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Tomorrow is a big day---UPDATE disappointing

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Comments

  • traci43
    traci43 Member Posts: 773
    lisa42 said:

    Traci
    Hi Traci,

    I'm sorry you had disappointing news confirmed from Dr. Lowy. Dr. Lowy was my surgeon when I had my liver resection in May '08. I really liked him and loved how he spent so much time with me each appointment.
    I do want to point something out, however. Dr. Lowy is a surgeon- surgeons usually only think in terms of surgery or not- they are not going to be someone to recommend other types of procedures. I would still check into the stereotactic radiation that they do at Moores/UCSD and also check out cyberknife. There is a cyberknife center in Vista in north county and another in San Diego. It wouldn't hurt to contact a center and send them a copy of your latest scans and see what they think. Also, look into the nanoknife that Buzzard just mentioned. He mentioned it to me also & I am going to look further into it after I see what my situation is (scan tomorrow, results Friday).
    I did google "nanoknife locations" and found a list of the places that do nanoknife in the country. The only location in California that does nanoknife according to this list is at UCI (Univ of Irvine, in Orange County).
    I actually sent an email inquiry about it a couple of days ago to them, but have not received a reply yet.
    The plus of doing something like radiation, cyberknife, or nanoknife (electricity, not radiation) is that you could do it without having to stop the chemo. For surgery, chemo has to be stopped several weeks before and after surgery.

    Take care and keep searching out options-

    Hugs,
    Lisa

    thanks Lisa & Clift
    I will continue to research other options. I am glad to be starting something, even if it's jsut chemo. There's always the worry that it's growing inside. Someone had suggested a Doc at UCSD/Moore's but I was so devastated by Dr. Lowy's recommendation that I totally forgot to ask about it. I think I'll start this line of inquiry with my medical onc rather than the surgeon. I'll keep you all posted. Thanks, Traci
  • pepebcn
    pepebcn Member Posts: 6,331
    traci43 said:

    I asked about radiation
    Pepe - I asked my HMO surgeon about radiation as mine are in the same general area as yours. He did not want to do it. I was so devastated yesterday that I forgot to ask Dr. Lowy. I've been told that I don't want radiation as it really bothers your rectum. If it could kill the cancer, I'd do anything. I'll ask again about radiation. Thanks, Traci

    Lymph nodes.
    Traci : Knowing as I know my docs, onc,radio oncologist ,and surgeon lm sure they would avoid me the radio if they wouldn't be pretty sure that lymph nodes can be irradiated successfully ,actually they have explained to me lots of successful stories.This is just to treat the lymph mets ,so may be l had not explained it properly , but you know that this is a condition to be operated of any other organ!
    I would suggest an app.with a radio oncologist !
    Hugs!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    Opinion
    It's hard when you have an opinion about something and then the doctor you see has a different one. Guess you just have to be your own advocate. Hoping that whatever you decide, it's the right decision that you can be happy with. Good luck and will be thinking of you. And please don't give up, you have much to live for. Just remind yourself of that beautiful picture that you have showing us all how happy you are.

    Kim
  • lisa42
    lisa42 Member Posts: 3,625
    traci43 said:

    thanks Lisa & Clift
    I will continue to research other options. I am glad to be starting something, even if it's jsut chemo. There's always the worry that it's growing inside. Someone had suggested a Doc at UCSD/Moore's but I was so devastated by Dr. Lowy's recommendation that I totally forgot to ask about it. I think I'll start this line of inquiry with my medical onc rather than the surgeon. I'll keep you all posted. Thanks, Traci

    Dr. Fanta
    Traci,

    Although my regular onc is not at UCSD, I have consulted a few times with Dr. Fanta at UCSD. My regular onc up in Vista consults with him regularly about me & Dr. Fanta is nice enough to keep that communication going even though I'm not a paying patient to him (my insurance allows me to consult w/ someone outside of my main network once a year). I had an appt set up w/ him a few months back and insurance denied it. I was ready to pay cash for it, but Dr. Fanta called me the evening before and said we could talk about it over the phone. He spent a good 1/2 hr on the phone w/ me that evening all for no payment. I have a friend who goes to him regularly and he had recommended the radiation onc there to her. This friend loves the radiation onc (who, by the way, travels to Encinitas in north county at the San Diego Cancer Center a couple of times a week- so it would save you some miles there). I think his name might be Dr. Lawson. Do follow up with that, even once you've started on the chemo.

    Hugs,
    Lisa
  • mom_2_3
    mom_2_3 Member Posts: 952
    Traci
    I am sorry that you didn't get the news that you wanted to hear. I know that that is very hard. I have no practical advice for you other than to continue on to another opinion if possible.

    I know I have mentioned it before but the father of one of our best friend's was diagnosed with Stage IV colon cancer many years ago. The cancer went from his colon right to the nodes in his neck and chest. He had one of the neck nodes biopsied to confirm the diagnosis. At the time the doctors refused to operate on the colon as they told him it wasn't necessary and that he needed to be treated for the systemic disease. Long story short is that he did 6 months FOLFOX/Avastin (which was new at the time) and the nodes all disappeared. None were removed surgically. He then had his colon surgery. This past April marked his 6 year NED.

    You can do this. Chemo sucks, no one can really say otherwise but definitely look into alternative methods to use concurrently. Please advise your doctor, however, if your plans include any kind of supplements.

    Good thoughts and prayers to you,
    Amy
  • traci43
    traci43 Member Posts: 773
    lisa42 said:

    Dr. Fanta
    Traci,

    Although my regular onc is not at UCSD, I have consulted a few times with Dr. Fanta at UCSD. My regular onc up in Vista consults with him regularly about me & Dr. Fanta is nice enough to keep that communication going even though I'm not a paying patient to him (my insurance allows me to consult w/ someone outside of my main network once a year). I had an appt set up w/ him a few months back and insurance denied it. I was ready to pay cash for it, but Dr. Fanta called me the evening before and said we could talk about it over the phone. He spent a good 1/2 hr on the phone w/ me that evening all for no payment. I have a friend who goes to him regularly and he had recommended the radiation onc there to her. This friend loves the radiation onc (who, by the way, travels to Encinitas in north county at the San Diego Cancer Center a couple of times a week- so it would save you some miles there). I think his name might be Dr. Lawson. Do follow up with that, even once you've started on the chemo.

    Hugs,
    Lisa

    thanks Lisa
    I did ask my medical onc to refer me to a radiation onc, the first step. If I don't like what I hear there, I will suggest the Dr. at UCSD. I'm willing to pay out of pocket for a consult if my HMO won't pay. I'm not givcing up this easil. Thanks, traci
  • traci43
    traci43 Member Posts: 773
    mom_2_3 said:

    Traci
    I am sorry that you didn't get the news that you wanted to hear. I know that that is very hard. I have no practical advice for you other than to continue on to another opinion if possible.

    I know I have mentioned it before but the father of one of our best friend's was diagnosed with Stage IV colon cancer many years ago. The cancer went from his colon right to the nodes in his neck and chest. He had one of the neck nodes biopsied to confirm the diagnosis. At the time the doctors refused to operate on the colon as they told him it wasn't necessary and that he needed to be treated for the systemic disease. Long story short is that he did 6 months FOLFOX/Avastin (which was new at the time) and the nodes all disappeared. None were removed surgically. He then had his colon surgery. This past April marked his 6 year NED.

    You can do this. Chemo sucks, no one can really say otherwise but definitely look into alternative methods to use concurrently. Please advise your doctor, however, if your plans include any kind of supplements.

    Good thoughts and prayers to you,
    Amy

    thanks Amy
    I'm really hoping that the chemo does knock out the lymph nodes so the can do something about the 1 tumor. FOLFOX no longer works for me so it's on to XELIRI. Hopefully, the inirocetan will knock the cancer out. Traci
  • pepebcn
    pepebcn Member Posts: 6,331
    traci43 said:

    thanks Amy
    I'm really hoping that the chemo does knock out the lymph nodes so the can do something about the 1 tumor. FOLFOX no longer works for me so it's on to XELIRI. Hopefully, the inirocetan will knock the cancer out. Traci

    I was in folfiri avastin .
    Which nearly the same as yours, and it worked very very well! .
    I'm sure will works with you too!
    Hugs!
  • Nana b
    Nana b Member Posts: 3,030
    pepebcn said:

    I was in folfiri avastin .
    Which nearly the same as yours, and it worked very very well! .
    I'm sure will works with you too!
    Hugs!

    Bummer
    Just letting you know that I am thinking about you...hope it works out for you.
  • Buckwirth
    Buckwirth Member Posts: 1,258
    traci43 said:

    I asked about radiation
    Pepe - I asked my HMO surgeon about radiation as mine are in the same general area as yours. He did not want to do it. I was so devastated yesterday that I forgot to ask Dr. Lowy. I've been told that I don't want radiation as it really bothers your rectum. If it could kill the cancer, I'd do anything. I'll ask again about radiation. Thanks, Traci

    Radiation
    I have stage IV rectal, wit no organ mets. Currently in radiation, the first four weeks were uneventful, but this last week took the pain to new levels, but even that is limited to bowel movements. I am surprised your HMO doc feels that way...
  • pepebcn
    pepebcn Member Posts: 6,331
    Buckwirth said:

    Radiation
    I have stage IV rectal, wit no organ mets. Currently in radiation, the first four weeks were uneventful, but this last week took the pain to new levels, but even that is limited to bowel movements. I am surprised your HMO doc feels that way...

    What you mean as new levels Buck?
    Cheers!
  • dorookie
    dorookie Member Posts: 1,731
    *HUGS*
    Just wanted to let you know I continue to hold you in my prayers, I am not on here as much, but for sure wanted to let you know I was thinking of you. I am awaiting my results on Tuesday, I have been clar for over a year now, and pray that continues.

    Stay strong, keep your faith, and live...

    God Bless
    HUGS
    Beth
  • traci43
    traci43 Member Posts: 773
    Buckwirth said:

    Radiation
    I have stage IV rectal, wit no organ mets. Currently in radiation, the first four weeks were uneventful, but this last week took the pain to new levels, but even that is limited to bowel movements. I am surprised your HMO doc feels that way...

    buck
    Not sure if it's the way my onc feels, or the radiation oncs at my HMO. My surgeon said the same thing. Still my medical onc is all for the referral and trying to find something that works. If radiation is a possibility I'll be wanting to hear from folks like you and pepe who have had radiation. Thanks, Traci
  • traci43
    traci43 Member Posts: 773
    dorookie said:

    *HUGS*
    Just wanted to let you know I continue to hold you in my prayers, I am not on here as much, but for sure wanted to let you know I was thinking of you. I am awaiting my results on Tuesday, I have been clar for over a year now, and pray that continues.

    Stay strong, keep your faith, and live...

    God Bless
    HUGS
    Beth

    fingers crossed!
    Beth - Lots of prayers and good wishes for a wonderful report! Take care, Traci
  • pepebcn
    pepebcn Member Posts: 6,331
    dorookie said:

    *HUGS*
    Just wanted to let you know I continue to hold you in my prayers, I am not on here as much, but for sure wanted to let you know I was thinking of you. I am awaiting my results on Tuesday, I have been clar for over a year now, and pray that continues.

    Stay strong, keep your faith, and live...

    God Bless
    HUGS
    Beth

    good luck Beth !
    I'm praying for a clear scan and good results!
    Hugs.
  • AnneCan
    AnneCan Member Posts: 3,673
    dorookie said:

    *HUGS*
    Just wanted to let you know I continue to hold you in my prayers, I am not on here as much, but for sure wanted to let you know I was thinking of you. I am awaiting my results on Tuesday, I have been clar for over a year now, and pray that continues.

    Stay strong, keep your faith, and live...

    God Bless
    HUGS
    Beth

    Good luck Beth!
    May your "clear" run continue always.
  • Buckwirth
    Buckwirth Member Posts: 1,258
    pepebcn said:

    What you mean as new levels Buck?
    Cheers!

    Radiation
    Bowel movements are excruciating, having to pass through an internal sunburn is not pleasant. It takes me most of the day now to recover.
  • traci43
    traci43 Member Posts: 773
    Buckwirth said:

    Radiation
    Bowel movements are excruciating, having to pass through an internal sunburn is not pleasant. It takes me most of the day now to recover.

    Yikes!
    That's awful Buck, but I guess if it gets rid of the cancer and heals it will be worth it. Sending out cool soothing vibes for you right now. Traci