I Actually Have Options???????

Shayenne
Shayenne Member Posts: 2,342
edited March 2014 in Colorectal Cancer #1
Wow, that was a cool visit. But first my scans...I had them last week, and met with my new onc about them today, and I must say, I think I like him a whole hell of alot better then my old one who just moved...he was so easy to understand, so comforting, and answered my questions like they should have been, not being so vague, but being clear. The tumors are all still contained in my liver, none anywhere else, lungs clear, but there is a small percentage of growth in a couple of the tumors. (I cried when I heard that)I remember asking how many tumors I had in my liver to my old onc, and she said "your liver is like shattered glass" that's all she said, so I figured they were all over my liver, loads of them, like shattered glass! Well, he told me I only had 8-10 tumors, the biggest one, having no activity at all, the little ones having just a 1 mm growth. He suggested me to try FOLFOX..this is the chemo I was dreading, and scared of, hearing all the horror stories, OR he also wants me to talk to this radiologist about something called Radio Spheres??? he said it's been around a little while, and the only bad thing about it, is it's temporary. They mark the tumors, and blast them with these glass beads I believe he said, but they will come back, and they can just keep doing that, he said he wanted to give me a break from the chemo, so, I said I may be interested...

I just wanted to ask you guys if anyone has done this? and what do you think? My old onc never even suggested anything else like this to me, and he was on her team. He told me sometimes 2 different eyes are sometimes better then one ;)

The plan is to just do 4 rounds of Oxy, as he does not want the neuropathy to be bad on me, and then give me a break from the chemo and do the spheres...I definitely could use the break, that's for sure, and it doesn't sound like it's an invasive surgery, but he does want to set up the meeting with the doctor for that, and ALSO a referral to a genetics doctor, where he will do a more thorough genetics testing on me, he said if Folfox don't work, there are alot more cocktails he wants to try, including clinical trials. He will not give up on me he said. I felt alot better when he said people have been doing this and are alive after many years, I said I would be happy if I was to see my grandchild, and he said "Of Course!" We gotta get working again :)

So far, this first treatment of Oxy, actually hasn't been bad, I been drinking warm stuff, not touching any cold, I got my gloves out! LOL..and my nausea pills out and maryjane of course, but guess I'm now in the club of doing the both the Folfiri, and now the Folfox! I hope this works, and stops it in its tracks! anyone has done Radio Spheres, please let me know your thoughts on it. :)

Thanks all for listening!
Hugsss!
~Donna
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Comments

  • maglets
    maglets Member Posts: 2,576 Member
    yehhhh choices.
    donna that all sounds good....so happy to hear you sounding happy and even optimistic...just the way it should be...good for your new onc. Can't help with spheres but can welcome you to the Oxy Club...a well known club here with lots of members. :):)

    hugs back at you....

    mags
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Thrilled Beyond Words!!!
    Another opinion is always an eye-opener, isn't it? Sounds like you're in good hands, Chicky. I already feel so much hope for you after reading your post.

    4 cycles of Oxy should be OK - effects are cumulative, it makes you feel bad, but nothing you are alread not used to...just sleep when you need to no matter how long you need to.

    Patti and Christy did Sir Spheres and I think this is along the same lines - it was rough on them, but will let them fill you in with their experience.

    Oxy is sure to shrink those liver tumors, honey, so just hang on...help is on the way :)

    You made my night with your post - I feel the "joy" in your heart - oh, what a feeling!

    As you say, Huggsss and Love, Chicky
    ~Lion
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    Sounds like a plan
    I thinks that's some great news and I agree having two sets of eyes and two minds working on this is better then one. How often do they want to do the four rounds of Oxy? Weekly? Bi-Weekly? I sure everything is going to be fine and I'll check back in to see if anybody posted anything about "Radio Spheres". Remember we have a wedding to go to!

    Lov ya
    Brooks
  • geotina
    geotina Member Posts: 2,111 Member
    Radio Spheres
    Just read your post, my understanding is that Radio Spheres,Thera Spheres and Sir Speres are all the same thing. My understanding the beads are the size of sand and they shoot thousands of them into the liver. This is what Patti just had and another member whose name escapes me. Aslo, on the Colon Club there is a gal called CindyZ, her hubby had these just before Patti. Don's sweat the Oxi until you have to, George worked full time while doing 12 Oxi treatments. If it works, then it is worth anything you go through to get you to the spheres and onward to resection. Sounds like your old onc was more concerned about her move than her patient and that really pisses me off. Take care - Tina
  • Shayenne
    Shayenne Member Posts: 2,342

    Sounds like a plan
    I thinks that's some great news and I agree having two sets of eyes and two minds working on this is better then one. How often do they want to do the four rounds of Oxy? Weekly? Bi-Weekly? I sure everything is going to be fine and I'll check back in to see if anybody posted anything about "Radio Spheres". Remember we have a wedding to go to!

    Lov ya
    Brooks

    We Sure Do!
    That will be an important date Brooks! I will be doing 4 rounds biweekly, just 2 months of it. He thinks I may be inoperable, I believe they are in locations that may kill me if they try, but you never know, maybe the oxi will make it disappear! Thanks for the posts, I feel like I do have better hope out there now, and you guys to hang onto when I'm going down :)


    Hugsss!
    ~Donna
  • geotina
    geotina Member Posts: 2,111 Member
    Shayenne said:

    We Sure Do!
    That will be an important date Brooks! I will be doing 4 rounds biweekly, just 2 months of it. He thinks I may be inoperable, I believe they are in locations that may kill me if they try, but you never know, maybe the oxi will make it disappear! Thanks for the posts, I feel like I do have better hope out there now, and you guys to hang onto when I'm going down :)


    Hugsss!
    ~Donna

    Donna
    Inoperable, remove that word from your vocabulary please. Finally, you are getting some good news so kiddo, you had better run with the news. This doc has given you lots of hope and that sounds like a lot more than you got from the old onc. Tina
  • maglets
    maglets Member Posts: 2,576 Member
    Shayenne said:

    We Sure Do!
    That will be an important date Brooks! I will be doing 4 rounds biweekly, just 2 months of it. He thinks I may be inoperable, I believe they are in locations that may kill me if they try, but you never know, maybe the oxi will make it disappear! Thanks for the posts, I feel like I do have better hope out there now, and you guys to hang onto when I'm going down :)


    Hugsss!
    ~Donna

    down
    but you aren't going down! you are going up up up!

    Craig is right...four rounds of oxy will be fine...you are a tough chicky...

    shall I send big bunches of Canadian mittens, balaclavas, and toques? :):)

    mags
  • Shayenne
    Shayenne Member Posts: 2,342
    maglets said:

    down
    but you aren't going down! you are going up up up!

    Craig is right...four rounds of oxy will be fine...you are a tough chicky...

    shall I send big bunches of Canadian mittens, balaclavas, and toques? :):)

    mags

    Thanks Tina and Mags!
    I am happy with the news, was scared at first, but I will run with it! you're right!

    Oh Mags! that would be awesome! they have the spring collections out now, so the job of even finding gloves is going to be a pain LOL! I know I have a set somewhere......

    Hugsss!
    ~Donna
  • coloCan
    coloCan Member Posts: 1,944 Member
    maglets said:

    down
    but you aren't going down! you are going up up up!

    Craig is right...four rounds of oxy will be fine...you are a tough chicky...

    shall I send big bunches of Canadian mittens, balaclavas, and toques? :):)

    mags

    WE all, as you know, react differently to chemo but
    my first experience with oxy I survived the scheduled five rounds but the second time around, oxy in the FOLFOX, I got knocked out after the fourth round (my remaining doses to be without oxy). Hopefully you'll do well on all four.....the spheres is a form of highly targeted radiation, I think, In any event, wishing you the best of results, Donna......steve
  • HollyID
    HollyID Member Posts: 946 Member
    Donna...
    So glad you found and onc that you can finally "talk" to. This sounds so positive and encouraging. I b*tch enough about the oxy, but in reality, it's not that bad. I just like to gripe. :)

    Oh... I am so happy for you!!
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Donna,
    I am so happy for

    Donna,

    I am so happy for you! I have been thinking about you today + hoped you would post about your visit with your new onc. I am eally happy that you like your onc. so much - I know how stressful it is to switch (I had to switch in January after my onc moved to another hospital) + I really like my new onc too. It sounds like your new onc is very proactive + has lots of options in mind for you - just what we want to hear. Good luck on your new chemo cocktail + keep warm. At least spring is here + you won't go through this in the winter! Thanks for posting. My heart is singing for you.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    hope
    Hi Donna,

    I know the news of hearing some of the tumors grew slightly was tough to take, BUT that's so great about your new onc and how he gave you HOPE with the additional chemo and other types of procedure recommendations. We all need hope and I'm so glad you've just been given more with this new guy. :)
    Folfox won't be the best experience, but with just 4 rounds, it shouldn't get too bad. I didn't start having more difficulties with it until I got into the 5th or 6th treatment and beyond. Make sure to take B-6 and L-glutamine (and possibly L-glutathione- not sure on that one, but check into it). I took those after I finished Folfox and the neuropathy took close to a year to resolve (but it did!) I wish I had known enough to take those while I was on it. Also, if they're not already giving it to you, there's a relatively new thing they can now give you while you're getting the oxy infused to help prevent the neuropathy. I know that Craig talked about it a while back- you might ask him if you're not familiar w/ what I'm talking about. I think it was maybe magnesium and some for of calcium- not exactly sure, but worth checking into before your next treatment.

    Hang tough, Donna- you're an inspiration to all!


    Lisa
  • WinneyPooh
    WinneyPooh Member Posts: 318
    You go Girl
    Donna, I know your excited about some new options, FOLFOX chemo, didn't cause me any throuble just tired, the cold thing its weird, I haven't had any chemo since last sept. but this is because of all the surgery, I have had to postpone my ileo reversal surgery until they decide what to do with my liver surgery,( wanting to do both at the same time, )
    I am laying low of my oncologist because i don't want anymore chemo and i know if i see him he'll want to do it.

    I am glad you are finding options, hang inthere and fight, and when you need a break, take it
    Live, Laugh, Play
    Winnie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    lisa42 said:

    hope
    Hi Donna,

    I know the news of hearing some of the tumors grew slightly was tough to take, BUT that's so great about your new onc and how he gave you HOPE with the additional chemo and other types of procedure recommendations. We all need hope and I'm so glad you've just been given more with this new guy. :)
    Folfox won't be the best experience, but with just 4 rounds, it shouldn't get too bad. I didn't start having more difficulties with it until I got into the 5th or 6th treatment and beyond. Make sure to take B-6 and L-glutamine (and possibly L-glutathione- not sure on that one, but check into it). I took those after I finished Folfox and the neuropathy took close to a year to resolve (but it did!) I wish I had known enough to take those while I was on it. Also, if they're not already giving it to you, there's a relatively new thing they can now give you while you're getting the oxy infused to help prevent the neuropathy. I know that Craig talked about it a while back- you might ask him if you're not familiar w/ what I'm talking about. I think it was maybe magnesium and some for of calcium- not exactly sure, but worth checking into before your next treatment.

    Hang tough, Donna- you're an inspiration to all!


    Lisa

    Chicky and Lisa
    Thank you, Lisa, you have such a good memory - glad I logged back in...

    Chicky, ask them about MAGNESIUM SULFATE. It's a bag drop and it turned my life around when they started to give that to me. Literally, I could leave infusion and drink "cold liquids" right away - this is a nice physical & mental boost during treatment.

    Prior to the introduction of that, it would take between 5-7 days of nothing but room temp drinks. And it really helped with the neuropathy in my hands and fignertips. Please ask them aobut this, because if it works for you, it will be the biggest blessing - and with you only doing 4x, it may help you even more.

    -Craig
  • msccolon
    msccolon Member Posts: 1,917 Member
    DANCING!
    Donna, that's such great news! You can hear the joy and hope in your post like it's more than the written words! Shame on your old onc that she was incapable of passing that hope onto you as well. You are so young and vibrant and you deserve everything the world has to offer! You will do fine and it sounds like your new onc is in your corner! Stay strong and let us know how things go!
    mary
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Best thing
    Donna,

    This is the best thing I heard today. I am so glad that your new doctor has a plan for getting rid of those pesky things. I am sending you hugs!!

    Amy
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    Shayenne said:

    Thanks Tina and Mags!
    I am happy with the news, was scared at first, but I will run with it! you're right!

    Oh Mags! that would be awesome! they have the spring collections out now, so the job of even finding gloves is going to be a pain LOL! I know I have a set somewhere......

    Hugsss!
    ~Donna

    I know where
    I know where they have some do you guys have a Wal Mart? They have cotton "Glove Liners" that I got and used. It worked great when I was on Oxy and they're only a dollar a pair. If you cant find any call me.

    Brooks
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Alrighty!
    I'm very happy to hear you have options Donna.
    Great news! I did FOLFOX, it was a while ago and it wasn't as "fun" as all of the others have been but it does the trick. You know this isn't all fun and games
    ;-)
    -p
  • robinvan
    robinvan Member Posts: 1,012
    Great News Donna
    So glad to hear of a proactive plan emerging. I hope it all goes well.

    Be well... Rob; in Vancouver
  • ittapp
    ittapp Member Posts: 383 Member
    Donna, Hey it looks like you
    Donna, Hey it looks like you and I just switched chemo's, I am now doing Ironotecan and your doing Folfox. It was easy for me to do that one, Dr. did take me off Oxi at around 5 or so. It did alot for me but did not help out with the liver tumors. That is why I went to see an Interventional Radiologist and he recommended Sir Spheres (same thing as radio spheres) I will be honest and say that it has been painful for me. I also went in for a ct scan Friday and the tumors have gotten larger. Now this is suppose to happen they say, it gets larger and then starts dying off. Also I should have waited longer to take the CT because the IR Dr. says it takes a while for it to start working. I was having some other issues that is why they did the ct scan Friday. At this point I just do not know if I would suggest it, maybe in a couple of months I will be a cheerleader for the spheres but as of yet nothing has happened.Another lady on here Christy has had it done and she is pretty far ahead of me on the procedure and she has gotten significant shrinkage but she like me has had pain. Good luck to you sweetie, Patti