My Scan Results

Shayenne
Shayenne Member Posts: 2,342
edited March 2014 in Colorectal Cancer #1
So I saw the doctor today before getting my chemo, and went further in discussing how bad my liver is, and what she said was I have multiple mets, which looks like shards of glass all over the liver, near arteries and vessels, and that's why I'm inoperable, it would be a very high risk surgery, but to not ever lose hope that this could change down the road.

She was talking about putting me on 4 more treatments with the Avastin, Irinotecan and 5fu before taking the Irinotecan which will be better for me, no side effects, and just doing it every 3 weeks, which if something should happen like it spread or something grow, she would throw the Irinotecan back in, but she said the disease has been so stable, and for the past couple months, including gaining some much needed weight, she said I was doing fabulously and looked great, and down the road, why change something that is stablizing, and working beautifully for me, there may be RFA, there may be thermaspheres, but she doesn't like to fix things now that aren't broke, so I feel better and confident with this, and know that with a liver that looks like mine, it usually is inoperable, and she told me she had many patients who have lived many years on maintenance therapy.

So, hopefully down the road, while I am feeling fantastic, something great may pop up, but you never know, I will keep this confident and positive attitude, and will still be living the way I been living.

Hugsss to all!
~Donna
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Comments

  • coloCan
    coloCan Member Posts: 1,944 Member
    I wish I could wave a magic wand
    and cure all of us. Your last sentence is beautiful, making the most of life as you possibly can. With an attitude like that and your inner strength you'll outlaast us all. Hopefully something will pop up to really help you......Steve
  • sfmarie
    sfmarie Member Posts: 602
    Stable
    Is good. I was at a Colon Cancer Alliance Seminar over Holloween at UCSF and there was a 15 year stage IV survivor there! 15 years. He said if it were not for the chemo that is around today, he would not have been there. It still breaks my heart to read that there is nothing that can be done for your liver. Have you talked to a liver surgeon or a interventional radiologist? However, if you are stable, then that is fantastic. You are a great inspiration and I hope you have applied to be a model on the colondar.
    Marie
  • lisa42
    lisa42 Member Posts: 3,625
    my thoughts
    Hi Donna,

    I'm glad your onc was able to explain everything to you. Stable is definitely good!
    My thoughts, however, are that I know I would personally still want to explore more options for making the liver tumors go away, rather than just be satisfied with stable. Having never had this done, I don't remember the name for it, but I would look into the type of chemo that can be fed directly into the liver, I believe with an intrahepatic chemo pump. It seems like, if I'm not mistaken, that Phil mentioned having this done at Mem. Sloan Kettering in NY.
    I don't know enough about it, but am wondering if that might have a more direct effect on shrinking those liver tumors than just the systemic chemo you're getting now. It seems like I remember reading that it's normally used for stubborn liver tumors that don't seem to respond or go away with systemic chemo that's given in the usual way chemo is given.
    I think it would be worth looking into, even when your onc says "don't fix what aren't broke". In my opinion, when you have tumors in your liver, things are "broke". You can always check with another onc or google who does this kind of treatment and inquire with them.
    I'm not wanting to discourage you from feeling good about your scan results, as stable is definitely good, but my lung tumors continue to be stable and I decided that I want to see if I can find a way to make them go away, instead of just living with them (as I'm not a surgical candidate or even a radiation candidate for my lung lesions right now).

    Take care & I'm sending you a PM with a question I have for you on a different subject, so check for that.

    Hugs,
    Lisa
  • TLG320
    TLG320 Member Posts: 167
    Stable IS good
    Marie is absolutely right: stable is good. We have no idea what new kinds of treatments are going to be available down the road. In the meantime, you're feeling good and living life to the fullest, and the treatment that you're on is stabilizing this cancer. Your oncologist seems to be pleased with the treatment and it sounds as though you still have some options down the road with possible RFA or thermaspheres.

    Stay positive and have a very happy Thanksgiving this year!

    Hugsss and love to you, Donna! You are truly an inspiration!

    Tashina
  • dianetavegia
    dianetavegia Member Posts: 1,942
    HI Donna
    I'm glad to hear things are stable but I agree with Lisa. It won't hurt to get another opinion.

    Hey, our minister who is with his wife at MD Anderson 'showed us' the campground where they are staying until mid Dec. It's very nice and a van from the hospital comes all day long picking up and dropping off patients. A guy from our church loaned them his RV so they could afford to go for her tx. Just an idea for you. :o)
  • maglets
    maglets Member Posts: 2,576

    HI Donna
    I'm glad to hear things are stable but I agree with Lisa. It won't hurt to get another opinion.

    Hey, our minister who is with his wife at MD Anderson 'showed us' the campground where they are staying until mid Dec. It's very nice and a van from the hospital comes all day long picking up and dropping off patients. A guy from our church loaned them his RV so they could afford to go for her tx. Just an idea for you. :o)

    stable
    I would take stable Donna...good for now. Wait and see :)

    big hugs

    mags
  • Fight for my love
    Fight for my love Member Posts: 1,522
    Hi Donna,I am sure the
    Hi Donna,I am sure the oncologist wants to have you try something else to see if this is going to shrink the tumors in liver.I think the oncologist is still looking for a way to take care of the tumors until the liver is operative.Hang in there.Stable is good news.Take care.Hugsss.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Hi Chicky :)
    :)

    Will talk to you soon!

    -Craig
  • ittapp
    ittapp Member Posts: 383
    Same boat
    Donna, I am pretty much the same boat as you! chemo, chemo, and more chemo.Inoperable and waiting to see if I get enough shrinkage for other treatments. Just found out my cea levels are on the rise. We are in this together and we just keep fighting (after a good cry of course)I am glad you are getting such good response from the chemo. I pray for you everynight. God Bless, Patti
  • karguy
    karguy Member Posts: 1,020
    I'm glad
    I'm glad your stable,but I would get another opinion.Have a good thanksgiving,and I will be praying for you.
  • usakat
    usakat Member Posts: 610
    You're amazing!
    I love your spirit, Donna! Yes, stable is good, but I must agree with Lisa. Perhaps this is a good time to explore another opinion? There are so many treatment options, and they seem to change with each passing year, that it could never hurt to get a second or even third opinion for folks living through longer term treatment.

    Keep up that positive attitude! Mary Engelbreit said, "If you don't like something change it; if you can't change it, change the way you think about it." You, Donna, are an expert with that sage advice. You are truly inspiring.

    Keeping you in my thoughts and prayers, sending you many blessings for healing, love and happiness.

    Hugs! Katie
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    I can understand your mixed emotions with this news. I agree that stable is good and why fix something that is broken and doing well. My thoughts are with the others in at least trying to get another opinion because it doesn't hurt to get more options available to them if possible. You are such an inspiration on this board with such a positive attitude. I know that things will be better for you. I'm glad that you have more options out there also. You are always in my thoughts and prayers.

    Kim
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    usakat said:

    You're amazing!
    I love your spirit, Donna! Yes, stable is good, but I must agree with Lisa. Perhaps this is a good time to explore another opinion? There are so many treatment options, and they seem to change with each passing year, that it could never hurt to get a second or even third opinion for folks living through longer term treatment.

    Keep up that positive attitude! Mary Engelbreit said, "If you don't like something change it; if you can't change it, change the way you think about it." You, Donna, are an expert with that sage advice. You are truly inspiring.

    Keeping you in my thoughts and prayers, sending you many blessings for healing, love and happiness.

    Hugs! Katie

    Donna..........
    yeah your stable and thats great...but we always want more...and she says your not operable......and I say your not operable "yet"...I want all thats in a sentence being said out loud....she means yet and you mean yet, your not operable "YET"..but you will be, I got faith that you will be operable, and I got a feeling that with your outlook it will be sooner than later...The game face you have on will get you through ..I have utmost confidence in you sweetie............Your Bro...Buzzard
  • mom_2_3
    mom_2_3 Member Posts: 952
    Donna, you are an inspiration
    Donna,

    You are an inspiration to me and others on the board. Keep going with your treatments but I would tend to agree with Lisa that perhaps a second opinion might be in order. I met a woman today that had 33 liver mets at the start of her treatment and is down to 5 by using the HAI pump. Perhaps you could look into that treatment option. If I can help you in any way I am here for you.

    Amy
  • Janet3
    Janet3 Member Posts: 59
    Stay positive!
    Gosh, I was sitting with my mom today at chemo and thinking about you and praying for good news. You are such an inspiration,as is my mom. You are two of a kind with your positive attitude and confidence. Each new day is a blessing, so keep enjoying it to the fullest! You will remain in my thoughts and prayers.
    Janet
  • donnare
    donnare Member Posts: 266
    Hi Donna
    Glad everything is stable and that you feel confident and still have a positive attitude. My husband, Brian, has basically been told the same thing about his liver. Hopefully, someday soon, something will "pop up" and we will be sharing info about RFA, thermaspheres, or something else to address liver mets. Like Buzzard said "...you are inoperable YET..". I keep telling my husband that too.

    Be well - you are always in my prayers too!
    Donna
  • Shayenne
    Shayenne Member Posts: 2,342
    coloCan said:

    I wish I could wave a magic wand
    and cure all of us. Your last sentence is beautiful, making the most of life as you possibly can. With an attitude like that and your inner strength you'll outlaast us all. Hopefully something will pop up to really help you......Steve

    Thanks Steve!
    You know I hope we all last, we all have inner strength, we just need to get in touch with it more, and not let the darkness take over...

    I have been planning for future things, like auditioning for "Seussical the Musical" that my theater is doing, I already did this with another theater troop, and looking forward to being in it again with the kids, with this other theater troop, the one I'm doing the Christmas show with.

    Thanks for the comment Steve, you're so sweet!

    Hugsss!
    ~Donna
  • Shayenne
    Shayenne Member Posts: 2,342
    sfmarie said:

    Stable
    Is good. I was at a Colon Cancer Alliance Seminar over Holloween at UCSF and there was a 15 year stage IV survivor there! 15 years. He said if it were not for the chemo that is around today, he would not have been there. It still breaks my heart to read that there is nothing that can be done for your liver. Have you talked to a liver surgeon or a interventional radiologist? However, if you are stable, then that is fantastic. You are a great inspiration and I hope you have applied to be a model on the colondar.
    Marie

    My
    onc has been doing the talking with the liver surgeon, and he's the one saying the way my liver it is very high risk, since it's it's so scattered, but wow! what hope I have to even know someone has had this for 15 years, bless that person! Yes, they rate Stability as a success, even with this disease, and not looking at it as a death sentence.

    Hugsss!
    ~Donna
  • Shayenne
    Shayenne Member Posts: 2,342
    lisa42 said:

    my thoughts
    Hi Donna,

    I'm glad your onc was able to explain everything to you. Stable is definitely good!
    My thoughts, however, are that I know I would personally still want to explore more options for making the liver tumors go away, rather than just be satisfied with stable. Having never had this done, I don't remember the name for it, but I would look into the type of chemo that can be fed directly into the liver, I believe with an intrahepatic chemo pump. It seems like, if I'm not mistaken, that Phil mentioned having this done at Mem. Sloan Kettering in NY.
    I don't know enough about it, but am wondering if that might have a more direct effect on shrinking those liver tumors than just the systemic chemo you're getting now. It seems like I remember reading that it's normally used for stubborn liver tumors that don't seem to respond or go away with systemic chemo that's given in the usual way chemo is given.
    I think it would be worth looking into, even when your onc says "don't fix what aren't broke". In my opinion, when you have tumors in your liver, things are "broke". You can always check with another onc or google who does this kind of treatment and inquire with them.
    I'm not wanting to discourage you from feeling good about your scan results, as stable is definitely good, but my lung tumors continue to be stable and I decided that I want to see if I can find a way to make them go away, instead of just living with them (as I'm not a surgical candidate or even a radiation candidate for my lung lesions right now).

    Take care & I'm sending you a PM with a question I have for you on a different subject, so check for that.

    Hugs,
    Lisa

    Hey Girl!
    Yeah, she knows the liver is broke, but there are things that can also make it worse if tried, and she's so pleased with how I'm doing and just not giving up on me. I am thinking of going to MD Anderson, hope to get a second opinion, they said they wouldn't mind, and would work with other centers with me, they encourage second opinions, though they do have all the advanced treatments that MD has (my hospital is like the 18 out of 20 top elite hospitals)

    I may think more of this after the holidays, and after she takes the Irinotecan away, which will give my body time to build back up after all that toxicity, and she even said I could use Probiotics!

    My bloodwork was fantastic she said, potassium was alittle low, but what was interesting, was when I said should I be taking potassium supplements, and the chemo nurse told me not too do that, the potassium should be prescribed, and not bought over the counter, as it just doesn't work then. I had no idea about that, I had to take 2 potassium pills, and prescribed ones, they were huge horse pills.

    I got your PM, and hope I helped ya out ;)

    Hugsss!
    ~Donna
  • Shayenne
    Shayenne Member Posts: 2,342
    TLG320 said:

    Stable IS good
    Marie is absolutely right: stable is good. We have no idea what new kinds of treatments are going to be available down the road. In the meantime, you're feeling good and living life to the fullest, and the treatment that you're on is stabilizing this cancer. Your oncologist seems to be pleased with the treatment and it sounds as though you still have some options down the road with possible RFA or thermaspheres.

    Stay positive and have a very happy Thanksgiving this year!

    Hugsss and love to you, Donna! You are truly an inspiration!

    Tashina

    Yes...
    ...She seemed very happy today with the results and how beautifully I'm feeling, and how the chemo is working, she is pleased, and she's made me feel better as well, never know down the road, what's there, it will be fun finding out though!

    Thank you sweety, I hope you have a wonderful Thanksgiving as well! You are all inspirations for me, if it wasn't for you all, I 'd be a basket case!

    Hugsss!
    ~Donna