Stage IV Unite...

[Ellen]

Hi,

I'm just so saddened by the loss of so many members of my "cohort"--stage IV folks diagnosed a couple years ago. In the last few months we've lost Alisa, Brady, Jeff, Kelly, Paul and others. (Please excuse me if I've left out some friends we've lost--I'm sure that I have....but at this moment I'm too overwhelmed by emotion to think through this clearly.) I'm interested to hear from other Stage IV folks of this "vintage", how you're doing, and what treatment you are on.

I've had recent progression of liver and lung mets after a year on folfiri, first with Erbitux and then with Avastin. Now I'm on "maintenance" (5fu + avastin) while I try to get on a clinical trial.Despite the cancer and treatments, I feel good and have a good quality of life. I'm hoping it will continue!!

I look forward to hearing from folks. I wish each of you good luck and good days ahead.

Ellen

[mninnc]

I have noticed this trend also.

I am currently looking for another Clinical trial. I stopped standard treatment in December since it no longer seemed to be working. I participated in a trail at Duke and that held it steady until I had to stop treatment due to side effects.

I also feel great considering I have active tumors on liver, lungs and lymph nodes. The way I look at it I am in great shape except for having cancer.

Hang tough

[jdepp]

I am not officially in your cohort, Ellen, but I'd like to give a big "stage IV 2008" shout out to all of you whose posts meant a lot to me when I was diagnosed last year.

Be well!

[HDLadyRider]

Hi Ellen,

I don't really post often and I'm not the sick one, but my hubby is. He was diagnosed September 2007, Stage IV, four large tumors in his liver and considered non-operable. After 8 chemo treatments of Folfox w/avastin, his liver became resectable and surgery on his liver and colon were performed. One tumor did not receive a clear margin but close none the less. He then chose to have his ileostomy reversed two months after that instead of the highly recommended chemo regimen right away. Doctors said because he was at such high risk of recurrence, they really wanted to do the chemo and then the reversal. Hubby won the battle and got his reversal first. First scan showed a "new" tumor growing so as soon as he could it was back to chemo. My dear husband has been NED since October of '08 and I swear he breaks all the rules...drinks his fair share of beer, loves to eat beef, etc.....

If you wanted a promising story amongst all the grim stories we've had to share recently, I think this is one. I too have been heart-wrenched over so many losses lately.


Hugs to all...Janine

[Guest1]

My father is still around, despite having been diagnosed in the Spring of 2005. That said, he's not doing that well, and has tumors all over the place. However, he hasn't reached the end of chemo effectivness yet, so I'm hoping he'll hang on for a while.

[Diana]

If you see my history below and read my previous posts...I was given 6 mo at diag., April 2007. I feel fine, I'm not sick..I have cancer! (I'm ignoring my neuropathy and hand & foot Xeloda gift as best I can )

[justsing]

I'm still doing really well.

Looking forward to a little summer vacation from treatments, and hoping that the cancer doesn't have too much of a party while the chemo is out of the house! I keep envisioning the Cat in the Hat and Thing 1 and Thing 2 just tearing the place apart!

Anyway. I played 4 sets of tennis last night and held serve the whole time. Then I came home and had ice cream and snickerdoodles. Life is good.

[Shayenne]

My onc never gave me a prognosis because of all the advanced treatments and tecnology out there, she had patients who she thought wouldn't make it through chemo, and she sent them off to get their livers treated and are still here! some of her patients surprised her, and are living longer, but no matter what I have, I make the most of it, and live it like tomorrow will be my last. Don't let this beast get you down, fight it, and think positive thoughts, plenty of people living out there a long time with this disease....stay off the internet, it is outdated, and who knows what or what not the individuals had or didn't want when they became a statistic...Just smile through it and don't let it get you down. I am Stage 4, with a tumor in my liver, am on my 6th treatment of Folfiri, and my first CT scan showed that the chemo has killed most of the cancer, I was so bloated when I was first dx'd as well, over 20 lbs, that I am lost it all, and even though I do have side effects, I still feel better, I had such a discomfort before chemo, that it is helping, and hope I can get through this next half of my treatments...6 more to go!

~Donna

[fourT's]

My husband was diagnosed as stage IV in 4/08. He had a few mets to the right lobe of the liver and had liver resection surgery 10/08. He did a few more months of chemo and received a clear Pet Scan in 2/09. Now we are dealing with another met to the right lobe. We are waiting to see the liver surgeon on 6/19 to see if another resection is possible. Most likely will be starting chemo again later this summer. He has completely changed his diet. He has almost completely cut out all animal protein (dairy, meat, etc.), eats a tons of veggies and fruits and taking supplements. He wants another Pet before any more surgery or chemo to see if the "nutrition thing" will work on his cancer.

Be strong everyone!

Tracy

[Suze]

Hi Ellen -- You and I were on the same trial at the same time here in Portland. Same "arm" too! I was dx in May 07 and told I could expect to live another 2 years. Six months of Folfox plus Avastin plus cetuximab, then surgery for colon and liver, then 6 months of Folfox plus Avastin, plus another 6 months of Avastin only. No chemo since Feb. 09. I have had clear scans since June 08, last one in April, the next in July. Like most of us, I live from scan to scan. I have no idea why I am doing well at 61 when so many people much younger than I am are not. I guess the main thing is to enjoy each day as it comes. Susan

[Lifes2short]

Funny thing Ellen, I was just thinking of you this evening and sent you a PM.

My official status three and a half years into the battle: Several mets in my liver, bone mets in my spine, sacrum, hip and rib, lots of node involvement. I've known that I need to get back on chemo since last fall - delayed by one thing after another... radiation for spine met, frequent inexplicable bouts of vomiting, intrathecal pain pump implant. The pain pump changed my life, I was even convinced that my cancer must be in remission. But the scans showed progression. Started Irinotecan and Erbitux a couple weeks ago. Hoping for a good response.

I'm certainly not the person I used to be, but my quality of life is pretty good. I still manage to enjoy my kids, fly fish, walk my dogs... even went skiing a couple times last winter. I still have hope. Every day is worth living!

[kimby]

Ellen,

I agree, it's been a very difficult time in canzerLand. There are still so many of us doing well. It is so difficult to grieve our losses and celebrate our victories simultaneously.

I progressed to liver mets on folfox and added celiac lymph node involvement on folfiri w/erbitux. That got me 17 mos from diagnosis and to my 5th surgery in that time. Open/close liver resection, liver rads (external beam) along with a new cocktail: mitomycin c (used for anal canzer), avastin and xeloda. This was my Hail Mary chemo. As of last month I'm now "No Evidence of Active Disease". My doctors are using words like "stunned" and "miracle". They are working with the geneticist to identify why this worked for me, are developing a clinical study on my treatment and how it relates to targeted therapies at the stem cell level. Go figure. In January my prognosis was dismal.

Another cycle of chemo this morning, round ending in August. We'll see long term but I'm hopeful. I have time. Hope and Time.

Kimby

[Littlefish]

Hi Ellen,
I guess I have some relatively good news to share- just released from hospital today after my liver resection. The surgery went really well, although the liver tumor had grown a little in between finishing chemo/radiation mid march, and my Rectal surgery 5 weeks ago. But it was still only 2.40cm and he successfully took it out half my liver and all clear on the margins for the pathology. A CT 2 weeks ago showed nothing else. Back on FLOFOX chemo in 4 weeks. We're waiting in Australia to see if Avastin is put on out federal funding scheme on July 1st and what the exact wording will be. It's rumored to be for metastatic colorectal cancer, but my oncologist said this morning that if the government wants proof of current metatsatic activity then technically I don't currently have it. But, oh boy, this is sooooo painful again. I'm having so much trouble moving and my poor stomach keeps seizing up- guess it's been through a lot this year. Painkillers aren't really covering it. I take it as a blessing that I have wonderful doctors and also reading up on here keeps me impowered.
Kimby's news is so great- I'm inspired.

[Boydie75]

Hi Ellen

First post from me and my good news. I was diagnosed stage 4 last year in October with a 2cm liver met. I had the bowel resection but I was told the liver met was inoperable, possibly against main vein. Got a second opinion from a liver specialist who said he could get it all. Went on chemo clinical trial of Folfox and double blind of either Avastin or Recetin (pill based VEGF blocker) and after 4 months the met had shrunk to 1.1cm so surgery was recommended. Had the liver resection 4 weeks ago, they took the entire right lobe and got clear margins.

Having an MRI (can't have CT, allergic to contrast) tomorrow to confirm liver is healed enough to start 3 months of mop up chemo. The pathology showed that the liver met had been almost completely killed by chemo so i'm hoping that any stray cancer cells have also been killed off, if not the next 6 cycles will get sort them out.

I guess i'm newly NED now and determined to stay that way.

Kath - If Avastin only gets on the PBS in oz for metastatic cc then look for a clinical trial that will give you (free!) access to it. My clinical trial people are keen to continue the trial even though i am NED and they are even looking to give me Avastin/Recetin only beyond the 3 months of chemo.

[cherryames]

I mostly lurk here, and get a lot of information from all of you. I was DX 7/06, stage IV, and had a colon resection with a temporary colostomy. Chemo followed, and then I had a liver resection 12/06 with a colostomy reversal. I have been NED since then. At every CT I expect the worst but I have been amazingly lucky. I am 62, older than most of you, and I don't know if that has anything to do with anything. I have been devastated by the losses here recently, not to mention frightened by them. I still have a lot to live for, like a new grandchild coming soon. It breaks my heart to see how young some of you are, raising small children, and hoping to see them grow up. I pray for all of you, and I'm so grateful to have found this board.