Stage IV, advanced? Options

Ace13
Ace13 Member Posts: 17
in Colorectal Cancer #1

Hello all,

My fiance has stage IV colon cancer and her tumors have shown continued growth over the past few scans. She has tumors in her liver, lymph node, omentum, and both ovaries. The ovarian tumors are 10-15 cm and cause discomfort and the lymph nodes are causing back pain requiring morphine. A couple weeks ago they removed 3.5 L of ascites fluid from her abdomen. She has also needed a small blood transfusion recently to get her hemaglobin up.

I have been inspried by all your stories and we continue to fight and keep hope. I am pursuing all avenues thanks in part to some of your recommendations. But I am hoping there may be additional suggestions you all might have from your experience that I might have missed on the boards.

Surgery doesn't appear to be an option because of the multiple locations of mets and because our oncologist doesn't believe going off chemo in order to do surgery is a good idea, and actually strongly advised against it except as a last resort. We have contacted Drs. Lenz at USC, as well as mutliple docs here at MDA and one in NYC, and consults with Dr. Lowy at UCSD and also the Mayo Clinic still to come. Any further recommendations or considerations? Is it better to be patient and hold off on surgery?

Surgery seems like a good option if it outweighs the risks so we're also exploring clinical trials. She has been on Folfox, Folfiri, and now Irinotecan with Vectibix (Panatumumab). I've seen many are on Xeloda, so I will ask about that. I'm not sure what other available drugs are good options. Our oncologist has mentioned Lonsurf in the past. So we are waiting to hear from the NIH after they review her records about clinical trials. I have yet to search, but has anyone been through a clinical trial?

Other approaches such as ablation (re-occurred in liver and now two new spots), SIRT, HIPEC have been ruled out because they only affect one tumor and/or require time off from chemo.

Well that was a lot of info...thank you for reading and sharing your advice.

Ace

Comments

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    edited July 2017 #2
    Wow Ace, I'm sorry to hear

    Wow Ace, I'm sorry to hear about what your fiancé is going through. Unfortunately I don't have any advise for this but I do want to wish her the best! 

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    edited July 2017 #3
    Welcome to the blog, Ace.

    Welcome to the blog, Ace. Those are significant sized tumors, so I see why they want to keep the chemo going without interuption. You haven't mentioned if she is responding to any of those treatments, and to what degree? People here have had good results with Xeloda, I haven't read many stories with Lonsurf as the main chemo, but I'm sure some will be along who can tell you about both. My thoughts are with you and your lady.................................Dave

  • Ace13
    Ace13 Member Posts: 17
    #4
    Lily Flower said:

    Wow Ace, I'm sorry to hear

    Wow Ace, I'm sorry to hear about what your fiancé is going through. Unfortunately I don't have any advise for this but I do want to wish her the best! 

    Thanks Lily!

    Thanks Lily!

  • Ace13
    Ace13 Member Posts: 17
    #5
    beaumontdave said:

    Welcome to the blog, Ace.

    Welcome to the blog, Ace. Those are significant sized tumors, so I see why they want to keep the chemo going without interuption. You haven't mentioned if she is responding to any of those treatments, and to what degree? People here have had good results with Xeloda, I haven't read many stories with Lonsurf as the main chemo, but I'm sure some will be along who can tell you about both. My thoughts are with you and your lady.................................Dave

    Thanks Dave, appreciate it. 

    Thanks Dave, appreciate it. 

    She responded very well to folfox but after being on maintenance chemo to get a break from the oxaliplatin, it wasn't effective the second cycle. Folfiri seemed to work (not as well) but after a two month break wasn't effective. Waiting now to complete the first cycle of Irinotecan plus Vectibix hoping to see good results. 

  • Joan M
    Joan M Member Posts: 409 Member
    #6
    Hi Ace, 

    Hi Ace, 

    I was diagnosed at stage 4 in March 2016 and was on the Oxaliplatin and 5FU chemo every 2 weeks for 8 rounds, before going on maintainence chemo of Avastin and Xeloda in July 2016.  My primary tumor disappeared over the course of months and wasnt visible at all on January 2017 scans.  The doctor said my disease was considered "liver dominant" at that point, so I was eligible for targeted procedures to rid my liver of tumors.  I had ablation for liver tumors in left lobe in January 2017, and SIRT for the right lobe in April 2017.  I did not have to stop the Avastin or Xeloda for those procedures. 

    I'm not sure but your fiance may have to wait until she is off the Irinotecan and Vectibix to get those targeted procedures.  I hope she does well on the new medications. 

    Joan 

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