to know when to chemo
Brenda
Comments
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"The Chemo Wars"
Brenda - here is an excerpt from a post I wrote titled, "The Chemo Wars - What's the Real Story? This piece of it might be of some value to you:)
-Craig
The Question: “Should I do chemo following my surgery?”
Our Answer: Has always been to do what you feel best and what your oncologist and medical team feels is right.
That disclaimer takes away the guilt in case we were to advice someone one way or the other and it was not the right path to take – that would be hard to live with for any of us.
Of course, the answer is never definitive. But, I did get to the root of this answer with my oncologist recently and I asked him this question. This is from his medical point of view and not just my opinion.
What he feels is right, is if there are NO cancer cells “detectable” then he is against doing chemo for all the obvious reasons, that you are throwing a “big gun” at this problem with no guaranteed resolution and that you are risking “Densensitation” to the chemo’s effectiveness and that over time, cells will change to make the adjustment , and then the chemo will fail.
He feels it is better to have the “Big Gun” chemo in your holster for when it’s really needed.0 -
Tough Decision
Brenda,
I had a liver resection(complete right lobe)in January 2011 after 6 years of NED. My surgeon was sure of chemo, but my onc was a little more hesitant. My onc. and I had a couple of long discussions wether to do chemo or not and if we were to do chemo, how long. It was a tough decision, but in the long run I wanted to be as proactive as possible. We eventually decided to do four months of the original chemo I had in 2004 (FOLFORI w/out Avastin) and if I did have another recurrence we would still have something to try. I guess we will never know if the chemo did any good, but it gave me some peace of mind.
Take care.
Mike0 -
Brenda
I have been doing the "mopping" up with a short break in between. Mine is NOT chemotherapy but rather biological Therapy which is the Avastin. Since I appear not to be suffering any side effects from it I'll remain on it as long as the insurances let me I think according to decision between onc and myself. At some point I will get off of it, but I have to get to that bravery point.
Winter Marie0 -
Similar Situationmikew42 said:Tough Decision
Brenda,
I had a liver resection(complete right lobe)in January 2011 after 6 years of NED. My surgeon was sure of chemo, but my onc was a little more hesitant. My onc. and I had a couple of long discussions wether to do chemo or not and if we were to do chemo, how long. It was a tough decision, but in the long run I wanted to be as proactive as possible. We eventually decided to do four months of the original chemo I had in 2004 (FOLFORI w/out Avastin) and if I did have another recurrence we would still have something to try. I guess we will never know if the chemo did any good, but it gave me some peace of mind.
Take care.
Mike
Brenda-
While I had Stage IV to the lung at diagnosis and removal of said nodule with clear margins; I received 6 treatments of Folflox after the removal of the lung nodule. I subsequently had 28 days of chemo/radiation then my LAR to remove my rectal tumor. I had a complete pathological response to the chemo/radiation with just scar tissue removed with no pathological evidence of cancer and all lymph nodes were clean.
That being said, I was in a similar situation to your husband. My oncologist offered the mop-up chemotherapy since I was initially a Stage IV but said there is no scientific study determining the benefit in my situation where the cancer was undetectably gone. I had a PET scan last week again showing no evidence of disease. I opted for the perceived security net of additional chemotherapy and have currently completed 9 of 12 Folfori treatments as mop-up. I am contemplating stopping at 10… a decision yet to be made.0 -
Brendaherdizziness said:Brenda
I have been doing the "mopping" up with a short break in between. Mine is NOT chemotherapy but rather biological Therapy which is the Avastin. Since I appear not to be suffering any side effects from it I'll remain on it as long as the insurances let me I think according to decision between onc and myself. At some point I will get off of it, but I have to get to that bravery point.
Winter Marie
My recommendation was for chemo to mop up or as my onc said for preventative meassures.
However my CEA was 1.0 and there was no evidence of decease. SO, I personally opted out and go the natural way to stay NED.
Therefor I agree with Craig's answer, better to keep the big gun for when it is needed.
Ofcourse what ever you decide it is your decission and we all are in different stages of this horrible decease.
Whatever you decide, we are here to support you,
Hugs, Marjan0 -
Chiming in ...
I am not the patient, my mother is, so I hope you don't mind my chiming in ... but my understanding, from lots of research and talking with my mom's onc is that with stage IV, depending on the extent of spread, there is always the chance that a few rogue cells remain behind despite clear scans, and clean margins - so emerging data indicates that for stage IV, high-risk for recurrence patients, it may be most beneficial to stay on some kind of maintenance regimen to proactively address that potential rogue-cell problem.
This is, of course, standard with hematological cancers (leukemia and lymphoma) as well as other solid tumors, such as breast cancer ... patients stay on some kind of maintenance for a certain period of time to prevent recurrences; however, like anything else in life, there are no guarantees ... no guarantee that being on a maintenance regimen is going to fully prevent a recurrence.
My personal opinion is that the big guns (Folfox & Folfiri) should be reserved for treating ACTIVE disease; however, I see no harm in using single agents such as Xeloda, Erbitux and/or Avastin alone and/or in combination to systemically, chronically, treat this disease.
My two cents and thanks for letting me share.0 -
Didn't make any chemo, my onc let the decision on my hands.jasminsaba said:Chiming in ...
I am not the patient, my mother is, so I hope you don't mind my chiming in ... but my understanding, from lots of research and talking with my mom's onc is that with stage IV, depending on the extent of spread, there is always the chance that a few rogue cells remain behind despite clear scans, and clean margins - so emerging data indicates that for stage IV, high-risk for recurrence patients, it may be most beneficial to stay on some kind of maintenance regimen to proactively address that potential rogue-cell problem.
This is, of course, standard with hematological cancers (leukemia and lymphoma) as well as other solid tumors, such as breast cancer ... patients stay on some kind of maintenance for a certain period of time to prevent recurrences; however, like anything else in life, there are no guarantees ... no guarantee that being on a maintenance regimen is going to fully prevent a recurrence.
My personal opinion is that the big guns (Folfox & Folfiri) should be reserved for treating ACTIVE disease; however, I see no harm in using single agents such as Xeloda, Erbitux and/or Avastin alone and/or in combination to systemically, chronically, treat this disease.
My two cents and thanks for letting me share.
There is not evidences of how effective chemo can be if there is no evidence of disease .So can't be very helpful , just look for the decision that keeps you more tranquil .
Hugs.0 -
Avastinpepebcn said:Didn't make any chemo, my onc let the decision on my hands.
There is not evidences of how effective chemo can be if there is no evidence of disease .So can't be very helpful , just look for the decision that keeps you more tranquil .
Hugs.
I see from reading about others on maintenance chemotherapy after no evidence of disease and wonder why Avastin. My oncologist said Avastin is only documented to treat known tumors by restricting blood flows helping to reduce or eliminate the tumor. With the noted serious side effects of this drug, he indicated it is only used for active tumors and not for potential microscopic cell activity or maintenance as there are no studies to support it use in an adjunctive reatmenet with NED staus.0 -
BECAUSEswimmer22 said:Avastin
I see from reading about others on maintenance chemotherapy after no evidence of disease and wonder why Avastin. My oncologist said Avastin is only documented to treat known tumors by restricting blood flows helping to reduce or eliminate the tumor. With the noted serious side effects of this drug, he indicated it is only used for active tumors and not for potential microscopic cell activity or maintenance as there are no studies to support it use in an adjunctive reatmenet with NED staus.
On Scans and in CEA they CAN'T see the LITTLE ITTY BITTY TUMORS, hence if they are there Avastin will be taking care of them. As we all know tumors can hide and not be seen until they get bigger.
Winter Marie0 -
Swimmer22swimmer22 said:Avastin
I see from reading about others on maintenance chemotherapy after no evidence of disease and wonder why Avastin. My oncologist said Avastin is only documented to treat known tumors by restricting blood flows helping to reduce or eliminate the tumor. With the noted serious side effects of this drug, he indicated it is only used for active tumors and not for potential microscopic cell activity or maintenance as there are no studies to support it use in an adjunctive reatmenet with NED staus.
Swimmer - I can't aruge this one. I'm of the same school of thought with this one.
My oncologists have always thought that Avastin WITH a Folfox or Folfiri makes it a more effective 1-2 punch and a more effective therapy...after I could no longer do Folfox, we stayed with Xeloda and Avastin for several more months until we bailed out completely...
I had no evidence of mass and so we suspended treatment at that time. Avastin is known to cause congestive heart failure over time. I read the pharmaceutical white papers that came with the drug. And not too coincidentally, I developed a sort of heart arhthmia after prolonged use (11 months).
My heart feels like it skips a beat on the 'downbeat' and I find myself trying to catch my breath....it happens regularly and throughout the day.
Avastin is used to treat mass by cutting off blood supply to the tumor. No mass - no blood supply to cut off. By continued use, the risks outweigh the benefits.
With Avastin, you get on - then you get off. It's a treatment - not a lifestyle.
Others have not had issues that I had but the effects might not be immediate, they sure weren't for me.
The "mop-up" term is a misnomer anyway - what are we really mopping up, when there's nothing to see? Rogue cells? Do you know how many cells can fit on your thumbnail?
I read one time that for every CM of tumor, it equates to a billion cancer cells....so at one time, I would have had a little over "8-billion" cancer cells systemically floating around my circulatory system.
You need more than a mop if you're gonna' clean up a spill that big.
After 4 major surgeries and over 55x of radiation and chemotherapy, I've still recurred 3x in an 8-year period and staring at a possible 4th.
Systemically flooding the body with any entity in the hopes of 'catching' a cell or two is akin to trying to catch a butterfly with a net. The barn door swung open a long time ago for all of us and the cattle have all scattered like the wind on the prairie.
Of course, everyone has to do what they feel is right for their circumstances.
Time and multiple recurrences have answered my questions regarding this subject and everyone will need more of their own time to reach their conclusions....and you'd be amazed how several recurrences can change your thinking.
-Craig0
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