MRI scan yesterday,, Good news and bad news

Sue_2015
Sue_2015 Member Posts: 19
in Colorectal Cancer #1

Hi everybody, hope everyone is doing well, or as well as can be expected since we are here because we have or had Colon Cancer!
 

My update:
I had an MRI scan yesterday to find out if that Y-90 (SIRT) procedure (done on Nov 24, 2015) worked.  There's good news and bad news:   The original 7.7 cm liver tumor in the upper right lobe of liver (original diagnosis Feb 2015) is now 4.7 cm, so that's the good news.  The bad news is that the scan shows multiple NEW 1 cm and smaller tumors "elsewhere" in my liver, as well as a "suspicious lung nodule."  

They are going to schedule a CT scan to check the lung "nodule."  And they'll forward the reports, hopefully, to the liver surgeon whom I consulted with last September.  He's the one who said the tumor was inoperable due to it's size and location involving the Vena Cava.  I'm not sure how small the tumor has to be before he'll feel comfortable doing a resection.  Can't wait for my next consult with all these specialists at the Univ. of Penn in Philadelphia.  I suppose I still have the original tumor in my ascending colon, but the MRI didn't mention it.  Probably need a PET scan for that?  or another colonoscopy?

Meanwhile, more bad news...there's a new insert, that came with this month's Capecitabine pills, which gives me great pause....
Among the 4 pages that tell you to report all side effects to your Onc, such as ,yadda yadda,   on page 1 it mentions the DPD deficiency.  If a person has this enzyme deficiency or even a partial deficiency, Capecitabine (Xeloda and 5FU ) does not work effectively and in fact is possibly DEADLY.  OMG ! I googled it and read about the deaths (there are links to this horror from years ago and recently...there are website's and forums...)  

The test for the enzyme deficiency is "not normally ordered" because the fatal side effects are rare, like 1 or 2%  TELL THAT to the loved ones of those 10 or more in a thousand people who died every year.  Not many blood work lab facilities can test for this.  It has to be sent out to one of the few labs in the country who perform the test etc.  I called my Onc here in Delaware (whom I've been with ever since the Pennsylvania Onc recommended them and said my treatment would be coordinated, etc.)  She and her entire office of Oncology specialists, including the "Specialty Tier 4 drugs" (the Xeloda pills)  did NOT KNOW ABOUT IT...HAD NEVER HEARD of a DPD deficiency! (hmmm....)  I read her the few sentences on my insert that came from CVS Caremark Specialty mail-order pharmacy.  They said they'd look into it.  They called me back today and said I should probably stop the drug, until I have a new blood draw and they'll send it out for testing. They should test everyone who is about to have 5FU or Xeloda or Capecitabine!       Sorry this is so long,

Best wishes to all,

Sue

 

Comments

  • DaveHereInFlorida
    DaveHereInFlorida Member Posts: 48
    #2
    Im so sorry to hear of your

    Im so sorry to hear of your plight. You will deal with this whole cancer journey as time progresses. Dont know what i would have done without a healthy personal relationship with the Lord and strength i get from the Bible--i would have developed ulcers from anxiety, lack of hope ,  and depression.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #3
    Seems a Pet scan would be in

    Seems a Pet scan would be in order, reducing the big liver tumor sounds like the priority, but it would be good to know what else was active. Sorry the chemo is giving you trouble, I wonder if they can ablate the small stuff after SIRT [I had to read up on the procedure]. Hoping for the best, Sue, and that you're okay to restart the Capecitabine..................................Dave

  • Cazz
    Cazz Member Posts: 106
    #4
    MRI

    Hi Sue, I had to have the enzyme deficiency test done quite early on, I can't quite remember why, and it came back negative, as everyone expected.  It really is rare, although my doc had no problem ordering the test.

    I'm sorry that you have more liver lesions, but my understanding is that the spheres can only attack the tumors that the docs tell them to as seen on the scan and if yours has shrunk then the spheres were successful.  I have the same situation, the spheres killed off my three biggest liver tumors, but of course did nothing for the lung, lymph or elsewhere ones.  I have heard that you can have the spheres administered more than once, but the docs may choose not to if new, tiny ones are popping up.  Ah, where is that magic systemic pill that we all need - no side effects, finds and destroys cancer cells absolutely everywhere in the body!

    Good luck with your new tests.

    Carol

  • Sue_2015
    Sue_2015 Member Posts: 19
    #5
    Thanks everyone for your replies.

    I'm having a biopsy of that suspicious lung nodule on th 24th.  But they say it could take 7 to 10 days till we get the results.

    Meanwhile, my Onc told me to say off Xeloda pills.  She's saying that since I developed toxicity to all the chemo treatments so far, and that since I have NEW mets, that nothing is working :(   She says I should start Lonsurf (TAS 102) but wants to wait until seeing the lung nodule biopsy.  When I asked a question about Lonsurf she became sort of defensive and said that if I didn't want Lonsurf that maybe I could go back and try FOLFIRI since it's been 6 months off it.  I'm more confused than ever now.

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