i need my friends advice please..

tammy41
tammy41 Member Posts: 48
edited March 2014 in Colorectal Cancer #1
i found out in march of 07 that i had colon cancer with mets to the liver. same year i had colon surgery and then liver resection. then they put me on folfox and avastin .. then i was 6 months ned. after that 2 small spots showed up in my lung so they put me on cpt 11 and erbatux.and the spots stayed the same. so i went to have the wedge surgery but they did not do it because they found 4 spots had come back on the liver. so for the last 7 months i was in a phase 2 study didnt work i got 2 more spots on the lung[now that makes 4]so then they put me on a phase i study and i just went to have my ct scan last mon and they found that everything is stable but that i have a blood clot in my good lung. so i cant be in the study anymore and they put me on comidine and i had to go to the dr everyday this week for a shot to thin my blood.i am going to meet with my dr on tues and he already said something about another phase 1 study.when i bring up the ciber knife or oblation he just skips over it. has anyone had this done when you had cancer in more then one organ? im not sure i want to do another study.. also folfox and avastin worked really well for me has anyone after a couple years gone back to and old treatment? just really confused. thinking about calling sloans in ny . right now i go to mass general and i live in nh so ny is not that far away.. any input would be very helpful thank you all for being here.

Comments

  • tammy41
    tammy41 Member Posts: 48
    #2
    and one more thing i have to
    and one more thing i have to go in tomorrow morning the ct scan showed somthing on the bottom of my spine so i need to have a mri...does it ever end
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #3
    Tammy
    Tammy,
    You have been through a lot. I don't have answers for you but want you to know I am thinking about you and hoping someone in the group who has experience in this area can help. I'm sure you in good hands in Boston and I know people in this group have found good docs in NY.
    Best to you.
    Aloha,
    Kathleen
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #4
    Tammy :(
    Hi Tammy

    The way I understand it is if things are in the lungs as well as the liver, they won't operate until the liver is clear - the theory apparently is that until the liver is cleared up more spots could come out that were removed from the lung.

    Not being a doctor, I do not understand this reasoning - I would think get it out of my lungs and I'll take my chances if it spreads from the liver back to the lung.

    As far as treatments go, I've heard CyberKnife can now be done on the lungs and RFA apparently would be an option too - although if you were a candidate for surgery prior to the new spots appearing, that would look to still the best choice for removal.

    The question I would ask is why are we waiting on the lungs when we could operate now and take those spots out - and then monitor the lung for precaution while we continue to treat the liver.

    I would think they could re-introduce your old chemo regimen and if effects were not working, could switch to another type - you have really been through alot of things with the clinical studies and whatnot...

    I'm sorry I don't have more to add to this, but would at least pose that question to the onc above - it can't hurt anything to ask - I know he's talking around the issue, but press him for an answer - and you could always 2nd opinion against what his reasoning is as well - that would make you feel better and in some control.

    I'm following you and sending best wishes and positive thoughts your way...I hope things can turn around for you this year.

    -Craig
  • Julie 44
    Julie 44 Member Posts: 476 Member
    #5
    Sundanceh said:

    Tammy :(
    Hi Tammy

    The way I understand it is if things are in the lungs as well as the liver, they won't operate until the liver is clear - the theory apparently is that until the liver is cleared up more spots could come out that were removed from the lung.

    Not being a doctor, I do not understand this reasoning - I would think get it out of my lungs and I'll take my chances if it spreads from the liver back to the lung.

    As far as treatments go, I've heard CyberKnife can now be done on the lungs and RFA apparently would be an option too - although if you were a candidate for surgery prior to the new spots appearing, that would look to still the best choice for removal.

    The question I would ask is why are we waiting on the lungs when we could operate now and take those spots out - and then monitor the lung for precaution while we continue to treat the liver.

    I would think they could re-introduce your old chemo regimen and if effects were not working, could switch to another type - you have really been through alot of things with the clinical studies and whatnot...

    I'm sorry I don't have more to add to this, but would at least pose that question to the onc above - it can't hurt anything to ask - I know he's talking around the issue, but press him for an answer - and you could always 2nd opinion against what his reasoning is as well - that would make you feel better and in some control.

    I'm following you and sending best wishes and positive thoughts your way...I hope things can turn around for you this year.

    -Craig

    I would go
    Tammy,
    I went to Sloan in NYC for a second opinion...I like them very much..I went cause after being 7 months NED my cancer came back to my liver...I saw Dr. Michael D'Angelica...He is great..Very pleasent and he took his time with me and explained everything to us..He is a liver specailist there and he gave me lots of hope where other doctors didn't.....I really think you should go for a second opinion...It can only give you peace of mind..Good luck and keep us updated......JULIE
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #6
    Praying
    I'm sorry that I don't have answers for you, but I'll be praying that the right course of action will present itself to you, and that you will have beautiful results.

    *hugs*
    Gail
  • tammy41
    tammy41 Member Posts: 48
    #7
    tootsie1 said:

    Praying
    I'm sorry that I don't have answers for you, but I'll be praying that the right course of action will present itself to you, and that you will have beautiful results.

    *hugs*
    Gail

    thank you
    thanks everyone i will let you know what the doctor says on tues..
  • fringetree
    fringetree Member Posts: 65
    #8
    tammy41 said:

    thank you
    thanks everyone i will let you know what the doctor says on tues..

    good luck at SK! Just FYI,
    good luck at SK! Just FYI, there is a Cyberknife at Boston Medical Center, so that may be an option, too.
  • sfmarie
    sfmarie Member Posts: 602
    #9
    From what I have learned
    If you have spots in more than one place, then they fear the cancer is spreading systemically. Treating the lungs via Cyberknife would be ok for awhile, but that it would eventually spread since there is microscopic disease. However, i agree with Craig. Why not let you give it a try. It just may work out in the end. Now, I too would get a second opinion. Perhaps a true liver surgeon can resect again and then they can treat the lung. You are in my prayers. Marie
  • novena
    novena Member Posts: 1
    #10
    tammy41 said:

    and one more thing i have to
    and one more thing i have to go in tomorrow morning the ct scan showed somthing on the bottom of my spine so i need to have a mri...does it ever end

    Tammy hope is still alive!
    I had cancer all over. I was having 3-5 seizures daily from brain cancer. I had one month the Dr said. I didn't think I would last that long. I didn't want to live even that long. Then a friend came over and introduced me to alkaline water (Kangen water). I started drinking the water which made my body alkaline. I started feeling better within days. I am 120 days past the 30 days death sentence. I have gained 15 pounds. Thirty days after I sarted drinking the water my scan showed the cancer had not grown and had actually receeded. Today I'm cancer free. I haven't had a seizure for two months. You can write me at noforbes@msn.com. Novena

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