cure/ maintenance

Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited March 2014 in Colorectal Cancer #1
Hi Everyone,
Now that **** has a met (1 lymph node) he will be on a different chemo. Our goal is for him to become cured or NED. I'm trying to figure out when or why the docs start using the words maintenance chemo. Do they come right out and say it? For those of you who went from Stage 3 to Stage 4 do you still go at it for a cure? I know this is kinda picking words apart but I want to know that it is reasonable or possible that **** can become NED. What words do your docs use? It seems that the docs at Sloan talk a lot about a cure.
Any ideas or info would be good.
Aloha,
kathleen

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    In my own words.....
    everything I have heard in here and everything I have read tells me that a cure is going for No Evidence of Disease for a 5 year period, without reoccurence. Then they consider you cured. Maintenance chemo is what I consider to be to keep known cancer cells or tumors or nodules from getting any larger or metastises to other organs until other treatments are available or maybe simply to keep it at bay...The medical field is moving so fast that by the time we find a new med they already have another in trial...To me maintenance is to keep it at bay until the next breakthrough comes along , which seems to be getting faster all the time.....Kathleen and ****, if your Drs talk about a cure then I wouldn't let your minds accept anything less. Take that word "CURE" and start rebuilding, long range planning, making new memories, live life as if nothing has happened and its a bump in the road. It looks as though your Drs have a great idea that your gonna be around for quite a longgg time, and they normally know what they are saying when those statements are made...Good Luck to you both, it will just be a short journey back to normal, Clift
  • Shayenne
    Shayenne Member Posts: 2,342
    #3
    Buzzard said:

    In my own words.....
    everything I have heard in here and everything I have read tells me that a cure is going for No Evidence of Disease for a 5 year period, without reoccurence. Then they consider you cured. Maintenance chemo is what I consider to be to keep known cancer cells or tumors or nodules from getting any larger or metastises to other organs until other treatments are available or maybe simply to keep it at bay...The medical field is moving so fast that by the time we find a new med they already have another in trial...To me maintenance is to keep it at bay until the next breakthrough comes along , which seems to be getting faster all the time.....Kathleen and ****, if your Drs talk about a cure then I wouldn't let your minds accept anything less. Take that word "CURE" and start rebuilding, long range planning, making new memories, live life as if nothing has happened and its a bump in the road. It looks as though your Drs have a great idea that your gonna be around for quite a longgg time, and they normally know what they are saying when those statements are made...Good Luck to you both, it will just be a short journey back to normal, Clift

    It scared me....
    ...I had heard my onc talk once about Maintenance therapy, and this was before the tumors in my liver shrunk, and all I could think about was, that it meant they "maintain" you as long as you can last on the chemo, since Stage 4 is not curable, but can be treatable....and it's just to keep you alive as long as they can, it's just a scary thought, but when she brings it up again, I will make sure she is more thorough, since we just talking options, I didn't get into details at the time.
  • pf78248
    pf78248 Member Posts: 209
    #4
    Going from Stage 3 to Stage 4
    Kathleen,
    I don't post often but I read the messages almost daily. My husband David was diagnosed with stage 3C colon cancer in April of last year. After six months of chemo (Folfox and Erbitux until he stopped it (the Erbitux) because of the KRAS mutation) he was scanned with a diagnosis of NED. The doctor even talked about a possible cure. Unfortunately, two months later his scan showed a single met to his liver. Now we were Stage 4.

    Our doctor told us he would no longer be going for a cure but to give David as long as possible with a goal of NEAD (no evidence of active disease). David then went on Folfori with Avastin for two months in hopes of a liver resection. When that was ruled out, he was scheduled for an RFA but fortunately the day of the procedure the scan showed no tumor. No RFA. That was a mixed blessing. Our oncologist feels sure it will reappear. He just had a Pet scan and we will know next week what the next steps will be. Like everyone else on this board, we take it one day at a time. We just hope new drugs and treatments will some day give a cure, but now we have been told David will be on maintenance chemo for the foreseeable future. I think that means "forever". We try to stay positive and we plan for the future, but we both know every day is more precious to us now.
    Hugs and positive thoughts and prayers to you and ****.
    Priscilla
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
    Buzzard said:

    In my own words.....
    everything I have heard in here and everything I have read tells me that a cure is going for No Evidence of Disease for a 5 year period, without reoccurence. Then they consider you cured. Maintenance chemo is what I consider to be to keep known cancer cells or tumors or nodules from getting any larger or metastises to other organs until other treatments are available or maybe simply to keep it at bay...The medical field is moving so fast that by the time we find a new med they already have another in trial...To me maintenance is to keep it at bay until the next breakthrough comes along , which seems to be getting faster all the time.....Kathleen and ****, if your Drs talk about a cure then I wouldn't let your minds accept anything less. Take that word "CURE" and start rebuilding, long range planning, making new memories, live life as if nothing has happened and its a bump in the road. It looks as though your Drs have a great idea that your gonna be around for quite a longgg time, and they normally know what they are saying when those statements are made...Good Luck to you both, it will just be a short journey back to normal, Clift

    Well Put Clift
    I think you summed it up pretty good here Clift. My first doc who "discovered" I had cancer said all they could do was to buy me some time. WRONG ANSWER. I went to Sloan and they talked about curing me. Well, I'm still not cured but I do think that it may happen. It's hard to say what will happen but again, like Clift said, there are always new drugs in the pipeline. I was fortunate to be able to use Avastin when it first came out and Erbitux too. I have a few mets but they are behaving and have been stable for many months. My goal is to keep riding the wave of technology like I have been and keeping ahead of the cancer. Part of it (to ME) is semantics too. NED, Cured, Remission, NEAD...whatever! The cancer is not growing and /or spreading so that is good enough for me. If 10 years from now I am still not NED and not DEAD, I will be as happy as hell. Keep on living and shooting for NED. The most important thing is to not let it run your life, enjoy things and make the most of it. I think often we (cancer folks) just think it's going to be cancer that takes us out. It ain't necessarily so (as the song goes) so I don't dwell on that.
    I think of happier ways to die like old age!
    ;-)
    -phil
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #6
    My doctors
    Kathleen,

    Before I had surgery my two surgeons both talked to me about this being "curative" surgery. My liver surgeon has been published quite a bit and he actually has done retrospective studies concerning 'cure' and at MSK they consider 10 years of NED to be 'cured.' At the end of the day I guess the semantics are irrelevant. If I make it to 5 years and then hopefully 10 years I don't care what it's called. Right now I am just taking it one month at a time.

    I would like to share with you that a good friend of ours was diagnosed with Stage IV colon cancer 6 years ago. He had extensive lymph node involvement throughout the chest and neck area. He had a neck lymph node biopsied and it was confirmed as colon cancer. The doctors told him there was no reason to resect his colon tumor at that time. After 6 months FOLFOX and Avastin the lymph nodes cleared up and the surgeon went ahead and resected the colon. He did adjuvant chemo for a few months more. He just had his 5 year NED anniversary this spring and we were happy to celebrate that with him. Now he is 5 1/2 years NED.

    So I am in the camp that thinks that Stage IV is curable and my surgeons believe that too.

    Aloha,
    Amy
  • sfmarie
    sfmarie Member Posts: 602
    #7
    CURE
    Kathleen,

    I pray that **** gets Cured! Our docs. said there is no cure; maybe that means there is always a chance of recurrence. I think maintenance chemo has kept many people alive for many years. I read someone was still on it after 7 years! I think you are aiming for the right goals! You'll get there.

    Marie
  • Mike49
    Mike49 Member Posts: 261
    #8
    I'm still looking for NED
    I agree with Clift and Phil, I shoot for NED, Longevity, new treatments and my onc thank goodness never says cure is not possible. I am like you in terms of where my disease is, it has not responded well to the treatment we tried, we will try something else.

    I hope you two can remain hopeful and I know that is not always easy. **** always sounds strong in your disciption and I think that is a great asset along with his surfing etc. It is so important to live our lives while we fight, don't let the cancer define or overly limit us. I wish you both the best, Mike
  • dorookie
    dorookie Member Posts: 1,731 Member
    #9
    pf78248 said:

    Going from Stage 3 to Stage 4
    Kathleen,
    I don't post often but I read the messages almost daily. My husband David was diagnosed with stage 3C colon cancer in April of last year. After six months of chemo (Folfox and Erbitux until he stopped it (the Erbitux) because of the KRAS mutation) he was scanned with a diagnosis of NED. The doctor even talked about a possible cure. Unfortunately, two months later his scan showed a single met to his liver. Now we were Stage 4.

    Our doctor told us he would no longer be going for a cure but to give David as long as possible with a goal of NEAD (no evidence of active disease). David then went on Folfori with Avastin for two months in hopes of a liver resection. When that was ruled out, he was scheduled for an RFA but fortunately the day of the procedure the scan showed no tumor. No RFA. That was a mixed blessing. Our oncologist feels sure it will reappear. He just had a Pet scan and we will know next week what the next steps will be. Like everyone else on this board, we take it one day at a time. We just hope new drugs and treatments will some day give a cure, but now we have been told David will be on maintenance chemo for the foreseeable future. I think that means "forever". We try to stay positive and we plan for the future, but we both know every day is more precious to us now.
    Hugs and positive thoughts and prayers to you and ****.
    Priscilla

    Almost the same
    ALmost the samething my Onc told me. At my last appointment I asked him if I was NED because the PET didnt show anything, he replied "there was no evidence of Active disease". I felt like I got a punch in the stomach when he said that, but it was better then anything being there. I go for my next pet scan in a week and then have to wait two weeks to get the results. So I am hoping for NEAD myself, I would perfer NED but either one is okay with me. My ONC has never mentioned maintenance chemo to me, and I pray he never does.

    I believe the cure is always possible and I will always believe that and pray for that for me and everyone that has to face this battle!

    God Bless
    Beth
  • robinvan
    robinvan Member Posts: 1,012
    #10
    Go for the Cure!
    I think Clift has said it well. 5 years of no recurrence and your chances of a recurrence begin to approximate that of the general population. (I'm told) So you could basically say CURED. And Yes it is definitely possible for stage 4 as witnessed by many on this site. I think it is reasonable to hold out the hope of a cure... i.e. long term survival until you eventually die of something else. Old age we hope! That means accessing "curative" treatment regimes such as Liver resections when possible.

    That said... there are many good outcomes short of a full cure. I've enjoyed two long periods NED. That is no evidence, no symptoms, no treatments. Both have been good and we were hoping CURE. With a new recurrence we have to reassess but that's another matter.

    I hope the best for you both!

    Rob; in Van
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #11
    Thank you
    Thanks to each of you who answered my post. You have so much wisdom, compassion and courage. You are a wonderful group.

    Aloha,
    Kathleen
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #12
    Kathleen808 said:

    Thank you
    Thanks to each of you who answered my post. You have so much wisdom, compassion and courage. You are a wonderful group.

    Aloha,
    Kathleen

    and...................
    the both of you are wonderful people............{{{{{{{{{{hugs}}}}}}}}}} from Kentucky
  • DennisR
    DennisR Member Posts: 148
    #13
    Hi Kathleen and ****,
    I was
    Hi Kathleen and ****,

    I was DXd with Stage 4 NHL in 2000, I had a couple of surgeries followed by R_CHOP Chemo and was NED for 8 great years and considered "Cured". In May, 2008 I had a recurrance of NHL, Stage 2, and opted for Chemo to shrink the tumor. My regular Oncologist told me it was probably terminal, given my age and history and recommended Maintenance therapy only. I got a 2nd opinion from an Oncologist in the Denver VA, who told me he could "absolutely" destroy and shrink the tumor, the only hitch was that I wouild need to qualify for a BMT/Stem cell transplant to get a reasonable chance at a long term "Cure" since recurring cancers tend to recur again within a short time.
    I managed to get approved for the Transplant, and underwent the procedure on Feb 10th. 2009, it went very well for me and I became the "Poster Boy" for the BMT unit in the Seattle VA. My Marrow accepted the transplant and began producing new stem cells in 7 days and I was on my way home in 45 days...NED.
    I suspect that had I just accepted what the local Oncologist told me, I'd be feeling a lot different than I do today and my prognosis would be vastly different as well.
    Some Oncologists just go by the book and follow common protocol and never take a risk, others are much more aggresive and go for the Cure every time. The Oncologist in Denver used a completely unique regimen of Chemo drugs that he had developed himself and with which he had a long history of successes.
    I don't know exactly what I'm trying to say here, except, "never give it up", don't accept a statistic based opinion of survivability, ask questions, research, and become an exception.
    My thoughts and prayers are with you.
    DennisR
  • patsy1954
    patsy1954 Member Posts: 85
    #14
    Chronic Illness
    I was just diagnosed in April with Stage 4 colon cancer. My only symptom was fatigue, so what a shock to find out that even after having had a colonoscopy 4 yrs earlier that I had mets to multiple lymph nodes and half of my liver. I had a colon resection 2 days after my diagnosis and have had 10 of 12 Folfox6 treatments. My medical and surgical oncologists both tell me that I should look at this as a chronic disease. Once I am off the Folfox6 I will be put on maintenance chemo for what they say is the rest of my life. Having been a nurse for 33 yrs I can accept the chronic illness description. I look at it as if I had diabetes or some other disease that requires constant meds and maintenance. I can't wait for my next CT scan and CEA to see how things are going. My last CT in June showed "considerable shrinkage" of the liver tumor. My last CEA was 14.5 from a high of 269, all looks good so far. I guess every oncologist has a different way of describing this disease on a long term basis.

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