Jason's CT Scan results....not good
Well, Jason went to get his chemo today, & to get the results of his CT Scan from the Oncologist. The CT showed that the large tumor on/in his colon has shrunk by 50%, great news, BUT he was also told that the ONE met in his liver is now 4 because the chemo combination he has been on obviously isn't working for the liver mets, so he didn't get chemo today, the Oxaliplatin is discontinued & starting next Wednesday he will be getting Irinotecan, along with the other chemos (5-FU, Leucovorin, & Avastin). He was also told that surgery is no longer an option because of the location of tumors. Apparently they are too close in proximity to the "vena cava"? something like that, so in other words the oncologist said that liver resection is not an option & neither is the colon resection, which I don't really understand because we were told in the beginning that the goal was to shrink the tumor down enough to make surgery feasable at some point. The goal of the dr. now is just to 'treat' the cancer instead of trying to cure it, which we knew all along probably wasn't gonna happen anyway, but this office visit was by far the least promising. Jason was told that he would never be free of cancer & that yes, one day he will succumb to the cancer. I would really love to hear from anyone who may have had a similar dx (especially the 'inoperable' part), maybe you were told at one point that surgery wasn't an option then later on found out it could be done....? I guess just anything uplifting story is really what I need right now, but I'm very close to just losing it. Thanks in advance.....God Bless, Kris
Comments
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dearest kris
some people belief this prognosis, I choose not too, read my crazy blog, I am still alive, so many amazing therpaies out there, I intend to live long enough to try them all. heck one of them might work.
its just the docs opinion "he would never be free of cancer & that yes, one day he will succumb to the cancer", I take my advice from God.
try and find some joy in your days, I know its hard, you will have to look hard, but life really is wonderful. so find the joy in your life, jason and dont take your eyes off it!
hugs,
Pete
ps the ketogenic diet and the life extension recommendations, well they have not hurt me so far, they might have even helped.
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I have been told the same
I have been told the same thing (inoperable, lifelong chemo, only a matter of time, etc...) but unfortunately I can't say that the doctors were wrong (yet). I will say that I am almost certain that my oncs never expected me to be as healthy (or healthier) now than I was a year ago when diagnosed. Quite frankly, I think they were privately thinking I had 6-12 months to live at diagnosis, but I never asked. The only thing I can say with 100% certainty is that we are all "terminal", i.e. we will all die someday. What I know is that there is a good chance I will go sooner than I want to and sooner than I ever thought, so I am living my life differently now that I have that knowledge. Very sorry to hear this news, but let your faith help provide some comfort, and realize that we will all someday face death, but none of us really know when. Hope this doesn't add to your sadness...
Tedd
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Clinical trial
So so sorry to hear your news. My husband was doing so well on all the chemos, then for some reason the last chemo don't work, his .oncologist said no more!! Like you no where to turn, then he was offered a clinical trial, so we hope this will prolong his life for him. There always seems that something does turn up enjoy each day, never say never.
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ditto
Hi, Kris and Jason. I'm in the same situation - primary rectal tumor, liver mets (4), and lung mets (5) and have not had surgery and probaby won't. I had four "second opinions" from reputable doctors and institutions and all seem to confirm my original prognosis. None of my doctors would say how long I have to live - although the first surgeon I saw looked sad and said "the horse has left the barn." But all of them shuffle their feet and know that people in my shoes don't have good odds. Doctors see patterns - where the tumors are, how many we have, how large they are, how well we respond to chemo, etc. They do know when we are dying, but until then, they really don't know.
So I have hope, but I am a realist. The good news is that my first round of chemo got rid of a lot of junk and put my tumors to sleep. But how long that lasts? Who knows? I've been stable for five months.
Like Tedd, I'm living my life differently - I"m spending more time with family, I'm doing things I like, I'm not putting up with other people's "stuff", and am living life for me. I'm saying no to things! (this is awesome!) Instead of trying to "fight" cancer by eating unpleasant but healthy food, I'm eating things I like and am enjoying it. If these are my last years then I'm going to live them "my way" as much as possible.
Thinking I may have 2-5 years, I thought I'd try to accomplish something with this time but I've just watched a lot of Netflix... Sorry world, no symphony or great American novel! But I have seen every episode of NCIS (that is quite an accomplishment ~)
I am, though, seeking other therapies beyond what my oncologist recommends. I keep him in the loop - he's a good doctor but knows what he knows and does what he does. My mantra is "I'm not going to die sitting on my *ss. (except for the Netflix part)" Which means that I am going to trust but verify and make sure that I do know what options are out there besides what i'm being told. For this I am grateful for this board an other social media sites where others like our dear Pete and others have shared their journeys and treatments.
So my advice for Jason is to find a balance between fighting cancer and enjoying life. Be with family and friends, do things he likes or has always wanted to do, and that sort of thing.
be happy!
Karin
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Hang in there, Kris.
That's easier said than done, I know. But try to keep a little hope. I have read of quite a few cases where the "iri" drug worked really well for people. And some of the cases I've seen have involved the liver. If it works for Jason, surgery may come back on the table, and give him a better chance in the future. Sending hope and hugs your way~AA
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Please hang in there. In
Please hang in there. In December my surgeon said months to a few years maybe. I went back to him in March to talk colostomy reversal. He was shocked at how well my fiance and I are looking/doing. I had my 13th folfox last weekend, and next Monday, June 17th, have my colostomy reversal. So, last tx I did not have avastin. I will not have my treatment next weekend. Although, my oncologist was planning to do tx next weekend despite surgery; he just feels I have done so well. My fiance and I are getting married tomorrow night (nothing big, just us and kids). So, please don't think all is lost. You really don't know how things are going to go and how his body will respond. We both feel physically great, probably better than before we were diagnosed...
Judy
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Congratswawaju04976 said:Please hang in there. In
Please hang in there. In December my surgeon said months to a few years maybe. I went back to him in March to talk colostomy reversal. He was shocked at how well my fiance and I are looking/doing. I had my 13th folfox last weekend, and next Monday, June 17th, have my colostomy reversal. So, last tx I did not have avastin. I will not have my treatment next weekend. Although, my oncologist was planning to do tx next weekend despite surgery; he just feels I have done so well. My fiance and I are getting married tomorrow night (nothing big, just us and kids). So, please don't think all is lost. You really don't know how things are going to go and how his body will respond. We both feel physically great, probably better than before we were diagnosed...
Judy
Congratulations on your nuptials.
Enjoy every minute with your new husband and children.
Blessings!
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Amen sister!!! I could notlilacbrroller said:ditto
Hi, Kris and Jason. I'm in the same situation - primary rectal tumor, liver mets (4), and lung mets (5) and have not had surgery and probaby won't. I had four "second opinions" from reputable doctors and institutions and all seem to confirm my original prognosis. None of my doctors would say how long I have to live - although the first surgeon I saw looked sad and said "the horse has left the barn." But all of them shuffle their feet and know that people in my shoes don't have good odds. Doctors see patterns - where the tumors are, how many we have, how large they are, how well we respond to chemo, etc. They do know when we are dying, but until then, they really don't know.
So I have hope, but I am a realist. The good news is that my first round of chemo got rid of a lot of junk and put my tumors to sleep. But how long that lasts? Who knows? I've been stable for five months.
Like Tedd, I'm living my life differently - I"m spending more time with family, I'm doing things I like, I'm not putting up with other people's "stuff", and am living life for me. I'm saying no to things! (this is awesome!) Instead of trying to "fight" cancer by eating unpleasant but healthy food, I'm eating things I like and am enjoying it. If these are my last years then I'm going to live them "my way" as much as possible.
Thinking I may have 2-5 years, I thought I'd try to accomplish something with this time but I've just watched a lot of Netflix... Sorry world, no symphony or great American novel! But I have seen every episode of NCIS (that is quite an accomplishment ~)
I am, though, seeking other therapies beyond what my oncologist recommends. I keep him in the loop - he's a good doctor but knows what he knows and does what he does. My mantra is "I'm not going to die sitting on my *ss. (except for the Netflix part)" Which means that I am going to trust but verify and make sure that I do know what options are out there besides what i'm being told. For this I am grateful for this board an other social media sites where others like our dear Pete and others have shared their journeys and treatments.
So my advice for Jason is to find a balance between fighting cancer and enjoying life. Be with family and friends, do things he likes or has always wanted to do, and that sort of thing.
be happy!
Karin
Amen sister!!! I could not have said it better. To quote a song from a former American Idol winner, I'm going to "live like I'm dying"....
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Oh Kris, I'm so sorry to hear
Oh Kris, I'm so sorry to hear this news. My only advice it to try to live one day at a time and enjoy your time together and take a break from all of the worry. Maybe you both can take a short road trip, go to a favorite restaurant, see a movie, or whatever you both enjoy, just make some wonderful memories together.
Take care dear, hugs (()),
Cyn
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Sorry to read your post. Too
Sorry to read your post. Too bad you and I can't get together and commiserate. I can tell that you're really struggling to keep up the positive outlook. Bad scan results are so devastating. Things will seem brighter after a few days. You will process this new info and move forward. Jason is young and strong. He is just getting started. There is so much left to try. Steve did really well on the Folfiri. Hopefully Jason will too. There are so many stories of people who have had successful surgeries despite being told otherwise. It happens all the time. Focus on enjoying each day. Don't look ahead. None of us know what the future has in store for us. I know how hard this seems. We've had bad news this week, as well. As awful as it sounds, I have a hard time just looking at Steve. It breaks my heart to think of all that lies ahead for him. I guess I better practice what I preach.
Chelsea0 -
I was in the same boat,
I was in the same boat, neither folfox nor folfiri shrunk my liver mets, though it did reduce the primary. If irinotecan does not do the trick, make sure you make liver the focus of your efforts. I would certainly look into TACE asap, sirtex failing that and other liver targetted therapies.
There are treatments out there and other options, just don't expect your oncologist to be very helpfull in this regard. mine certainly were not. I saw six, and not one mentioned TACE as an option and only one mentioned sirtex,though only as an offhand remark. But I took notes and followed up.
Most important, don't give up. Your fight is just starting.
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yeah buddy!tachilders said:Amen sister!!! I could not
Amen sister!!! I could not have said it better. To quote a song from a former American Idol winner, I'm going to "live like I'm dying"....
Yes! For the longest time I coudln't get that song out of my head - sky divin', rocky mountain climbin;, love deeper and speak sweeter. yup! It's so true though.
At work, I secretly have the attitude of the guy in Office Space who was hypnotized. I still enjoy my job (no TPS reports), but does it all really matter? I really put up with less crap from people and institutions, and in some ways I've mentally aged from 46 to 80 in a year in terms of perspective and attitude. Theres a down side for sure but the positive is expressed in that song. Except for the 'being able to clean a trout on my desk' part..
And don't get me wrong - I am not in denial or have my head in the sand, nor am I accepting this passively. In the past year, I've read a lot about my cancer, basic (and maybe advanced) biology, and treatment options. Now after all this reading and studying, i have a better understanding of medical journal articles and how the drugs work - I had ZERO understanding when I started. I check the NIH website for clinical trials at least once a week. Knowledge is power.
Idol? Really??
cheers - Kris and Jason definitely hang in there and find that balance between cancer, cancer, cancer and living. pursue treatments, educate yourself, but also and enjoy the time you have together. I like the take the trip idea. Getting away and not focusing on it helps us patients feel "normal". That is so healing. Love may be as good as chemo ; -)
Karin
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Tho it hasn't reached phase III yet, find out aboutrenw said:I was in the same boat,
I was in the same boat, neither folfox nor folfiri shrunk my liver mets, though it did reduce the primary. If irinotecan does not do the trick, make sure you make liver the focus of your efforts. I would certainly look into TACE asap, sirtex failing that and other liver targetted therapies.
There are treatments out there and other options, just don't expect your oncologist to be very helpfull in this regard. mine certainly were not. I saw six, and not one mentioned TACE as an option and only one mentioned sirtex,though only as an offhand remark. But I took notes and followed up.
Most important, don't give up. Your fight is just starting.
something called Everolimus that is currently being studied as it might be of help after other chemo has stopped working
Also,there are always trials and studies being done all over the world and at major universities and medical centers; here's recent example
In the US, i would hazard the guess that most oncs are members of ASCO....There are other cites that may provide other means of battle if your onc isn't abreast of available artillary:ie.NCCN.com;effectivehealthcare
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Congratswawaju04976 said:Please hang in there. In
Please hang in there. In December my surgeon said months to a few years maybe. I went back to him in March to talk colostomy reversal. He was shocked at how well my fiance and I are looking/doing. I had my 13th folfox last weekend, and next Monday, June 17th, have my colostomy reversal. So, last tx I did not have avastin. I will not have my treatment next weekend. Although, my oncologist was planning to do tx next weekend despite surgery; he just feels I have done so well. My fiance and I are getting married tomorrow night (nothing big, just us and kids). So, please don't think all is lost. You really don't know how things are going to go and how his body will respond. We both feel physically great, probably better than before we were diagnosed...
Judy
Obviously more congrats are in order, as this is a doubler ppost also good luck with the reversal surgery. I'll be thinking if you.
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Thank you!!!Trubrit said:Congrats
Obviously more congrats are in order, as this is a doubler ppost also good luck with the reversal surgery. I'll be thinking if you.
Thank you!!!
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Thank you
Thank you to everyone who replied to my post. I/we really apprecitate all the caring people here on this site. Like I've said before, I honestly think that the positive attitudes & stories here on this site are what has kept me sane since Jason's diagnosis. So again, THANK YOU ALL! Please continue to keep him in your prayers.
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Dear Kris,
First of all,Dear Kris,
First of all, know that you are not alone. We thought my mom was in remission from her colorectal cancer only for her to end up in the hospital and be told that she would die. That there is no "cure" for her just "treatment". I was devastated. I can't even understand how she felt. But I will tell you this. At the end of the day, I believe in a higher power, the love of those around you and sheer will. My mom is now on her third round of chemo-Folfiri and Zaltrap with the bone strengthener Zometa. We made a pact as a family that for every bad day mom has, any good sign is gravy. Positivity and love really do work wonders. At the end of the day, there are so many beautiful people on this board who are overcoming the odds with their positivity and love. A good oncologist works wonders as well. My mom is 71 and even when she is feeling her worst her strength is a testament to her will to wanting to get better.
When my mom was a teenager, she wanted pencil thin eyebrows and used "neat" to get that effect. Needless to say the "neat" took away her eyebrows and they never grew back. Even when she feels crappy, she will get out of her bed and pencil in her eyebrows. She's still doing it. That's a great sign.
I know there will be great signs to come for both of you.
Huggies and love,
Nellie
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