Phil ,Buck , Buzz how are you

pepebcn
pepebcn Member Posts: 6,331 Member
just want to know about you!
«1

Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    Tell us
    something about something about yourself first.

    You know, quid pro quo
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Buckwirth said:

    Tell us
    something about something about yourself first.

    You know, quid pro quo

    Well I'm quite fine thanks , just on avastin ,very manageable
    but worried for next control beginning of November , my CEA rised twice in my last two controls0.2 and0.4 but still under 4 (3.9).
    Quid pro quo what about you my friend?.hahaha!
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    pepebcn said:

    Well I'm quite fine thanks , just on avastin ,very manageable
    but worried for next control beginning of November , my CEA rised twice in my last two controls0.2 and0.4 but still under 4 (3.9).
    Quid pro quo what about you my friend?.hahaha!

    Treatment yesterday
    Still a bit ill.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Me???
    I like kittens and sunrises.
    Oh, I had chemo on Wednesday and I'm having my 4th RFA on Monday.
  • z
    z Member Posts: 1,414 Member
    PhillieG said:

    Me???
    I like kittens and sunrises.
    Oh, I had chemo on Wednesday and I'm having my 4th RFA on Monday.

    Phil
    You are so funny, may I ask if you have been on chemo all along, as I have never seen you post it until today, of course, I could have missed a post. I wish you well. Lori
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    PhillieG said:

    Me???
    I like kittens and sunrises.
    Oh, I had chemo on Wednesday and I'm having my 4th RFA on Monday.

    Chemo? Who, me?
    I've been on chemo since march of 2004, about 1 week or so after my Feb 25th DX. I've had in the area of 260-270 doses. I did FOLFOX, FUDR, Avastin, 5FU, Leucavorin, Irinotecan, and Erbitux. I'm pretty sure I've left some out. After I had my HAI pump put in, Sept 2004, I had something in that which went directly to my liver. Not sure what it was since it was a long time ago. For the past 4-5 years I've been on a more targeted chemo which was the Erbitux and Irinotecan. I've had them together at times but for the past year it's mainly just been Erbitux. I would do both in combo for a while, then just Erbitux when the combo got to be too much. It's more of a "chemo lite" in many ways since at this point, I do not get much of a rash and I'm down to once every 3 weeks. I also seem to be on a yearly RFA routine too. So in all, I've never been NED, I've always been in treatment. The longest break I had was about 3 months maybe 2-3 times over the 7 1/2+ years I've been dealing with this "stuff".

    One can live with cancer.
    A blow by blow description...
  • maglets
    maglets Member Posts: 2,576 Member
    PhillieG said:

    Chemo? Who, me?
    I've been on chemo since march of 2004, about 1 week or so after my Feb 25th DX. I've had in the area of 260-270 doses. I did FOLFOX, FUDR, Avastin, 5FU, Leucavorin, Irinotecan, and Erbitux. I'm pretty sure I've left some out. After I had my HAI pump put in, Sept 2004, I had something in that which went directly to my liver. Not sure what it was since it was a long time ago. For the past 4-5 years I've been on a more targeted chemo which was the Erbitux and Irinotecan. I've had them together at times but for the past year it's mainly just been Erbitux. I would do both in combo for a while, then just Erbitux when the combo got to be too much. It's more of a "chemo lite" in many ways since at this point, I do not get much of a rash and I'm down to once every 3 weeks. I also seem to be on a yearly RFA routine too. So in all, I've never been NED, I've always been in treatment. The longest break I had was about 3 months maybe 2-3 times over the 7 1/2+ years I've been dealing with this "stuff".

    One can live with cancer.
    A blow by blow description...

    yup
    that's my boy....sunshine lollipops and roses ....

    that's how I feel when we're together...

    Phil you are amazing...

    mags
  • z
    z Member Posts: 1,414 Member
    PhillieG said:

    Chemo? Who, me?
    I've been on chemo since march of 2004, about 1 week or so after my Feb 25th DX. I've had in the area of 260-270 doses. I did FOLFOX, FUDR, Avastin, 5FU, Leucavorin, Irinotecan, and Erbitux. I'm pretty sure I've left some out. After I had my HAI pump put in, Sept 2004, I had something in that which went directly to my liver. Not sure what it was since it was a long time ago. For the past 4-5 years I've been on a more targeted chemo which was the Erbitux and Irinotecan. I've had them together at times but for the past year it's mainly just been Erbitux. I would do both in combo for a while, then just Erbitux when the combo got to be too much. It's more of a "chemo lite" in many ways since at this point, I do not get much of a rash and I'm down to once every 3 weeks. I also seem to be on a yearly RFA routine too. So in all, I've never been NED, I've always been in treatment. The longest break I had was about 3 months maybe 2-3 times over the 7 1/2+ years I've been dealing with this "stuff".

    One can live with cancer.
    A blow by blow description...

    Phil
    Thank you for sharing, I went to the with and the blow by blow. I see that your taking the chemo now to keep that lung nodule in check. Now will you be able to stop chemo after the nodule is removed via rfa? Lori
  • laurettas
    laurettas Member Posts: 372
    PhillieG said:

    Chemo? Who, me?
    I've been on chemo since march of 2004, about 1 week or so after my Feb 25th DX. I've had in the area of 260-270 doses. I did FOLFOX, FUDR, Avastin, 5FU, Leucavorin, Irinotecan, and Erbitux. I'm pretty sure I've left some out. After I had my HAI pump put in, Sept 2004, I had something in that which went directly to my liver. Not sure what it was since it was a long time ago. For the past 4-5 years I've been on a more targeted chemo which was the Erbitux and Irinotecan. I've had them together at times but for the past year it's mainly just been Erbitux. I would do both in combo for a while, then just Erbitux when the combo got to be too much. It's more of a "chemo lite" in many ways since at this point, I do not get much of a rash and I'm down to once every 3 weeks. I also seem to be on a yearly RFA routine too. So in all, I've never been NED, I've always been in treatment. The longest break I had was about 3 months maybe 2-3 times over the 7 1/2+ years I've been dealing with this "stuff".

    One can live with cancer.
    A blow by blow description...

    Phenomenal story
    Can't even believe all you have done these past seven years, Phil. Your patience, etc. is truly inspiring for those of us beginning this journey.
  • Kimo Sabe
    Kimo Sabe Member Posts: 64
    laurettas said:

    Phenomenal story
    Can't even believe all you have done these past seven years, Phil. Your patience, etc. is truly inspiring for those of us beginning this journey.

    Kittens
    That says a great deal about you, IMHO. I have two cats, and they are so special
    I worry a little about people who don't like cats. To me a cat is 100 percent cat. What you see is what you get. You can't say that abut people or many animals.
    Occaisionally my love is challenged at night when they decide my chest is a runway.

    Norm
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    PhillieG said:

    Me???
    I like kittens and sunrises.
    Oh, I had chemo on Wednesday and I'm having my 4th RFA on Monday.

    Good luck Phil
    hope to see you recovered very soon!
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    z said:

    Phil
    Thank you for sharing, I went to the with and the blow by blow. I see that your taking the chemo now to keep that lung nodule in check. Now will you be able to stop chemo after the nodule is removed via rfa? Lori

    Thanks Everyone
    Lori, I don't know the answer. I will continue chemo as of now. I'm sure I'll have another CT scan in 2-3 months and we'll take it from there. I seem to be having 1 RFA per year right now. I can do this as long as needed. If I hear the word NED I will take it with a grain of salt. I've been around for a while, I'm familiar with the routine so to speak.
    ;-)
    I learned something early on which made me try to just take it a step at a time and not project too far into the future with cancer treatments. When I'm done I'm done (with chemo and everything else I suppose!)
    -phil
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    laurettas said:

    Phenomenal story
    Can't even believe all you have done these past seven years, Phil. Your patience, etc. is truly inspiring for those of us beginning this journey.

    Laurettas
    I've found there are different groups we fall into.
    Those who do their surgery and treatment and are finished with everything.
    Those who do their surgery and treatment and can live with their cancer as a chronic disease.

    I've been reluctant to over-post about doing this for as long as I have. Someone who is new to this doesn't want to hear that they might be doing this for a very long time, they want to hear what most of us want to hear. Do the surgery, then 12 rounds of chemo (if you chose chemo), then you're done with cancer. I just want people to know that one CAN live a fairly normal life with cancer. That's why I agreed to the Stories of Hope interview. It's not my first choice but I'll take. Of course there is the third group which I don't need to go into, we're all too aware of it unfortunately.
    -phil
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Kimo Sabe said:

    Kittens
    That says a great deal about you, IMHO. I have two cats, and they are so special
    I worry a little about people who don't like cats. To me a cat is 100 percent cat. What you see is what you get. You can't say that abut people or many animals.
    Occaisionally my love is challenged at night when they decide my chest is a runway.

    Norm

    Cats
    People either love 'em of hate 'em it seems. I think they're amazing too. The are the only domesticated animal that domesticated themselves. I think that says it all...
    -p
  • laurettas
    laurettas Member Posts: 372
    PhillieG said:

    Laurettas
    I've found there are different groups we fall into.
    Those who do their surgery and treatment and are finished with everything.
    Those who do their surgery and treatment and can live with their cancer as a chronic disease.

    I've been reluctant to over-post about doing this for as long as I have. Someone who is new to this doesn't want to hear that they might be doing this for a very long time, they want to hear what most of us want to hear. Do the surgery, then 12 rounds of chemo (if you chose chemo), then you're done with cancer. I just want people to know that one CAN live a fairly normal life with cancer. That's why I agreed to the Stories of Hope interview. It's not my first choice but I'll take. Of course there is the third group which I don't need to go into, we're all too aware of it unfortunately.
    -phil

    True
    I know what you mean, Phil. It is daunting at the moment to think of living this way for a long time. I would probably fall into the first category but thankfully my husband is thinking more of a chronic disease situation. His is a little more complicated from the fact that his is only treatable by chemo since he has mets in all the wrong places.

    We have the same concerns about sharing Jake's first experience with cancer since it can certainly cause people to wonder why they don't have the same experience. Plus a lot of people just don't believe it--would love to have the scans to show people or a statement from his physicians but we don't unfortunately. Oh, well, some would not believe even if we had those things.

    I do have a question for you. You said that you are having one tumor a year removed. Are there others that are just too small to remove? Thought that must be the case since you said that you have not been NED. The NED thing is kind of strange, isn't it? I know that I am looking forward to hearing that said even though I have read enough stories to know that it can be VERY short-lived. Something in our psyche, I guess!
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    PhillieG said:

    Laurettas
    I've found there are different groups we fall into.
    Those who do their surgery and treatment and are finished with everything.
    Those who do their surgery and treatment and can live with their cancer as a chronic disease.

    I've been reluctant to over-post about doing this for as long as I have. Someone who is new to this doesn't want to hear that they might be doing this for a very long time, they want to hear what most of us want to hear. Do the surgery, then 12 rounds of chemo (if you chose chemo), then you're done with cancer. I just want people to know that one CAN live a fairly normal life with cancer. That's why I agreed to the Stories of Hope interview. It's not my first choice but I'll take. Of course there is the third group which I don't need to go into, we're all too aware of it unfortunately.
    -phil

    You are an inspiration Phil... :)
    Thank you
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    laurettas said:

    True
    I know what you mean, Phil. It is daunting at the moment to think of living this way for a long time. I would probably fall into the first category but thankfully my husband is thinking more of a chronic disease situation. His is a little more complicated from the fact that his is only treatable by chemo since he has mets in all the wrong places.

    We have the same concerns about sharing Jake's first experience with cancer since it can certainly cause people to wonder why they don't have the same experience. Plus a lot of people just don't believe it--would love to have the scans to show people or a statement from his physicians but we don't unfortunately. Oh, well, some would not believe even if we had those things.

    I do have a question for you. You said that you are having one tumor a year removed. Are there others that are just too small to remove? Thought that must be the case since you said that you have not been NED. The NED thing is kind of strange, isn't it? I know that I am looking forward to hearing that said even though I have read enough stories to know that it can be VERY short-lived. Something in our psyche, I guess!

    Laurettas
    I went into this like most people do, I thought I'd do my 6 months of chemo before surgery, then 6 months after surgery then I'd be done. The lungs were a big question mark. I had worked as a printing press operator for over twenty years plus I smoked a bit in my teens and twenties, the "stuff" in my lungs could have been anything but in the back of my mind I knew it could also be cancer.

    I'm not sure what you mean about Jake's first experience with cancer, I get the impression that there was possibly "divine intervention"? Often stuff happens or doesn't happen with cancer that defies explanation.

    You say Jake has spots in the wrong places. Mine weren't ideal at all. The "good" thing about colon cancer (yes, there are good things about it) is that a lot of people get it so there's been a lot of research done on it. They are always coming up with new protocols. I was fortunate enough to be able to have two things come up for me. Avastin and Erbitux. The timing was right. Part of my success or luck has been timing. If I developed colon cancer twenty years ago, I'd be using a Ouiji board instead of an iPad right now (or maybe a Ouiji board iPad app) so my point is the Jake shouldn't give up hope. He sounds like he's got a good handle on things to me. I also have found that our caregivers do not have the same patience that the patients have. We have little control but caregivers have even less control. I think that makes it harder in many ways. Erbitux worked VERY well for me with keeping the lung rumors growing at a low rate. Who knows what will be available in the next year or two. I've felt that I've been riding the crest of the wave of technology at times. Hang Ten!!

    As far as your last question about this being possibly the last tumor, I don't know. A this time there is nothing on the radar so to speak but I have a lot of scar tissue in my lungs so there isn't always a clear picture of what's going on. My HOPE is that I can just do the chemo at longer intervals but over the past few years, we have tweaked the chemo intervals. We found that every 4 weeks didn't work, every 2 weeks was giving me side effects that I was getting tired of.

    Do I want to hear NED? Like I said earlier, I'll take those words with a grain of salt. Part of me is still waiting for the proverbial "other shoe to drop". I have a feeling I will always be looking over my shoulder for cancer no matter if this is the last RFA I have. I do realize just how fortunate I have been. Many out there can not take the Erbitux or can't have RFAs. I had a great medical team from day two (day one sucked but I got rid of that clown ASAP), I've responded very well to treatments, things came out when I needed them. I have a great support system with my immediate family as well as siblings, friends, coworkers, and my imaginary online friends (they are REAL people, I just imagine that they are my friends)
    ;-)
    -Phil
  • z
    z Member Posts: 1,414 Member
    PhillieG said:

    Thanks Everyone
    Lori, I don't know the answer. I will continue chemo as of now. I'm sure I'll have another CT scan in 2-3 months and we'll take it from there. I seem to be having 1 RFA per year right now. I can do this as long as needed. If I hear the word NED I will take it with a grain of salt. I've been around for a while, I'm familiar with the routine so to speak.
    ;-)
    I learned something early on which made me try to just take it a step at a time and not project too far into the future with cancer treatments. When I'm done I'm done (with chemo and everything else I suppose!)
    -phil

    Phil
    Thank you for replying. I have had 2 primary cancers, and your right about not projecting into the future and just taking it as it comes. I know that the 1st diagnosis was the hardest and it made me take a good look at my life. I feel better now than I have in years, even before the cancer. I was a 35 pack year smoker and quit 5-4-09 before beginning treatment for stage IINOMO anal cancer. Next at a follow up scan a lung nodule was found, in which I had vats for a lower right lobe removal on 9-23-10, and now so far so good. I feel fortunate that both cancers were found early. You are an inspiration to many and I am one of them. You make me feel that no matter what happens, you deal with it and move on, and thank you for that. Lori
  • Psalm 91
    Psalm 91 Member Posts: 5
    pepebcn said:

    Good luck Phil
    hope to see you recovered very soon!

    What an Inspiration!
    I lost my last post, so I'll try again. Before I start, I'm new and I don't know what NED or RFA mean. Can someone explain?

    Phil, you are such an inspiration to me. I'm getting so tired of chemo after five years and it seems that all I do is complain these days. My brain is really slow and forgetful and the arthritis is worse and everywhere. I only get a little Avastin and 5FU and leukovorin every two weeks but I have always been, as the nurse says, "sensitive" to all of the drugs. I resent not being able to enjoy my coffee for a few days after chemo. Shame on me. I realize from reading many of the posts here that I have not accepted my situation as a lifelong journey. Maybe that is the real reason why I immediately get nauseated when I get in my car to drive to chemo. I tried Gilda's Club early on but found it to be depressing. Duh. That should have told me something! I said "It's up to God " which is true,but I detached myself from the disease, which is now leading to frustration and impatience. Thank you for being so open about your treatment. I had forgotten the days when I lived with a bucket next to the bed and have wondered all summer why the air wasn't as refreshing as it had once been. I guess I forgot how it feels to just be glad to be alive. Thank you for reminding me that we can never take our health for granted. I've been doing that and that is why the fresh air is no longer so sweet. Keep fighting and inspiring the people around you, including me. Pat

    I don't mean to frighten anyone who is beginning chemo or who has just been told they will have to undergo chemo. Most of the people getting the same drugs I got did not have so many side effects as I did. In fact, many of them went out to lunch after their chemo treatments!
  • laurettas
    laurettas Member Posts: 372
    PhillieG said:

    Laurettas
    I went into this like most people do, I thought I'd do my 6 months of chemo before surgery, then 6 months after surgery then I'd be done. The lungs were a big question mark. I had worked as a printing press operator for over twenty years plus I smoked a bit in my teens and twenties, the "stuff" in my lungs could have been anything but in the back of my mind I knew it could also be cancer.

    I'm not sure what you mean about Jake's first experience with cancer, I get the impression that there was possibly "divine intervention"? Often stuff happens or doesn't happen with cancer that defies explanation.

    You say Jake has spots in the wrong places. Mine weren't ideal at all. The "good" thing about colon cancer (yes, there are good things about it) is that a lot of people get it so there's been a lot of research done on it. They are always coming up with new protocols. I was fortunate enough to be able to have two things come up for me. Avastin and Erbitux. The timing was right. Part of my success or luck has been timing. If I developed colon cancer twenty years ago, I'd be using a Ouiji board instead of an iPad right now (or maybe a Ouiji board iPad app) so my point is the Jake shouldn't give up hope. He sounds like he's got a good handle on things to me. I also have found that our caregivers do not have the same patience that the patients have. We have little control but caregivers have even less control. I think that makes it harder in many ways. Erbitux worked VERY well for me with keeping the lung rumors growing at a low rate. Who knows what will be available in the next year or two. I've felt that I've been riding the crest of the wave of technology at times. Hang Ten!!

    As far as your last question about this being possibly the last tumor, I don't know. A this time there is nothing on the radar so to speak but I have a lot of scar tissue in my lungs so there isn't always a clear picture of what's going on. My HOPE is that I can just do the chemo at longer intervals but over the past few years, we have tweaked the chemo intervals. We found that every 4 weeks didn't work, every 2 weeks was giving me side effects that I was getting tired of.

    Do I want to hear NED? Like I said earlier, I'll take those words with a grain of salt. Part of me is still waiting for the proverbial "other shoe to drop". I have a feeling I will always be looking over my shoulder for cancer no matter if this is the last RFA I have. I do realize just how fortunate I have been. Many out there can not take the Erbitux or can't have RFAs. I had a great medical team from day two (day one sucked but I got rid of that clown ASAP), I've responded very well to treatments, things came out when I needed them. I have a great support system with my immediate family as well as siblings, friends, coworkers, and my imaginary online friends (they are REAL people, I just imagine that they are my friends)
    ;-)
    -Phil

    Patients = Patience
    Ah, I get it now. That's why Jake is able to handle the long term prospect more easily than I can!

    I don't have a full grasp of the patient's "owning" the cancer making them more capable of handling the issue than the caregiver but I have heard it enough to believe it now. Have to say, though, that when Jake went through chemo when we were young, I was the stoic cheerleader getting him to continue on when he wanted to give up. Part of it for me now is that I don't want to unduly influence his decisions with my desires. This stuff is hard to deal with and I want him to be making those decisions without my neediness interfering.

    Yes, there was "divine intervention" last time. I would be happy to PM you the details if you are at all interested.

    We, too, feel that we are at the forefront of major developments in the treatment of cancer. I think they are able to manipulate cells well enough now that soon they will be able to train our own bodies to deal with the cancer. Have read some great results this summer from research that has been done. I keep thinking that we may need to develop some fund-raising awareness to continue these developments, however. Sounds like that is one of the main issues slowing down the progress of the research. Not enough money to be made from some of the developments, which is totally unconscionable in my opinion. But that I guess would be bordering on a political discussion so I won't go there!

    You are very fortunate to have a lot of support. That means a lot. We are in somewhat of a difficult situation in that we moved a few years ago and just haven't developed a lot of friendships here yet. The people in our church have been great--especially the men--and have come over at different times to help us with things we needed. Have heard from people we haven't seen in 40 years and rekindled old friendships, while some people that we were really close to a couple of years ago are strangely silent. It is very interesting to see how people react--especially family whom you would think would be the first to offer to help. Unfortunately that is not always the case.

    By the way, best of luck with your RFA tomorrow. Will be waiting to hear the good report!