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Calling all Stage IV's

dmdwins
Posts: 453
Joined: Aug 2008

Hi everyone

I have been reading the semi-colon roll call and have noticed quite a few of you with Stage IV diagnosis that are either NED or living well with the disease. I would love to hear from any of you. Any secrets to your success- diet ,juicing , attitude-attitue-attitude. Just would like to befriend some folks that are in the same boat.(don't quite understand the add as a friend thing yet) Some days ya just feel like you are totally alone at Stage iv and great to hear of people doing well and also being able to support those that are having a rough time.

Please know that if you are not Stage IV I am not discounting the battle you are facing too. I would love to hear from you also.

Dawn

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

I'm a stage IV, living with the disease for 1 yr and 8 mos. now. I can't yet say I'm fully NED, but I am still doing very well! My PET scan just recently showed NOTHING lighting up! Everything is gone except for some lung nodules, but they are all under 1 cm and, as I said, no longer light up on the PET. I started off with, of course, the rectal tumor, as well as 12+ tumors in my liver, in addition to the lung nodules. So, I would say I'm doing pretty well! I tried to keep a positive attitude as much as possible (which wasn't always easy), and I tried to stay as actively involved in "normal life". I still attended church, went out to lunch/dinner with friends, drove my kids to and from school, attended their sports activities, etc. Going through chemo didn't always make that possible every day and I did need help sometimes, but I tried to keep it as normal as possible. I also have stayed very proactive the whole time in researching any new info. and being as open and upfront with my doctors as possible. I can't say I have fully changed everything about my diet, but I have definitely made improvements. I take in more greens, try to get some organic foods, and I do take wheat grass (my kids call it green sludge). My faith in the Lord is really what got me through.

This is not to say I didn't have tough times... I went through a liver resection, went through chemo, experienced the oxy side effects, neuropathy, and lots of new aches and pains in my joints and muscles that had never been there before. I feel like I aged a lot in this past year and a half. I had a recurrence this past August & had to go through 7 more months of chemo, BUT... now I'm ready to start "maintenance" treatment. It's so lovely to be able to say I have no "active" cancer in me at the moment and the treatment I'll be getting will be to keep things from growing! This is doable- lots of people suffer from lots of other chronic illnesses and suffer a lot of pain from them. The fact that I'm really not in much pain (except for the muscle aches and new joint pain, which I think may be rheumatoid arthritis- I need to get tested for that). Anyhow- I'm alive and doing much better than I ever imagined I could be, considering my state when I was first diagnosed (I was later told that I probably wouldn't have lasted another 4 months if I hadn't gone to the Dr. when I did).

We're in this together- it is definitely helpful to hear encouraging stories from others.

Lisa

dmdwins
Posts: 453
Joined: Aug 2008

It was great hearing from you and WOW - I think you are doing fabulous!! Your story is very encouraging to me. I was diagnosed about 1 yr and 6 months ago. I also have tried to keep our lives as normal as possible in the midst of everything - attending the girls sport activities,going to church and spending time with family. I have never been that concerned for me, because my faith is strong- It is when I think of the possibility of the girls having to grow up without me that the sadness and fear return.

Oddly, I think I was stronger emotionally when I was in active treatment- feeling like I was fighting the battle (almost a year since last chemo May 08)Now it is just waiting and hoping until the next scan (end of May)Our lives are almost back to pre-dx with some changes- I just don't have the same -I can do it all Mom stamina as before.

It is such wonderful news that you have no active cancer.I'm interested to hear about your maintenance chemo. It seems that it can be treated more like a chronic illness which is very encouraging. I am definetly in it for quantity of life with my kids not necessarily quality(though I feel really good right now- other than the fatigue)

I would love to hear about your kids. They are very lucky to have a Mom like you.

Thanks for responding!!

Dawn

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Dawn,

Yah- thinking about maybe leaving my kids with no mom is definitely the worst thing of all about having cancer. My kids are 16, 13, and 9. I feel positive and fairly strong most of the time, but I sometimes catch myself talking about my kids' wedding (it's come up because a nephew is getting married out of state this summer and we're making travel plans)- also about grandkids. I think the other day my oldest daughter said something about grandma and asked me if I'd babysit her kids someday. I replied, "of course I will!", then it hit me like a ton of bricks that I may not be here then. Things definitely come up like that- also hearing about someone from high school who recently died of cancer- thinking about the possibility of my name being on that "deceased" list. Awful thoughts! I hate that and try to push those thoughts out of my mind!
I am planning on being here a long time yet to come!!!! I have to!!!!

So, I press on as so many of you do too & try to make life seem as normal as possible for my husband and kids. I start my maintenance chemo today- I go in for infusion with just Avastin in about an hour and a half and I start on the Xeloda again today. This time, however, my dosage will just be 1,000 mg a day. I should be able to handle that pretty easily (I hope- my hands are still peeling a bit from before- I had hoped they'd be completely normal again during my short break from it). Well, it's "chronic" treatment- I just need to remind myself of how much better I'm doing than some people who deal with pain everyday, etc. That may not sound very nice to others, but it's what helps me get through what I have to do.

Anyhow, thanks for posting this thread, Dawn.

Take care,
Lisa

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

And the fact that we compare ourselves to what others are experiencing and are thankful is a POSITIVE coping mechanism! We are surviving and we are thankful every day for the things that get us through! It is very sad to hear of the beast taking down another person, but it is also good to know that it hasn't taken US down yet! To be honest, after I say a prayer for their loves ones, I say a prayer of thanks that it wasn't me! I thank God for every day my children can call me and text me, every day I can post online so my family and friends know how I'm doing. Even with the upcoming surgery in May that may leave me changed dramatically, I thank God for the opportunity of the surgery; as we all know that as long as the possibility of treatment remains, we are lucky indeed! I pray your maintenance chemo goes well with you and that you have the opportunity to enjoy all of the things in life you look forward to; seeing your children get married and babysitting the grandchildren! Mine were 17 and 20 when I was diagnosed, so I was closer to that goal that you are currently, but I have seen my first marry and have a child. What great blessings indeed! Now I hope to see my 2nd one get married and have children; she graduates college next year and I look forward to seeing that! Next year will be another high school reunion and I look forward to that! Life is good and God has blessed me greatly! I am sure He has you as well!
mary

dmdwins
Posts: 453
Joined: Aug 2008

I too have moments of those pesky "awful thoughts" I will be sitting in church (yes awful thoughts even there) and will think "Oh that would be a nice song at my funeral"- or will catch myself looking at the Obituaries and thinking how great it would be if I could live as long as they. But as you said we must push those thoughts out of our mind. We must try to live in the here and now or the unknown of the future will make us bonkers.

Good luck with your maintenance therapy and let me know how you are doing. I will keep you in my prayers if you don't mind.

p.s My kids are almost 14 and 12 -ON one hand it is hard to watch them grow up and on the other I am so happy to see them get older because it means Im still here!

Take Care,
Dawn

impactzone's picture
impactzone
Posts: 542
Joined: Aug 2006

Dx 9/06, 4 major surgeries and folfox. I'm just coming off my second lung wedge resection on 3/30. All work done at Stanford CA. I here you about the alone feelings and then doing all right. My attitude is changing all the time. Sometimes it is resigned, sometimes filled with rage, sometimes just accepting... I try all the visualizations stuff and eat healthy, (yes I do have fish and chicken) along with good exercise. In my almost 3 years now, I've seen such randomness with this disease. Some people do great and others who I know are tougher, smarter, stronger, more religious, healthier than me don't make it. I talk with a few close people and it really is my wife and kids I fight for. I wish I had the magic pill or could tell you to eat one more blueberry and it would all go away.

I do take an antidepressant and that helps alot, along with work for me (teaching and coaching high school kids). I wish you well!
Chip

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

I've pretty much treated this entire ordeal as a non event. Just something I have to do to get to the next day. But I kind of treat everything like that. I'm not gonna say I trained myself to do that or that I've worked on being this way. I just think a certain way. When I wake up every morning I brush my teeth and then go to the toilet. I don't dwell on those tasks, I do them and forget them. Same way with my cancer treatment. Once I decided on a course of action, everything I did became part of my daily routine. I did them and forgot them. There is seldom a day where I spend more than a few minutes thinking about me having cancer.
Now, don't think I'm an emotionless robot. I cried with my wife the day I was diagnosed, not for me but for my young son. I want more than anything to be there for him. But when I finished crying I told my wife we wouldn't shed anymore tears until my fight was over. Whether they be tears of sorrow or joy, well that's still to be determined. I donate enough of my physical time dealing with this disease, I refuse to allow it to occupy any more of my time.

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

I am impressed snommintj.....don't think there are many of us who
can say we face this problem with such acceptance but we are all
striving for that I think. Maybe some of it comes from the family
we grew up in......my parents were worriers, etc. so after formative
years of being around that, I seem to be the same but everyday
I am trying to achieve it with various aids along the way. Thanks
for sharing your thoughts.

Barbara

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Wow JT... that is pretty darn impressive. I think you are the first person I have ever met (so to speak... I know we haven't really met) that can be so accepting of a condition that I know none of us chose to have.

Me, I can't say that I'm even close to accepting that this is my fate and I just have to deal with it. Not that I have any answers on how to fix or get rid of it. Like you, I don't fight the treatments... it's something that I just know I have to do and will do if there's any chance the treatments will beat this monster and get it out of my life.

When I'm feeling great and, like right now, am not under any treatments, then I can relax somewhat and denial is my friend ;) It's not that I pretend I don't have cancer... I do, and I know it's serious... but I go into denial that it is going to be terminal. Maybe in 30 years or so, but not in the near future. What is interesting... I'm sure there are a lot of other things in my life that might influence the length of my life... but I refuse to accept that this cancer is going to bring the end on closer than I am going to allow.

So, yes, I'm fully aware that since I'm Stage IV, the cancer can flare up at any time, and in my case it seems, anywhere in my body. If/when it does, you bet I'm going to freak out each time because having new cancer areas is NOT in my plan of the cancer not having the upper hand. Even if my intellect says, "Calm down... you know this can happen and we are just going to treat it as it comes up. That's why we stick to an ongoing monitoring plan", I know I'll feel let down, emotional, and all those things we all are so aware of with this disease.

But, the payoff is... when the cancer is stable and I don't need treatments, then I can enjoy life 100% without letting the cancer run my life... because sometimes denial is a good thing :)

Hugggggs,

Cheryl

dmdwins
Posts: 453
Joined: Aug 2008

snommintj,
I remember what my colon surgeon suggested after he gave me the "news". He said if you can, treat your cancer as a business. Spend the amount of time it takes to do what must be done-then close the books and go on with life until it is time to do "business" the next day, week etc. I think you are a great example of that.

It was good to hear from you.. I wish you many many years with your young son. As a mom I too want to be there more than anything for them!

Dawn

dmdwins
Posts: 453
Joined: Aug 2008

Hi Phil,

Thanks for responding. Just hearing that it has been almost 3 years is inspiring. I understand what you are saying about the randomness of the disease- just seems to be no rhyme or reason sometimes to who does well and who doesn't. I figure that I must do as much as I can to fight and then the rest is in someones elses hand. I have dramatically changed my diet-not sure if it will help as far as the cancer but it is certainly making me healthier overall-my triglicerides were 37!!!

I am in this fight for my family as well. I have set a goal to hold each of my daughters first child and they are far from that time in their life!!

Work is a great distraction isn't it! What a good role model you are for high school kids. Keep at it.

Dawn

ruggersocks's picture
ruggersocks
Posts: 78
Joined: Aug 2006

I've been battling rectal cancer since May 2006. Was a Stage III then.

Found 1 met to my liver and 1 met to my lung in July 2007.

I've had rectal resection, radition/5fu combined, Folfox, ablation of liver met, lung surgery, folfiri. My body, at first, didn't handle folfiri well as I had a cancer-related seizure early on. 6 months of no driving just about killed me...not the cancer, hehehe.

Scans have been every 3 months since September 2008. My next scan is tomorrow and I'll find out the results on Wednesday.

It's getting better to live a life that's free of thinking about cancer every second of every day. It was like that in the beginning, but now I feel almost 'normal', whatever that means. I'm sure this will change if cancer ever shows up.

Hugs to all of us! May NED be a part of our lives for a very long time :)

Cheryl

dmdwins
Posts: 453
Joined: Aug 2008

I will be thinking of you and sending positive healing thoughts your way. May you hear those magic letters of NED on Wednesday.

Dawn

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Yep, stage iv here. Diagnosed 8/07 at the age of 43 and living with the disease. I guess I consider this a chronic illness like diabetes or heart disease. In the last 20 mos I've had 5 surgeries, liver radiation, folfox, folfori, other chemo cocktails...more to come. 2009 has already been a tough year with treatments but here I am! I'm not able to work anymore - that was the most difficult part of the whole thing for me. I had to quit my job in January in order to pursue treatments full time. I have always enjoyed working and everything it brings but, for now, it is not to be.

I'm not in a fight any longer, it is too exhausting for me to fight all the time. I'm in a negotiation. This canzer will be sharing my body, maybe for the rest of my life, so we need to coexist. I think that can work for me. I do what I need to do with daily treatments. But, I live my life. My only rule is to have fun every.single.day. And I do. I laugh all the time and make fun of any uncomfortable situations. Do I think my attitude or sense of humor will cure me? Probably not. Do I think it will extend my life? Who knows. What I do know is that it makes me WANT to live. When life is fun, who wants to quit?

canzer has stolen some things from my life, but it hasn't taken my joy. it has also brought blessings too numerous to count. canzer is not a 'gift', in my opinion. I wouldn't wrap it up and give it to you for your birthday! But I am a blessed woman and this is just one of those things that life brings. I've never asked, "why me?" with the canzer, and when I celebrated my 25th wedding anniversary with the love of my life I didn't ask, "why me?" then, either. People wonder why horrible things happen to them but never why wonderful things do. I just don't get it, I guess. What makes life magnificent and personal is the good, the bad and the ugly. How you react determines your joy. I've seen people make themselves miserable when something good happens and I've seen people that are happy when bad things happen. I guess I just decided which I'd be. I don't look at my glass as half full or empty, I'm just happy to have a glass!

Kimby

dmdwins
Posts: 453
Joined: Aug 2008

Kimby,

Your attitude and outlook on life are awesome. It is ispiring to see you living your life with a a sense of humor and fun AND living with the disease. I try to make steps towards that each day.

I also haven't asked "why me" but have to admit I have asked "why my kids"? If I could just get past the possibility of them being here without me (i'm working on it)my mind could rest a bit more.

Thanks so much for your post -it is just what I wanted to hear.

Dawn

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I'm a fellow stage IV person. I prefer the term "living with cancer" but I know many who like "survivor", whatever works for you. I was Dx in Feb 04. No family history of cancer, no symptoms, I would get yearly checkups, everything I should have been doing. I was 46 at the time. I am now 51 and still in treatment, have never really been dx NED. I was told 3 times after my lung operations that "they got it all" but here I am, still in treatment. I've had 5 operations and 180 something treatments of chemo. As far as coping with it, I have some similar views as Snommintj (sorry, I forgot the other names you like to be called, I think John was one of them...) except there is rarely a day that do not think about the cancer. I do not let it rule my life though. Many times people have said to me that they don't know how I do it, deal with cancer that is. I won't tell them how I "Do IT". My reply is that you'd be surprised what you are capable of doing when you are backed up into a corner. I feel I had 2 choices.
1- Curl up and die
2- Accept it and do all I can to fight it.
I choose #2. At times I feel really normal even thought I am in treatment but much of that is the meds I take to help me cope with it. I'm not on cloud 9 by any means but I could not deal with it w/o an anti-depressant or anti-anxiety medication. Maybe I could but why torture myself, I feel it's fine to take advantage of that's out there for me. One thing John and I have in common is that we both have little kids. Mine are 15 and 9. I can't leave them now. I know sometime I will die, from what I don't know. If I had to guess I'd say cancer at some point but I really believe I have years ahead of me. I think if my kids were much older (and me too) that I may not be the fighter I am. Also, those how "know me" know I am not complacent and like a good fight. Maybe that has something to do with it too.

I know that having a great support system helps too. my wife, the kids, my brother and sister and their kids, friends, coworkers, people on this site everyone helps me. Also, another way I deal with it is to try to keep doing things that I enjoy and to keep things as normal as possible. The garbage has to go out, the lawn needs cutting, I garden, play guitar, kayak, take photos. Lots of stuff.

But in saying all of this, there certainly are times and days where it REALLY sucks and I hate it. I've been at the point of wondering if it's all worth it. So it's a roller coaster but I try to enjoy. I am glad that I have been able to inspire people (here and in the 'real world') and I do the best I can. I do believe it's ATTITUDE that does wonders.

So that's about it Dawn.
-phil

This is a blurb about treatment:
What types of treatment(s) have occurred?
After switching doctors (I didn't like his approach to treatment, he wanted to 'control' the cancer, not cure me), I got hooked up a great team that wanted to cure me. I did 6 months of FOL-FOX chemo with Avastin. I had surgery in Sept 04 where they removed a piece of my colon (no bag), 60% of my liver, my gallbladder, and installed a hepatic pump. I had a bowel obstruction in Dec 04, had to go back to the hospital and have scar tissue removed. Started with chemo again. This time, FUDR and CPT11. I finished that in April 05. Just had a CT scan, there were spots in lungs that were there all of the time, now they think they might be getting bigger. I have had mets in my lungs and have been on Erbitux. I had surgery in my right lung in spring of 2006, both lungs in spring of 2007, and the right lung in 2008. Not sure what is going on now, I am "stable" but there are 'spots' in my lungs which may or may not be cancerous. I am still in treatment.

StacyGleaso's picture
StacyGleaso
Posts: 1249
Joined: Mar 2003

I was diagnosed @ age 33 back in October 2001. Been clear~~NED~~ever since my surgery in January 2002. Mine was liver mets. I can only attribute my success to good doctors, good support, good attitude, and the fact that I don't think I was quite ready to leave this earth yet! Honestly, I don't know why some people are victorious in this battle and some people aren't. There is a lot of "survivor guilt" when a person is successful. I am truly grateful for every single day, though.

I am good @ pep talks if you (or anyone) ever needs one!

Happy Monday!

Hugs,
Stacy

dmdwins
Posts: 453
Joined: Aug 2008

I am so glad to hear from you all!
It is just what I needed. Both to hear of NED success stories and living with the disease success stories. I am not sure which story line will be mine (pet end of May- 1st since second surgery)but I am feeling much better about the journey either way!!

Smiles,
Dawn

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

You make a very good point Stacy, who knows why some people who have identical situations to others do not have the same success. I think that is why cancer is such a SOB to try to "cure". It's not like a broken arm where you see it's broken and there are certain ways to deal with fixing them. With cancer, it's a thing that is forever changing and can be as unique as we all are. It's a tough nut to crack but I hope someone cracks it some day. Maybe now that more experimenting could be available with stem cell research, new avenues can be open to us.

I forgot to mention in my little blurb about how fortunate I've been with having a great medical team that did the hands on dirty work. Without them, well...who knows.

I'll keep your pep talk offer in mind :-)
-phil

Wenchie
Posts: 88
Joined: Apr 2009

Hey Dawn, I too am a Stage IV and getting ready to start Folfiri. I had a Stage III colon/rectal surgery in 2007 and now have nodules in both lungs and have been told they're not resectable. I went to MD Anderson and they more or less told me to go home and die. I'm very depressed and would love to hear more good stories and I was wondering if you received any responses regarding juicing and diets. Take care and I'd love to hear from you and we can share battle stories.

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Don't you believe it! I just had a surgeon (in January) tell my husband to take me home and to live my dreams...I had 6 mos at most and half of them would be too sick to enjoy. I immediately found a radiation oncologist that radiated my liver mets and we are still working on more treatments. I am also on systemic chemo, but I have a much longer life expectancy than that surgeon thought. You know surgeons, if you can't cut it out you're dead>>>NOT!

Go quickly and get more opinions! Find someone willing to save your life. Doctors don't know everything. Don't give up until YOU are ready to.

Kimby

Wenchie
Posts: 88
Joined: Apr 2009

I've been to my Radiologist, my surgeon, MDAnderson, sent films to Johns Hopkins, working with my Oncologist and not a single one of them is encouraging! I'm trying to get my insurance company to approve a lung biopsy so I can get into a clinical trial and start chemo again too! Apparently, I had a "solitary nodule" which would have been resectable last October but THE RADIOLOGIST MISSED IT and now I have 5 or more. Anyways, it's been 6 months with no treatment and I'm very anxious to start. I looked at surgery on the lungs and was turned down, RFA and was discouraged by both my Oncologist and Radiologist so for now, I'm trying to eat healthy and not get too depressed until I can get that damn biopsy. Geez, I have to admit I cheated and consumed way too many jellybeans! Thanks to both of you. I just found this website this evening and it's the first website I've found that is the least bit encouraging. xoxox

Wenchie
Posts: 88
Joined: Apr 2009

I've been to my Radiologist, my surgeon, MDAnderson, sent films to Johns Hopkins, working with my Oncologist and not a single one of them is encouraging! I'm trying to get my insurance company to approve a lung biopsy so I can get into a clinical trial and start chemo again too! Apparently, I had a "solitary nodule" which would have been resectable last October but THE RADIOLOGIST MISSED IT and now I have 5 or more. Anyways, it's been 6 months with no treatment and I'm very anxious to start. I looked at surgery on the lungs and was turned down, RFA and was discouraged by both my Oncologist and Radiologist so for now, I'm trying to eat healthy and not get too depressed until I can get that damn biopsy. Geez, I have to admit I cheated and consumed way too many jellybeans! Thanks to both of you. I just found this website this evening and it's the first website I've found that is the least bit encouraging. xoxox

Wenchie
Posts: 88
Joined: Apr 2009

I've been to my Radiologist, my surgeon, MDAnderson, sent films to Johns Hopkins, working with my Oncologist and not a single one of them is encouraging! I'm trying to get my insurance company to approve a lung biopsy so I can get into a clinical trial and start chemo again too! Apparently, I had a "solitary nodule" which would have been resectable last October but THE RADIOLOGIST MISSED IT and now I have 5 or more. Anyways, it's been 6 months with no treatment and I'm very anxious to start. I looked at surgery on the lungs and was turned down, RFA and was discouraged by both my Oncologist and Radiologist so for now, I'm trying to eat healthy and not get too depressed until I can get that damn biopsy. Geez, I have to admit I cheated and consumed way too many jellybeans! Thanks to both of you. I just found this website this evening and it's the first website I've found that is the least bit encouraging. xoxox

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Wow, not encouraging is one thing but 6 months with no treatment? What are they thinking? I simply don't understand. Would they let this happen to a family member? Stay here, we can help with the attitude at least. Sheesh....

Kimby

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Ya Wenchie... listen to Kimby!! There are a lot of us, who have varying degrees of "Stage IV" and some of us just don't fit into the mold of what doctors say the statistics are. Sheesh... go home to die?? Is that an order??? ;)

Once they found that my colon cancer had spread to my adrenal gland and lungs, I was given the "The prognosis is not good" talk. It seems Stage 1 - III the medical profession seems to think there is always a possibility of a cure, but once you cross that like to Stage IV, your days are numbered.

My oncologist is a brilliant woman, but she had to give me the bad news... the news all Stage IV folk seem to get. But, lucky for me, as much as my "prognosis was not good" she was not willing to just throw her hands up and say there's nothing else we can do... she took my case and got other opinions.

The long and the short of it... others recommended surgery for the adrenal and if the lung mets started growing quickly (which was the expectation), then we would do chemo to slow down the progression and/or shrink them. The adrenal surgery happened and appears to have been successful... and now we are in "wait and see" mode on the lung mets... we are waiting to see if they plan on growing. So far, I have been 17 months without chemo while we wait... and no one is talking death is imminent anymore. Lots of other words have been used ... that I have "indolent" cancer, that my cancer is now being very "lazy", that it is soooo slow growing it's agonizingly slow... but nothing about death is around the corner ;)

So I have gone from a death sentence to having very lazy cancer... sometimes Lazy is good :)

Hugggggs,

Cheryl

dmdwins
Posts: 453
Joined: Aug 2008

So glad you found my thread. This is exactly why I posted it.There just never seemed to be anything positive out there if you were Stage iv but as you can see there are people out there
surviving -some thriving and living with this disease.I have been lurking on this site for awhile but just recently started posting. It really has been great.

I have not heard from anyone about juicing but from looking at other posts seems like scouty and 2b healed may be a wealth of information. I believe there is a thread about juicing.

When I was first diagnosed I went to a naturopath nutritionist and have been working with him ever since. I still did traditional therapy (chemo-surgery) but we detoxified, supported my body with supplements during chemo and now and I have made major changes to my diet. I am continually trying to learn about other ways to try to beat this naturally. and had hoped to hear others advice on juicing, diet etc.

Please don't give up-keep searching-keep coming here and new advances happen all the time.
Hope to hear from you soon

Dawn

Wenchie
Posts: 88
Joined: Apr 2009

Dawn, thanks for posting but just what exactly did your Nutritionist recommend? I try to get the 2 tsp. of turmeric down each day, I recently bought a Vita-Mix and have been blending all kinds of drinks and soups and including wheat grass in them and eating cabbage (yuck). I finally got an ok from United Healthcare for a biopsy so that I can start chemo AGAIN. I'd like to hear what you're eating! Thanks, Wenchie

dmdwins
Posts: 453
Joined: Aug 2008

Hi Wenchie

Here are some details about my diet-
No sugar- there is sugar in soooo many things such as ketchup,canned veggies etc.
No glutens (wheat)-This is even in soy sauce!!
Stay hydrated- only drink purified water or herbal tea(may add stevia to sweeten)
Lots of veggies - I stay away from corn and peas(sugar content) and white potatoes(high glycemic index)sweet potatoes ok
Fruits -apples pears and berries are best (limit bananas and melons -sugar content)
Raw non roasted nut and seeds
grains-Brown rice,quinoa,oats(gluten free only can look at glutenfreeoats.com)buckwheat
Proteins- organic eggs and organic meats on occasion
Dairy - I limit mine to yogurt and hormone free chees or goat/sheep varieties of cheese like Feta
Avoid caffeine
Oils Extra virgin,unprocessed canola or Raw Flax
Vinegar-Apple cider,rice or Balsamic
Salt- real salt or dead sea salts
Natural peanut butter
NO white rice,pasta,breads etc.

Those seem to be the important highlights that I can think of. There is a book from Patrick Quillan called Beating Cancer with Nutrition that is good and Kris Carr has a website crazysexycancertips.com that is also good

I am learning new things each day and as I said I'm sure there are others that are more knowledeable and have been doing this much longer. Remember that this diet was with me in mind and may not be exactly the same for anyone.

As far as juicing -I haven't done that yet but would love to get a Vita-mix and start.

I sure hope this helps-I'd be happy to answer anything else I might be able to.Keep your spirits up!!! It was a bit challenging in the beginning since I am an Italian girl that loves to EAT and COOK but it gets easier.
Good Luck
Dawn

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

If you want more details you can read my web page here. Here is a brief recap.

Dxed 02/04, went for 2nd opionion at a major cancer center (key to my survival in my mind) to find it was stage IV with mets to liver and one lung.

My only "symptom" was a perforated colon followed by acute peritonitis and a 3 week hospital stay in late 2003. My cancer was missed then but found a few months later when I was only about 85%-90% back from the nasty infection. I started chemo 04/04 (surgery was not an option so it was folfox with avastin) and the tumors shrunk at first but then stagnated. The chemo was kicking my butt bigtime so I decided to take a break and try alternatives (alkaline diet, juicing, supplements, and lots of other things). My CEA went down and I ended up NED and having surgery to take down my colostomy.

That was 01/06 and I am now at the 4 1/2 month NED mark (last chemo treatment). Last summer I had a few testing scares (new spot, elevated CEA?) and had to enforce positive energy on myself. After a weight gain from "instant menopause" I signed up for a running school and ran in a 5K 10 weeks later. I also signed up for ballroom and swing dance lessons. That plan worked as the tests ended up being no big deal and I have run in 2 more 5Ks including New Years Day!!!

Today I had an MRI to check my left knee that I hurt originally running, it got better until I hurt it again in a dance lesson. I'm only bringing this up to let you know that the ******* cells can be beat and life does settle down and almost become normal again. Notice I said almost!!!

Lisa P.

PS. If you want to learn more about diets etc, I found the book "Beating Cancer with Nutrition" by Patrick Quillan invaluable. You can goggle chemical balance of foods for free if you want to learn more about an alkaline diet. DO NOT buy products!!!

sharpy102's picture
sharpy102
Posts: 371
Joined: Apr 2009

Dear Kimby, Scouty and others,

I just found this site, and I apologize in advance for the lack of my English language knowledge. I'm writing on behalf of my mommy. Ok, so she was diagnosized in May, 2006 with colon cancer which already was pretty big (like a nice big palm of a man). So, in June 2006 she had a surgery where they removed half meter of her colon, and by the beginning of July she started chemo. (Avastin, Campto, 5-fluoro-uracyl). By the way, I haven't heard about this Folfox, and Folfiri, seems to me that some of you got this next to Avastin. (I'll check into it on the net, maybe it's just a "fantasy" name for 5-fluoro-uracyl). So anyway, her CEA went down really neat, but she continued the chemo every second week. She felt really sick because of the side effects, but she never gave up. Then in March 2008, PET showed met. on liver, at the colon, and lung. She got into the hospital for surgery, and when they "opened her up" (sorry, don't know if this the proper term or not) they didn't see any cancer on liver, and lung. However they found some more at the abdominal part, so they took all out what they saw, and then she continued getting Avastin (with the above combination). By summer, June 2008, another met. appeared, so she went through another surgery and they removed her uterus as there were met.tumors behind them attached. Then she got to continue Avastin, but by October 2008 she felt she's gonna get killed by the chemo, so she stopped. (which probably was a mistake) In November they did a scan, and she seemed completely empty. However, in December she had a very bad pain in the abdomen, so after new year, she went to hospital again. They did a scan and turned out her whole stomach is full of tumors, all met. and one of her kidney failed already, and there's no way for surgery, and no need for chemo. This shocked us a lot, and we couldn't believe that from November 2008 scan the january 2009 scan has such a large difference. Well, later turned out, that back in November they forgot to use any contrast, so of course, she seemed "empty". Now, she is here at home, no chemo, nothing. She has bad pains already, on morphine patch (150), and no appetite at all (gets nutridrink) and although I'm not a doctor at all, but I learned to give infusion, and giving her a 28 day long B17 treatment. I found out about B17 on the web, and what I read, that it helps. I don't know what else I can do. And I've got so jealous that you guys are so positive...how could I make my mommy be more positive? She sleeps most of the day, and when she's awake she cries how she will not see me finish school (I just stopped school this February, so I can help her 24/7), how she will not see me getting married, and having kids and so on. And I don't want to cry front of her because it would give the feeling for her that I gave up on her already as well. So, I cry at nights when she sleeps already, and I just can't believe that there's no way back. Do you guys think, she could still try to get that Erbitux that many of you mentioned? Should I bike to the hospital and ask them? It's so bad that they don't take me seriously at the hospital because I'm just a stupid kid....I don't know what to do, but I need some help...at least, on how I could make her be more positive...I will definitely tell all of your stories to her, maybe that will also encourage her...please respond something!
Thank you very much, and I wish you all the best to you all!
Sophie

dmdwins
Posts: 453
Joined: Aug 2008

Lisa,

I am so glad to hear of your success!! I am hopeful that my changes will help me obtain NED also.I definetly need to add the exercising. I would love any other suggestions you might have from what I am doing- See post "more details."
Again, I can't tell you how happy I am that it has been 4 1/2 years!!!

Take Care,
Dawn

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