newly diagnosed recurrent colon cancer with liver and lung mets
Comments
-
Welcome
Hi TLH,
I'm sure some of our Stage IV members will join in once they have a few minutes but wanted to say......
Of COURSE your onc said only chemo. All he sells is chemo.
A Japanese study showed removal of lung nodes can be curative. :-D0 -
Hi TLH
Sorry to hear about your diagnosis. For starters, steer clear of statistics unless you are at the horse track and are betting. The data is old and takes into consideration so many factors that have nothing to do with YOU. I've been at Stage IV colon Cancer for over 6 years and I'm doing VERY well. I am not NED (No Evidence of Disease) I still have spots in my lungs that they are not sure as to what they are. Right now I'm on a 2 month chemo break that should reveal what we're dealing with in another 6 weeks or so. Anyway, back to you.
Lately there has been a lot of discussion/debate on this site about different ways to treat/cure/control/live with/etc... cancer. I think it's safe to say that the majority of us here are going the chemo and surgical route while others are doing surgery then alternatives like dietary changes or TCM (Traditional Chinese Medicine). I can only give my experiences with the chemo and surgical route. I have also changed my diet somewhat but that's here nor there.
I take it that you had CC before? What treatments/surgery did you have? I have had very good success with the drugs Avastin and Erbitux. The Avastin shrunk tumors that I had in my liver (I had many) and made me operable. The Erbitux has eliminated or stabilized many of the tumors I had in my lungs. I think that going the chemo route first is a good idea and see how you react to that. Then if you need to have surgery you do. That's my opinion on this.
Chemo has become less invasive to the rest of the body over the past few years. They have been able to develop drugs that can target the cancer and do less harm to surrounding areas.
Good luck.
-phil0 -
Hi,
I am sorry your cancer
Hi,
I am sorry your cancer has re-occurred. I am someone who has not yet had surgery for either the colorectal cancer, or the mets on my liver. I am on folfiri + avastin; prior to that I had radiation + folfox. My cancer is shrinking, in fact the two colorectal ones are "not detectable". Good luck with your treatment + welcome to the site.0 -
Liver surgery.PhillieG said:Hi TLH
Sorry to hear about your diagnosis. For starters, steer clear of statistics unless you are at the horse track and are betting. The data is old and takes into consideration so many factors that have nothing to do with YOU. I've been at Stage IV colon Cancer for over 6 years and I'm doing VERY well. I am not NED (No Evidence of Disease) I still have spots in my lungs that they are not sure as to what they are. Right now I'm on a 2 month chemo break that should reveal what we're dealing with in another 6 weeks or so. Anyway, back to you.
Lately there has been a lot of discussion/debate on this site about different ways to treat/cure/control/live with/etc... cancer. I think it's safe to say that the majority of us here are going the chemo and surgical route while others are doing surgery then alternatives like dietary changes or TCM (Traditional Chinese Medicine). I can only give my experiences with the chemo and surgical route. I have also changed my diet somewhat but that's here nor there.
I take it that you had CC before? What treatments/surgery did you have? I have had very good success with the drugs Avastin and Erbitux. The Avastin shrunk tumors that I had in my liver (I had many) and made me operable. The Erbitux has eliminated or stabilized many of the tumors I had in my lungs. I think that going the chemo route first is a good idea and see how you react to that. Then if you need to have surgery you do. That's my opinion on this.
Chemo has become less invasive to the rest of the body over the past few years. They have been able to develop drugs that can target the cancer and do less harm to surrounding areas.
Good luck.
-phil
Hi Phil, thank you for your sharing your treatment as it is very encouraging to here about long term survival. The oncologist appearently would like to shirnk the tumors and then see if surgery is an option. The radioligist has mentioned that the disease has affected less than 25% of the liver. They are not concerned about the lung mets as they are focusing on the liver. His comment was that if they tried to remove the lung tumors, more would show up sooner or later. I have read so much on the internet about ablation and so forth that it can literally put your mind on the insane status! I have had enough of that. The most difficult part for myself and my better half is the fact that the oncologist mentioned a two year window and on the next breath, he mentions patients who have survived more than nine years on just chemo and has one individual who travels extensively and gets only have his suggested chemo and his tumors are at bay. I am not suppose to start my chemo until after June 5th. My onco said it would be ok to wait that long as my only daughter is getting married on that day. I pray the tumors are very slow growing as I would not want to waste precious time. Thank you again Phil and I would very much like to chat again soon. Terry0 -
sorry for the recurrence
Hello,
I'm sorry to hear you're dealing with a recurrence/metastasis. Phil said it well with all that he said & he's a good example to show that 2 years isn't the end of the road. Weird that your onc told you 2 years, then gave examples of people who are living much longer than that. I guess he's going by statistics, then showing examples of people who have been exception to the statistics. As Phil said, however, don't believe those statistics! By the very nature of being a statistic, info from statistics is ALWAYS outdated- the info has to be a minimum of 5 or more yrs old, as statistics are created based on who's still alive 5 yrs later. There have been so many advances and drugs now available through clinical trials that people can definitely live longer now & I've heard of several stage IV patients who have even become NED (no evidence of disease).
I'm stage IV also & have been so now for exactly 2 yrs, 8 mos & I'm still quite alive and kicking! I'm still in treatment, but I am really otherwise healthy and still function quite well as a busy mom of three.
Depending upon whether you're a candidate for it or not, options in addition to chemo are out there- cyberknife, stereotactic radiation, RFA, plus even other newer radiation options. Then there's the whole holistic route, as well, that some folks on the board have done (2bhealed- Emily, John, Scouty). Emily was stage III, but has no sign of cancer after many years and I think Scouty and John were stage IV, but not totally sure on that.
One thing I would personally caution you on... if I were you, I do not think I'd wait to start on the chemo until after your daughter's wedding in June. Hopefully what you have is slow growing, but you just don't know that & that's still another two months from now. Mine may be faster growing than some, but I know that two months of no treatment at all when I have active tumors growing would not be good in me- I've discovered that recently the hard way (a particular treatment that I took didn't work & so then it equaled to having no treatment(that worked, anyhow) for over three months. If you're taking either Folfox or Folfiri, you should be okay, especially if you time the treatment prior to the wedding to being at least a week beforehand. I've always experienced feeling lousy w/ those particular chemos for a few days after treatment, possibly up to a week afterhand, but not more than that. For example, if the wedding is on a Saturday, you should be fine if you time the treatment for the Tues or Wed of the previous week. I know preparing for a wedding is a big deal, but then again- so is saving your life! I'm sure you'll be fine, but it makes me nervous when I hear of people putting off treatment when they really should start on it right away. I imagine your onc can look at your most recent scan and tell you how big/small everything is & whether it's really a risk to wait or not. My personal worry for myself on waiting is not neccesarily how big the existing tumors will grow in that time, but with if it's going to spread to other locations/pop up somewhere else in the mean time.
Blessings to you & know that you do have several options!
Lisa0 -
Hello TLH
Welcome to the board. I am so sorry you have a recurrence in the liver and lungs. My hubby also has mets to the liver and lungs and to be honest, is doing quite well. I really can't add more than the others have said.
I do agree with Lisa, don't put off chemo for two months if your oncologist is recommending that you start sooner. You don't want things to progress further or get out of control. They can always adjust the treatments for the wedding. Yes there is a lot to do in preparation for the wedding but beating down these mets is more important.
My husband continued to work full time while in treatment. I rememer the oncologist telling us that if we wanted to plan a vacation or something to just let him know and they can adjust the treatments around the event.
My husband does not have any surgical, radiation, etc. options at this time but who knows, if he keeps doing well what may be available around the corner.
Take care and when you find out what kind of treatment they will be recommending let us know and you can then get an idea of any side effects.
Take care - Tina0 -
Hi...I'm new to this posting
Hi...I'm new to this posting thing so forgive me if I mess up a little or get my medical terms wrong. I had a large mass on my colon which was removed 9/11/06. No chemo or radiation was deemed necessary at that time, but a year and a half later a pet scan showed tumors on my liver and lung. I started chemo immediately, 5FU, folfox, avastin and a clinical trial drug. Ugh...not fun, but I got through it. My daughter got married in the middle of the 11 rounds...so I took 5 weeks off in the middle of it to gain some weight and strength. During that time I had gamma knife radiation on the tumors...they both "exploded" not really, but they got zapped into nothingness. I was given the option of surgery...but felt so weak from chemo I couldn't face it. My radio-oncologist is the best...thinks way outside the box and was convinced he could get rid of my tumors with the pin point radiation. I finished 6 more rounds of chemo after the wedding, took Xeloda for 6 months, and have now been off EVERYTHING since August. 2 petscans and 3 ct scans later (I've had 21 so far) show NO new activity and blood work shows no detectable cancer. So, things are good. I'm happy to share any of my experiences if it sounds like you're heading down the same road. I interviewed docs at UCLA, USC and UCSD. Did all my treatment at UCSD...I went to MDA for a second opinion...but I've been very happy with SD. Laurie0 -
I am sorry as well to hear
I am sorry as well to hear about the reoccurence and the timing
. I had anal cancer that spread to my liver....and before that, in between these two, a diagnosis of a completely different lung cancer. I did the chemo and radiation for the anal cancer....removed a 1/5 of my lung a couple of months after finishing treatment. Then had a liver resection this February. Removed 1/5 of my liver. I am 51. I am not choosing to do chemo at this point. My oncologist of course thinks I should for preventative measures. My surgeon doesn't believe it's necessary. He said with my cancer, it is probably going to come back but could be 2 years, 5 years, whatever, hopefully never....and taking chemo now won't prevent it from coming back. Anyway, a little different than colon cancer I'm sure......but it is still a very personal decision, even though we reach out to hear what others have done. I am doing the dietary changes, and some eastern therapies.
These doctors think they are God with their mortality time frames. Coming to this site, can show you how wrong they can be. Mine tells me every time I see him, This tumor will come back....OK I get it...go out and ENJOY every minute of life. I told him well you could die tomorrow....all of us are going to die, cancer patients just have the misfortune of having their mortality dangling in their face!
I hope your treatment, whatever it is, treats you well, and you see many grandchildren in your future!!!!0 -
You can get through treatment and a weddingtootsie1 said:So sorry
I'm so sorry about the recurrence. I pray that you will get great medical care and overcome this latest challenge.
*hugs*
Gail
My daughter got married 5 weeks after my resection and chemo and I was able to dance every dance. I wouldn't wait till June to start. Get started now, and postpone a week for the wedding. You will do fine. And ignore statistics, they aren't made for YOU! God bless you on your journey.0 -
Hi TerryTLH 48 said:Liver surgery.
Hi Phil, thank you for your sharing your treatment as it is very encouraging to here about long term survival. The oncologist appearently would like to shirnk the tumors and then see if surgery is an option. The radioligist has mentioned that the disease has affected less than 25% of the liver. They are not concerned about the lung mets as they are focusing on the liver. His comment was that if they tried to remove the lung tumors, more would show up sooner or later. I have read so much on the internet about ablation and so forth that it can literally put your mind on the insane status! I have had enough of that. The most difficult part for myself and my better half is the fact that the oncologist mentioned a two year window and on the next breath, he mentions patients who have survived more than nine years on just chemo and has one individual who travels extensively and gets only have his suggested chemo and his tumors are at bay. I am not suppose to start my chemo until after June 5th. My onco said it would be ok to wait that long as my only daughter is getting married on that day. I pray the tumors are very slow growing as I would not want to waste precious time. Thank you again Phil and I would very much like to chat again soon. Terry
After I had the tumors shrink, they removed around 60-70% of my liver. As you probably know, the liver is the only organ that regenerates. I have had no problems at all with my colon or liver after the surgery. The lungs were a different story. I've had 3 operations and 2 RFA (radio frequency ablation) over the past 4-5 years. They did wedge resections on the lungs in the operations, my last ablation was December 09. On that one I didn't even stay overnight like I did for the first one in 07. Talk about an easy procedure. It seems that like your onc stated that the lung mets tend to respond well to chemo but when they are removed they tend to pop back up again (in me at least). Very many years ago I was a smoker and I had also worked in a print shop operating a printing press for over 20 years. I don't imagine that the chemicals and paper dust did me much good at all. People can survive and even thrive while on chemo for a long time. I've basically been treating the lung mets like they were a chronic illness with doing the chemo (Erbitux and CPT11). I can easily continue this indefinitely and I still manage to do most everything I did pre-cancer. Congrats on your daughter getting married. Who needs to start it before or on that day!
-p0 -
Still waitinglisa42 said:sorry for the recurrence
Hello,
I'm sorry to hear you're dealing with a recurrence/metastasis. Phil said it well with all that he said & he's a good example to show that 2 years isn't the end of the road. Weird that your onc told you 2 years, then gave examples of people who are living much longer than that. I guess he's going by statistics, then showing examples of people who have been exception to the statistics. As Phil said, however, don't believe those statistics! By the very nature of being a statistic, info from statistics is ALWAYS outdated- the info has to be a minimum of 5 or more yrs old, as statistics are created based on who's still alive 5 yrs later. There have been so many advances and drugs now available through clinical trials that people can definitely live longer now & I've heard of several stage IV patients who have even become NED (no evidence of disease).
I'm stage IV also & have been so now for exactly 2 yrs, 8 mos & I'm still quite alive and kicking! I'm still in treatment, but I am really otherwise healthy and still function quite well as a busy mom of three.
Depending upon whether you're a candidate for it or not, options in addition to chemo are out there- cyberknife, stereotactic radiation, RFA, plus even other newer radiation options. Then there's the whole holistic route, as well, that some folks on the board have done (2bhealed- Emily, John, Scouty). Emily was stage III, but has no sign of cancer after many years and I think Scouty and John were stage IV, but not totally sure on that.
One thing I would personally caution you on... if I were you, I do not think I'd wait to start on the chemo until after your daughter's wedding in June. Hopefully what you have is slow growing, but you just don't know that & that's still another two months from now. Mine may be faster growing than some, but I know that two months of no treatment at all when I have active tumors growing would not be good in me- I've discovered that recently the hard way (a particular treatment that I took didn't work & so then it equaled to having no treatment(that worked, anyhow) for over three months. If you're taking either Folfox or Folfiri, you should be okay, especially if you time the treatment prior to the wedding to being at least a week beforehand. I've always experienced feeling lousy w/ those particular chemos for a few days after treatment, possibly up to a week afterhand, but not more than that. For example, if the wedding is on a Saturday, you should be fine if you time the treatment for the Tues or Wed of the previous week. I know preparing for a wedding is a big deal, but then again- so is saving your life! I'm sure you'll be fine, but it makes me nervous when I hear of people putting off treatment when they really should start on it right away. I imagine your onc can look at your most recent scan and tell you how big/small everything is & whether it's really a risk to wait or not. My personal worry for myself on waiting is not neccesarily how big the existing tumors will grow in that time, but with if it's going to spread to other locations/pop up somewhere else in the mean time.
Blessings to you & know that you do have several options!
Lisa
Hi Lisa, thanks for your support. I am forwarding my records to M D Anderson for a second opinion yet this afternoon. They commented on a three day review before setting up an appointment. I am starting to agree that I want to get the show on the road. I feel great and I am still plugging away at work as I own a business with another person and we have been very fortunate to be busy during this struggling economy. I am still very scared of the unknown but after reading some of these responses I feel some relief and encouragement. I believe its difficult at times for all of us going through this unwanting process and decissions we struggle to make. I'll keep you informed with my visit with M D Anderson as I have a good feeling of hope with this facility. Thanks again, we'll chat soon. Terry0
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