PET/CT Scan Results - Devastating

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califsue
califsue Member Posts: 80
edited March 2014 in Colorectal Cancer #1
I've hesitated to write this bad news, but I am hoping that someone may be able to help with a possible clinical trial. (Not to mention, who else would better understand what I'm going through.)

I got my PET and CT scan results yesterday after doing 10 rounds of Folfiri and Avastin for lung mets and mediastinal lymph node enlargement. Compared to a CT that I had done in August, the lung mets have almost doubled in size and there are "multiple new nodules". I am really scared by how fast things have changed in 2 months. It also showed a possible lesion in my L1 vertebrae. I am having an MRI this week to hopefully rule that out. Although, I am worried about that also, as I have been having back pain around the L1 area.

I could hardly speak yesterday. I felt as if I had the wind knocked out of me. My oncologist said that "he didn't have anything for me" as I had already "failed" folfox. I had 11 treatments of Folfox after my APR surgery and 9 months later, I was diagnosed as stage IV with lung mets.

I know that I need to regroup. Writing this post is a beginning. I also am scheduling an appointment for a second opinion with Dr. Lenz at USC Norris Cancer Center. I know that he doesn't have a magic wand. I really feel beaten down and like I have to get my affairs in order.

Thank you for being there,
Susan
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Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
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    Susan..........
    Maybe a call to Dr Cantrell at Vanderbilt Ingram Cancer Institute....He is self injecting lovastin and interferon and is having great results after being diagnosed with terminal cancer. He if Im not mistaken has taken on some individuals but I don'tthink it has been approved yet. It won't hurt to try and contact them...They have their own website...

    www.VanderbiltIngramCancerInstitute.com
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #3
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    Hi Susan,just want to let
    Hi Susan,just want to let you know you are in my prayers and I hope you can find new and effective options very very soon.Take care.
  • geotina
    geotina Member Posts: 2,111 Member
    #4
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    I'm so sorry
    I'm so sorry to read about your bad news. Don't give up the fight. I don't have anything to offer as we are still new to our fight, just finished chemo, awaiting scans in a week. Don' give up, seek out any options you can and know that all your cyber friends are pulling for you. Take care.
  • GOOFYLADIE
    GOOFYLADIE Member Posts: 232 Member
    #5
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    Hi Susan
    I know that,I know, that I know, that its not time to throw in the towel. You have been doing all the right things. Keep reaching out. I will say having your things in order is what everyone of us should have done everyday of our lives all it takes is crossing the street, one car accident, one train, bus or bike to take our lives. So please don't take cancer as a death sentence, take it as another part of our journey through life to get to the good stuff.

    I know the knews had to be devastating, take a few days to breath and rest and refresh, takes these email addresses when you are feeling better and use them to your advantage. I am sure in few days there will be more post too. Make the calls and keep moving forward, things will look better when forward motion starts taking place and a new plan sets in.

    I am so sorry you have to go thru all this. My heart and my arms are wrapped around you. Make it a Great Day! Goofyladie (Cass)
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
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    Susan
    That's certainly not the best news to hear. Clift (Buzzard) has a very good idea about contacting Dr Cantrell. I've recently read about him and his treatment. You know we are here when you need us.
    Thinking of you
    -phil
  • Nana b
    Nana b Member Posts: 3,030 Member
    #7
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    PhillieG said:

    Susan
    That's certainly not the best news to hear. Clift (Buzzard) has a very good idea about contacting Dr Cantrell. I've recently read about him and his treatment. You know we are here when you need us.
    Thinking of you
    -phil

    Heavy heart!
    You are right, we know what you are enduring; we are holding your hand. Wishing you good news soon.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #8
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    Susan,
    I'm so sorry to hear your news and I completely understand how you must be feeling right now. If I were you, I definitely would contact this doctor from Vanderbilt that Buzzard just mentioned. I've read about the lovastatin and interferon treatments and when I read it I thought that if I ever start to "fail" on the Folfiri I'm on, that I would definitely look into this treatment immediately.
    You are in my prayers and I'm praying for you to still be able to find an effective treatment and for your emotional/mental/spiritual peace even through this time.

    Hugs and blessings to you, my dear-
    Lisa
  • sfmarie
    sfmarie Member Posts: 602
    #9
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    Susan
    I am sooo sorry to hear about your news. That is truly devastating. I think Dr. Lenz is very knowledgeable and also has alot of clinical trials himself for which you may be a candidate. I am the support for my sister who has stage IV dx 03/09 with mets to liver and peritoneum and lymph. Have also had opinions from Stanford and UCLA and Dr. Lowy at USD. PM me if you need more info. YOu are in my prayers!
    Marie
  • butterfly23
    butterfly23 Member Posts: 256
    #10
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    sfmarie said:

    Susan
    I am sooo sorry to hear about your news. That is truly devastating. I think Dr. Lenz is very knowledgeable and also has alot of clinical trials himself for which you may be a candidate. I am the support for my sister who has stage IV dx 03/09 with mets to liver and peritoneum and lymph. Have also had opinions from Stanford and UCLA and Dr. Lowy at USD. PM me if you need more info. YOu are in my prayers!
    Marie

    Hi
    Hi Susan

    I'm sorry to hear of your news. I am also stage 4 with mets to lungs and spine. I just recently found out it is in my lungs and spine. In just a matter of 2 weeks, it was devastating, so unfortunately I kinda know how you feel. i am doing oxyaplatin and avastin reg. every three weeks with xelode. They will not run tests until I do at least 4 treatments. I would get a 2nd opinion, it doesn't hurt to ask! I will keep you in my thoughts!
    Karyn
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #11
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    Susan
    Dear Susan,
    I am so sorry to hear that news. Of course that was shocking. I think seeing Dr. Lenz is a great idea. **** has seen Dr. Lenz and we know he has options for trials. We are holding you in prayer. We are here with you.

    Aloha,
    Kathleen
  • serrana
    serrana Member Posts: 163 Member
    #12
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    devastating opinion
    Dear Susan
    I read your bio and yes you have been thru alot of treatment but
    I can't figure out why your onc would be so negative. There are so many options avalable
    Does he know how to read? Geeeze. Why havent you been on Folfiri? Erbitux? Clinical Trials?

    I was a patient of Dr Lenz ( I am also a stage 1v but have clear scans after 3 years of fighting) I don't see him any more because of the distance to travel. He is up on the very very latest. Call "Roger" at USC and ask for the first available appointment.Dr. Lenz will also answer your emails. He answered my first desperate email at 3 in the morning!!!!!

    What part of California are you in? I am in San Diego and recommend USC, UCSD and UCI I've been treated at all places. At UCI Michael Stamos, MD is the surgeon to see. I like talking to surgeons because they seem to be more active and positive about these things rather than oncologists who are in to chemicals etc.

    Blessings for your search. Do NOT give up. Promise that.
    Serrana
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #13
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    so sorry
    Susan,

    I'm sorry you've had such tough news. It's understandable that you were so stunned on hearing it. As others have said, though, please don't give up. I'm sure there are people on this board who will have lots of wonderful ideas for you.

    I'll be praying for the perfect answer for you, dear.

    *hugs*
    Gail
  • ittapp
    ittapp Member Posts: 383 Member
    #14
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    Susan, I can hear through
    Susan, I can hear through your post how sad you are right now, but tomorrow is another day and another chance to get answers. Please just keep getting opinions, I just finished my third opinion and will keep going. I have read where people had cancer even more involved and still had options and even went Ned. check out the Colon Club and look at the Colandar models, they have some inspirational stories. I will pray for you hard tonight and know that we are all here for you! God Bless You, Patti
  • impactzone
    impactzone Member Posts: 551 Member
    #15
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    BIG prayers coming from
    BIG prayers coming from me...I hope USC offers some ideas... Keep us in the loop

    Chip
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #16
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    I am so sorry you got this
    I am so sorry you got this news. You've been given lots of great advice here - get second opinions - contact the top specialists. Heck, you've already done that on your own, scheduling an appointment with Dr Lenz.

    Hang in there and check out ALL your options. We're all here for you. Please keep us informed if you find a new trial, or just need to rant.
  • califsue
    califsue Member Posts: 80
    #17
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    Buzzard said:

    Susan..........
    Maybe a call to Dr Cantrell at Vanderbilt Ingram Cancer Institute....He is self injecting lovastin and interferon and is having great results after being diagnosed with terminal cancer. He if Im not mistaken has taken on some individuals but I don'tthink it has been approved yet. It won't hurt to try and contact them...They have their own website...

    www.VanderbiltIngramCancerInstitute.com

    Thank you Buzzard
    I am beginning to come out of shock today. I will look at the website and try and reach Dr. Cantrell. I will let everyone know what I find out so that someone else may benefit from the information.

    In gratitude,
    Susan
  • califsue
    califsue Member Posts: 80
    #18
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    butterfly23 said:

    Hi
    Hi Susan

    I'm sorry to hear of your news. I am also stage 4 with mets to lungs and spine. I just recently found out it is in my lungs and spine. In just a matter of 2 weeks, it was devastating, so unfortunately I kinda know how you feel. i am doing oxyaplatin and avastin reg. every three weeks with xelode. They will not run tests until I do at least 4 treatments. I would get a 2nd opinion, it doesn't hurt to ask! I will keep you in my thoughts!
    Karyn

    Hi Karyn
    Hi Karyn,

    I hope that the Folfox + Avastin works for you. How were the mets to your spine diagnosed? I am having an MRI of my spine on Saturday to look for spine mets, especially my L1 vertebrae which lit up on my PET scan. I pray for a successful treatment for you.

    Susan
  • califsue
    califsue Member Posts: 80
    #19
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    serrana said:

    devastating opinion
    Dear Susan
    I read your bio and yes you have been thru alot of treatment but
    I can't figure out why your onc would be so negative. There are so many options avalable
    Does he know how to read? Geeeze. Why havent you been on Folfiri? Erbitux? Clinical Trials?

    I was a patient of Dr Lenz ( I am also a stage 1v but have clear scans after 3 years of fighting) I don't see him any more because of the distance to travel. He is up on the very very latest. Call "Roger" at USC and ask for the first available appointment.Dr. Lenz will also answer your emails. He answered my first desperate email at 3 in the morning!!!!!

    What part of California are you in? I am in San Diego and recommend USC, UCSD and UCI I've been treated at all places. At UCI Michael Stamos, MD is the surgeon to see. I like talking to surgeons because they seem to be more active and positive about these things rather than oncologists who are in to chemicals etc.

    Blessings for your search. Do NOT give up. Promise that.
    Serrana

    I failed Folfox originally and now Folfiri + Avastin
    Hi Serrana,

    Perhaps I wasn't clear in my original post. I have been on Folfiri + Avastin since 6/09 and just found out that I have progression in my lungs. I'm a KRAS mutant, so no Erbitux for me. I'm looking for a clinical trial.

    I live in Orange County. I have been talking to Roger at Dr. Lenz's office and he is trying to fit me in ASAP. I'm concerned about the time factor since my scans last week showed so much progression compared to my scans done 2 months ago.

    What kind of surgeon is Michael Stamos? One of the tumors in my chest wall is pressing against a nerve causing me a lot of pain. I hope to get it debaulked if nothing else. I really don't know right now what I'm doing.

    Thanks for your kind suggestions,
    Susan
  • califsue
    califsue Member Posts: 80
    #20
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    Kathryn_in_MN said:

    I am so sorry you got this
    I am so sorry you got this news. You've been given lots of great advice here - get second opinions - contact the top specialists. Heck, you've already done that on your own, scheduling an appointment with Dr Lenz.

    Hang in there and check out ALL your options. We're all here for you. Please keep us informed if you find a new trial, or just need to rant.

    Thank you all for your responses
    Thank you all for your heartfelt responses. Your kind words and prayers have lifted me up and thank you Cas for putting your arms around me. I live alone and this is so hard to do by yourself. There really are no words to express my gratitude to all of you. I am trying to gather up shreds of hope. You have all helped me do that.

    In gratitude,
    Susan
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #21
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    The wind knocked out of me
    After reading your post it knocked the wind out of me too. I hate this monster called cancer. I want to let you know that I'm thinking of you. Keep us posted. You have a lot of friends here and we're all thinking of you.

    Brooks

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