Damn this menace!!!

JKendall
JKendall Member Posts: 186
edited March 2014 in Colorectal Cancer #1
This has been the second worst day of my life, only outdone by the day my wife (Jerri) was originally diagnosed with Stage IV (ovarian mets and a few lymph nodes) back on October 27, 2004.

We met with Jerri's oncologist today, and the cancer is back. Damn it all! I hate to have to post this.

Jerri has new tumors on her liver, and on the omentum and peroteneum (if that's spelled right I'll be shocked). Surgery doesn't sound like a viable option. Radiation is out because the area is too large. The standard treatment of Avastin, 5FU and Irinotecan (Folfiri--right?) is one option.

The oncologist is strongly suggesting that we go to MD Anderson Cancer Center in Houston. We live just outside of Dallas.

Jerri asked me to check with all of you and see if there is someone who has battled Stage IV and been through treatment at MD Anderson. Jerri really wants to talk to real person; she's not comfortable doing the postings or email. I know a few of you have mentioned MD Anderson in the past.

Please, please, please, let me know as quickly as possible if we can make arrangements to speak by phone. Send me an email at this site and we can work out details.

Thanks. Jimmy

Comments

  • terril
    terril Member Posts: 296
    #2
    My prayers and thoughts are with you and your wife. I have heard for years that MD is one of the best. I would check out this hospital! I am currently on the Folfiri regiment in St. Louis. I had mets to my ovaries. Everything resected. It came back 22 months later to my pelvic wall. Never give up!! I know it is a shock when we receive news of a recurrence. We just have to go after the beast and kill it. Bless you all! Terri
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #3
    terril said:

    My prayers and thoughts are with you and your wife. I have heard for years that MD is one of the best. I would check out this hospital! I am currently on the Folfiri regiment in St. Louis. I had mets to my ovaries. Everything resected. It came back 22 months later to my pelvic wall. Never give up!! I know it is a shock when we receive news of a recurrence. We just have to go after the beast and kill it. Bless you all! Terri

    Hi Jimmy and Jerri(huggs to yah gal)...so sorry you have had to suffer more bad news mate. Dig in hard Jimmy, you know we are all here pulling for you. I know you said to me.."see you in Austin"...well mate, I truly hope you can and we can all gather round to support you and Jerri face to face. I can't help you with her treatment but Jen and I wish you both the very best.
    Jimmy....a rainbow is coming for Jerri. Tell her to close her eyes and imagine a rainbow...then follow it to the end. There is love there from the both of us!
    Ross and Jen
  • CAMaura
    CAMaura Member Posts: 719 Member
    #4
    Hey Jimmy, Don't have any MD Anderson answers for you...just wishing both of you good thoughts. So very sorry to hear about anything new for Jerri. Now, gonna be bold here...Would you also think of some hefty alternative therapy?...remember Lisa P. - really great things are possible. Hang in there and know only good wishes coming your way - Maura
  • JADot
    JADot Member Posts: 709 Member
    #5
    Hi Jimmy and Jerri:

    I am so sorry to hear the news. Sorry I can't help with MD Anderson or the Folfiri regimen, but I would encourage you to get 2 separate opinions. As highly regarded MD Anderson is, it's not always for everyone. Lance Armstrong picked a hospital in Indiana instead. So, having two or more opinions is your best bet at getting to the bottom of things.

    Best of luck and lot of healing vibes to you both!

    JADot
  • spongebob
    spongebob Member Posts: 2,565 Member
    #6
    Damn, Jimmy -

    I cannot tell you how upset I am at learning this news. No help from me re: MDA. Know that you and Jerri are in my thoughts and prayers.

    - SB
  • jerseysue
    jerseysue Member Posts: 624 Member
    #7
    Sorry I haven't been to MD Anderson but I wanted to say stay strong! This hit home for me this morning and I cried so hard. I'm also stage IV and because I feel ok today doesn't mean that tommorrow will be the same story. I have to remember to live each day and sometimes I forget that (bitching about the little things). I'm so sorry that Jerri has another fight ahead of her but it's not an impossible fight. My thoughts and pray are with you both.
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #8
    Jimmy,

    I don't know what to say, but I am sending a great big hug. My thoughts are with you and your wife during this very difficult time.

    As for MDA I think that Jana and Kerry both have been there, maybe they can help you through this.

    I will be thinking of you and your wife.

    Moe
  • deneenb
    deneenb Member Posts: 130
    #9
    Jimmy,

    I can't help with information about MD Anderson because my we are in NY and have only gone to Sloan Kettering and NY Oncology/Hematology. However, my Dad had mets to all of the same places that Jerri has them. He was on the folfox treatment for 6 months and was NED for 6 more months after treatment ended. When he had a recurrence there were more spots than previously and they were larger. He has been on CPT-11 & Erbitux since August and everything is gone except one small spot on the liver. He is now on a reduced, maintenance schedule of the 2 drugs and being scanned every 6 weeks for the next few months. We have also done some supplements the whole time which I think have probably helped. One of them is Maitake-d Fraction. This was recommended by an oncologist at Sloan-Kettering. I will be praying for both you and Jerri.

    Best Wishes,
    Deneen
  • joanneire
    joanneire Member Posts: 75 Member
    #10
    Dear Jimmy

    Please let yourself feel sad, worried, angry etc now and then try to focus again and regroup and continue on.

    It's the most awful, horrible, nasty disease in the world and no positive spin can change that fact. That said, suffers are "lucky" to be living in 2006 as there really is so much progress being made. Best of luck with MD- no doubt it's one of the best in the world.

    I'll be thinking and praying for you both.

    Happy St Patrick's Day from Dublin!

    Jo
  • RunnerZ
    RunnerZ Member Posts: 185
    #11
    Jimmy,
    I can offer no help on the MD Anderson Center, although its reputation is first rate. I am sorry that you and your wife have to endure this. Keep strong one day at a time and make sure to take care of yourself too. remember to eat, sleep (at least a little), and find a few minutes each day of peace. It is SO hard to do regular life during these times, but your wife will need you in top fighting condition for the next stretch of life. My best to both of you and a speical prayer for your wife.
  • kerry
    kerry Member Posts: 1,313 Member
    #12
    Jimmy,

    I sent you my phone number via email - call me.

    Kerry
  • jana11
    jana11 Member Posts: 705
    #13
    I sent you a note with all my numbers - if you don't get it... write me.

    I am here and want to try to help you. Hope to speak to you soon. jana
  • KathiM
    KathiM Member Posts: 8,028 Member
    #14
    Jimmy, I'm the newbie here, so everyone else has more knowlege than me. BUT, my colorectal ca was very strange, so at a conference, my surgeon held a small tumor board. Included were guys from MD Anderson. I agree with everyone, top notch place.
    I have just reached 1 year survivor mark, first colonoscopy to be April. I'm so sorry for the bad news. But as I read all of the responses here, I realize what a great tumor board is here. My prayers are with you and Jerri, saying that you both can find the strength to battle this monster and win!
    Kathi
  • JKendall
    JKendall Member Posts: 186
    #15
    KathiM said:

    Jimmy, I'm the newbie here, so everyone else has more knowlege than me. BUT, my colorectal ca was very strange, so at a conference, my surgeon held a small tumor board. Included were guys from MD Anderson. I agree with everyone, top notch place.
    I have just reached 1 year survivor mark, first colonoscopy to be April. I'm so sorry for the bad news. But as I read all of the responses here, I realize what a great tumor board is here. My prayers are with you and Jerri, saying that you both can find the strength to battle this monster and win!
    Kathi

    Thanks to all of you for your help and encouragement--what a group you are!!!

    Kerry and Jana...we'll be calling you. We've been rounding up a few stray medical records.

    Thanks again and everyone take care. Jimmy
  • MUGGINS
    MUGGINS Member Posts: 35
    #16
    Hi Jimmy,
    My friend has the same mets as your wife less the lymph nodes. She still has one spot that they can't get rid of by chemo and is considering surgery. She did send all of her info to MDA to see what they had to say. They said the protocol she in currently on is no diffent then they would approach it. I do know they have an excellent reputation. I will keep you and your wife in my prayers.
    Anne
  • oneagleswings
    oneagleswings Member Posts: 425 Member
    #17
    Hi Jimmy:
    You and Jerri are in my prayers- can't help re md anderson as we are in Canada but my husband is currently on folfiri plus avastin (since November)for liver and lung mets and is so far classified as "stable disease"..he has never been NED since his mets were found on his first check-up after adjuvant treatment..
    I know how scary all this is as a caregiver- feel free to email me..and I hope all goes well for you both.
    Bev
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #18
    Jimmy -

    My thoughts and prayers are with you and Jerri. I can't help with MD Anderson. I know they have a great rep and I lived in Houston for several years (where they had a really great reputation). I wish you both the best. It is probably at least worthwhile to consult with them. I know Jana and Kerry will give you good and more specific advice.

    All the best, Betsy
  • Kanort
    Kanort Member Posts: 1,272 Member
    #19
    Dearest Jimmy,

    My heart broke when I read your message.

    If you will send me your home address I will send Jerri a healing bag. Mine never leaves my side and I want one to be with Jerri as well. If you will add your phone number I will call and talk to Jerri... not with MD Anderson info, but to send my love and support.

    Love,

    Kay
  • taraHK
    taraHK Member Posts: 1,952 Member
    #20
    I can't offer practical assistance re MD Anderson or FOLFIRI. I understand MDA is outstanding. But I do want to say that I was diagnosed with a recurrence about one year ago. It is a horrible experience. But, I climbed back on that rollercoaster and did what needed to be done. I am now cancer-free. Sending prayers and best wishes to you both.

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