Stage 4 survivors

tanstaafl said:

experimental: LEF, orthomolecular supplements and Japanese chemo
1. Diagnosed March, 2010 after 25% weight lost in 3-4 weeks and near total colon obstruction.
2. Distant lymph nodes, para aortic cluster. Unresolved "thingies" lungs and liver with questionable or minor activity. Mesenteric fat invaded and partially unresectable-couldn't get clean margins with presumable seeding to peritoneum, all dead/necrosed at time of surgery by massive granulocyte attack following cimetidine etc.
3. Permanent, massive immunological treatment from 2nd-3rd day of diagnosis, pallative surgery 4 weeks after dx, permanent immunochemotherapy 6 weeks after surgery. 2nd surgery for para aortic nodes 13.5 months after dx.
4. High quality of life - more physically fit, not chemo sick, not symptomatic.
5. Massive reduction of carbs and bad fats, improved diet with liver, more vegetables and herbs, lots of specialized anticancer supplements and lots of IV vitamin C (over 400 large vit C infusions). Use targeted generic drugs and supplements **not** FDA approved for cancer. Still no oxaliplatin, irinotecan, avastin, or erbitux.

Momof2plusteentwins said:

Jen
Stage 4 diagnosed 4/11/12 - rectal tumor,1 liver met. 5 weeks if chemoradiation, 4 weeks off, surgery 6 hours - removed rectal tumor, liver met, and gallbladder. Folfox started 4 weeks later, just finished round 8 of 12. Tired of chemo, all of the usual side effects, the cold sensitivity has gradually gotten worse. Have not been hospitalized any time during chemo or have not missed a dose. 4 more to go, should be finished by dec 17. I have not changed my diet too much. I was a big coke drinker before all this and now can't drink it every other week. I am not working now because I am a nurse on med/surg and can't be around sick people with my WBC so low. I have 4 children - 2 are married and have twin 15 year old boys that are in the high school band. I do go to every football game Friday night to watch them march. Every other week is usually good and feeling good. I have had 2 CT scans that have been clear and next one is in dec. Hope your husband is doing well.
Sandy

Doc_Hawk said:

Fighting fire with fire
Hi Jen,

I was dx'd in May 2010, my Stage IV is due to one met to the right lung and (at the time of dx) too many and too large of mets in the liver to count. I did the 6 weeks of radiation while getting chemo. My white blood cell count bottomed out in Sept. 2010 and put me in the hospital. Treatment started again after about a month, then the WBC got too low again in April 2011 and I went two months without treatment. When I started again in June, my CEA had soared to 2000 and blood work said that my liver was about a week to 10 days away from failure. I've been on chemo ever since only missing a week twice due to vacation in March and a hospital stay with pneumonia at the end of August, beginning of September.

I have to admit that many of the things I enjoy doing I've had to stop or pull back on to a large degree. I love cooking and Sunday was the first time I was able to do so since before going in the hospital in August. I've been on disability due to spinal damage since 1999, so I've filled my time wallpapering my office with academic diplomas. I had to end my Masters in History program one semester short because I had to move from Arizona to Utah. I'm currently pursuing a third Bachelors (this one in Philosophy) but had to put the current semester off due to my health. I intend to finish that one in December of next year and then say farewell to the Ivory Halls of Academia. I'm just getting too tired to maintain classes and I have my own writing that I want to finish and try to get published (I am planning on publishing my first novel as an eBook on Amazon.com by the end of this year.)

Finally, I have had to make some adjustments to my diet according to the blood draws every two weeks. And I'm on blood thinners right now because of blood clots in my lungs, so I've had to curtail foods with Potassium while trying to consume more with Magnesium because that level is dangerously low.

Ray/Doc

Nana b said:

1. How long since initial
1. How long since initial diagnosis?

4 years come November, DT November 2008

2. What made you stage 4? Liver Mets

3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.

Folfox - every other week for 6 months

4. What is your quality of life - do you still work, enjoy everything as you always have.

My body aches more, and I have had 3 hernias so that has slowed me down some.

5. Did you make any life changes - diet, supplements, etc.

Yes, I try and eat all that will help my immune system, D3, Calcium, Tumeric, milk thistle, green tea, berries, greens, a couple other things that aren't in front of me right now.

I had pain in my stomach, felt like big time cramping one weekend when I was at the beach, I came home in pain went to a local doctor, as I had just moved here. She told me it was gas and IBS for 2 months, to go home and do sit ups. I finally demanded a colonoscoy and had to to through extreme measures to get it. Tumor in ascending colon, 7 out of like 14 lymph nodes affected, stage 3, then later Stage 4 with liver mets. Had a liver resection, 60%. I have been NED since, but last January my CEA stated going up. We did a mild Xeloda which I still have 1.5 months to go, but CEA should be at normal range. It had dropped drastically to 8 the last time I got checked. THere wasn't an evidence of cancer on my CT, PET or Colonoscopy, but we figured better be safe then sorry. Not sure if that CEA climb makes me start my 5 year again but,I'm not worrying about it.

My motto is, fight, fight, I haven't been afraid since day one. Maybe shock, but I have just been dealing with it, staying out of stressful situations, and moving on....

joemetz said:

stage IV "fighter"
Greetings

thank you for leading this post. I really needed to read everyone's story.

I'm coming up on my one year since dx'd. (November 26, 2011)
I felt like crap for a long time, and when dx'd I was anemic and they found colon cancer in the transverse colon, which we now know what caused by my radiation treatments for my non-hodgkins lymphoma battle from 1989.

the large tumor was in the transverse colon, only 4mm from the Liver.
the tumor "started" on the outside of the colon, and grew inward and spread to the liver.
so my 'stage IV' might be a bit different than others.

I've had the bag, the port and had 26 treatments of Folfox6 and Erbitux.
had surgery to remove the bag, and they cut out the colon tumor and about 10" of the colon

the liesons in my liver went from 30+ leisons a year ago... and as of July I had only six.!

In September I restarted chemo treatments (after healing from the surgery for 8 weeks) and now I'm on Xeloda and Avastin. And, they are calling this "maintenance chemo".

I have six weeks of treatments under my belt and begin week 7 tomorrow morning.

Quality of life...
honestly, I feel better today than I have felt in over 5 years.
its strange. really strange. But i feel like this is WORKING!

I was eating really healthy for the three months of the summer... but now on Xeloda and my nausea feels like hunger pains and I crave starching foods. (bread, rice, potatoes, veggies) but not much appetite for fruits right now.

I'm back working full time (I had taken over 5 months off work).

I have a problem avoiding the stress... but working hard to make sure I don't get dragged too deep into the stress of work and life.

I've been very frustrated with my faith, and I plan to work on that this fall and winter.
It's hard not to question God on his plan, and the "why me? Pitty party" seems to raise its head to me way too often.

thanks again... and i wish the best for everyone here.

joe

Chelsea71 said:

Jen
Those cookies sound
Jen

Those cookies sound good. When you say "sweetener" do you mean artificial sweeteners such as Splenda and Truvia etc.? This is something that confuses me. I believe that sugar does feed cancer. To me it makes sense to avoid it when possible. I have been "giving" Steve sweetener in place of sugar. Ex. Buying jam sweetened with Splenda, I baked muffins with Splenda, he uses Truvia to sweeten his tea etc. However, in the back of my mind I'm wondering if sweeteners too are harmful. I know aspartame is not the best choice, so I do avoid it. Should any type of sweetness be avoided? Just wondering what your thoughts are on this. You mentioned "very little sweetener," which made me think that you've done some research on the subject too. Last night he had ice cream sweetened with Splenda. Do you think this is a bad idea? It's so hard to figure out what's best with regard to diet, supplements etc. I find there's a lot of conflicting info. out there.

Thanks

Chelsea

Chelsea71 said:

Yeah, that would be great.
Yeah, that would be great. Thank you.

Chelsea