apprehensive about upcoming HIPEC

Mystimom
Mystimom Member Posts: 10
in Colorectal Cancer #1

 

I have just begun Oxaliplatin IV, every three weeks and Xeloda pills daily. So far, my worst side effects have been from the Oxaliplatin. The neuropathy in my hands is terrifying, as I need my dexterity in my hands for my work and passion: designing and constructing clothing. It is also very painful after only one infusion.

I am told i will be undergoing the HIPEC surgery in august. I am not sure I want to do that. It sounds extremely risky and not eneough encouragement coming from the stats regarding recovery and added longevity. A second opinion seems like so much work for me now, but I am considering going to MSK for one, as I live in CT.

In addition, I am not sure I like my oncologist here. He lacks in personality in a way that I cant grasp.

I would love to hear anthing about HIPEC experiences, as well as neuropathy help.

Thank you! 

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    Go to MSK

    I know lots of people who have had HIPEC; MSK does another option there called EPIC, which is done via a belly port after surgery (not heated chemo).  If it is appropriate, that is another option for you.  I had EPIC, and it is generally much better tolerated than HIPEC.  However, of the many people I know who have had HIPEC, lots are fully functional and recover fully within a few months.  Ensure that you have an expert in this treatment for your care; too many hospitals are now "jumping on the HIPEC bandwagon".  For Appendix Cancer, that or EPIC is standard care.  But appendix cancer is very rare, so specialists are few and far between.  MSK has that expertise.  (I have stage 4 appendix cancer; had Surgery and EPIC there in 2007.)

    PM me with questions about MSK.  My surgeon is Dr. Paty.

    Also tell your onc about your side effects with the oxaliplatin; they may have to reduce the dosage.  It's pretty nasty stuff.  (Yes, I had that too, but post-op in my case.)

    Alice

  • Kazenmax
    Kazenmax Member Posts: 463 Member
    #3
    Oxaliplatin

    My first treatment was very tough. My oncologist checked and was able to lower slightly. It was still rough but not as bad. Stay away from folic acid and b-12 as it made side effects worse. Hang in there.

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    edited April 2018 #4
    Neuropathy

    My chemo nurse told me about taking Nature Made vitamin B supplements to help with the neuropathy. This was a God send for me and really helped with the numbness and tingling.

     

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #5
    We are also in Ct

    my husband is the one who is sick. We had a horrible oncologist and switched after 7 years of putting up with him, best decision we ever made. If you are even remotely unsure you should look st others. Honestly I think my husband would have had a better outcome had we switched sooner. That being said he scheduled for surgery at MSK in May going there was also best decision we ever made.  Oxalipla is a tough drug he made it through 8 full dose and one half dose. Once that neuropathy did not go away in between treatments he made them stop. I hope it eases Up for you soon.    

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    A Second Opinion

    You should always seek a second opinion, especially out of your network.  If you ever feel uncomfortable with one of your doctors or just want to question the process or treatment they want to give to you, try to feel the need to go.  BTW, my doctor never listened to my complaints about the oxy and now it's a daily struggle for me dealing with it.  Listen to you and your symptoms first.  Wishing you the best and let us know how it goes.

    Kim

  • ChrisBT
    ChrisBT Member Posts: 3
    #7
    HIPEC

    When the HIPEC was a possible option for me (it is no longer an option), the one thing I learned by asking many questions was to find the Doctors and Hospitals that have the most experience in doing this surgery.   It is too risky a surgery to have it done at a facility which performs the surgery maybe 6 times a year.

    I live in the south and would have gotten the HIPEC at Wake Forest Baptist Hospital, had it been an option.  An oncologist at Ohio State suggested that to me.  

    Best of wishes for you.

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