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Tomorrow is a big day---UPDATE disappointing

traci43
traci43 Member Posts: 773
edited March 2014 in Colorectal Cancer #1
Well it's here. Tomorrow I go to San Diego to consult with Dr. Lowy at UCSD. He will be the tie breaker--surgery then chemo (what I want) or chemo then possibly surgery (what the surgeon wants). This is my second recurrence, my first after HIPEC just over a year ago. Seems like it's still in the abdominal cavity but each scan shows more lymph node involvement, only one tumor though. CEA rising slower than previous recurrance. Scared, worried, wondering what's going to happen.

Still have to go by my HMO and pick up a copy of my last two PET Scans. They were copied but they couldn't find them on Friday. Grrrrr! Will be there at 8 am to hopefully get them or I will have to postpone the appointment which is at 12:30 and a two 1/2 hour drive from home.
*******************************
Update--got the scans and made it to the appointment on time. Dr. Lowy agrees with my surgeon--no surgery, just chemo. I am sooooooo disappointed. I understand why better now, but it still sucks. The rationale is that the cancer has gone to the lymph nodes (specifically illiac lymph nodes) and that means it is systemic and surgery will only remove visable disease. Also surgery suppresses immune system and increase growth factors to heal--both are conducive to cancer growth. So, I will try to be a good girl and take my meds.

I am changing my diet to no sugar, more veggies, less meat and am looking into supplements to help the chemo be more effective and to make my body less hospitable to cancer. I'm disappointed but not willing to give up yet!
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Comments

  • biglaur
    biglaur Member Posts: 72
    Good luck tomorrow.
    You might try and stop in to visit Dr. Arno Mundt...radio-oncologist at Moore's. He's a genius and a very cool guy. Thinks way outside the box and might have another thought as a possible treatment option. Always worth some new input. He did miracles for me. Laurie
  • AnneCan
    AnneCan Member Posts: 3,673
    Traci
    Good luck with the consultation!
  • traci43
    traci43 Member Posts: 773
    biglaur said:

    Good luck tomorrow.
    You might try and stop in to visit Dr. Arno Mundt...radio-oncologist at Moore's. He's a genius and a very cool guy. Thinks way outside the box and might have another thought as a possible treatment option. Always worth some new input. He did miracles for me. Laurie

    thanks
    I'll keep him in mind. My referral is only for Dr. Lowy but I'll ask him. my tumors are very low and radiation is a possibility.
  • plh4gail
    plh4gail Member Posts: 1,238
    Good luck!
    Good luck with your appointment! .....Gail
  • plh4gail
    plh4gail Member Posts: 1,238
    traci43 said:

    thanks
    I'll keep him in mind. My referral is only for Dr. Lowy but I'll ask him. my tumors are very low and radiation is a possibility.

    Traci, I'm very new on here
    Traci, I'm very new on here and I'm also new with my cancer diagnosis. But I am in treatment for colorectal cancer. I don't know if your's is similar to mine, but it sounds like it may be. I did chemo and radiation to shrink my tumor first ( surgeons decision/suggestion) and this gave the surgeon more room to work with for my surgery to remove the tumor. I did have surgery on Oct 8th.

    Gail
  • traci43
    traci43 Member Posts: 773
    plh4gail said:

    Traci, I'm very new on here
    Traci, I'm very new on here and I'm also new with my cancer diagnosis. But I am in treatment for colorectal cancer. I don't know if your's is similar to mine, but it sounds like it may be. I did chemo and radiation to shrink my tumor first ( surgeons decision/suggestion) and this gave the surgeon more room to work with for my surgery to remove the tumor. I did have surgery on Oct 8th.

    Gail

    hmmm
    Gail - Mine is a recurrance and is not on the colon at all. It's a 2 cm tumor very near the rectum with as of last count 3 lymph nodes involved. It seems my two recurrences have both been in the peritonal cavity and not involving in organs, for which I'm thankful. Although, I understand that liver or lung tumors are easier to treat than this.

    I hope your surgery went well and you are doing well. Traci
  • Lori-S
    Lori-S Member Posts: 1,277
    plh4gail said:

    Traci, I'm very new on here
    Traci, I'm very new on here and I'm also new with my cancer diagnosis. But I am in treatment for colorectal cancer. I don't know if your's is similar to mine, but it sounds like it may be. I did chemo and radiation to shrink my tumor first ( surgeons decision/suggestion) and this gave the surgeon more room to work with for my surgery to remove the tumor. I did have surgery on Oct 8th.

    Gail

    Gail
    I just wanted to welcome you to the board.
  • Lori-S
    Lori-S Member Posts: 1,277
    Traci
    I hope that you get those scans and make it down to SD in time. I will be thinking of you and hoping for the best.
  • pepebcn
    pepebcn Member Posts: 6,331
    plh4gail said:

    Good luck!
    Good luck with your appointment! .....Gail

    Tracy, just the best from here!
    Have a big hug!
  • plh4gail
    plh4gail Member Posts: 1,238
    traci43 said:

    hmmm
    Gail - Mine is a recurrance and is not on the colon at all. It's a 2 cm tumor very near the rectum with as of last count 3 lymph nodes involved. It seems my two recurrences have both been in the peritonal cavity and not involving in organs, for which I'm thankful. Although, I understand that liver or lung tumors are easier to treat than this.

    I hope your surgery went well and you are doing well. Traci

    Traci
    Oh I see...well I do wish you the best of luck. Even though I am new with all of this, I feel like I have been through so much. I have so many questions myself, but feel I may have some info for other's. Thought's, well wishes, and prayers are with you!

    Yes, for my surgery, Dr says he got it all. I hate the iliostomy, and I'm very glad it will be reversed soon. I give so much credit to all the ostomates out there!

    Gail
  • plh4gail
    plh4gail Member Posts: 1,238
    Lori-S said:

    Gail
    I just wanted to welcome you to the board.

    Thank you
    Hi and thank you so much! I think this board is going to become a dear friend to me!

    Gail
  • Crow71
    Crow71 Member Posts: 679
    Fellow Hipectite
    Hey Traci - I hope you have a successful day today.
    Let us know how it went when you get a chance.
    Roger
  • KathiM
    KathiM Member Posts: 8,028
    I'm sending big, strong, good vibes to you!
    Please keep us posted!!!!

    Hugs, Kathi
  • AnneCan
    AnneCan Member Posts: 3,673
    Hugs + good vibes to you
    Hugs + good vibes to you today!
  • herdizziness
    herdizziness Member Posts: 3,624
    Finger crossed
    That you get those scans in time and make it to your appointment.
    I wanted to wish you luck, and am thinking about you.
    Winter Marie
  • traci43
    traci43 Member Posts: 773
    bump

    bump
  • Lori-S
    Lori-S Member Posts: 1,277
    Hey Traci
    It's good to hear that you made it to SD on time. I'm sorry that you can't just have your surgery as you wanted. I'm sure that with the lymph node involvement the doctors really want to treat that as effectively as possible. Be a good girl and take your medicine. :)

    I always think that supplementing and eating right is a good thing. Don't worry so much about all sugar as it's the refined processed sugar that seems to be the worse. Our bodies do need sugar ... just not all the white refined sugar that seems to be everywhere. Let us know what you find out in regards to the supplements you take and remember to let the onc know which ones so they help treatment and not hinder it.
  • pepebcn
    pepebcn Member Posts: 6,331
    Lori-S said:

    Hey Traci
    It's good to hear that you made it to SD on time. I'm sorry that you can't just have your surgery as you wanted. I'm sure that with the lymph node involvement the doctors really want to treat that as effectively as possible. Be a good girl and take your medicine. :)

    I always think that supplementing and eating right is a good thing. Don't worry so much about all sugar as it's the refined processed sugar that seems to be the worse. Our bodies do need sugar ... just not all the white refined sugar that seems to be everywhere. Let us know what you find out in regards to the supplements you take and remember to let the onc know which ones so they help treatment and not hinder it.

    Lynph nodes
    I got them affected too , in retroperitoneal area, we are radiating it and once radiated will remove it with surgery, so nobody told me about what you have been told! what about other opinion?
    Have a big hug.
  • LivinginNH
    LivinginNH Member Posts: 1,456
    Hi Traci,
    I can't offer any


    Hi Traci,

    I can't offer any advice, but I just wanted to let you know that my thoughts and prayers are with you. Best wishes always, Cynthia
  • traci43
    traci43 Member Posts: 773
    Crow71 said:

    Fellow Hipectite
    Hey Traci - I hope you have a successful day today.
    Let us know how it went when you get a chance.
    Roger

    fellow HIPECtite
    Cool name. As you can see it didn't go as well as I hoped. I do trust Dr. Lowy and wish I could have had surgery. I hope the chemo does the job this time.

    When did you have HIPEC? How are you doing?
  • traci43
    traci43 Member Posts: 773
    pepebcn said:

    Lynph nodes
    I got them affected too , in retroperitoneal area, we are radiating it and once radiated will remove it with surgery, so nobody told me about what you have been told! what about other opinion?
    Have a big hug.

    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
  • traci43
    traci43 Member Posts: 773

    Hi Traci,
    I can't offer any


    Hi Traci,

    I can't offer any advice, but I just wanted to let you know that my thoughts and prayers are with you. Best wishes always, Cynthia

    thanks
    thanks!
  • traci43
    traci43 Member Posts: 773
    Lori-S said:

    Hey Traci
    It's good to hear that you made it to SD on time. I'm sorry that you can't just have your surgery as you wanted. I'm sure that with the lymph node involvement the doctors really want to treat that as effectively as possible. Be a good girl and take your medicine. :)

    I always think that supplementing and eating right is a good thing. Don't worry so much about all sugar as it's the refined processed sugar that seems to be the worse. Our bodies do need sugar ... just not all the white refined sugar that seems to be everywhere. Let us know what you find out in regards to the supplements you take and remember to let the onc know which ones so they help treatment and not hinder it.

    lori
    Yeah, I'm more concerned about the white sugar, flour, etc. than sugar in fruit. I'll definitely be running the supplements by the board once I her from the Doctor. My appointment is not until November 22. And yes, I will be a big girl and take my medicine starting Friday. It will be XELIRI with Avastin (I think I spelled it right). Not had this before, hope it works. All previous chemo was FOLFOX with and without Avastin.
  • traci43
    traci43 Member Posts: 773
    plh4gail said:

    Traci
    Oh I see...well I do wish you the best of luck. Even though I am new with all of this, I feel like I have been through so much. I have so many questions myself, but feel I may have some info for other's. Thought's, well wishes, and prayers are with you!

    Yes, for my surgery, Dr says he got it all. I hate the iliostomy, and I'm very glad it will be reversed soon. I give so much credit to all the ostomates out there!

    Gail

    Sounds like you are doing well
    Gail - Sounds like you're doing great. Hope the reversal goes well. I was concerned about the possibility of having one if I had had surgery, so that's a small relief to me. Don't be afraid to ask questions or post comments. We all learn from each other. Thanks for speaking up and trying to help. Traci
  • Buzzard
    Buzzard Member Posts: 3,043
    traci43 said:

    thanks
    thanks!

    Once again......I may be chasing rabbits here but it may be
    something to check out...ire nanoknife...for the tumors...electricity induced to the tumors by electrodes slid into the tumor itself and it kills them from the inside out with absolutely no surrounding tissue damage. Not like others that either freeze or burn in which surrounding tissue does take on collateral damage...ire nanoknife does not...I may be bringing this up to often but its another possible option to look into...If your Dr does not like it, then maybe you need to make a call and see if maybe the hospitals that do offer it might want to try what yours has no accessibility to...Its a longshot but not as long as you might think, all they can say is no, and you have already heard that so whats to not gain from it ???

    Love and hope to you and yours, Clift
  • traci43
    traci43 Member Posts: 773
    Buzzard said:

    Once again......I may be chasing rabbits here but it may be
    something to check out...ire nanoknife...for the tumors...electricity induced to the tumors by electrodes slid into the tumor itself and it kills them from the inside out with absolutely no surrounding tissue damage. Not like others that either freeze or burn in which surrounding tissue does take on collateral damage...ire nanoknife does not...I may be bringing this up to often but its another possible option to look into...If your Dr does not like it, then maybe you need to make a call and see if maybe the hospitals that do offer it might want to try what yours has no accessibility to...Its a longshot but not as long as you might think, all they can say is no, and you have already heard that so whats to not gain from it ???

    Love and hope to you and yours, Clift

    that's new to me
    Clift - that's soemthing new. I'll mention it tothe surgeon when I see him. Thanks & take care, Traci
  • Buzzard
    Buzzard Member Posts: 3,043
    traci43 said:

    that's new to me
    Clift - that's soemthing new. I'll mention it tothe surgeon when I see him. Thanks & take care, Traci

    Don't worry if he doesn't agree...
    he may not if its not available to him for you...You may need to take the bull by the horns and make all arrangements for this without consulting him if he says no...remember he is suppose to work for your best interest. Are you happy 100% and trust him then I say great but if you have any doubt all it is is a call.....Love and Hope, Clift
  • AnneCan
    AnneCan Member Posts: 3,673
    Traci
    I am sorry for your disappointment. I am thinking of you.
  • tootsie1
    tootsie1 Member Posts: 5,036
    Sorry
    I'm sorry you didn't get the answer you want, but hopefully the meds will help your situation and enable you to get ahead of the game.

    *hugs*
    Gail
  • lisa42
    lisa42 Member Posts: 3,625
    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