Remission or what?

juliatheena

Hi! I'm new to this site. I live in So Calif, am a homemaker with 3 sons, 14, 12, and 9. In May of 2007, I was having some fatigue and a lingering cough. I saw my primary and was sent for a lung xray. Three wks and a liver biopsy later, I was diagnosed June 2007 with stage IV colon cancer, mets to lungs and liver. I receive chemo at The City of Hope, Duarte, California. I had 7 rounds of Folfox, had a reaction to the Oxaliplatin, continued with 7 rounds of Folfiri. Very little side effects, mainly fatigue for about 5 days. My last CT scan showed no further shrinkage, my CEA level is at 2.7...considered to be in remission.

My Onc has proposed 2 options:

1) Continue chemo to keep the cancer in check

or

2) Take a break from chemo, CT scan every 2 months.

I'm at a crossroads now. I've been feeling very torn, very mortal. My onc has said that she is very impressed with my progress and have done WAY better than most. I am leaning towards the break so I can get some energy back, a bit of normalcy in my family's life.

Has anyone here had a similar situation? I have been tossing this around since last Wednesday and am still not sure what I'm going to decide.

Thanks in advance,

Julia

jenhopesprays

Hi Julia,

Big, big hugs to you. This whole cancer gig specializes in making us feel very mortal. .

How many mets did you have? Are any of them visible on the PET on the liver or the lungs? You say the scan showed no further shrinkage? Do they see anything?

I also went to City of Hope and almost had my liver surgery there. I think a second opinion is in order and I would like to recommend Dr Lenz and USC Norris Cancer Center.

He was very helpful to me and helped me make the right decision (and I think best decision) for me. UCLA was a bust for me.

We have a very similar life. I am also in So Cal with a 14 and 12 year old and also a 18 year old and also a homemaker. I was dx August 07 and had mets to the liver. I am still finishing up my chemo and had liver surgery to remove the mets.

It would be my pleasure to talk to you anytime. Email me through this site or I will post my email for you if you want...just ask.

Love hopes all things,

Jennifer


PS:

I would also like to recommend a few VERY helpful sites:

ACOR.ORG sign up with the colon cancer group. Very informative with a paid expert on board.

mycrcconnections.com --- Very cool My Space style site with survivors. Read about Stuart, Susan and Chip. They have stories a lot like ours and may be helpful if not encouraging to you.

apache4

Welcome to this site...it is a wonderful place to share experiences and to learn from others. Of course, it sucks that any of us have to be here at all. I was dx. 6/06 with Stage IV. Same symtoms as you, the fatigue and lingering cough. My mets are only to my liver, but there are so many that no other treatment is available...just the chemo. I did 16 treatments of Folfox and 8 of Folfiri. I just found out that the Folfiri didn't work as my tumors have grown. Anyway, in September they did a PET scan which showed all those initial liver tumors "dead" and my onc said I was in remission. A scan 3 months later showed new tumor growth and that is when I started the Folori. Meanwhile, I moved from East Texas to Tampa and am being treated at Moffitt Cancer Center which is a major one just as The City of Hope is. My onc here said that I wasn't in remission, that it is not possible with Stage IV, and that the cancer cells can be where the PET can't pick them up. I start Erbitux after I come back from a trip to Ca. I, too, tolerated the chemo well although I have the neuropathy in my feet from the Oxaliplatin. It has also taken me longer each time to get some energy back.
I understand how torn you must feel especially with a young family to consider. Are they stopping the Folfiri because of the remission or did you have a reaction to it? Many on this site are in remission from Stage IV so, I am a bit confused myself. Will they be doing blood work every week? That was the first clue that I might have a problem again as my CEA went up.
I am sure you will make a wise and well-informed decision. Everyone is so different that we can only decide what is best for our situation. My best to you. Linda

apache4

? Erbitux, Avastin & Irinotecan
Has anyone had these three infused all at once? I am getting real chicken about this. I have some time before I do it, but after researching I am wondering if it will be worth it. I found some research that has good stats...just am scared of a bad reaction...like dropping dead during it. It seems like such a potent mix...

KathiM

I was only stage 3, so I was not facing this decision...for me, it was '..... to the wall', all out battle before it spread.

How are you feeling? Can you live with the thoughts, if you stop? Are you fed up with the treatment? These are all questions you need to ask yourself...I took one less round because I felt like ENOUGH!

Hugs, Kathi

apache4

apache4 said:

? Erbitux, Avastin & Irinotecan
Has anyone had these three infused all at once? I am getting real chicken about this. I have some time before I do it, but after researching I am wondering if it will be worth it. I found some research that has good stats...just am scared of a bad reaction...like dropping dead during it. It seems like such a potent mix...

Please ignore on this message. Computer giving me fits..will repost

pamness

apache4 said:

? Erbitux, Avastin & Irinotecan
Has anyone had these three infused all at once? I am getting real chicken about this. I have some time before I do it, but after researching I am wondering if it will be worth it. I found some research that has good stats...just am scared of a bad reaction...like dropping dead during it. It seems like such a potent mix...

I don't know enough about these drugs to be helpful. I was Stage IIIA and did the now routine folfox - I asked my chemo nurse once how likely it was to die from an interaction of chemo drugs or just from the drugs. Her reply was "not at all likely, even if you have a reaction it is much scarier to the patient than to the nurses, we deal with this all the time." Since I had a horrible time with the drugs, for some reason this made me feel better and less afraid. I have read many of your posts and find it hard to imagine, that you will not deal well with this new regimen. All my blessings.
Pam

mykidsmommy

Well, I never thought I would be saying this but..GIVE IT ALL YOU'VE GOT - TAKE THE CHEMO - DO WHATEVER YOU CAN - I am 35 with two little kids - as a stay home mom too I wanted nothing more than to make life normal for my kids - getting through 12 treatments was so hard mentally and emotional for me -each time I would announce to my husband " I am done - I am quitting and not going to finish the rest" I had to do overnight every other week in the hpital for my chemo- 48 hour drip - But here's the deal : you gotta give this all you got - your kids need you - and if this were them asking the same question YOU would want them to do WHATEVER they could and ALL they could right??? No one says this is easy - There is a reason they call you a "survivor" - it is an action verb - a very hard - action verb - something you must do - SURVIVE! SOmeone said to me (when I was questioning finishing all the treatments and wanting to be DONE ) he said " Your doc is throwing everything and the kitchen sink at you because your young and he wants to save your life". He was right - and I am sure my kids are glad I did - yes it took a little longer to get our lives back - but I feel better and sleep better knowing I did all I could - God bless you and give you the strength you need to do this!
Honor