bone mets...

Jnet
Jnet Member Posts: 14
edited March 2014 in Colorectal Cancer #1
Hello all,
I had posted before and ask you guys about liver spot, and I got a lot of response. Thank you. The liver spot was in June when they Ct Scan me, and they said they can't do a biopsy because it was too small. So, I had the "wait and see". They waited 7 months for another CT scan, which I had it this Jan 3rd. The results were "multiple liver spots" now. They are going to do ultrasound for it, to evaluate more. They saw problem in my Vertebrae, and they did bone scan to confirm it, and there was 2 spots that they said it was bone mets. I am so worried. I know someone said in an earlier post that they had bone mets. Can you tell me what did they do and what chemo were you on? or does anyone have any advice? Thank you all. I am 36 yrs old. I live here in Vegas and I don't see my oncologist for another month. Can anyone suggest a doc here if anyone in this site that live here. Thank you. Sorry for the long post.

Comments

  • goldfinch
    goldfinch Member Posts: 735
    #2
    Seems like one month is a long time to wait before seeing your onc. I'd call and get the appt moved up so you can talk possible treatments with him now. I don't have bone mets, so I can't respond to the treatment plan, though I wouldn't be surprised if the chemo options aren't the same as they are for all of us with mets...folfox (5 FU, oxaliplatin and leucovorin), folfiri (5 FU, camptosar and leucovorin), or camptosar and erbitux. Avastin might be added to any of those combos. These are the most common combos.
    I'm in VT, so I can't suggest any onc.
    Call and get your appt moved up so you can get some answers. My prayers are with you.
    Mary
  • chynabear
    chynabear Member Posts: 481 Member
    #3
    goldfinch said:

    Seems like one month is a long time to wait before seeing your onc. I'd call and get the appt moved up so you can talk possible treatments with him now. I don't have bone mets, so I can't respond to the treatment plan, though I wouldn't be surprised if the chemo options aren't the same as they are for all of us with mets...folfox (5 FU, oxaliplatin and leucovorin), folfiri (5 FU, camptosar and leucovorin), or camptosar and erbitux. Avastin might be added to any of those combos. These are the most common combos.
    I'm in VT, so I can't suggest any onc.
    Call and get your appt moved up so you can get some answers. My prayers are with you.
    Mary

    I agree, it sounds like your "wait and see" is a little too much of wait. I would see if you can get treatment and onc visit moved up to an earlier date.

    The person who has bone mets also had/has lung mets. Her name is Jana and I think her board name is Jana11 or something close to that.

    My prayers are with you.

    tricia
  • jana11
    jana11 Member Posts: 705
    #4
    Hi. Yep, I have bone mets... I am also 36years old. I was diagnosed in 2002 with stage 3 rectal cancer... it spread to my lungs first, and then went to the bones at my spine and right hip and ribs. My mets were seen this october - they came while I was on xeloda and avastin. I got a bone scan and started chemo within 1 week, using cpt11, xeloda, avastin, and erbitux. I also get zometa once a month - it is an IV bisphosphonate (like fosamax for osteoporosis) that helps the bone building cells makes stronger bone. (cell are called osteoblasts).

    Since starting this chemo my cea dropped from 140's to 0.6!! Hurray. Another treatment option is IV radiation. It is useful for bone pain only. The problem with the IV radiation is that is can really zap your bone marrow so that other chemo has to wait up to 2 months.

    YOU MUST GET CARE SOONER THAN 1 MONTH!! That is crazy! When I found out about my bone mets I started new treatment that week!! More for peace of mind. AND... waiting 7 months to see about liver mets seems way too long! I wait 2-3 months when things pop up... 7 seems long.

    YOu are young and need aggressive treatment. Get some second opinions and fight for your best treatment. I get all my care in Houston at MDAnderson.

    If you have specific questions please send me a note. I am here. By the way, despite my mets and chemo I still work out 3-5 days per week, and feel good. This is NOT the end... just part of the journey.

    Stay strong. jana
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #5
    Hi Jnet -

    I can't help you with the bone mets, but as Stage IV survivor with liver mets, I have to say that I really think you should be seeing your oncologist much more often (and MUCH sooner than a month from now).

    I am not sure why your doc waited 7 months for a second CT - seems like 3 months would have been a more normal and routinely conservative approach. Assuming your oncologist ordered the second CT, I would think you would see the doc within a few days (I always see mine 2-3 days after scans.) Also, has your doctor ordered PET scans - they can add another layer of truth and help assess the meaning of spots on the liver.

    I urge you to get an appointment with your oncologist ASAP. Just so you know, I had liver mets and was NED (no evidence of disease) after 2 treatments, finished 6 treatments and have been NED for 16.5 months. I have PET and CT scans every 3 months as well as blood-work / CEA and physical exams from oncologist. So, I urge you to be aggressive about getting more medical attention and if you oncologist takes a continued laid back attitude, you might want to find another doctor.

    There is a lot of Stage IV hope to be found on this site, but you do need to be treated.

    Take care - please come back to us - and feel free to email on this site if you want more details of my treatment and history.

    Betsy
  • alta29
    alta29 Member Posts: 435 Member
    #6
    7 months for a 2nd Ct ???? Get another onco....
    When they found the 2 spots on my lymph nodes..they where soooo small that it tokk 2 weeks for my onco to find someone that wanted to do the biopsy..1st time they even pulled from the wrong spot...2nd time...they got it...within a month a was on avastin...
    Take care and God bless
  • AveriRN
    AveriRN Member Posts: 61
    #7
    Hi, I agree with other postings, please get aggressive with your doctors. Just like betsydoglover, I , too , am a st4 colon with liver mets survivor. I cant tell you anything about the bone mets but my prayers are with you.
    I am 35 and my docs are very aggressive with care and I have scans done every 3 mos without hesitation. Stay positive (even when positive seems far away) it is a mind set and will play a big part in how you go through this.

    Averi
  • JADot
    JADot Member Posts: 709 Member
    #8
    Time is life.

    Wait for nothing.

    Call your oncologist tomorrow morning and demand treatment now! If this onc won't do it, change doctors. Not a day should go by when cancer cells are allowed to fester in your body unchallenged.

    Cancer treatment is all about earlier = better! Also, you can start a healthy alkaline diet now to do your part. But by the sound of how it's been spreading, I think you body needs some help from chemistry.

    Good luck to you, and call the doctor in the morning.

    Ying
  • Jnet
    Jnet Member Posts: 14
    #9
    Thank you all for your response. I am looking for another Onc doc now. The one I got right now, is so busy and it's time for me to take control of myself instead of waiting for what he say or will do. Yeah, I need to change my diet too. Again thank you all so much. I am here in this site everyday reading all the posts.
    Jnet

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