Age 29, metasticized to Lungs from Stage III Colon

toddpern

Hi,
My friend was diagnosed with stage III colon cancer in Feb 2002. Had surgery and chemo which ended Oct 2002. Today he was diagnosed with metastatic colon cancer to the lungs. He's going to be going through chemo again to try and shrink the tumors and provide the best "quality of life" possible. He's onlly 29 years old and it's been very hard on him. They're going to try a new treatment combination that just came out after his first round of chemo.

Does anyone have any feedback to offer as this prognosis? Does anyone know of what the lifespan is with someone who has metastatic to the lungs? Anyone else going through this? What works, doesn't?

Please give me some thoughts, prayers and comfort.

Thank you,
Shane

KrisS

Shane- I am so sorry to hear about your friend's recurrance. He must be very scared. Although this is tough break there are several new drugs available for treatment that have become available within the last 2 yrs. Oxaliplatin was approved 9/02. I was diagnosed with stage 4 disease at that time and have been on it continuously for the last year with good control of my tumor which had spread to the liver and lymph nodes and possibly the lungs.

Avastin, a drug which reduces the ability of blood vessels to grow in tumors was approved just at the end of March of this year. Several people who I know of have had impressive response to this drug along with chemotherapy. Erbitux (of Imclone fame) is another drug that was approved 3/04 and as an epidermal growth factor inhibitor reduces the ability of tumor cells to divide.

I don't know how many nodules your friend has in his lungs. If they are few in number, sometimes they can be surgically removed, or treated with RFA (radiofrequency ablation) or sometimes with radiation. More numerous small nodules are better treated with chemotherapy.

Athough there are statistics for survival, statistics provide only averages. That means that there are many people who do better than this. Remember even if the prognosis for long term survival is only 1%, if you are that one of a hundred, you are a 100% survivor!

Andrea, a most energetic and couragous person on this board (who is scheduled to have her lung nodules surgically removed following shrinkage with chemo) pointed out a few days ago, most people with colorectal cancer are older and the statistics are based mostly therefore on people over 50. The statistics may not apply to younger people.

Tell your friend to keep his chin up and keep fighting. There is hope.

My thoughts and prayers are with you both.

Best wishes,

Kris

nettie4

hello shane. i am 34 and had mets to my lungs. this is also a recurrence for me too. originally dx at 28. this is a scary time i know all to well and as kris pointed out there are many drugs on the horizon. the first thing is that your friend needs to find an onc who is agressive with this disease if your friends is not. i had a total of 17 tumors removed from my lungs in mar 03 and still fighting one stubborn one. i am on folfox6 which is oxcili, 5fu, luc, and avastin. i have had great results with this combo. become very educated and keep supporting your friend we dont know what the future holds for us. there are alot of surviors out there, but you must fight. and to me you fight with all the knowledge you can get, and aggressive doc, and lots and lots of prayer. i hope your friend finds the best treatment and try not to become to discouraged. its a lot to handle all at once, but keep a positive attitude and keep fighting.

nettie

jsabol

Hi Shane, Sorry to hear of your friends recurrance; he's lucky to have your support. Some good advice here; keep seeking info and answers, and lots of surviviors with mets to lungs. As Kris said, someone has to be in the survivor stats, so it may as well be your friend!
You will both be in my prayers, Judy

Unknown

Hi Shane:

I'm so sorry that you have the need to be here...but glad that you turned to one of the best support groups on this terrible disease that the net has to offer. As Judy said, your friend is very lucky to have someone like you in his life. Continue to be supportive and tell your friend not to give up...there's still a shot at cure and with the many new drugs out as well as other's on the horizon, who's to say he can't be a long term survivor. Only one individual has the power to determine that and HE doesn't life here!

Welcome and please keep us posted.

Monika

kangatoo

unknown said:

Hi Shane:

I'm so sorry that you have the need to be here...but glad that you turned to one of the best support groups on this terrible disease that the net has to offer. As Judy said, your friend is very lucky to have someone like you in his life. Continue to be supportive and tell your friend not to give up...there's still a shot at cure and with the many new drugs out as well as other's on the horizon, who's to say he can't be a long term survivor. Only one individual has the power to determine that and HE doesn't life here!

Welcome and please keep us posted.

Monika

Welcome Shane--aren't the guys here amazing.We are all in this together to try and offer as much support and advice as is possible.
You are obviously very concerned to have sought out this board and these guys will help yu all the way.
Your friend is so lucky to have such a very special friend in you.Although it is very sad to have a friemd in this situation please try to understand that he will have many fears/anger/depression stages and that these can be overwhelming at times.The old question; "why me?" will suface and it is difficult to predict his emotional stte at times.
Be there for him always and allow himto vent his frustrations to you.I know you will do this with all compassion--but it will be a hard road.
We send our love and support from Australia.You will make life so much easier for him by just being there.Keep faith with you--cancer is lifethreatening but not always a death sentence--there are many here to prove that!

Our very best--kanga n Jen

toddpern

KrisS said:

Shane- I am so sorry to hear about your friend's recurrance. He must be very scared. Although this is tough break there are several new drugs available for treatment that have become available within the last 2 yrs. Oxaliplatin was approved 9/02. I was diagnosed with stage 4 disease at that time and have been on it continuously for the last year with good control of my tumor which had spread to the liver and lymph nodes and possibly the lungs.

Avastin, a drug which reduces the ability of blood vessels to grow in tumors was approved just at the end of March of this year. Several people who I know of have had impressive response to this drug along with chemotherapy. Erbitux (of Imclone fame) is another drug that was approved 3/04 and as an epidermal growth factor inhibitor reduces the ability of tumor cells to divide.

I don't know how many nodules your friend has in his lungs. If they are few in number, sometimes they can be surgically removed, or treated with RFA (radiofrequency ablation) or sometimes with radiation. More numerous small nodules are better treated with chemotherapy.

Athough there are statistics for survival, statistics provide only averages. That means that there are many people who do better than this. Remember even if the prognosis for long term survival is only 1%, if you are that one of a hundred, you are a 100% survivor!

Andrea, a most energetic and couragous person on this board (who is scheduled to have her lung nodules surgically removed following shrinkage with chemo) pointed out a few days ago, most people with colorectal cancer are older and the statistics are based mostly therefore on people over 50. The statistics may not apply to younger people.

Tell your friend to keep his chin up and keep fighting. There is hope.

My thoughts and prayers are with you both.

Best wishes,

Kris

Thank you everyone for replying so quickly. It's been helpful. I appreciate it.

Kris, you're on it continually for over a year? How has that year been? Do you feel drained all the time, or do you have good weeks? Are you taking it via a port and at the office? What's your process?

Thanks,
Todd

KrisS

toddpern said:

Thank you everyone for replying so quickly. It's been helpful. I appreciate it.

Kris, you're on it continually for over a year? How has that year been? Do you feel drained all the time, or do you have good weeks? Are you taking it via a port and at the office? What's your process?

Thanks,
Todd

Todd-Yes I have been on oxaliplatin for a year. I just received my 24th dose last week. I have had a port from the beginning 6/02. That is a godsend. I have heard that oxaliplatin can cause a lot of discomfort during injection through a vein in the lower arm. A port also makes blood draws much easier. Getting a port put in is a quick out patient procedure.

The side effects of chemotherapy can vary from person to person, but for me it has not been bad. I had been on oxaliplatin with 5-FU from Oct through Dec 2002 before surgery. With that, they gave me a little portable pump hooked up to my port for 5-FU that I wore in a fanny pack for 48 hrs after a 2 hr infusion of oxaliplatin. I worked during that period pretty much full time other than time out for doctor appointments. Yes, I was a bit tired, but I still joined a gym, lifted weights and tried to walk a couple of fast miles 3-5 times a week to get into shape for surgery.

I went back on oxaliplatin/Xeloda (an oral 5-FU like) drug 6/03 after my tumor came back post operatively. Since I knew I would be on this for a long time if it worked, I asked my oncologist if there was anything which might lessen the peripheral neurologic side effects that can limit treatment. So I receive calcium/magnesium infusions before and after the oxaliplatin. It takes 3 hrs total for the infusions.

When I restarted chemo I was pretty debilitated because of my tumor, and moved to be closer to family. After 2 mths, I rejoined a gym, and a month later began occasionally flying back to fill in at my old job-once the day after I got chemo. I continue to work only part time. I could not do the continuous 50-60+ hrs/week that I used to routinely do. The last 4 mths have been a bit rougher- I've lost some weight despite eating reasonably well. I am moderately anemic despite injections of Procrit. This has affected my stamina. I generally feel kind of light headed and tired especially on day 3 and 4 after treatment. This has also become more pronounced during the last 4 mths. Despite this, Saturday I went for an hour long hike (no big hills though)and then went canoeing for an hour 5 days post chemo. I feel great right now, and that will continue through this week until my next treatment.

Initially I had problems with nausea not so much right after treatment, but a couple of days later on day 3 and 4. After trying a few different anti nausea medications, however, I found one that pretty much completely controlled things for me.

Because of my anemia and weight loss, my oncologist would like to give me a break for a while. He would like to switch me to Avastin/Xeloda for a few months.

All and all, it has been a good year.

Friends and family have been a big help through all of this. Just knowing that someone was around to help if need be was such a relief, even though I do most of my treatment stuff on my own. Although by nature I am pretty optimistic, a friend showing up with her silly dog that always wants to go for a walk to get me up and out of the house on days I am feeling a bit down is always enough to get me going. As Kanga and others have said, being there for your friend has got to be such a help to him.

Take care,

Kris

toddpern

nettie4 said:

hello shane. i am 34 and had mets to my lungs. this is also a recurrence for me too. originally dx at 28. this is a scary time i know all to well and as kris pointed out there are many drugs on the horizon. the first thing is that your friend needs to find an onc who is agressive with this disease if your friends is not. i had a total of 17 tumors removed from my lungs in mar 03 and still fighting one stubborn one. i am on folfox6 which is oxcili, 5fu, luc, and avastin. i have had great results with this combo. become very educated and keep supporting your friend we dont know what the future holds for us. there are alot of surviors out there, but you must fight. and to me you fight with all the knowledge you can get, and aggressive doc, and lots and lots of prayer. i hope your friend finds the best treatment and try not to become to discouraged. its a lot to handle all at once, but keep a positive attitude and keep fighting.

nettie

Nettie,
I was reading your response with my friend and he was wondering how long you've been on folfox. Do you get 24 hour injections? How are your side effects? Please let us know how it's been for you.
Thanks,
Shane