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not the news i was looking for!

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

Hey everyone, i went to the Dr. yesterday to find out the results of my second liver biopsy, because the first one came back benign.  so after 3 rounds of Chemo they did another ct scan and found that the liver spots are growing.  So it turns out that the liver spots are actually cancerous and have been mutated tobe more resistant of the chemo.  It was not the good news that we were hopeing for and fractly is making me sad and a little depressed.  to see and have a dr. tell you the prognosis was not good and i shouldnt make any big purchases, to take it month by month was a little sad.  I cant wait untel my normal Onc gets back from vacation! I feel like the little hope i had is slowly fading away.  I know that this was going to be hard but i didnt think it would be so emaotionally hard.  I find my self thinking about things that i would normally never have to think about.  Like how will my family handle my death, is there something more i can do to help relieve the finacial burdon on my wife.  Do i want a child?  do i want to bring a child into this world know that there dad will not be there to grow up with them.  I am sad and having a hard time finding answers to my questions.  sorry my head is spinning with emotions today and i am having a hard time concentrating on anything.

zach

smokeyjoe
Posts: 1428
Joined: Feb 2011

Ugggh, not the news we want to hear Cry     Which chemo. have you had so far.    I asked this very question my last visit,  what if this doesn't work again....they said  "well we have many different chemo combinations we can switch to".       I would wait and have this discussion with your regular oncologist.  

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

Avastin, camptazar, and xeloda.  they are going to take the camptazar off and replace it with oxiplatin (not sure if that is how to spell it or not)  i heard the new drug wont make me feel so sick but will make me cold and tingle on my fingers?  The Dr. seemed like it was pretty important to start chemo again soon to see how i respond to the new drugs.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Wait and talk to your regular oncologist.  I'm pretty sure I have about as bad a stage 4 diagnosis as is possible (multiple mets to LN, lung, liver, and peritoneum), and none of my doctors have talked to me in this manner.  If you have had only 3 rounds of chemo, and with a single regimen, there is no way to know how you might respond to a different regimen.  Please try not to get too down or discouraged until you talk to your oncologist.

 

Tedd

jen2012
Posts: 1195
Joined: Aug 2012

Hey Zach...sorry you guys got this news..but as the others said there are still other chemos to try and its still early. My husband has his 8th treatment coming up which includes oxy. It has not bothered him too much...he does wear gloves almost all the time but hes tolerating it pretty well. Try to not let it get you down and please let us know what your onc says. Hugs to you and your wife. Are you close to any of the cancer centers?

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

We are about 40min away from the one in Seattle, and about 45 min away from the cancer center that i go to.

Chelsea71
Posts: 1170
Joined: Sep 2012

So sorry. Try not to be discouraged. You may feel more positive when you talk to your regular onc. There is still so much to try. A big cancer centre might have better options for you. Try to stay positive. I wish I could help. So young to be dealing with all this crap!

Chelsea

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

This cancer thing is such a roller coaster ride both emotionally and physically.hard not unusual for me to be up one day then down the next.  I've been doing chemo since June 09 and granted it isn't always pleasant but I think of all the events I was around to enjoy with my family and friends. I set short goals and when I make it I feel good. My next goal is celebrating granddaughters first birthday on February 10th. If you and your wife dream of having a baby I would say go for it. I pray for the best to you and your family.  Jeff

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 445
Joined: May 2012

So sorry for your news, but so many people here been told the same thing years ago and are still living. I don't know why Drs say that when things can change with the right chemo combo. Do what you dream of and have that baby - change the chemo and see your regular dr. Things will change.
Sandy :)

annalexandria's picture
annalexandria
Posts: 2200
Joined: Oct 2011

I've been on the receiving end of this myself, finding out that chemo isn't working and things are growing, and it sucks.  But as others have said, there is still more to be done.  Was there a reason they didn't start you on FOLFOX (the traditional starting point for crc tx)?  And what about surgery?  The liver has an amazing ability to regenerate and I've read of other cases where people have had something like 2/3rds of the liver removed.  My experience has been that oncologists may or may not know what is feasible in the surgical realm.  Is there any chance of coming up here to Seattle (where I live) and getting a 2nd opinion?  If you can, I would recommend going to Seattle Cancer Care Alliance...they have many surgeons who specialize in crc and a number of oncologists who focus on crc as well (one, Dr. Lin, was the one I saw for my 2nd opinion-he is using an arthritis drug, Celebrex, with chemo with his patients and getting better outcomes).  Please don't give up yet!  And if you do come up with way, let me know if there's anything I can do to help.  Hang in there, Zach.  You've got a long journey ahead of you and the end of the road is not in sight by any means!  Hugs~Ann Alexandria

PS  If the doc told you the tumors were "chemo resistant", I think that would only refer to the ability of this particular chemo to be effective, not that it would be resistant to ALL chemos.  It often takes trying more than one chemo or chemo combination to find the one that works for you.

 

smokeyjoe
Posts: 1428
Joined: Feb 2011

I tried xeloda,  it didn't work for me.....but infusional  5FU did ..... xeloda is 5FU in pill form...my oncologist said it wasn't as effective as infusions.  

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

Hi smokeyjoe, the Dr. gave me the option of having the 5fu pump but i was not sure how i would be able to stand it in me all the time and i was afraid i would rip it out while i was sleeping because i toss and turn lately.  but i might have to reconsider it for the future.  thanks zach

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

Hey Ann i dont think that i realized that you were close to Seattle to :)  I go to the little cancer building in everett, they are really nice and knowledgable there.  I did get a second opinion from one of the main Dr. at Seattle when i first started, they said that they would do the same thing as my current Dr. had planned so that made us feel good.  I dont know why they didnt start on Folfox but neither of the Dr. that i asked mentioned it.  I dont think that they want to do surgery on my colon because my liver has so many spots on it and is currently not working with me to shrink down in size.  so they didnt want to have any unnecessary strain on my body while i tried to heal from surgery.  they might reconsider it once they find a medication that will work on the liver.  anyway thanks for the encourgment, your northwest friend Smile

PatchAdams
Posts: 272
Joined: Nov 2011

Zach, don't give up yet!  I believe in miracles!

Did you look at the link about multiple liver mets?  If they're all on one lobe, that could be removed. I'd highly suggest you see a liver surgeon before your regular onc returns. 

Remember, Oncs treat with chemo

Surgeons cut.  Surgery can be curative if all tumors can be removed with clear margins.  There is a guy who used to post on www.colonclub.com all the time. His name was Sam T and he had over 50 liver tumors. Sam has a PHD and did a lot of research.  He's NED for 10 or so years now... and hasn't posted in about 10 months.

Also, check out www.beatlivertumors.org   The founder had numerous liver tumors and beat those. She does have residual cancer elsewhere but it's fully controlled.  

I'm praying for you, sir!  Keep giving this to the LORD and fight with all you've got!  

 

God bless,

Patch 

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

Thanks Patch i will look into those sites !

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