping poison until they drop” mentality.

I hate cancer.

Stay well, please.

John

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

This makes it clear to me why they prescribe a specified amount of chemo cycles when designating treatment. I had wondered about that. I think there's more to learn about this cancer stuff than I'll be able to comprehend so I'm grateful for the shared opinions and ideas of those who have had time/ability to learn more.

I hate cancer too...and there are so few things in this life I use the word "hate" for, that you gotta know I'm serious :(

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

the question was ,if anybody had achieved some time of NED just by having chemo,i did it and i think must be many others out there!.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi pepe,

but my surgeon said even if chemoradiation completely killed the tumour, i had a great response, they said. nothing on pet, nothing on ct or mri he still went ahead and cutout tumour scars/remnants because everytime the cutout tumour is studied some active cancer cells remain.

its a different senario and hopefully chemo on its own can do it, for some yes and for some no.

as i understand it, its the cancers ability to adapt and evolve that is how it gets around the chemo.

good question,

Pete

ps of course the natural solutions like tumeric, reseretrol, blueberries, vit d etc etc etc
and exercise will help, a dash of meditation also helps.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"the question was ,if anybody had achieved some time of NED just
by having chemo,i did it and i think must be many others out there!."

Ok, for my two centavo's worth:

I guess I get confused with the "NED" situation and the concern
to have "reached NED"...

I was "NED" for many, many years prior to my first diagnosis
of colon cancer. They also said it probably took 7 or 8 years for
the tumor to grow that big! Imagine that? I was NED for over
eight years while the damned thing was in there, eating away!

It makes me wonder just how many people are walking around,
that have had yearly check-ups, physicals, colonoscopy, etc,
without ever having any indication of a cancer growing within?
That's being "NED".

Personally, for me, being told that "we can't say for sure the cancer
is gone", suits me better than being told I'm "NED".

It's called "semantics" in our language. It's the use of an alternate word,
or statement, to make a situation sound different.... The same "meaning"
but said using different, words.... (did I explain that right?)

So, in the context that you're asking the question? Anyone, and
probably -everyone- can achieve "NED" with chemo, radiation,
or surgery alone. We all were "NED" right up to the day of our
diagnosis, right?

The use of semantics is a great sales tool; it can change the illusion
of a product to suit the needs of an individual. And of course, we
all use the concept daily in normal conversation, to either avoid
arguments, or start 'em. (haha)

I.E. "That dress make you look fat" vs "It really enhances your figure".

So anyway, great to hear you're doing great! I am hoping to see
you around for a long, long time!

I wish I could do something to keep us -all- around for a long, long time!

Stay healthy!

John

PS:

No-one, that has ever had a diagnosis of cancer, should ever
let their guard down, or become complacent to any "good sounding"
report concerning the absence of signs of cancer.

That -is not- to say that we should go around 24/7/365 in total fear
that cancer is lurking within, or allow the thought of it to consume us.

It's the idea that we should not assume that we are in the clear,
and go back to the lifestyle of ignoring signs of ill health, and by
taking medications that hide symptoms.

.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Awwe Pepe I think I'm losing something in the translation. Are you asking if someone could be declared NED without surgery and just getting chemo. Or being declared NED after a met has disappeared off the radar after chemo, and then that met not reappearing and starting to grow again at a later date? (sorry, my question is probably even more confusing) I think John is the wise one on this.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I will try again ! I'm asking if somebody here, has reduced their mets enough to don't be evident to an scan or pet or CEA control just by using chemo.
In affirmative case for how long they remained with no evidence of visual tumors or High CEA counts ?.UUFFFF!.
Hahahahaha!.LOL.

GaryinUK
Posts: 63
Joined: Feb 2011

My partner already had mets to the liver when diagnosed, the operation to remove the primary from the colon was a total success, no recurrence at all in that area, 21mths later.

The Liver resection was a 'success', no trace of anything for 3months, then back it came in the Liver and now in the peritoneal cavity, the Chemo did not reduce when it recurred, in my opinion it made it worse.

CEA last we heard was around 9, all bloods since have been 'excellent', ut no chemo now for 6months, just alternative ideas.

Did I get it right, understand?

Hope so, and I hope Barcelona win on Saturday.

Gary

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

LOL.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

"the question was ,if anybody had achieved some time of NED just by having chemo,i did it and i think must be many others out there!."

Yes, I thought that's what you were asking, and here is what I answered in the previous thread: No. You mentioned Betsydoglover as a possible case of someone who was apparently cured without surgery --- well, maybe. But myself, I don't recall such cases. As I said previously, I have seen people report that after chemo and then surgery, the pathologist could find no cancer in tissue the surgeon removed. But this is not the kind of case you're looking for, because just because the pathologist found no cancer, that doesn't mean there was none.

So if your surgeon and oncologist are recommending surgery, even though you think chemo may have gotten all the cancer, I vote for following the recommendation and having the surgery.

--Greg

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

So we have to play chemo card!

Randy33
Posts: 69
Joined: Jan 2011

I was stage 4 with mets to neck and liver. After 10 rounds of Folfox/ w Avastin my tumors had disappered. That was 2 1/2 years ago and I am still NED. I too am curious if anyone else has been NED for a long period with just chemo. I am doing everything I can to keep the cancer from coming back. Lots of exercise, Medeterainan diet and lots of supplements.
Randy

janie1
Posts: 753
Joined: Apr 2011

That's some really good news. Do u mind sharing which supplements (and how much) you take? Did you take those same supplements while on chemo, or did you really amp up the diet and supplements after chemo? (still trying to figure out what to take now while on folfox) and what to do after. onc is no help. Going to naturopath next week, but i still like to compare what people are doing. Thanks for your time and sharing!

Randy33
Posts: 69
Joined: Jan 2011

I did not take any supplements except for a multivitamin while on chemo. My doctor told me that exercise was the best thing to do so I did that. After chemo a friend gave me the "Anticncer" book and I based my diet on that. The supplements I take are:
1. Resviratrol 100 mg/day-from a 60 Minutes story
2. One regular asprin/day- NBC News story
3. Two fish oil capsuls/day- Article in AARP magazine
4. One Co-Q-10/day- Recomedation from this Board
5. Vit. D3 - Recomendation from this Board
6 One teaspoon of modified citrus pectin/day-Recomendation from this Board
I keep my doctor informed on what I am doing and he is okay with it. He is amazed that my cancer has not returned yet. He never had anyone go over a year without a recurrance. He calls me his miracle man. I think that my exercise program is the most important part of my program. I excercise 3 hrs/day walking, yoga, weight lifting and running. Its been 2 1/2 years so far. My next scan is in July. I hope this helps.
Randy

smokeyjoe
Posts: 1428
Joined: Feb 2011

I saw at the health food market Grapefruite Pectin, is this the same as modified fruit pectin, I also saw apple pectin.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Again Greg I don't say cured just not tumors for a while!.
Hugs!

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi Pepe - since you mentioned me, I thought I would elaborate. I was diagnosed in 5/05 with sigmoid tumor and liver met. My colon resection was done in June '05 and then I did 6 cycles of Xeloda/oxaliplatin/Avastin. Based upon PET and CT scans I was NED after 3 cycles. I stopped chemo the first week of December 2005 and remained NED based on scans every 3 months until Nov. 2008 when a tiny lung nodule showed up. So, I remained NED for 35 months after stopping chemo.

My liver is still clear as of last week. The lung nodule was removed via VATS in 4/09 and then I did Xeloda plus Avastin for 6 cycles, continuing Avastin up until 2 weeks ago. Now I am back in watch and wait mode - will be scanning and doing blood work every 3 months.

I guess what I am saying is that it can happen that chemo alone eliminates liver mets, but that isn't the norm.

Take care,
Betsy

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

for a reasonable time is still possible! LOL. And it was the only meaning of my question Thank you both two , you been very kind !
congratulations to both and will pray for you and your excellent results!.
Hugs!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Manageable? .
Hugs And tks in advance!

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi - I've been on Avastin since June 1, 2009. So, two years. We've just discontinued it. I had a tiny small intestinal bleed which we are running down now - may well have been caused by my arthritis med, but Avastin is also a possibility, so until we figure it out, I'm on a break.

I'm a little nervous to be doing nothing, but I've been there before and so can go there again.

Avastin, by the way, was very tolerable for me. Increased nasal congestion, but other than that no side effects.

Take care,
Betsy

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hugs!

smokeyjoe
Posts: 1428
Joined: Feb 2011

How do they administer the Avastin, infusion?? How often do you have to go to get it?? Thanks Leena.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Avastin is IV just like almost all colon cancer chemo (other than Xeloda). It is technically not chemo, but is a monoclonal antibody (it binds up VEGF and inactivates it). It shuts down the process of tumors growing new blood vessels.

I was on FOLFIRI and Avastin every two weeks since last September (for distant lymph node involvement only - no organ involvement). Things looked good the beginning of February so we dropped the Irinotecan, but kept the 5-FU and Avastin. I progressed again - more nodes involved. So we added Irinotecan back in the end of April, with quick results in dropping CEA. My last tx we dropped the 5-FU. I just got Irinotecan and Avastin. Hopefully this will keep things in control enough, so I don't have to deal with the 2 day pump, and can cut back on toxicity.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

It looked like chemo got rid of my distant lymph node mets, but some came back and I had spread to more nodes when we reduced chemo. I never got to go off of it since my progression...

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