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3 options left for me

bigman4christ's picture
bigman4christ
Posts: 87
Joined: Oct 2012

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

Chelsea71
Posts: 1170
Joined: Sep 2012

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

annalexandria's picture
annalexandria
Posts: 2297
Joined: Oct 2011

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

geotina's picture
geotina
Posts: 2069
Joined: Oct 2009

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

 

 

LivinginNH's picture
LivinginNH
Posts: 1330
Joined: Apr 2010

 

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

bigman4christ's picture
bigman4christ
Posts: 87
Joined: Oct 2012

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

 

jen2012
Posts: 1245
Joined: Aug 2012

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
Posts: 49
Joined: Apr 2010

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
Posts: 1832
Joined: Jan 2007

 

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

 

jen2012
Posts: 1245
Joined: Aug 2012

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?

annalexandria's picture
annalexandria
Posts: 2297
Joined: Oct 2011

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's picture
bigman4christ
Posts: 87
Joined: Oct 2012

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
Posts: 1832
Joined: Jan 2007

 

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's picture
annalexandria
Posts: 2297
Joined: Oct 2011

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.

 

Annabelle41415's picture
Annabelle41415
Posts: 4361
Joined: Feb 2009

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's picture
steveandnat
Posts: 887
Joined: Sep 2011

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 

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

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

lp1964's picture
lp1964
Posts: 902
Joined: Jun 2013

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

PatchAdams
Posts: 272
Joined: Nov 2011

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

 

Bee bee
Posts: 27
Joined: Jul 2013

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
Posts: 308
Joined: Mar 2012

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

jasminsaba
Posts: 149
Joined: Jul 2011

Zach, I hope you'll have peace with whatever you decide to do ... I just wanted you to know that I am thinking about you and your wife - and praying for you both.

manwithnoname
Posts: 400
Joined: Jun 2012

Get more Opinions!

Coley's fluid, check out Dr.Marc's blog here; http://marcdu4.wordpress.com

Methylglyoxal; http://www.ncbi.nlm.nih.gov/pubmed/18533369   PM me for the protocol.

DCA + ALA + IV vit C some people have had success with MCRC and these.

Keto/low carb diet;  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3267662/

 

All of the above combined.

Apart from the Coley's treatment none of these will hurt like chemo!

Just spent a month in a Ronald McDonald house, the sign on our door said "never never ever give up"

Gavin63
Posts: 98
Joined: Aug 2013

Hi Zach,

So sad to hear this. I am new in this Journey. But I feel that you should give a little more time for the Chemo to work. If it doesn't work, then think of other options & I agree with what John says.

You are so young & don't ever give up. Have faith. Miracles do happen. Our prayers are with you.

Gavin 

hippiechicks's picture
hippiechicks
Posts: 363
Joined: Sep 2012

I also agree with maybe giving things a little more time before that big of a decision.  

However, you are the only one who can make the right decision for your particular situation and how you are feeling.  Chemo is no picnic, but they give us 12 cycles for a reason ... I wanted to give up both times around tx 3, then 6, then 9 .. and fortunately my docs pushed me through.  

I am glad they did and every day off I am feeling a bit better, and know I gave it my all.  

I also agree with the alternatives and am researching TCM now that I have done the western.  I believe in hitting it from all avenues.  

Lastly, have you heard of the tests being talked about on this forum regarding testing your particular tumor to see what chemo's will work and which ones won't?  It seems very very interesting, and may be something for you to check out. It is known as Tumor Molecular Profiling.

My best to you and yours.  

smokeyjoe
Posts: 1428
Joined: Feb 2011

Zach.....I haven't been on this board much either, wow a lot has been going on in the past couple of weeks.   Which chemo.'s have you been on so far???   If you've gone though all the standard chemo's you may qualify for Stivarga, there are programms Bayer has to give it to you on a compassionate basis.   Perhaps you could talk to your oncologist about it.    I'm into my 3rd month of Stivarga, provided by Bayer ..... 4 pills per day,   I have not experienced any bad side effects.   While on the pill it raises my blood pressure and I have to take some blood presssure meds, but on the blood pressure meds it's fine.   I have not experienced any of the nasty chemo. side effects that I got with infusions.    I do not know if it's controlling my cancer yet, as I have scans next week to see.    But seriously I would ask about this .... on Stivarga I've been feeling really well the past couple of months.    Everyone is different on this drug,  others I know of are having some issues with hand foot syndrome etc. so your experience may be different from mine.     

jen2012
Posts: 1245
Joined: Aug 2012

How are you Zach?

herdizziness's picture
herdizziness
Posts: 3479
Joined: Apr 2010

I just wanted to mention that all chemo's aren't alike, you may try a different chemo and find it's a lot easier then the one you were on.  My "favorite" so far has been Irenotican and Erbitux, very easy chemo's for me although I had lost my hair.  

As for trials, the one you might try might be the one that works for you.  I know when all chemo's stop working for me I will attempt a trial, not in the belief that it will "cure" me, but in the hope that my going through the trial may help others in the end, the people that do the trials are my personal hero's, because without them my own life would have ended a lot sooner if they hadn't gone through the drug trials in order to try and help themselves or others, finding chemo's and chemo mixes that have extended many of our lives.

I'm hoping a different chemo will help you out a lot.  My heart goes out to you, these type of decisions are never easy.

Winter Marie

renw's picture
renw
Posts: 282
Joined: Jan 2013

I have been turned down for surgery at least 4 times, but ran into a doctor doing ALPPS in Europe. he found a 7% section of my liver  in the left lobe that appears cancer free next to an artery that he feels confident that he can work with and my surgery is in 10 days. My liver is almost entirely cancer now with less than 15% left, and I am starting to turn yellow from liver failure. I have lung mets as well.

Again an option that turned up when I thought I had none. Thank god for a fourth second opinion. If the procedure goes well, within 2 months I should end up with a fully regenerated liver, hopefully cancer free, which will buy me time to deal with the rest.

jen2012
Posts: 1245
Joined: Aug 2012

Good luck Ren!  I wish you luck with the procedure and look forward to you telling us they got it all! 

Zach - I'm thinking of you everyday, hoping you are feeling well and can come back and update us and let us know how we could help you.

hippiechicks's picture
hippiechicks
Posts: 363
Joined: Sep 2012

Ditto to both Ren and Zack!! 

Wishing you both well!

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Zach, I wish you peace with whatever decisions you make... Love and Peace and Hugs!!

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Zach...this is a hard place to be in...go with what you feel is best for you.  You have had a lot of good advice.

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