Anyone with metastatic disease who refused chemo?

[wordpix]

I had surgery to remove colon cancer mets to liver and 16 lymph nodes, 4 of which had cancer. It was a big surgery a month ago but now I'm feeling well, which I attribute to an anti-cancer, plant-based diet + exercise.

I have always been a healthy diet/organic foods eater but now am facing doing chemo to kill any lurking cancer cells. Of course, sometimes chemo doesn't work. All my doctors are saying I must do the chemo to give me my best shot at survival.

My difficulty is that maybe I don't have lurking cells anymore so perhaps don't need the chemo with all its toxic side effects. OTOH, maybe I do have cancer cells lurking so I should go ahead and do the chemo as insurance (which might not work).

My oncologist is recommending FOLFOX + Avastin.

Have you or anyone you know been in this situation and refused chemo?

[sinkingfeeling]

1. No, you should do the chemo if you want to live. Your cancer had already

metastasized and that means, to me, that cancer cells were free-floating through your body then. It would only take one to cause new tumors.

[TexasBushwhacker]

2. I would recommend the chemo

I know it stinks, but like your blood stream, your lymphatic system circulates all over your body. Since 4 of your nodes were positive, it really doesn't make much sense to assume that you are cancer free. It makes more sense to assume you still have some lingering malignant cells.

When my mother had breast cancer, she was stage 2 with positive lymph nodes. Her doctor said it was up to her about having chemo or not. At first she wasn't going to do it, but she had a close friend that told her she should. I told her I would take care of her no matter what she decided to do, but that she had an infant granddaughter and didn't she want to do everything she could to live as long as she could to see her grow up. I said "Look at it like this. You're in a shoot out with cancer. You don't want to be, but you have no choice. Each kind of treatment is a bullet in your gun. Surgery is a bullet. Radiation is a bullet. Chemo is a bullet too. Don't you want as many bullets as you can for this fight?"

She ended up doing chemo and living long enough to get to know her granddaughter. Sadly, she died 10 years after her original diagnosis, but that was probably longer than she would have lived without the chemo.

[wordpix]

10. thank you, sinking and Texas, I now agree with you

I did a lot of reading, speaking with survivors, seeing doc again, etc.

I think the final straw was speaking with a survivor friend who had a kind of cancer where all he could do for treatment was chemo. His doctor told him if he could live through the horrible chemo, the treatment would work. He lived through it and is now 15 yrs. cancer free. Incredible story!

[Ruby the Liberal]

3. I refused the option of chemo when I was dx.

I was in-situ as a final pathology, so no metastic cells - but it didn't matter. Just wasn't going to live my life by a thread, sick and weak all the time. Fortunately, in-situ means I am not indicated for chemo. Good that, in that I didn't have to have the argument.

wordpix - you will be in my thoughts as you decide what to do. Quality of life trumped length of life for me without a second thought, but we all have to come to a decision on our own merits.

[wordpix]

4. the studies are not conclusive about adjuvant chemo (post surgery) for my cancer

The "trend" is that I might get an extra year out of the chemo. But I will probably be sick or at least very tired for 6 mos. with the chemo. There are no studies about diet or cannabidoids, which are promising. But Big Pharma doesn't want to develop cannabis-derived meds b/c they can't patent pot, so there are none for us patients.

[Ruby the Liberal]

5. 6 months of ill to buy a year?

Tough decision, friend.

I ditched the post-surgery pain pills for CBD (weed) in my first week, with my surgeon's knowledge (but not approval). Healing was quicker than anticipated, pain was negligible, appetite was up and I slept like a baby. No one will ever convince me that doing that was a bad thing. My surgeon even changed his stance now and actually called his state house Rep last month to tell him that. We have committee hearings going on now about MMJ. May sanity prevail.

[wordpix]

8. where did you get the CBD? Do you live in Colorado?

thanks for the hug. I'm doing the chemo.

[wordpix]

9. forgot to say, in my state 2 yrs. ago MM was legalized but

I still can't get it. I go to one of the biggest hospitals in the state and they don't have a policy on it. I'm writing the head of the hospital---doc gave me his name.

I'm pissed nothing's happening after 2 yrs. of "legalized" mm in this backward state. And we have a Dem gov and a Dem state legislature.

[Ruby the Liberal]

15. My apologies

In an attempt to help with the stigma issues, I typically refer to MMJ as CBD lately (or just 'weed' to people I know are on board). Ironically, I've found lately that people hear CBD and know what that means. The power of CNN in low-information country, I guess.



I do not know the THC/CBD makeup of what I have been using for the pain - and it DOES get me high, so I only smoke at night after work. During the day, I just take deep breaths and power through it.

All I can tell you after a bilateral mastectomy (breast cancer) is that I am one of the rare patients that suffers from phantom pain. That is the nerves going hot and electric because the brain is telling them to connect to something that isn't there anymore. It is common in amputations, but according to my surgeon, only 1 in ~25 breast cancer patients. Nothing (and I mean nothing) else helped. One day in January, I took 3x my prescribed Oxy just to see if my dose was too low and it didn't make a dent in what felt like someone was tazering my chest from the inside out. 3 hits of weed and the hot shocks just STOP.

Its crazy, I know. I am in my 40s and haven't smoked for almost 20 years. It works and a great benefit is that I can sleep through the night pain free.

As for your access - have you tried contacting your state Rep (assuming he is on board)? Maybe all you need is a consult with your medical records in hand. I had loss of appetite from pain, but not nausea - and have heard amazing stories here in my own community about how the chemo-induced nausea/loss of appetite combination are completely eradicated by MMJ. Truly - this was the only thing that would help me to even eat some days. I can't imagine nausea on top of just not wanting food.

I'll keep you in my thoughts for a safe and comfortable journey through this phase of your treatment.

[geckosfeet]

6. Just found out recent PET scan results today.

Disease is progressing. Now in liver, lung, adrenal gland and someplace else I can't recall the name of right now.... causes back pain though.

Doc talked about a chemo drug. I said I want to talk to family etc.

I have been through two six month rounds of chemo, radiation and a major surgery since 10/2011. Not sure I want to go through another round of chemo just now. Just finished the last one in November.

In my case chemo is not a cure but simply arrests the growth of the cancer for the time it is being administered. Of course you feel like crap from the chemo so it is a trade off. I will probably do it - just not yet.

What is your diet? I find that this is the most difficult thing for me to control.

[wordpix]

7. very sorry about your cancer progression- as for diet, mine is crucial to me

I have read several books about cancer prevention diets. VERY interesting. Some people have actually been cured through these diets, although certainly not all, and there are no formal studies, and trials NEVER include special diets. It is imperative to do a good diet to improve the whole body system and not just focus on organs with cancer. So here's what I've learned and what I'm doing:

Poisons are everywhere in the air, soil and water. Grow your own food and/or buy totally organic.

Juicing is important. I make my own raw fruit and veg juices and/or smoothies every day.

Plant based foods (all organic) with a little bit of free range, grass fed lean beef, bison or pasture raised chicken. I'm in a semi-rural area where I can buy direct from farms.
,
Eat as much raw food as possible (it's difficult to eat 6 carrots and 2 beets in a sitting, but easy to drink that much in a glass of delicious juice)

Low or NO dairy, salt, wheat, sugar, coffee, animal fats, alcohol.

Drink filtered, de-chlorinated water, green tea, herb tea (organically grown tea).

This may sound awful but trust me, you'll get used to it. I am thriving on this diet---everyone says I look great----and when I pass all the tempting cakes and cookies in the supermarket, I don't look twice. It's just poison to me.

I also exercise every day, preferably outdoors. Seven wks. out of major surgery including resection of 2 organs and getting rid of a 3rd + 16 nodes, I can hike a few miles in the snow and cold up and down hills, do moderate yoga and run around all day doing normal activities without taking any pain pills.

I attribute my very fast surgery recovery to the diet and outdoor exercise + yoga.

[geckosfeet]

11. Great diet info. Sounds like you are doing fabulous. Do you do much with mushrooms?

If so - what varieties?

I have to absorb idea that many foods are poison and that my diet must change. It is hard at this point, knowing that the disease will progress in any event. Perhaps an improved diet can slow it down a bit.

Best of luck to you and keep up the good work!

[wordpix]

12. mushrooms are very good so I've upped using them--organic only

I'm also growing my first tray of wheatgrass for juice.

I truly believe this diet will help you. It is based on anti-inflammatory properties and increasing alkaline foods, both good for preventing cancer.

Of course, once you have cancer, these foods are not miracles but they have helped people get better and also, people on this diet have not gotten worse. See these for further into:

kriscarr.com

chrisbeatcancer.com

[geckosfeet]

13. Thanx wordpix. Chucked the cheese and bread this morning.

It's a start.

[wordpix]

14. Congrats! I gave away a lot of food like that, too

Starting slowly is one way. I was almost vegetarian when I started so I didn't have too hard a time. Getting rid of dairy was the biggest adjustment but I still have a little on occasion.

[Ruby the Liberal]

16. I would not have made it through

if I was still eating wheat. NOT for everyone, but in my case, I have a severe allergy/intolerance that was DX in 2012, a full year before my cancer. What I learned since is that 7-14 days of eliminating something from your diet and your body will tell you if that is good or bad. I still consume dairy (elimination had no effect), but with the grains, I knew in 4 days.

The key is reintroducing one element at a time and waiting to see how you react. Your body will tell you if you are on the right path.

[geckosfeet]

17. Well. Things are complicated by the fact that I just came down with a nasty cold.

But i have started using Beyond Tagy Tangerine for a nutritional sustitute and got a brand new Vitamix blender to make smoothies. No real dairy allergies but i am concerned about hormones etc making it into my diet.

I have always had reactions to wheat gluten. I can eat einkorn products though.

So by the time i shake this cold i should have a sense of things. Thd real test will be thext couple bloodworkups.

[wordpix]

18. basic juicing and smoothies. Nurse freaked when she saw my green smoothie today, lol

For juicing: cucumber, apple, celery, lemon optional. Can add juice to smoothies or drink as is with wheatgrass juice, sprouts.

Super sweet energy juice---carrots, beets, sweet red pepper. I use about 6 carrots to 1 1/2 beets and then 1/2 pepper. But experiment to taste--I've also added kale, spinach, celery, cukes.

Smoothies: any combination apple juice, orange juice, bananas, mangos, avocado, pineapple, yogurt (a little), protein powder. Add coconut or almond milk if you want. Add kale, collard, sprouts, wheatgrass and/or spinach for green smoothies.

I have an old juicer that can't handle wheatgrass or anything with stringy stems. So sometimes I make juice in the juicer and then add the grasses/leaves with the juice in the blender.

Basically you can make juices and smoothies with anything in season, fresh, and preferably 100% organic.

[wordpix]

19. I was doing great. Then I got a port and started chemo

Now I feel I'm going backwards in my health. I'm eating well, drinking my juices but the port hurts and the chemo keeps dripping away the poisons. I feel tired and have neuropathy already (tingling fingers). I don't want to continue.

[geckosfeet]

20. Oh wordpix. Hang on. I have been there. Still have my port. I am afraid that once it goes in

they just leave it.

Anyway. I finished my second round of chemo in Nov. Doc wants me to start again. I don't want to. My fingers and feet are still numb from last time. Hoping to quit work/retire end of june. Maybe will stsrt then if able.

But yea. Chemo sucks. I lost a ton of weight. Always tired. Diareaha all the time. Cold sensitivity. Taste and smell get all messed up. Nasty nasty stuff. Had to go in for four hour infusions every other week. Then they sent me home with a pump attached for two days. Really don't want to go down that road again.

So did you just start? Your first treatment? It does get more tolerable as time goes on but it always sucks. Let me know how things progress for you. Hoping it goes by relatively quickly for you. Please feel free to talk about it anytime.

[Ruby the Liberal]

21. Oh hun, I am so sorry to hear this

Know that we are lifting you up with healing thoughts.

Was this your first chemo session - and more importantly, do they know how you are feeling right now? Maybe they need to adjust.

Please don't overdo. If you think you have had enough rest, you are only halfway there.

[Betty88]

22. for tingling fingers try B6

Hi,

I have been on chemo forever, it seems, several different kinds, it sucks but I am going to keep going as long as I can. The neuropathy is a real pain but I found that taking B6, I do 500mg, lessened it to the point that it is almost gone. The problem is everyone reacts differently to the chemo's. A/C was my first and frankly by the 4th round I thought I would be better off taking my chances without. But we changed things up and I feel better, I am weak but that is about the worst of it.

Oh BTW you have to give the B6 a some time to work, a few weeks at least.

[wordpix]

23. update Chemo Round 5 & supplements

I decided to do the chemo and just finished Round 5. So far, I don't have any major problems, just some of the usual side effects for my conventional chemo for mCRC, the FOLFOX regime (5FU + oxalyplatin). I consult with a naturopath as well as work with the oncologist. The naturopath has me on Cancer Centers of America recommended supplements that he assured would help get me through chemo in good shape.

Well of course I didn't/still don't know if the supplements are expensive snake oil or not, but I ran out of curcumin (concentrated form of tumeric) right after Round 4. During this time I had more stomach probs. than usual and a nosebleed for a few days. Now I'm back on the curcumin for Round 5 and none of these problems have started up again at the end of the infusion.

So it's looking like this particular supplement is not snake oil after all.