Damned thing is back!

elizabethgd

vhtqm1 said:

don't take it as negative
i too am in the same line of thinking as Phil. in retrospect if the Oncologist had told me almost 4 years later i'd probably still be on chemotherapy, well, i'm just not sure how i would of digested that? i remember being told to "get my affairs in order" when initially being diagnosed and the way i digested that was ""yeah right!!"" lol...so, with that particular experience i guess my answer if i was told that chemotherapy would probably be a lifetime treatment would have been the same===yeah right.... i'm still striding for that NED experience (again) which has happened for me once for over 6 months until 2 lesions were discovered on the liver again. i say again because initially i did have mets to liver among other places and became a surgical mirracle after my first round of treatment. so the advice i'd like to share with you???? you were NED once let's do it again!! hope all is well.

ed

Sorry
Sorry to hear that you have had a recurrence I, also agree with Phil's thinking on this topic of "NED"...
I hope all goes well with you and everyone here will be offering you support.
Elizabth

Hatshepsut

PhillieG said:

Mike
I'm sorry to hear that you are going through this. What I am going to post may not be well received. I certainly mean no harm nor do I feel that things are hopeless. Quite the opposite. I have noticed that many folks on here are in such a hurry to be declared NED that I feel it's often very premature. So much so that I have noticed that more than half of the folks who say they are "NED" or "cured" are suddenly back in the saddle with cancer after a short time. It takes years to develop cancer, it often does not go away just like that I've found. Now this is me talking about my experience and observations having been living with stage IV colon cancer for over 6 years and a member of this site for 6 years too. After each of my 5 surgeries and 2 ablations I've heard the surgeons say "it looks like we got it all". That's seven times I've heard what could be interpreted as NED. Not once did I ever consider myself NED. You can call it what you want but I always thought that it doesn't go away just like that. Out of all 7 times, not once did my Oncologist tell me that I was NED. From the beginning we've been striving for me being "cured" but the nature of the beast is that all it takes is one little cell to escape and then you could have a recurrence if you want to call it that. I don't know if everyone's Surgeons, Oncologists, or just the pressure those doctors feel from their patients cause them to make that call or if the doctors are so confident that they feel they've beaten cancer.

After many, if not most of my surgeries I've gotten to a point where things look "stable" so I've been given breaks that usually last 2 months. I savor every one of those. I am coming to the end of one right now. I'll be getting scanned soon and we shall see where I'm at right now. Last scan showed some spots but she's not sure if it's something still there or if it's just me. I'll find out soon enough. I am expecting to go back on Erbitux for another time around the park.

As much as I wish I never got cancer or that it would just go away, I still have it and we are roommates it seems. I'm living with cancer, not dying from cancer. I kayak, garden, play with my kids, fish (OK, drown worms) and many other things but I am not about to get on the roller coaster of wanting so much to be NED only to find out that "it" followed me and is along for the ride. We ALL deal with this as best we can and how we think it will be best for each of us. I don't claim to know any answers, I only know what works for me. I do know if I heard the word "NED", I would be VERY skeptical. Happy but skeptical.

Now, back to you Mike. OK, still with me for second. Cancer is a series of new normals I've found. I can certainly relate to having time off and feeling as good as it gets, only to be back on the chemo. It sucks. I'm confident that there must be options out there for you. I had numerous spots on my liver, some on my hepatic artery so I was inoperable. I went on FOLFOX/Avastin and the Avastin shrunk the liver tumors so they became operable. It worked extremely well for me. Possibly that could be tried so it could put you in a position where they could operate and remove the spots. There is also RFA (Radio Ablation) where they fry the tumors. That is not invasive and quite successful. I would certainly investigate that option and also explore getting a second opinion from another oncologist.

I am truly sorry that you are going through this roller coaster as I am for the countless other members here who have gone through the same thing. There is hope for NED or being cured. I've rarely seen it happen just like that though unless it's an early stage like I or II.

I have learned to like lemonade since that is often what is served to me.

I wish you the best Mike. I hope I didn't offend you or others. I strongly believe that attitude is 90% of beating this or of living a long life with it.
Keep fighting.
-phil

As usual, Phil, you have the courage to tell it like it is.

Yours in a courageous, frank, and obviously heartfelt statement about the realities of a colon cancer diagnosis--a very nice piece of writing, too.

Like everyone else who has a loved one with cancer, I want my husband to be cured. More than my words can express, I would like to be able to say that my husband HAD cancer and put a period at the end of the sentence. While others may be more lucky, four years into the fight and numerous recurrences later, I know that is not likely to happen for us.

Like you, I've come to realize that a person can live with cancer as a chronic disease, but (again like you) I realize that can only happen if we are vigilant every second of every minute of every day. This was not an easy realization for me; my approach has always been to downplay symptoms and assume the best. Every time we've been lucky enough to have a CT or PET scan that showed no evidence of cancer, I've dared to hope that that finding would somehow be permanent only to see the cancer recur. Even today, my heart tempts me to keep doing that despite evidence to the contrary.

The important truth I've learned fighting my husband's disease is that you can't ever take your eyes off the enemy. That kind of vigilance puts you on the top of the curve, grasping the best therapies at the earliest possible moment when those therapies can be most effective. While it is tempting, it is counter-productive to wish so much for a cure that you miss the opportunity to take action when you need to take action.

I also realize that any of us can lose this fight and it is important to make every moment, every joke, and every kindness last.

Hatshepsut

sfmarie

More opinions
I agree with others that you need to go for a second, third or even fourth opinion. Even if the tumors are on either side of the liver, if you only have three, I think you have options. Some doctors want systemic chemo then a liver resection so this may not be bad after all. I agree, cancer sucks! Keep fighting!

Kathleen808

PhillieG said:

Mike
I'm sorry to hear that you are going through this. What I am going to post may not be well received. I certainly mean no harm nor do I feel that things are hopeless. Quite the opposite. I have noticed that many folks on here are in such a hurry to be declared NED that I feel it's often very premature. So much so that I have noticed that more than half of the folks who say they are "NED" or "cured" are suddenly back in the saddle with cancer after a short time. It takes years to develop cancer, it often does not go away just like that I've found. Now this is me talking about my experience and observations having been living with stage IV colon cancer for over 6 years and a member of this site for 6 years too. After each of my 5 surgeries and 2 ablations I've heard the surgeons say "it looks like we got it all". That's seven times I've heard what could be interpreted as NED. Not once did I ever consider myself NED. You can call it what you want but I always thought that it doesn't go away just like that. Out of all 7 times, not once did my Oncologist tell me that I was NED. From the beginning we've been striving for me being "cured" but the nature of the beast is that all it takes is one little cell to escape and then you could have a recurrence if you want to call it that. I don't know if everyone's Surgeons, Oncologists, or just the pressure those doctors feel from their patients cause them to make that call or if the doctors are so confident that they feel they've beaten cancer.

After many, if not most of my surgeries I've gotten to a point where things look "stable" so I've been given breaks that usually last 2 months. I savor every one of those. I am coming to the end of one right now. I'll be getting scanned soon and we shall see where I'm at right now. Last scan showed some spots but she's not sure if it's something still there or if it's just me. I'll find out soon enough. I am expecting to go back on Erbitux for another time around the park.

As much as I wish I never got cancer or that it would just go away, I still have it and we are roommates it seems. I'm living with cancer, not dying from cancer. I kayak, garden, play with my kids, fish (OK, drown worms) and many other things but I am not about to get on the roller coaster of wanting so much to be NED only to find out that "it" followed me and is along for the ride. We ALL deal with this as best we can and how we think it will be best for each of us. I don't claim to know any answers, I only know what works for me. I do know if I heard the word "NED", I would be VERY skeptical. Happy but skeptical.

Now, back to you Mike. OK, still with me for second. Cancer is a series of new normals I've found. I can certainly relate to having time off and feeling as good as it gets, only to be back on the chemo. It sucks. I'm confident that there must be options out there for you. I had numerous spots on my liver, some on my hepatic artery so I was inoperable. I went on FOLFOX/Avastin and the Avastin shrunk the liver tumors so they became operable. It worked extremely well for me. Possibly that could be tried so it could put you in a position where they could operate and remove the spots. There is also RFA (Radio Ablation) where they fry the tumors. That is not invasive and quite successful. I would certainly investigate that option and also explore getting a second opinion from another oncologist.

I am truly sorry that you are going through this roller coaster as I am for the countless other members here who have gone through the same thing. There is hope for NED or being cured. I've rarely seen it happen just like that though unless it's an early stage like I or II.

I have learned to like lemonade since that is often what is served to me.

I wish you the best Mike. I hope I didn't offend you or others. I strongly believe that attitude is 90% of beating this or of living a long life with it.
Keep fighting.
-phil

Phil
Phil,
Thanks for sharing. Truly, your words mean so much to us as you have "been there" and you are living life. You're awesome!

Aloha,
Kathleen