chemo for a second time ,while in remission????

alta29

Hi !
I have seen 2 post of people that are put back into chemo even though they are NED ( after 6 months and in remission)...can someone tell me a little more about it ? I have been in remission since august and the Dr. never mentioned about going back to chemo...

Betsydoglover

Hi -

I am curious too. Right now I am doing great (fantastic actually), but somewhere along the line I got the impression I might be put back on chemo anyway. (My oncologist actually indicated that I may well be on some combination of drugs off and on for the rest of my life.) When we stopped chemo in early December it was characterized as "a break". But since scans / MRIs in Dec, Feb, March and April have been perfect, I am wondering if this is a break or the end until such time as it is needed again. Have an appointment with my onc next Friday morning and certainly plan to ask about this - NOT that I want to go back on chemo!

It's definitely confusing. And we are all individuals. I get some vibes that my case is not especially considered to be "normal".

Good luck.

Betsy

alta29

Betsydoglover said:

Hi -

I am curious too. Right now I am doing great (fantastic actually), but somewhere along the line I got the impression I might be put back on chemo anyway. (My oncologist actually indicated that I may well be on some combination of drugs off and on for the rest of my life.) When we stopped chemo in early December it was characterized as "a break". But since scans / MRIs in Dec, Feb, March and April have been perfect, I am wondering if this is a break or the end until such time as it is needed again. Have an appointment with my onc next Friday morning and certainly plan to ask about this - NOT that I want to go back on chemo!

It's definitely confusing. And we are all individuals. I get some vibes that my case is not especially considered to be "normal".

Good luck.

Betsy

please let me know...my appt is on the 5th...I will also ask.....

rthornton

Betsydoglover said:

Hi -

I am curious too. Right now I am doing great (fantastic actually), but somewhere along the line I got the impression I might be put back on chemo anyway. (My oncologist actually indicated that I may well be on some combination of drugs off and on for the rest of my life.) When we stopped chemo in early December it was characterized as "a break". But since scans / MRIs in Dec, Feb, March and April have been perfect, I am wondering if this is a break or the end until such time as it is needed again. Have an appointment with my onc next Friday morning and certainly plan to ask about this - NOT that I want to go back on chemo!

It's definitely confusing. And we are all individuals. I get some vibes that my case is not especially considered to be "normal".

Good luck.

Betsy

I've been in remission since last September, and have continuously been in chemotherapy. Well, at the moment I am taking an eight week break, and last fall I took a four week break, but always with the understanding that I will return to treatment. My doctor is known for treating cancer aggressively. He has even talked about me being in some form of treatment forever ... but I don't know about that. He wants to continue treatment using only targeted therapy drugs because I tolerate them very well and he wants to minimize the chances of recurrence. Does this help to clear things up a bit? If you have any questions about my treatment, feel free to send me a CSN email.

Rodney

pink05

I am confused about all of this. I know someone who's mother is stage IV and has been in remission for two years. She has not been back on chemo since. She just did 6 months when she was diagnosed, was NED, and has been ever since. I would think that being on chemo forever would have a worse effect than the cancer would, even with a three month break. I have heard of people who have gotten so worn down from chemo. Also, I have heard that some chemotherapies stop working after a while. I asked my dad's onc if my dad would be on chemo forever and he said we would need to take it on a step by step basis. I guess everyone is different and every doctor has his/her own approach to treating their patients.

-Lee-

KathiM

pink05 said:

I am confused about all of this. I know someone who's mother is stage IV and has been in remission for two years. She has not been back on chemo since. She just did 6 months when she was diagnosed, was NED, and has been ever since. I would think that being on chemo forever would have a worse effect than the cancer would, even with a three month break. I have heard of people who have gotten so worn down from chemo. Also, I have heard that some chemotherapies stop working after a while. I asked my dad's onc if my dad would be on chemo forever and he said we would need to take it on a step by step basis. I guess everyone is different and every doctor has his/her own approach to treating their patients.

-Lee-

Hey, you guys, you are scaring me! The only chemo I had was pre-surgical...nothing since. I was Stage II, so maybe that's the difference.
Hugs, Kathi

crazylady

Hi Everyone,
My onc wants me off chemo if my scans are clear. My last scans were clear and I did 4 more sessions of Folfox. His explanation is that I responded well to this chemo and that if I stayed on it and the cancer recurred then I would never be able to use it again. I also think my body needs a break. I will be monitered every 2 to 3 months. It's interesting that oncologists do things so differently.
Jamie

2bhealed

hi all,

as most of you know I never did any chemo--my choice being that I was Stage 3 and adjuvant chemo was recommended.

I have remained NED for over 4 years (5 yrs will be in August) but every time I went for my onc appointments he would STILL say, "Emily, I want you to do the chemo." That was even while remaining NED each time. Well, the thing is that's his job. He admitted it.....until HE got colon cancer and had to stare it in the face himself. Now when I go to my appointments we talk about juicing and he never brings up chemo anymore.

If a doctor sees cancer as a chronic condition rather than one that can be healed then it makes sense that s/he would continue to promote a cytotoxic approach to managing the disease.

But in holistic healing we look for the ROOT case of cancer because cancer is a SYMPTOM of a larger problem.....a problem that Western medicine fails to address, therefore they will continue to deal in drug therapy.

The problem with that approach is that cytotoxic therapies can CAUSE secondary cancers, leukemia, heart and kidney damage for starters.

So if your doctor recommends you continue on chemo indefinitely, I surely would consult a Naturopathic physician and see what other options could be available for your situation.

I dream of a day when doctors treat the whole system and not just break us down into body parts that have become diseased.

peace, emily who doesn't like the term remission anyway since it implies it's just hiding and waiting to pounce again.....

Betsydoglover

crazylady said:

Hi Everyone,
My onc wants me off chemo if my scans are clear. My last scans were clear and I did 4 more sessions of Folfox. His explanation is that I responded well to this chemo and that if I stayed on it and the cancer recurred then I would never be able to use it again. I also think my body needs a break. I will be monitered every 2 to 3 months. It's interesting that oncologists do things so differently.
Jamie

Jamie - I am actually close to positive that this is what my oncologist is going to say. I know she is thrilled with how I am doing and I know she doesn't believe in using excess chemo once "best response" has been achieved. I think her earlier comment about "off and on forever" was preparing me for the fact that Stage IV disease can be chronic.

I'll get her take on Friday, but if she recommends resuming chemo, we'll have to have a very serious conversation!

Betsy

Betsydoglover

KathiM said:

Hey, you guys, you are scaring me! The only chemo I had was pre-surgical...nothing since. I was Stage II, so maybe that's the difference.
Hugs, Kathi

Kathi -

Regardless of the divergent opinions on chemo, Stage II is very different from Stage IV. I wouldn't worry if I were you - rather consider yourself quite lucky (relatively speaking)!

Betsy

Betsydoglover

2bhealed said:

hi all,

as most of you know I never did any chemo--my choice being that I was Stage 3 and adjuvant chemo was recommended.

I have remained NED for over 4 years (5 yrs will be in August) but every time I went for my onc appointments he would STILL say, "Emily, I want you to do the chemo." That was even while remaining NED each time. Well, the thing is that's his job. He admitted it.....until HE got colon cancer and had to stare it in the face himself. Now when I go to my appointments we talk about juicing and he never brings up chemo anymore.

If a doctor sees cancer as a chronic condition rather than one that can be healed then it makes sense that s/he would continue to promote a cytotoxic approach to managing the disease.

But in holistic healing we look for the ROOT case of cancer because cancer is a SYMPTOM of a larger problem.....a problem that Western medicine fails to address, therefore they will continue to deal in drug therapy.

The problem with that approach is that cytotoxic therapies can CAUSE secondary cancers, leukemia, heart and kidney damage for starters.

So if your doctor recommends you continue on chemo indefinitely, I surely would consult a Naturopathic physician and see what other options could be available for your situation.

I dream of a day when doctors treat the whole system and not just break us down into body parts that have become diseased.

peace, emily who doesn't like the term remission anyway since it implies it's just hiding and waiting to pounce again.....

Emily -

I too HATE the term "remission" and will never use it!

Betsy

rthornton

Betsydoglover said:

Emily -

I too HATE the term "remission" and will never use it!

Betsy

I don't have a problem with the word "remission" although I'm not so fond of the word "recurrence."

Like Betsy, when my doctor talks about indifinite treatment, I think he's thinking of the potential of stage four to be chronic and keeping a close watch with frequent scans, blood tests, etc, and addressing issues when they come up. I cannot imagine that he wants to keep me on Erbitux and Avastin for the 40 or more years that I plan to be around.

The thing about seeing a naturopathic doctor, for me anyway, is that after I was diagnosed and had my initial surgery my insurance quickly ran out. I was working a part time job back then while taking prerequisite classes for my graduate program, and the health insurance was modest in its coverage. Ever since I have been on Medicaid that only selectively covers medical costs. I asked them once if they cover NDs and they said no (they won't even pay for a PET scan ... I've had to do that out of pocket). Being out of work and on Medicaid, it's unlikely that I will see a ND. I have to go with what is available to me, and that's an oncologist.

In about a year I will again have a private health insurance plan (if all goes as planned), so maybe then I'll have more options.

Rodney

2bhealed

rthornton said:

I don't have a problem with the word "remission" although I'm not so fond of the word "recurrence."

Like Betsy, when my doctor talks about indifinite treatment, I think he's thinking of the potential of stage four to be chronic and keeping a close watch with frequent scans, blood tests, etc, and addressing issues when they come up. I cannot imagine that he wants to keep me on Erbitux and Avastin for the 40 or more years that I plan to be around.

The thing about seeing a naturopathic doctor, for me anyway, is that after I was diagnosed and had my initial surgery my insurance quickly ran out. I was working a part time job back then while taking prerequisite classes for my graduate program, and the health insurance was modest in its coverage. Ever since I have been on Medicaid that only selectively covers medical costs. I asked them once if they cover NDs and they said no (they won't even pay for a PET scan ... I've had to do that out of pocket). Being out of work and on Medicaid, it's unlikely that I will see a ND. I have to go with what is available to me, and that's an oncologist.

In about a year I will again have a private health insurance plan (if all goes as planned), so maybe then I'll have more options.

Rodney

Hi Rodney!

My insurance doesn't cover an ND either. I consulted with one and paid out of pocket (can you say VISA?) and she helped me wade through much of the supplement/vitamin issues, but actually I did most of my work with a Traditional Chinese Medicine practitioner. (again, can you say VISA).

Getting a juicer is a bit of an initial investment of about $225 and then it's just what produce you buy. My 25# bag of juicing carrots run between $13-15 every couple of weeks and a bag of granny smith apples every few days--depending on how much juice per day (at the height I was juicing 3 quarts a day which is a healing protocol amount rather than a maintenance amount (now I am doing from 16-32 oz a day). And then green powder is about $35/week.

Ok, so that you can do without consulting an ND but just by doing some research on your own (Gerson Institute, www.hacres.com, www.curezone.com....etc).

Just some suggestions that are free! :-)

Health comes at a cost--but in the long run I think it is worth the investment!

I surely hope you're not on Avastin or Erbitux that long! Specially at $25,000 an injection!

What robbery! I think the pharmaceuticals (sp) are evil charging those kind of prices. Can you imagine if we were all given that kind of leeway with our insurance companies to cover nutritional supplements???

hey a girl can dream.....

peace, emily who dreams of a day when insurance companies realize that in the long run springing for good nutrition is cheaper and improves lives.....

KathiM

Betsydoglover said:

Kathi -

Regardless of the divergent opinions on chemo, Stage II is very different from Stage IV. I wouldn't worry if I were you - rather consider yourself quite lucky (relatively speaking)!

Betsy

Thanks, Betsy, Whew! I only worry because my onc was the 'weak link'...I am changing to another one (easy out...my onc no longer contracts with my HMO group..hehehe).
Thanks, I do feel close to lucky...just passed her in the hall...LOL
Hugs, Kathi