I need advise

pilarica
pilarica Member Posts: 44 Member
edited April 2015 in Colorectal Cancer #1

Hello dear friends!!! I hope everybody is doing as well as they can Smile !!

 

I have reached a point in my treatment that I will have to make some changes and I would like to pick your brains and hear from your experiences........

 

So here is a summary of what is going on.

Diagnosed with stage IV CRC with mets to liver November 2013, starte chemo right away, the Dr.s at that time said that I was not a candidate for surgery. 

Did FOLFOX for 8 rounds tumors shrunk so they put me on Avastin and 5 FU..... for another 8 rounds and went back to FOLFOX because the tumor on my sigmoid had had activity. This time I developed an allergy to Oxaliplatin so they had to do the chemo very well medicated steroids and all the rest. So after the 8 rounds the Dr. decided that surgery would be helpful.

January 2015 they took my primary tumor (size of a greapfruit)  and my sigmoid colon, everything went well.  Out of the 19 lymph nodes only 1 came positive. So they said 6 week of recovery and then we will re-evaluate.

March we did a MRI and the mets in the liver had had some activiy so they put me on FOLFOX again. I have had 3 rounds and I have been extremely miserable the side effects are brutal...... 2 to 3 days vomiting.... very tired, head ache, neuropathy etc. So the oncologist said tomorrow they will only infuse me with avastin adn 5 FU.... we will see....We will do an MRI on the 30 and take it from there, she thinks we should go for a liver embolization and she said after that we will see.

I have also been seeing for the last month an Integrative Oncologist and he thinks that I shouldn't do the embolition yet.... he said that I should keep that resourse for later...... he gave me a lot of supplements which I have been taking,  he also said that he would put me on Xeloda + Avasitin as a maintence treatment. So it would be Xeloda for 1 week, rest the other and avastin every 3 weeks.

I don't know what to do !!  Should I do the embolization? I have 3 tumors around 2cms in the liver and many many little ones that they can't measure. They said 20+ of the little ones.

My gut says go with what the integrative Dr. says.....but hey I don't know if the other treatment would be better..... It is so confusing and on top I found out that i will be a grandmother for the first time this coming October so now I am really excited to stay around for some time.

 

Sorry for the length of the post, all the best to all

Pilar

 

 

 

 

Comments

  • gfpiv
    gfpiv Member Posts: 59 Member
    #2
    Choices

    Hi Pilar,

    I too had numerous/uncountable liver mets, in my case I was lucky enough that 12 FOLFOX txs shrunk them by 90+%, and then the hepatic pump (HAI) along with systemic FOLFIRI just about knocked them out completely.  I don't want to overly push it - but I'm guessing that you have at least heard of HAI, and determined that it's not something you either want to, or can pursue?  If that's the case, chemoemboliation works on the same principle - delivering concentrated chemo to the hepatic artery which mainly feeds liver tumors.  I don't have much knowledge of emobolization, but I am pretty sure it's just a one-time (or several time) injection, whereas HAI feeds chemo over time.

    In any case, you do have tough choices to make.  But I'll throw in my two cents since you asked.  Given the innumerable liver mets, your doctors have probably told you that you are incurable.  However, being a normal human being, I assume you are still thinking/hoping there may be a chance for a cure, or at least long term survival?  If you're at a point where you don't see a realistic chance of cure, and you are sick and tired of all the treatment, you may indeed want to go with something a little less aggressive.  However, it seems like you are not at that point yet?  

    Honestly, I am no doctor, but from my research I think you get the vast majority of Oxaliplatin benefit from the first 6 or 8 txs.  After that, it tends to become less effective, and the risk of permanent neuropathy gets much worse.  Sometimes you can go back to it much later (e.g 2 yrs), but most oncs prefer to wait quite awhile before they do, and often that's as a last resort.  Anyway, given your side effects, it seems like FOLFOX should be off the table completely.

    I don't see any FOLFIRI (i.e. Irinotecan) in your tx history, is there a reason for that?  Often that's as effective as FOLFOX, and is a standard first or second line treatment.  As for Xeloda, frankly if your tumors grew on 5-FU and Avastin, I can't see any reason why Xeloda and Avastin would slow them at all - 5FU and Xeloda are essentially the same thing.  

    I don't think there's any reason why you can't add some integrative medicine into WHATEVER you decide to do - unless it's something your onc feels may interfere with another treatment.  

    Anyway, to get to the point, in your situation I would probably want to go somewhat aggressive, to give you a chance, however tiny, of getting to a cure or longer term survival.  That being the case, I'd start with some integrative medicine stuff - personally I'd do vitamin D supplements, and add whatever exercise you can handle...both of those seem relatively non-controversial.  Then maybe add a few more things that show some science-based evidence of helping colon cancer patients (I have a list, and others have their thoughts, but I'll spare you here.)  But honestly, I'd be careful about pinning too much hope on reduction in tumors on integrative medicine alone.  As far as chemo - again, I'm not sure why they don't do FOLFIRI, so that's a question to ask(?).  But if you 'failed' 5-FU and Avastin, then I personally wouldn't be optimistic about Xeloda and Avastin...at least not at the moment.  And personally, on the 'staying aggressive' front...I'd probably push for HAI (if it were an option available to you), or chemoembolization - possibly in conjunction with systemic FOLFIRI.  At this stage of the game, I'd worry a bit about not being aggresive enough, and perhaps regretting it later if things got too out of control to be able to go back to more aggressive options later.  Then again, you and your doctors have to come up with a plan that will work for you, and only you can make that (informed) decision.  

    Best of luck in your treatment, whatever you choose to do!

    -Chip

     

     

     

     

     

  • NewHere
    NewHere Member Posts: 1,427 Member
    #3
    First Off

    Congrats on the pending grandchild :)  Wonderful to hear.  

    I am still early to this all and other probably have more thoughts and experience, but figured I would put a couple of things out there.

    One thing to see if the MRI coming up shows any change in your favor, perhaps the IO and what you are doing may change the situation for you.  If not, try to get a good handle on what the situation is in terms of specifics. Is there time to work with the what the IO is suggesting.  In other words does taking the more aggressive approach ASAP increase the chances of a positive outcome and there is no benefit by waiting?  I am not against intergative care (in fact I am looking into it) but I tend to err to going with the more aggresive approach right now for myself.  I already kick myself for not getting screened and perhaps missing all of this, so that maybe in play for me.  If my initial scan was not so "scary" and confirmed by the colonscopy in terms of size and involvement, I may have gone with a different approach.  But the hand I was dealt, in my mind, was no time to try alternatives before going surgery and chemo.  And though scans are generally clear, there are a few things on my lungs and liver that are being monitored right now.  

    Did either Doctor give you reasons for doing/not doing things now?  Grill them on the questions to get answers.  Risks associated with the embolition, efficacy based on timing, can it be done more than once, mets/growth chances based on holding off.   I have found the best approach when not getting answers that are straightforward with doctors starts with "I get each patient is different and there are a ton of factors, but answer me with respect to odds/outcomes."

    On the Ox, I was also told something similar to what gfpiv stated.  That 9 treaments with OX are basically really no less effective than 12 and the increasing risk of neuropathy is high in comparison to the benefits after 9.  My Onc limits it to 9 based on the that.  I trust him so far and I do trust where I am going (Sloan).  I did not get into details about various cycles, so if I need more than this round of 12 and if things change with times off.

    Looking forward to you posting photos in October :)

  • Steve444
    Steve444 Member Posts: 105 Member
    #4
    Too many choices

    I'm sorry that I don't have an answer and even more sorry that you're at this crossroads.

    I've also been given a bunch of options and am choosing SIRT to try to blast out my liver tumors (PET scan showed 5, MRI/CTA yesterday showed >10 small ones).  The only experience I have is that Folfox + Avastin, followed by 5FU + Avastin, followed by just Avastin kept me good for a while, but on Avastin alone my liver tumors are coming back.  I'm really not looking forward to side effects  of Folfox again or Folfiri or Xeloda, so I'm opting for the radiation spheres as side effects are minimal.  I've read on average it adds another year, so I'll see what it does and if it comes back again will have another decision to make.

    I hope whatever you choose gets you going in the right direction, and hey, if it doesn't then there's always something else to try.  Congrats on getting to see a grandchild born.  I hope you have many years to watch him/her grow.  That's something I'll miss out on, but I hear it's life changing in a very good way.  

  • pilarica
    pilarica Member Posts: 44 Member
    #5
    Steve444 said:

    Too many choices

    I'm sorry that I don't have an answer and even more sorry that you're at this crossroads.

    I've also been given a bunch of options and am choosing SIRT to try to blast out my liver tumors (PET scan showed 5, MRI/CTA yesterday showed >10 small ones).  The only experience I have is that Folfox + Avastin, followed by 5FU + Avastin, followed by just Avastin kept me good for a while, but on Avastin alone my liver tumors are coming back.  I'm really not looking forward to side effects  of Folfox again or Folfiri or Xeloda, so I'm opting for the radiation spheres as side effects are minimal.  I've read on average it adds another year, so I'll see what it does and if it comes back again will have another decision to make.

    I hope whatever you choose gets you going in the right direction, and hey, if it doesn't then there's always something else to try.  Congrats on getting to see a grandchild born.  I hope you have many years to watch him/her grow.  That's something I'll miss out on, but I hear it's life changing in a very good way.  

    Thanks

    Dear friends:  Thanks for the comments....... I am not on Folfiri, because the Genetic testing came back and my tumors don't respond to irinotecan so we will see. I am having an MRI next week, and meeting with the radiologist and my oncologist to hear what they have to say. 

    Thanks agian, best to all and keep fingers crossed that I will make the right decision !!

    Pilar

  • John23
    John23 Member Posts: 2,122 Member
    #6
    pilarica said:

    Thanks

    Dear friends:  Thanks for the comments....... I am not on Folfiri, because the Genetic testing came back and my tumors don't respond to irinotecan so we will see. I am having an MRI next week, and meeting with the radiologist and my oncologist to hear what they have to say. 

    Thanks agian, best to all and keep fingers crossed that I will make the right decision !!

    Pilar

    You asked for advice to consider ….

     

    My “blog” is here:

    http://csn.cancer.org/node/200668

     

    Best wishes to you!

     

    John23

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