3 options left for me

Hey eveyone, it has been a long time since i have written, or even well enough to write to you.  I meet with my Dr. today to go over my options since i kind of jumped the gun and had a CT scan done while i was in the hospital for pain.  The results came back and they were not to good, basically everything is still growing even while im on chemo.  so that is never good ew to hear.  so the 3 options he gave me were to finish off the chemo and see if i was on it long enough to have worked.  which by the way i was on it for a month, but apperently i need to be on it for at least 2 month to see if it is working or not. the 2nd option i got was to go to Seattle Care Alliance and see if there is any experemental treatments out there that i would be willing to try. and the last option is to stop chemo all together.  As of right know i am leaning stopping my chemo treatment and just go about my day to day activities as normal, but knowing the my cancer will spread faster and not knowing how fast means not knowing how long i have left to live.  this is a hard because i know that i will most likely die within the year, but my quality of life will be better because i wont have all this poison running though my body all the time and i will be able to enjoy what time i do have with my family.

thanks for listening to me Zach

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Comments

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    You're at the crossroad we

    You're at the crossroad we all fear.  Not an easy decision.  Will be thinking of you.  Please let us know what you decide.  We will support you whichever route you take.

     

    Chelsea

  • geotina
    geotina Member Posts: 2,111
    Zach:

    Ummm....tough choices indeed.  Well you asked, so here goes:

    1.  Stay on the chemo, give it another month or two.  You had the scan a little early and chemo needs time to be effective.

    2.  I'm not a fan of experimental unless you are out of all options.

    3.  Follow your heart. Only you will know what  is best for you.

    Hugs - Tina

     

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Zach - I am so sorry to read

    Zach - I am so sorry to read this post.   I know you've had a tough time, but you are a young guy and still pretty early in the fight.  I hope you'll consider a second opinion.   You haven't had surgery have you?   Please give us more information on what they've tried for chemo - I know you've done Xeloda and Avastin - have they tried Folfiri??   Please give more info, so others who have been in the fight longer can help you make a decision.  

    You are in my thoughts and prayers.

    If you go to Seattle, I think you should take AA up on her offer!! 

  • Happyhar
    Happyhar Member Posts: 49
    Prayers--Zach

    I read you answer to my inquiry on Xolenda before I saw your update on how you are doing. So sorry to hear about what is going on. This insideous disease seems to hit good people the hardest. May God comfort and guide you.

  • John23
    John23 Member Posts: 2,122
    Options….

     

    Good grief man, there are so many options for you to try….. Chemo isn’t the only way to fight cancer, you should really try to understand that!

     

    Read some “profiles” and poke around this site to see what others have used in place of chemicals and radiation, you may be surprised at the remarkable longevity of those that have chosen other methods.

     

    Good luck, and best wishes,

     

    John

     

  • LivinginNH
    LivinginNH Member Posts: 1,456
    geotina said:

    Zach:

    Ummm....tough choices indeed.  Well you asked, so here goes:

    1.  Stay on the chemo, give it another month or two.  You had the scan a little early and chemo needs time to be effective.

    2.  I'm not a fan of experimental unless you are out of all options.

    3.  Follow your heart. Only you will know what  is best for you.

    Hugs - Tina

     

     

     
    Hi Zach,
    I agree with Tina,

     

    Hi Zach,

    I agree with Tina, I would personally give chemo at least another month to see if it starts to shrink the tumors.  If at that point it isn't working, then you'll need to make some very tough decisions.  I'm so sorry that you're going through all of this, wish it were better news for you and your family.

    Hugs,

    Cynthia

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Treatment

    Giving the treatment a couple more months and then a rescan would be a first option, but like you said the decision has to be yours and yours alone.  It's got to be a very scary place to be.  May God help you in this decision.

    Kim

  • steveandnat
    steveandnat Member Posts: 886
    This is so hard

    I hate that we have make such decisions.  I to had to make a similar decision.  There was one chemo i hadnt tried so im doing it now. If the scans arent good there it will be try to find  trail or just enjoythe rest of the days.im not to hot on the trials so will have to do the other. Its very hard because like everyone im not ready.  I pray we make the right decisions.  Let me know.                 Jeff     I too had 

  • lp1964
    lp1964 Member Posts: 1,239 Member
    Dear Zach,

    You know yourself the best and you will make the decision that's the best for you. 

    At the same time I agree with the others about continuing the chemo a little longer and maybe get other opinion from other oncologists.

    I wish you the wisdom and the strength to carry on and will be thinking about you, sending you supporting thoughts and prayers. It may not be the way we like it, but after all it will be good.

    Laz

  • jen2012
    jen2012 Member Posts: 1,607 Member
    John23 said:

    Options….

     

    Good grief man, there are so many options for you to try….. Chemo isn’t the only way to fight cancer, you should really try to understand that!

     

    Read some “profiles” and poke around this site to see what others have used in place of chemicals and radiation, you may be surprised at the remarkable longevity of those that have chosen other methods.

     

    Good luck, and best wishes,

     

    John

     

    John - I too hope Zach will

    John - I too hope Zach will look around and find some things to try, but  the problem with the alternative - TCM and otherwise is they cost money. i don't know Zach's situation, but I would guess being diagnosed so shortly after getting married - things may be tight.   And just feeling crappy and overwhelmed makes things more difficult.  My husband was about Zach's age when he was diagnosed with cancer the first time and we put all of our trust into the doctors - didn't second guess anything.  Zach - second guess!  I wish we asked more questions, did more research, got a 2nd opinion.

    Zach- what can we do to help you?

  • johnnybegood
    johnnybegood Member Posts: 1,117

    This is so hard

    I hate that we have make such decisions.  I to had to make a similar decision.  There was one chemo i hadnt tried so im doing it now. If the scans arent good there it will be try to find  trail or just enjoythe rest of the days.im not to hot on the trials so will have to do the other. Its very hard because like everyone im not ready.  I pray we make the right decisions.  Let me know.                 Jeff     I too had 

    hey Zach

    i know how you feel i believe many of us are facing these dicisions and it is so hard to know what to do.all i can say is just follow your heart and He will lead you by the hand.let us know how you are doing when you can...Godbless..johnnybegood

  • PatchAdams
    PatchAdams Member Posts: 271
    Zach

    Since it appears the chemo has not been working, the cancer most probably wouldn't grow faster if you go off. 

    You're a newly wed and if I were you, I'd want my time left to be spent enjoying time with my spouse and friends, not feeling bad from chemo. 

    Several of our colon cancer friends tried experiemental treatments when everything else had failed. Some were very, very ill from the meds.  Some spent much of their last months in the hospital because of side effects of trial drugs that ended up not working for anyone. 

    You're the only one (you and your wife) who can pray this through and make this decision.  I'll pray for the both of you and for God to guide you.  I still believe in miracles, so will keep praying for your healing, too. 

    Patch

     

  • annalexandria
    annalexandria Member Posts: 2,571
    Oh Zach.

    My heart is hurting for you and for your wife.  What a terrible thing for you to have to face.  I don't know what choice I would make in your situation.  I'm trying to remember, how many chemos (and which ones) have you tried?  How bad are the side effects?   I do know that a month is not long in terms of chemo, but I know you haven't been feeling at all well.  I think at the very least I would talk to the people at SCAA.  That's where I got my 2nd opinion.  You could see Dr. Edward Lin there, who is very well known in the realm of colon cancer specialists.  There might be a clinical trial that you could try.  If you do come to Seattle, if there's anything at all I can do to help, please let me know.  I can drive, take you guys to lunch, whatever...I'll pm you my cell, so you can call me if there's any way I can give you and your wife a little support right now.

    This sucks.  I freaking hate cancer.  So incredibly unfair.

    AA

  • annalexandria
    annalexandria Member Posts: 2,571
    jen2012 said:

    John - I too hope Zach will

    John - I too hope Zach will look around and find some things to try, but  the problem with the alternative - TCM and otherwise is they cost money. i don't know Zach's situation, but I would guess being diagnosed so shortly after getting married - things may be tight.   And just feeling crappy and overwhelmed makes things more difficult.  My husband was about Zach's age when he was diagnosed with cancer the first time and we put all of our trust into the doctors - didn't second guess anything.  Zach - second guess!  I wish we asked more questions, did more research, got a 2nd opinion.

    Zach- what can we do to help you?

    Plus Zach is stage 4, with a lot going on cancer-wise.

    I don't think he's been able to have surgery.  I believe you yourself have said, John, that Chinese medicine is slow to work, and is most effective when disease is not advanced.  I think it's helpful to be aware of the specifics of a person's case before making suggestions.  

  • bigman4christ
    bigman4christ Member Posts: 87
    geotina said:

    Zach:

    Ummm....tough choices indeed.  Well you asked, so here goes:

    1.  Stay on the chemo, give it another month or two.  You had the scan a little early and chemo needs time to be effective.

    2.  I'm not a fan of experimental unless you are out of all options.

    3.  Follow your heart. Only you will know what  is best for you.

    Hugs - Tina

     

     

    thoughts

    Thanks for your thoughts on this, and i will defeanently have to think about them all, but i think at the moment my heart is telling me to stop chemo and everything for a bit.  But i am no sure  zach

     

  • bigman4christ
    bigman4christ Member Posts: 87

    Plus Zach is stage 4, with a lot going on cancer-wise.

    I don't think he's been able to have surgery.  I believe you yourself have said, John, that Chinese medicine is slow to work, and is most effective when disease is not advanced.  I think it's helpful to be aware of the specifics of a person's case before making suggestions.  

    annalexandria is correct

    I have not been able to have any kind of surgery for some reason or another.  it is very advanced in my liver and now showing to more spots in my lungs that are growing pretty quickly

    zach

  • John23
    John23 Member Posts: 2,122

    Plus Zach is stage 4, with a lot going on cancer-wise.

    I don't think he's been able to have surgery.  I believe you yourself have said, John, that Chinese medicine is slow to work, and is most effective when disease is not advanced.  I think it's helpful to be aware of the specifics of a person's case before making suggestions.  

    Alternatives….

     

    I had spots in my liver, kidneys, lungs….. 7 out of 28 nodes, and it was assumed that there were more.

     

    My surgical wound did not heal until 9 months after surgery, and the oncologists would not begin chemo unless the surgical wound healed and was no longer infected. Since chemo works better within a month post-op, with two months post-op being the limit, I chose to do Imported Medicinal strength Chinese herbs instead.

     

    Three months into the herbal route, the CT indicated less spots in the lungs and liver and none in the kidney. The six month scan indicated less spots in the liver and lungs. The nine month scan indicates no sign of those spots in the liver or lungs. The only spots in my lungs were the scar tissue I’ve had there since the ‘90s.

     

    The physicians involved had no explanation for the results, except to say I was a very, very lucky individual.

     

    They had no comment when I asked: if I did chemo, would they still say it only due to luck….

     

    Apparently if I did chemo, the credit would have gone to chemo. I did herbs, so it was just simple luck.

     

    Hypocrisy at it’s best. Is that what the “Hippocratic oath” provides?

     

    WOOOO….. It’s all “woooo”

     

    (haha)

     

    My best hopes to all,

     

    John

     

  • annalexandria
    annalexandria Member Posts: 2,571
    John23 said:

    Alternatives….

     

    I had spots in my liver, kidneys, lungs….. 7 out of 28 nodes, and it was assumed that there were more.

     

    My surgical wound did not heal until 9 months after surgery, and the oncologists would not begin chemo unless the surgical wound healed and was no longer infected. Since chemo works better within a month post-op, with two months post-op being the limit, I chose to do Imported Medicinal strength Chinese herbs instead.

     

    Three months into the herbal route, the CT indicated less spots in the lungs and liver and none in the kidney. The six month scan indicated less spots in the liver and lungs. The nine month scan indicates no sign of those spots in the liver or lungs. The only spots in my lungs were the scar tissue I’ve had there since the ‘90s.

     

    The physicians involved had no explanation for the results, except to say I was a very, very lucky individual.

     

    They had no comment when I asked: if I did chemo, would they still say it only due to luck….

     

    Apparently if I did chemo, the credit would have gone to chemo. I did herbs, so it was just simple luck.

     

    Hypocrisy at it’s best. Is that what the “Hippocratic oath” provides?

     

    WOOOO….. It’s all “woooo”

     

    (haha)

     

    My best hopes to all,

     

    John

     

    John, why don't you help Zach with this route?

    Don't tell him to just root around or whatever for the info...see if you can find him a reputable Chinese doctor in the Seattle area, see what the costs would be (do you have contacts? maybe use them to see if there's someone who can offer pro bono work?), etc.   Then PM him the info for him to follow up if he wants.

    I really don't feel that hijacking THIS of all threads with your really kind of condescending comments to be at all ok.  I realize you're trying to be helpful in your own way, but take a minute to really consider Zach's situation, and then try to see if there is some way for you to be helpful in a kind and realistic fashion.

     

  • Bee bee
    Bee bee Member Posts: 27
    Listen to yourself

    Reading your post, and reading in between the lines, it seems you may be ready to stop Chemo and you should follow your heart if that's what it's telling you. Personally, i feel quality of life is as important as quantity. whatever you decide will be the right choice for you. My best wishes.

  • Luckygirl2
    Luckygirl2 Member Posts: 308
    saddened to hear

    Chemo needs time to work but in the end it is what is in your heart that will help you make this decision that none of us should have to make.  My thoughts and prayers go out to you and your family, your faith will help you as well.

     

    Deb