Aggressive Recurrence

[KP]

Since many of you followed my story, vis a vis the NY Times etc.. and there were opinions, conjecture etc by many professionals about what would happen next.... PLUS this group has been so helpful to me... I thought I'd share the news.

I was scanned in Sept but it was too soon after surgery to really discern the liver situation. It looked good at the time.. but two weeks ago I was scanned and a 7 cm tumor was found. Its unbelievable that it is so large already!

I began Fulfiri + Erbitux the very next day. I have since done #2 of this course and have #3 next week.

This is a real downer and its very hard to find hope, or muster the fighting attitude to embrace more chemo. The Erbitux side effects are so bad I am not sure if its worth it.

Isabel turns 18 months in two weeks. I feel like I've been fighting so hard for every day I "earn" to spend with her. Its a heartbreaker.

I know I am NOT the only one! Thank GOD for this site. It very comforting to know that others are in this situation. Coping with the outside world, knowing my motherhood is different from most of my peers is also very discouraging.

Sorry for the downer, but at least here its safe to be honest!

[Larry]

Dear KP,

My wife and I have a 2 month old girl. I just finished 12 rounds of fulfox. The ordeal plus the uncertainty of the future is very difficult. On the one hand we are so blesed to have a child. On the other the thought of the possibility of not being around to watch her grow, teach her,protect and love her makes me sad. Hang in there and I hope for the best for you and feel for your struggle.
Larry

[missjv]

i know a recurrance sucks bad but don't give up there have been many survivors who have had multiple recurrances and successful resections of them just because the crap comes back it is not the end at least that is what im going on now with a possible 0.3 cm lesion on the very bottom of left lung it could be cancer it could not be i asked for chemo just in case i will be rescanned in febuary and my doc not to freak out it can be dealt with. i know the thought of having your child grow up without a mother is a horrible thought i have a 9 year old daughter and wonder will i be here when she graduates or learns to drive or her first date but then again i think that no one knows when their time is up i said that to my doc i said do you know if you will be alive 5 years from now and she said no same goes for the rest of us cancer or no cancer. i just feel right now if i have to go through multiple rounds of chemo or multiple surgeries i will do it as long as i can handle it and im happy right now that my over all general health is good i work i run 4 miles a day im at the gym 5 mornings a week i eat only fresh veggies and fruit and fish and i quit eating farm animals and dairy i don't know if that will help but im giving it a try.

missjv

[Guest]

Hi MS JV

You have a great attitude and I like your diet and exercise plan!
Larry

[irish]

hang in there....our prayers are with you!

[MissKim]

It is so hard having a recurrence. I have had several. Anyhow, as a mother of two boys (12 and 10) and a girl (7), I constantly wonder about things and I want to be here to raise my kids with my wonderful husband. I have made it 4 1/2 years after my diagnosis and I want to keep on fighting!! I know I have beat many odds and pray that I continue to do so. Cancer sucks, I don't know what else to say. All of lifes problems seem quite trivial when you are dealing with this evil disease.

Miss JV -- I am so impressed with your exercise schedule and the way to eat. It gives me inspiration. I was eating very healthy and then I slipped a bit. Time to get back on the band wagon.

Miss Kim

[missjv]

well i have seen so many other postings from people who started feeling better with diet change so i am doing it now i have done real well with it not that i was a terrible eater before i always ate fruit and veggies but i smothered veggies in butter and salt which i know is not good so eating them without the good stuff is hard but i bought some different seasonings that i put on and it helps alot also the raw veggies i just dip in some low fat ranch which also helps. i loved steak alot and i havn't had beef in along time and i do miss that and i quit the bacon, ham, chicken. i do like an occasional hard boiled egg and i have just been doing protein shakes for protein and so far im feeling good other then the tired irenotecan erbitux days. as far as the exercise i was that way before cancer i live in florida so i am outside alot i like to run at night in my neighborhood after dinner and to get out of the house and the gym i have always done as well. im trying to do whatever i can to keep this crap from killing me i thought maybe the healthier the rest of me is i can handle that nasty chemo better??? your right this cancer stuff sucks but it is the cards i was dealt with so i guess im just not going to let it kill me anytime soon. happy new year to all and hope 2008 is a good one for everybody.

missjv

[Tamil]

KP So sorry to hear about your recurrance. Can you share your story with us newbies? I tried to do a search but came up with nothing and I would love to hear your story since you started off with no surgery like I am at right now.

[jessicaR_bsn]

I am so sorry that you have to deal with a reccurance. My thoughts and prayers are with you and your family. I totally understand the motherhood thing, I have a 2yr old and a 4yr old. I feel sorry for them that they have a mom who is really sick, the deserve better. So I am going to fight with everything I have to beat this thing. I've had a colon resection, radical hysterectomy in Sept. I will have a liver resection in the middle of Feb and am on Xelox, with Avastin. I will have as many surgeries and rounds of chemo that it takes, to survive for my 2 girls. They deserve to have a mom around to raise them. You need to keep a positive attitude. At least there is only 1 tumor, even though it is big, it can shrink with chemo and you can have it removed. I know it sucks that you just had a resection 5 months ago, but you have to keep fighting for your child.

[FiG-S~]

I totally understand, my daughter is three. Last year, I was informed that I had seven mets to my liver, two of them that were about 10 cm, making them inoperable. I'm currently on my third regim of chemo.

I don't need to tell you all the emotions I've been through.

My faith has gotten me through this chaos. I believe prayers are powerful. If you do, I recommend Dodie Osteen's Healed of Cancer. There are 40 healing scriptures.

Don't give up hope! My prayers are with you.

[Dress In Blue Girl]

Kp,
You and I are in the same town if you want to come to cancer life lines colon cancer group this wed night . I would love to met you. it is a awesome group of people. bring your baby if your up to it. It is very supportative group others in your same situation and not a pity party at all. we really support each other. you can email off line if you would like to know more about it.

[Lifes2short]

KP, I was in a similar situation to yours back on April, '06. I was dx stage III in December, 05 then went through chemo/rad and resection. A month after surgery they found three mets in my liver. A November '05 scan had shown my liver clear. One of the mets was quite large when found. A couple months later I had five mets with the biggest one around 7cm. Doctors warned me that the cancer was very aggressive and gave me a survival window of 6 - 20 months.

I held off on chemo so that I could enjoy life with my kids (now ages 4 and 5). The cancer slowed some during the summer between colon resection and starting chemo. I went on Folfox from Oct. 06 - Jan 07. The Folfox knocked my cancer into remission for a few months. It has since returned, but it has been pretty slow to progress. I was on Folfiri last summer for a couple months and have been chemo free with little progression for the past four months.

My point is not to give up hope. It may have grown fast for awhile, but it can slow down. Chemo can be very helpful in controlling it. You could get several years with your child. I still hold out hope that a cure will be found while I am fighting this thing. Try to stay as positive as you can. It is so hard to think about leaving your child. I understand that. I will fight this thing as long as I possibly can.

[KP]

Miss JV - golly I wish I was that dedicated to my health! I agree, you are an inspiration. Funny, I worked out alot with a trainer before my diagnosis. I know that it was one reason the cancer was kept under control. I ought to try that again.

Thanks for the replies and inspirational comments. I do need to realize that recurrences happen to many people and it turns out okay. I value time with Isabel and ultimately I will do whatever it takes to get more time.

I will reply on "background" separately...

HAPPY NEW YEAR! HOORAY for 2008!

[KP]

Tamil
I was diagnosed 1 week after Isabel was born. In fact, immediately after the c-section I had a banana shaped lump below my ribcage that I inquired about. I thought something had been folded? or left behind. They circled it with a sharpy marker and did NOTHING. After I was home I was so sick (vomiting) that my mom told me to go to Urgent Care or the Emergency room. There they X-rayed my chest and found multiple masses in my liver. After biopsy they determined it was cancer but had to find the primary site - - ultimately my colon. They gave me 6 mo and said don't bother with chemo... I was able to switch my medical insurance coverage and get a 2nd and 3rd opinion. Ultimately I began chemo and had treatment for 22 cycles. I was deemed "inoperable" but found a surgeon at Johns Hopkins willing to try to operate. All of the cancer was removed, but the margins were close. (4 liver tumors & colon resection)
Surgery was in June 07 - about 11 months after my original diagnosis.

What a crazy journey!
Now, I am back on chemo and wondering what will happen next!

[missjv]

hi,
well before cancer i thought for sure it won't happen to me i exercise, eat pretty much right wasn't a huge drinker just maybe a party here or there, i quit smoking back in 97 before i got pregnant, i watched lables i did everything to try to stay healthy and boom here i was at 39 with stage 4 colon cancer from a polyp no larger then a pea that i did not have any symptoms for. i went for a colonoscopy just as a basline because my uncle had died of colon cancer but he was near 80. i was doing the exercise eating right thing alot due to heart disease in my family my dad and his sister my aunt and my grandparents all died in the age 40's and early 50's due to heart problems. the running now is my way of just getting out of the house and i guess trying to run away from it my neighbors call me forest gump and my daughter goes along side of me on her scooter or her bike sometimes which is giving her exercise. the whole thing to me is still so weird cause i feel good i look good so people tell me, yet now i might have this crap on my lung base i have a 0.3 cm spot but not confirmed cancer but i would bet my pants that it is. the erbitux and irenotecan is starting to kick in and i am more tired then last chemo with irenotecan alone but i guess thats what i have to do i plan on seeing my daughter graduate high school and go off to college and she is only 9 now. well hoping that 2008 is better for us all then 2007 was. and kp have you asked about the hepatic artery pump for the liver? i had one put in during my liver surgery and received 6 treatments to it along with systemic and i think it has helped so far as of yet nothing has grown back on the liver i don't know if that is something johns hopkins does or not but it might be an option but hopefully you can have your tumor removed surgically and be done with it.

missjv