The "gift" that keeps on giving

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jjaj133
jjaj133 Member Posts: 867 Member
edited September 2017 in Colorectal Cancer #1

Hello All, I havent been on in years. It got too hard, so many friends losing the battle. Glad to see names from when I joined in 2011.

I have had more surgeries, my cancer seems to want to come and go at will. origninally had colon resect. 5 years later liver resect, a year later liver resect. then 5 years it showed in liver and diaphragm. This was Sept.2017, surgery successful. then a 6 month ct scan showed it was back in the adreanal gland. I had surgery Aug 3, 2017 and am now recuperating Since the beast is rearing its ugly head more frequently i am going on maintenace chemo. Starting oct. 4 i will get avastin, and xeloda. 4 pills in the am and 4 in the pm. (2000)I had xeloda before and had awful hand and foot syndrome, so not happy about this. I am very lucky in that i have been battling this since 2004, I've   have had many wonderful years.I plan on having many more.I get the idea of maintenance, I've had so many surgerys I think I've reached my limit. Now, My question is for those of you on maintenance, I feel like I am going to spend the rest of my life tied to the hospital. I live in Florida, but have family in PA. So I visit often. Do you plan your vactions around infusion appts? Petty stuff to be concerned over, just a bit shocked at the sudden reocurrance. How did the avastin and xeloda make you feel? Its been too long for me to remember> btw, I am 72 and still very active. So to everyone out there, Ive been stage 4 for15 years. aiming for 20!

Comments

  • jajmom
    jajmom Member Posts: 33 Member
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    You are an inspiration

    Hello jjaj133,

    I do not have any advice for you regarding maintenance chemo, but I wanted to address your post.

    I just want you to know how much of an inspiration your story is. Boy, you have been through it all and you're still taking life for all it has to give! 15 years stage 4 I'm sure hasn't been a walk in the park, you have been through a lot. I pop over on this board every now and again to see how folks are doing. This time around I'm spending my time on the Anal board as that is what my most recent issue is, I was diagnosed in January 2017. I am also a long term survivor of non-hodgkins lymphoma, having had a bowel resection and radiation with 1 year of chemo. back in my younger days! (36 yrs ago!)

    A very dear friend of mine has just been diagnosed with rectal cancer and she has not been staged yet. She is getting her first PET scan this week. She does have lymph node involvement and she will need a permanent ostomy and reconstruction of her vaginal wall when she has surgery following her first 5 weeks of daily chemo and radiation. (they have already removed the bulk of her tumor) She is scared but very positive, I have encouraged her to join this wonderful place for its wealth of information and comforting advice. I will be telling her about your battle and your amazing resiliancy!

    I understand your remark regarding losing too many friends. Sometimes I feel that since I have had to deal with this (twice now) my friends and family should be immune! It broke my heart to find out that another friend has been diagnosed, two women friends from church have lost their battles already this year.

    Please consider sticking around here on the forum again, your story and experience mean so much. There are new folks everyday joining this site, facing cancer for the first time, and its always good to find an encouraging attitude and testimony like yours! As you enter this new phase of treatment, maybe it will be theraputic to share again with others.

    But thank you, we all need ecouragement regardless of what monster we are facing!

    Chris

    BTW, my friend and I are both in PA :)

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Hello, and welcome back

    You certainly have travelled a rough road, but it is still impressive to be stage IV and so many years out. 

    I too can't address the maintenance chemo, as my Onc decided against it after my liver surgery. So far, so good for me. 

    With so many recurrences, I think I would lean toward some kind of maintenance. 

    May you happily see another 15 years, and this time with no more setbacks. 

    Tru

  • jjaj133
    jjaj133 Member Posts: 867 Member
    edited September 2017 #4
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    jajmom said:

    You are an inspiration

    Hello jjaj133,

    I do not have any advice for you regarding maintenance chemo, but I wanted to address your post.

    I just want you to know how much of an inspiration your story is. Boy, you have been through it all and you're still taking life for all it has to give! 15 years stage 4 I'm sure hasn't been a walk in the park, you have been through a lot. I pop over on this board every now and again to see how folks are doing. This time around I'm spending my time on the Anal board as that is what my most recent issue is, I was diagnosed in January 2017. I am also a long term survivor of non-hodgkins lymphoma, having had a bowel resection and radiation with 1 year of chemo. back in my younger days! (36 yrs ago!)

    A very dear friend of mine has just been diagnosed with rectal cancer and she has not been staged yet. She is getting her first PET scan this week. She does have lymph node involvement and she will need a permanent ostomy and reconstruction of her vaginal wall when she has surgery following her first 5 weeks of daily chemo and radiation. (they have already removed the bulk of her tumor) She is scared but very positive, I have encouraged her to join this wonderful place for its wealth of information and comforting advice. I will be telling her about your battle and your amazing resiliancy!

    I understand your remark regarding losing too many friends. Sometimes I feel that since I have had to deal with this (twice now) my friends and family should be immune! It broke my heart to find out that another friend has been diagnosed, two women friends from church have lost their battles already this year.

    Please consider sticking around here on the forum again, your story and experience mean so much. There are new folks everyday joining this site, facing cancer for the first time, and its always good to find an encouraging attitude and testimony like yours! As you enter this new phase of treatment, maybe it will be theraputic to share again with others.

    But thank you, we all need ecouragement regardless of what monster we are facing!

    Chris

    BTW, my friend and I are both in PA :)

    Thank you

    Jajmom, thank you for the aweet reply. I am sorry about your friend and waht you have been through. But you will be a tremendous help to her.

     I have to update my story so people know  that living with state 4 is possible.  My oncologist said my cancer was annoying,  it just wont go away. lol.

  • jjaj133
    jjaj133 Member Posts: 867 Member
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    Trubrit said:

    Hello, and welcome back

    You certainly have travelled a rough road, but it is still impressive to be stage IV and so many years out. 

    I too can't address the maintenance chemo, as my Onc decided against it after my liver surgery. So far, so good for me. 

    With so many recurrences, I think I would lean toward some kind of maintenance. 

    May you happily see another 15 years, and this time with no more setbacks. 

    Tru

    Thank you

    Thank you for the sweet reply, I am going to give it my best shot and see what happens. I have remineded myself that this is under my control and have to give it my all, one day at a time.

    Again, thank you, your support means a lot.

  • wolfen
    wolfen Member Posts: 1,324 Member
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    Smiling Face

    Judy,

    Just so happy to see your smiing face again, but dang sorry the beast is still chasing you. You have been on "My Friends" list for many years. Don't be a stranger. Your story is very inspiring. I don't post much, but still lurk nearby.

    Wolfen

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
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    We intensify oral chemo

    We intensify oral 5FU derived chemo through milder adjuncts, patly based on bloodwork predictively (e.g. high CA199 marker needs cimetidine), partly based on results.  It's work at first, but paid off with years of cancer control and higher quality of life.

  • ron50
    ron50 Member Posts: 1,723 Member
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    G'day JJ

    Welcome back. Your cancer certainly has been annoying but you have dealt with it . may you continue to deal with it. You never know when the next big breakthru in treatment will happen. I have had no recurrence in tweny years but it is always there in the back of my mind. Last scope was in April. I had four polyps removed , the largest 11mm , they got them just in time. Hugs JJ keep hanging in, Ron.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited September 2017 #9
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    You all give me hope with my

    You all give me hope with my stage four and limited chemo and no surgery options. My onc still figures I have a good ten to twelve years. I read an article today about a woman like me who has been given three years and she's about in the same boat I am. I'm wondering if I should try to contact her and offer some hope or send her here. She's just 42 or around there and has kids.

    I hate the idea that she has no hope. She talked about what she's doing with this amount of time she has left and it's really sad.

    Jan