on the fence about chemo post colectomy

Hello,

I am a 44 year old male who had a segmental resection on June 21 and about to start chemo but still not sure I want to. I would like opinions on how effective chemo is and anybody who is suffering long term effects from it. Let me give you a short history of what happened. There is no history of colon cancer or any type of cancer going back to paternal and maternal grandparents. My father did have polyps removed twice during colonoscopy exams, he is 78, my brother who is 58 had polyps removed one time. I have two other brothers who have been clean after their exams. 

I went to the hospital with a sharp dull pain in my lower abdomen and turns out there was a mast blocking the lower part of the large intestine, upon further tests they found the mast had cancerous cells so it was decided to remove it. They removed 8" of my intestine, they ran further tests and all came back negative. The weird thing is that the doctor never referred to it as a tumor or cancer, simply a mast. I think what happened is that the polyps I had grew large enough then turned cancerous, I remember seeing blood in my stool at times over the past 10 years.

I though I had an internal hemorroid but never really got it checked out because it didn't hurt. The surgeon said he got it all out but never told what stage I was, he did say he removed two lymph nodes but said the tissue was healthy, I was not all there during all this so I was just glad it was out. I went to see the oncologist two days ago and she wants to do folfox for 5 months, after going over the side effects I am on the fence about it because I have a family to support and just started a new job in April, I can't afford to take 5 months off.

The doctor said is not because I have cancer but a preventive measure to make sure they get it in case it spread somewhere else and that I am at high risk if I don't do the chemo. I am a fit person and absolutely hate knowing that toxins are going to be injected into my body for that period of time, I just know it will have long term effects down the road.

I want to know if anybody here opted not to do chemo after surgery and if they had a recurrence? I just want to be completely sure about chemo but my oncologist is not very helpful, sounds like she is trying to frighten me. Any advise would be appreciate it.

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Comments

  • danker
    danker Member Posts: 1,276 Member
    chemo

    I had chemo and radiation 6 wks before my resection.  Although the oncologist wanted to do more chemo after the resection, the surgeon said it wasn't necessary.  Thus I never had any more chemo or radiation.  I have now been NED over 6 years.  Lucky me!!

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited August 2016 #3
    I am on the fence about it as

    I am on the fence about it as well. On the one hand I'm suspicious that people who are stage two don't get enough done for them and that's why they have reoccurances so often. I don't know the stats on that but it seems to be more often than I'd think it would be. I could be totally wrong on that, though. On the other hand, I was seriously thinking about not doing the mop up chemo after my surgery- although I'd had it pre-surgery- and went ahead with it because my onc said she thought it was better if I did, despite the issues that kept me from having the mop up chemo as soon after the surgery as you're supposed to. I ended up almost losing my life because of it but what happened to me is not very common. I'm told that chemo can cause blood clots but apparently I'm prone to them and ended up with one in my lung, a pulmonary embolism, and should have died. Like I said, though, it's not common. I'd gone ahead with the chemo because I felt that if I didn't and the cancer came back I'd be kicking myself. Now I wish I hadn't done it, of course, but I wouldn't have known that. So, I did end up having something like 8 or 10 rounds out of 12. My surgery was just over 3 years ago and I have had two spots in one lung that were mets.

    So, I don't have an answer for you, just my experience which isn't a common one. Five months seems like quite a round of it. Ironically, I'd been intending to tell my onc I was going off of it at the appointment I had booked for two days after I ended up in the ICU from it. Folfox was miserable and had gotten to the point where I wasn't willing to continue it.

    Geez, I'm thinking about what I'm typing and realize it's not ony no help to you but will pobably make it more difficult to decide. Well, it's another view. Good luck with whatever you decide. Just remember that it's different for everyone. You could talk to somone in the exact same situation as you'rs and yours will respond to treatment differently than theirs.

    Jan

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    edited August 2016 #4
    no way to know for sure

    I had a low tumor in the rectum.  Surgery to remove anus, rectum, female organs and have a perm colostomy.  There was no indication of cancer beyond the tumor.

    My surgeon offered pre-op chemo/radiation to try to shrink tumor and reduce the radical nature of the surgery.  I opted not to do that.

    My surgeon wanted me to do after surgery chemo.  I opted not to do that.  All this was 6 years ago.

    Each of us must make our decisions not only on best medical advice, but also on our personal circumstances.  Mine were that I was nearly 62, family grown, with no significant other, and no insurance.  If those circumstances were different I might have made different choices.

    It is impossible to know if there are some tiny cancer cells still lurking in our bodies after surgery.  It is impossible to know for sure if chemo and/or radiation will have the positive effect hoped for.

    The options for you appear to be either do the chemo or to do close follow-up testing to see if there is a recurrance and then see what new options you have.

    Whatever you determine you just need to have no regrets about your decision.  Just remember that there are no guarantees.

    Best wishes,

    Marie who loves kitties

  • John23
    John23 Member Posts: 2,122 Member
    edited August 2016 #5
    danker said:

    chemo

    I had chemo and radiation 6 wks before my resection.  Although the oncologist wanted to do more chemo after the resection, the surgeon said it wasn't necessary.  Thus I never had any more chemo or radiation.  I have now been NED over 6 years.  Lucky me!!

    To chemo or not to chemo....

    To chemo or not to chemo....

    A site to make one think more carefully:

    http://www.cancerworld.org/Articles/Issues/56/September-October-2013/Focus/620/Refusing-treatment.html

    Many of the Oncologist's Journals (accessible on line) will cite the true advantage of chemical and radiation therapy as being a 2% advantage over doing nothing other than surgery.

    When one allows fear to set their course, they become very limited to their survival.

    I wish you well!!

    John

     

  • LindaK.
    LindaK. Member Posts: 506 Member
    edited August 2016 #6
    You never know

    Hi, my husband was diagnosed with stage II in December 2012, he had a right hemicolectomy.  He took the more aggressive route of treatment at my and our daughter's recommendation.  He did 12 rounds of Folfox, had a few complications along the way which included stopping Oxaliplatin after 5 rounds.  He ended chemo in August, 2013 and was complaining of new pains in November, 2013.  Very poor medical follow up caused several months of great discomfort until he ended up in the hospital in early January where the idiots were treating him for constipation.  He had a large tumor in his small intestines that took them 10 days to finally remove.  I believe his cancer was a very fast growing aggressive cancer that could not be controlled.  It appeared it was controlled while on Folfox but then once that stopped, it ran wild.  He was then considered stage IV and then it spread to his lymph nodes.  You just never know how you will react and respond to treatment.  He had had 4 colonoscopies in his 50s that never showed cancer or pre-cancerous polyps so that's how fast his grew.  We felt at the time that he should try everything he could to be rid of cancer, but sadly it did not work in his case.  Only you can make the decision, I'm hoping for the best for you.

    Linda

  • kristasplace
    kristasplace Member Posts: 957 Member
    Thorough research is key

    Sorry I'm getting into this a little late in the game. You've probably already made your decision, and whatever it was, it is the right one. For me, the decision was easy at first, but got harder as the pressure by family and docs grew stronger.

    As soon as i was diagnosed i had made the decision not to do any chemo. The doctors and my family talked me into it because the tumor had to be shrunk so I wouldn't end up with a permanent ostomy.

    After the initial chemo/rads, i had the surgery and then did the six month mop up because I believed the doctors when they said it was my best chance for survival.

    Right after doing all that chemo, a suspicious spot on one of my lungs popped up that ended up being cancer, but went undiagnosed for four years (my oncologist attributed its slow growth to all the chemo I did in the past, but that wasn't the case. It began growing exponentially after a serious bout with stress and I lost the lobe). Years before they took the lung lobe, I had already had two other recurrences in other places. I did the surgery to remove one of them, all the while researching everything I could about chemotherapy verses alternative methods (primarily diet) in treating cancer, and began implementing them daily. A lung met disappeared after a month of super clean eating and juicing everyday.

    With each recurrence, the doctors told me I had to do chemo...again, because it was my best chance for survival and if I was their loved one, they'd give them the same treatment. Hell yeah they tried to frighten me! The onc would say things like, "I highly recommend you do this treatment. You don't want to regret it later on." Each time, they'd say the same thing, and their frightening words became more and more intense. I could feel the fear welling up in my stomach and making my head hot. Still, I just couldn't bring myself to doing more chemo. It was super scary and I was constantly questioning in my mind if I was doing the right thing, but I really felt in my gut that I was. I felt I had educated myself as much as I could on the subject, and I simply didn't have any faith that chemo would do anything more than make things worse. So I continued researching. I went to alternative clinics and asked questions, I watched documentaries on it and asked questions of others who'd chosen not to do chemo, and I learned what questions I needed to be asking my doctors. It was those questions that eased my mind and let me know I had made the right decision.

    I asked my onc if there was any proof chemo would help me. He said there wasn't any evidence either way. I already knew that answer from my research, and was pretty surprised he was straight up with me about it. My experience had always been, and still is to a large degree, the dancing doctor...changing the subject or answering in a cryptic manner, and sometimes flat out lying if they don't want to discuss something with you.

    The second clue was, like you, I had no mutations and no family history to speak of, so they tested my cancer cells against all the chemos they had available, and low and behold, they all killed my cancer.  My next question was: Why didn't it kill my cancer the first and second time I took it, then? He changed the subject, but at that point, I hardly needed him to answer. If you put cancer in a petrie dish and pour bleach over it, that will kill it, too.

    As far as side-effects, I can tell you from doing chemo/rads nine years ago, it has definitely had a lasting affect on me, some of which have progressively worsened, and others that have progressively healed through years of hard work. It's cancer, so no matter what we do we're going to be altered. Regardless of the side-effects, i do NOT regret doing the chemo, or radiation. If I hadn't done it, I wouldn't have known for sure the chemo didn't work, and the radiation did work. It killed that tumor dead, and shrunk it to where I didn't end up on a permanent bag. :) Good luck to you, and I hope you'll update us soon!

     Sorry for the typos. For some reason it won't let me edit the messed up words. The first weird word is supposed to be 'suspicious'. Hm. That must be a trigger word, or something...s u s p i c i o u s.

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    Thorough research is key

    Sorry I'm getting into this a little late in the game. You've probably already made your decision, and whatever it was, it is the right one. For me, the decision was easy at first, but got harder as the pressure by family and docs grew stronger.

    As soon as i was diagnosed i had made the decision not to do any chemo. The doctors and my family talked me into it because the tumor had to be shrunk so I wouldn't end up with a permanent ostomy.

    After the initial chemo/rads, i had the surgery and then did the six month mop up because I believed the doctors when they said it was my best chance for survival.

    Right after doing all that chemo, a suspicious spot on one of my lungs popped up that ended up being cancer, but went undiagnosed for four years (my oncologist attributed its slow growth to all the chemo I did in the past, but that wasn't the case. It began growing exponentially after a serious bout with stress and I lost the lobe). Years before they took the lung lobe, I had already had two other recurrences in other places. I did the surgery to remove one of them, all the while researching everything I could about chemotherapy verses alternative methods (primarily diet) in treating cancer, and began implementing them daily. A lung met disappeared after a month of super clean eating and juicing everyday.

    With each recurrence, the doctors told me I had to do chemo...again, because it was my best chance for survival and if I was their loved one, they'd give them the same treatment. Hell yeah they tried to frighten me! The onc would say things like, "I highly recommend you do this treatment. You don't want to regret it later on." Each time, they'd say the same thing, and their frightening words became more and more intense. I could feel the fear welling up in my stomach and making my head hot. Still, I just couldn't bring myself to doing more chemo. It was super scary and I was constantly questioning in my mind if I was doing the right thing, but I really felt in my gut that I was. I felt I had educated myself as much as I could on the subject, and I simply didn't have any faith that chemo would do anything more than make things worse. So I continued researching. I went to alternative clinics and asked questions, I watched documentaries on it and asked questions of others who'd chosen not to do chemo, and I learned what questions I needed to be asking my doctors. It was those questions that eased my mind and let me know I had made the right decision.

    I asked my onc if there was any proof chemo would help me. He said there wasn't any evidence either way. I already knew that answer from my research, and was pretty surprised he was straight up with me about it. My experience had always been, and still is to a large degree, the dancing doctor...changing the subject or answering in a cryptic manner, and sometimes flat out lying if they don't want to discuss something with you.

    The second clue was, like you, I had no mutations and no family history to speak of, so they tested my cancer cells against all the chemos they had available, and low and behold, they all killed my cancer.  My next question was: Why didn't it kill my cancer the first and second time I took it, then? He changed the subject, but at that point, I hardly needed him to answer. If you put cancer in a petrie dish and pour bleach over it, that will kill it, too.

    As far as side-effects, I can tell you from doing chemo/rads nine years ago, it has definitely had a lasting affect on me, some of which have progressively worsened, and others that have progressively healed through years of hard work. It's cancer, so no matter what we do we're going to be altered. Regardless of the side-effects, i do NOT regret doing the chemo, or radiation. If I hadn't done it, I wouldn't have known for sure the chemo didn't work, and the radiation did work. It killed that tumor dead, and shrunk it to where I didn't end up on a permanent bag. :) Good luck to you, and I hope you'll update us soon!

     Sorry for the typos. For some reason it won't let me edit the messed up words. The first weird word is supposed to be 'suspicious'. Hm. That must be a trigger word, or something...s u s p i c i o u s.

    Krista, hello

    I think we could learn allot from you being here. 

    I would LOVE to know more about your 'clean diet and juicing'. 

    SUE

  • John23
    John23 Member Posts: 2,122 Member
    edited September 2016 #9
    Welcome back!

    Welcome back!

    You have been missed!

    Re:
    "I do NOT regret doing the chemo, or radiation. If I hadn't done it, I wouldn't have known for sure the chemo didn't work, and the radiation did work. It killed that tumor dead, and shrunk it to where I didn't end up on a permanent bag. :)"

    That was a helluva way to prove anything, but happy you are happy! I opted for an Ileostomy (not initially), but long after being refused a reversal from the surgeon, who insisted I do Chemo/rad prior to his reversing the Ileo.

    I took a different path (TCM), and survived well from 2006 until 2015 when a recurrence was noted in the "rectal stump" that was left in at the 2006 op. Presently dealing with this debacle, and I suppose again going against all odds as our fantastic western medical industry dictates.

    It's an uphill battle against every physician, friend and family that seems to know what's best. Even against the "proof" that your mere existence provides, they seem to scream in our face that we are not doing what is best for us, while we watch many that follow their advice so dedicatedly, have fallen off the screen long before us.....

    There's no "right or wrong", and no choice that's better than the other, but there are choices! There are options, and viable ones, that can provide as much or more to one's health and longevity as the other more accepted options that too often leave debilitating factors to be dealt with long after the cancer is gone.

    Cancer recurrences happen. It is a simple fact, and nothing unusual; it is more unusual that cancer does not reoccur.

    It's what we do between, the damage that we endure in the fight, that matters. "Medical Science" does not take that into consideration. They simply attempt to weigh the benefits vs the damage, and tell you that the damage will be workable.......

    Good to see you posting again. We could use Lisa and Emily here too!

    Thanks,

    John

     

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #10
    Trubrit said:

    Krista, hello

    I think we could learn allot from you being here. 

    I would LOVE to know more about your 'clean diet and juicing'. 

    SUE

    Thank you, Sue!

    I've been looking for the time to write a separate post, so I think I can do that tonight. There has always been so much controversy surrounding the "to-do/not-to-do chemo subject that I had to leave this board a while ago. I didn't think it was right to stir people up when they were already stressed out and angry. On top of that, it was too stressful for me to see the people I'd grown to care about, die. I've come back without any of those fears and hope that what I've done will help others searching similar avenues. I wrote a book about it that I published in 2014, but it now needs to be revised. I'm not looking to plug it here, and I won't. I'm considering pulling it until I can make the necessary changes to it. I'd be very happy to share my story outside of the book, at least to highlight some of the things that worked for me. All I want is for others to survive past this disease, and I believe we all can.

    Krista

     

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #11
    John23 said:

    Welcome back!

    Welcome back!

    You have been missed!

    Re:
    "I do NOT regret doing the chemo, or radiation. If I hadn't done it, I wouldn't have known for sure the chemo didn't work, and the radiation did work. It killed that tumor dead, and shrunk it to where I didn't end up on a permanent bag. :)"

    That was a helluva way to prove anything, but happy you are happy! I opted for an Ileostomy (not initially), but long after being refused a reversal from the surgeon, who insisted I do Chemo/rad prior to his reversing the Ileo.

    I took a different path (TCM), and survived well from 2006 until 2015 when a recurrence was noted in the "rectal stump" that was left in at the 2006 op. Presently dealing with this debacle, and I suppose again going against all odds as our fantastic western medical industry dictates.

    It's an uphill battle against every physician, friend and family that seems to know what's best. Even against the "proof" that your mere existence provides, they seem to scream in our face that we are not doing what is best for us, while we watch many that follow their advice so dedicatedly, have fallen off the screen long before us.....

    There's no "right or wrong", and no choice that's better than the other, but there are choices! There are options, and viable ones, that can provide as much or more to one's health and longevity as the other more accepted options that too often leave debilitating factors to be dealt with long after the cancer is gone.

    Cancer recurrences happen. It is a simple fact, and nothing unusual; it is more unusual that cancer does not reoccur.

    It's what we do between, the damage that we endure in the fight, that matters. "Medical Science" does not take that into consideration. They simply attempt to weigh the benefits vs the damage, and tell you that the damage will be workable.......

    Good to see you posting again. We could use Lisa and Emily here too!

    Thanks,

    John

     

    Hi John! I'm so happy to see

    Hi John! I'm so happy to see you're still here, in both possible ways! I've always considered you a brother in arms, and love how educated you are on the subjects that pertain to our disease.

    Everything you just said are my strong beliefs, too. Much goes beyond belief and is simple truth.

    I'm sorry you're back in the fray with it. I'm also sorry the doctor made you do the chemo/rads before he'd reverse it. That's totally bunk! I know how persuasive they can be, and fear tactics work on most of us. I just hope the treatment didn't cause too much damage. I'm still dealing with terrible neuropathy that seems to only get worse and worse; especially if I experience anything too hot or too cold, and too much stress.

    I'm going to try and stick around this time to share my experiences and not get dragged into naysayer arguments that don't go anywhere. 

    "Workable damage"...that's so true! I don't think they'd be so keen on calling it that if they were the ones having to work with it! lol.

    Talk to you soon!

    Krista 

  • John23
    John23 Member Posts: 2,122 Member

    Hi John! I'm so happy to see

    Hi John! I'm so happy to see you're still here, in both possible ways! I've always considered you a brother in arms, and love how educated you are on the subjects that pertain to our disease.

    Everything you just said are my strong beliefs, too. Much goes beyond belief and is simple truth.

    I'm sorry you're back in the fray with it. I'm also sorry the doctor made you do the chemo/rads before he'd reverse it. That's totally bunk! I know how persuasive they can be, and fear tactics work on most of us. I just hope the treatment didn't cause too much damage. I'm still dealing with terrible neuropathy that seems to only get worse and worse; especially if I experience anything too hot or too cold, and too much stress.

    I'm going to try and stick around this time to share my experiences and not get dragged into naysayer arguments that don't go anywhere. 

    "Workable damage"...that's so true! I don't think they'd be so keen on calling it that if they were the ones having to work with it! lol.

    Talk to you soon!

    Krista 

    quick note..

    Never did chemo/rad; ended up with perm Ileostomy that's been revised/resected three times since 2006 (adhesions/blockages). I have been left with no colon and less than 50% of my small intestine feeding into an Ileostomy (condition is termed: "short bowel").

    I stopped my personal herbal treatments in 2008/9, since I continued to be "clean". In 2015 a recurrence had appeared in the "rectal stump" (small section of left-in colon/2006) that has invaded the bladder, etc.. I had been scheduled for an immediate total pelvic exentoration at a hospital 90 miles away, and set to go Thanksgiving evening (Nov 2015). I did not go, I waited until after the holidays (Jan) to schedule the interviews, etc. I have yet to have the major operation, in spite of an MRI, CT and PET, all that indicated no "total exentoration" was needed. The surgeon was out on medical leave; his partner demanded to stick with the "Tumor Board" assessment to do chemo and rad prior to and after the surgery, neither of what my original surgeon felt was needed. I refused and waited for the original surgeon to return. The original surgeon has returned, but has not scheduled any operation. He did schedule a new CT - that indicated no increase in tumor size or growth, and some indications of improvement "probably as result of treatment". The only "treatment" I have been doing, is TCM/herbal. He may be waiting to see if any more shrinkage is noted....(?).

    The absence of cancer for all the years between 2006 and 2015 had stymied physicians, most of whom had admitted that there was no other explanation other than the use of herbal treatments.

    Cancer may kill me Krista, and it likely will. I'm 72 and have other problems related to a "short bowel"; it's difficult to stay healthy when you don't have a digestive tract absorb what you need. I take IV hydration daily, since my system will not uptake as much as I lose.

    The options available to steer clear of Chemo and radiation are plentiful. TCM, Herbs, Juicing...... there are so, so many inexpensive ways to fight cancer and not be sick 24/7 due to the harsh, toxic mainstream remedies. If it weren't for the fear factor driving individuals into the waiting arms of the pharmaceutical industry, there would be a cure found instead. As long as we're willing to feed the industry thousands per dose, there will be no other remedies sought.

    It's a tough battle to get the truth out, and the battle in the past had driven most of us away........

    There shouldn't be any "battle"; there should be no fight against the gathering and dissemination of data, or providing education.

    Of interest:  Refusing Treatment

    Good to see you back!

    Best hopes,

    John

  • kristasplace
    kristasplace Member Posts: 957 Member
    John, thank you so much for updating

    I wanted to ask, but didn't know how open you wanted to be about it.

    Yes, it's very challenging and often times frustrating to be open and outspoken about self-healing cancer. But I thouroughly agree with you that the word needs to get out there! I had an opportunity to tell my story on 'The Doctor's' television program and I chickened out for several reasons, all of which I'm sure you can relate to.

    Though I have four years of college, I'm mostly self-educated with only a nutrionist certification. I've found it so extremely difficult to tell my own doctors about self-healing on a one on one basis, let alone face a panel of them who disagree with me. Add a live audience and who knows how many millions of viewers to that, and I just couldn't even handle the thought of it! I'm a pretty shy introvert and I know I would've froze and blown the whole thing. I decided I'd wait until I was much stronger and developed more confidence before taking on a task like that. I feel I'm getting much closer to that goal, but it's still a huge responsibility that I feel I simply can't flub up.

    I'm so amazed your doctors acknowledged what you've done! I'm hoping mine will, too, with this latest clear scan. I don't have any faith she'd stand up beside me and admit it publicly, though. I don't know for sure if she could do that and still maintain a medical license in the U.S. 

    It's so horrible you had to lose so much of your bowel, but thanful you chose to wait for that unnecessary surgery. Wow, that was a close one, huh? I've found that it's better to sit on things a while before making any major decisions.  It's what I would've done if the surgeon kept insisting on an ostomy. I still have bathroom issues thanks to the stricture. Sometimes it feels just like it did when the tumor was in there blocking things up. Like you, I feel that getting the most of the cancer as you can through surgery is the best jump start to mopping up with herbs, diet, or whatever other methods work. However, I was not going to go on a permanent bag, and I would've done ANYTHING to keep that from happening. 

    When I told someone how I felt, they suggested that my life was worth more than vanity. I laughed and said it had absolutely nothing to do with vanity! I just omited the reasons why an ostomy didn't and wouldn't work for me, then decided I'd better not go there. I don't want others who are facing an ostomy and who may be reading this to get freaked out. I'll just say it's a personal choice and leave it at that. 

    I think you still have a lot of time on this earth, John. Like me, you're too tenacious and stubborn to let the little bastards win. I know you're referring to the lack of nutritients you're getting, but that's what the cancer caused, and it won't win that way, either.

    You said you're getting IV infusions. Is that of vitamins and minerals? Is your TCM doctor controling what you're taking? Have you heard of, or subscribe to, the breathtarian philosophy?

    It's so great to be back!

    Talk soon,

    Krista

  • John23
    John23 Member Posts: 2,122 Member
    edited September 2016 #14
    More dribble from here:

    I have my own IV pump and deliver the 2.5 liters of saline daily at home. No TPN as yet. I have just enough intestine to get by...

    I opted to keep the Ileostomy; no big deal. Like you said, it's a personal choice. In my case, it's worked out for the best.

    In 2006 I researched and used herbs that were being used in China/Asia to combat cancer cells directly. My TCM doc did not use those herbs in his practice since they were "dose dependent" and too similar to western  medicine. In true orthodox TCM practice, the herbs get the body to do what it should be doing, and once the body is functioning properly no further use of treatment is required. Since the herbs I used were dose dependent, they stop working when you stop taking them. They build up the immune system very quickly (and that helps), but the total effect on the body isn't the same as the more orthodox treatments that actually fix the real problem.

    After scan after scan came back clean, I stopped taking the herbs. "Don't fix what ain't broke", was my idea.... however wrong.

    My setback came after a wrong dx of pneumonia and the rx of "z-pak". The antibiotic set me on my asteroid. I suffered every side effect to the max, developed allergies I never had before (just ended up in the ER after an allergic reaction to CT IV contrast). Started having odd problems and discharge from the rectal stump. The Gastro doc passed it off as a "normal degradation of the stump" and refused to provide a sigmoidoscopy. The "normal degradation" was actually a tumor growing in the rectal stump. When I went to the ER for the lack of ability to urinate, they discovered that the tumor had grown into the bladder causing that problem....

    Had I stayed with the herbs, perhaps the story would have been different, and of course, had I received a sigmoidoscopy, the tumor would have been removed before this stage.... Coulda' woulda' shoulda'....

    My new surgeon believes cancer returns regardless of modality used, and it makes little difference what one uses to fight cancer; recurrences happen. I love his honesty.

    We have been using TCM for all ailments since 2000. It has resolved my A-Fib, kidney stones, Blood clots (DVTs), etc. It had brought me back from extreme malnutrition due to the "short bowel" and improved the ability to uptake what the physicians said would not be accomplished. I do not require the herbal remedy continually for any of those past problems. TCM works well for me.

    TCM has been studied and well doc umented for over three thousand years; there's more to it than some "snake oil" snide remarks we hear regarding it. It's not some "alternative" in other countries, it's an option.

    Oh well...... can't beat a dead horse...

    Be well  Krista!  Good to see you here again!

    John

     

  • kristasplace
    kristasplace Member Posts: 957 Member
    Yes!

    It seems like recurrences come back to those of us who aren't doing chemo when we stop doing whatever it is that's keeping our cancer at bay. A friend of mine who has one of the most remarkable survival stories I'd ever heard, was diagnosed with stage IV colorectal cancer six years ago.

    Of course, his doctors recommended the chemo/rads/, surgery/chemo like they do for most of us. He refused it all.

    He went home, started doing his research, and chose the macrobiotic diet for himself.

    Five years passed with no more tumor growth. They didn't go away, but they were seemingly frozen in time.

    He started becoming, in his own words, "complacent about it", and slipped off the diet.

    Sure enough the cancer began to grow. They recommended he do surgery to remove the tumor, but he didn't want to do it for fear that if they opened him up, it would only spread the cancer further. Instead, he agreed to do chemo.

    I think he lived another year, maybe a year and a half before he succumbed.

    It's a heartbreaking story, but it says so much. RIP Alan Kenney.

    Did you have surgery to remove the rectal stump? You said you don't need the herbs for any past ailments, but are you still taking them?

    Krista

  • kristasplace
    kristasplace Member Posts: 957 Member
    lol

    They bleating out the word s u c c u m b e d. How silly!

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited September 2016 #17

    Yes!

    It seems like recurrences come back to those of us who aren't doing chemo when we stop doing whatever it is that's keeping our cancer at bay. A friend of mine who has one of the most remarkable survival stories I'd ever heard, was diagnosed with stage IV colorectal cancer six years ago.

    Of course, his doctors recommended the chemo/rads/, surgery/chemo like they do for most of us. He refused it all.

    He went home, started doing his research, and chose the macrobiotic diet for himself.

    Five years passed with no more tumor growth. They didn't go away, but they were seemingly frozen in time.

    He started becoming, in his own words, "complacent about it", and slipped off the diet.

    Sure enough the cancer began to grow. They recommended he do surgery to remove the tumor, but he didn't want to do it for fear that if they opened him up, it would only spread the cancer further. Instead, he agreed to do chemo.

    I think he lived another year, maybe a year and a half before he succumbed.

    It's a heartbreaking story, but it says so much. RIP Alan Kenney.

    Did you have surgery to remove the rectal stump? You said you don't need the herbs for any past ailments, but are you still taking them?

    Krista

    Complacent

    This is a good word.

    When I met Nana b (Rachel) in person, she was already heading toward her demise. She told me that, after being NED for so long, she became 'complacent' and slipped back into her old eating habits, gaining weight. She said she would go to her grave regretting this. I have a picture of us together, and a note attached, reminding me not to get complacent. Still, it is hard for me to keep on track, even with her words and her death as a reminder. 

  • John23
    John23 Member Posts: 2,122 Member
    edited September 2016 #18

    Yes!

    It seems like recurrences come back to those of us who aren't doing chemo when we stop doing whatever it is that's keeping our cancer at bay. A friend of mine who has one of the most remarkable survival stories I'd ever heard, was diagnosed with stage IV colorectal cancer six years ago.

    Of course, his doctors recommended the chemo/rads/, surgery/chemo like they do for most of us. He refused it all.

    He went home, started doing his research, and chose the macrobiotic diet for himself.

    Five years passed with no more tumor growth. They didn't go away, but they were seemingly frozen in time.

    He started becoming, in his own words, "complacent about it", and slipped off the diet.

    Sure enough the cancer began to grow. They recommended he do surgery to remove the tumor, but he didn't want to do it for fear that if they opened him up, it would only spread the cancer further. Instead, he agreed to do chemo.

    I think he lived another year, maybe a year and a half before he succumbed.

    It's a heartbreaking story, but it says so much. RIP Alan Kenney.

    Did you have surgery to remove the rectal stump? You said you don't need the herbs for any past ailments, but are you still taking them?

    Krista

    More.... ?

    The rectal stump, the tumor that's grown from it and into the bladder is still where it was in Nov 2015. The herbs apparently stopped further growth, but I had to stop taking them due to the new obstruction that's developed two weeks ago. Waiting to see a new gastro doc about the obstruction. I may try the herbs again and see if they pass through. If they don't, I'm going to be in a world of pain. Obstructions are no fun, trust me. I'm hoping that it's some sort of intestinal infection and not an adhesion. We'll see soon, I hope. I can't afford to lose any more intestine.

    TCM Herbal remedies and treatments are only provided until the problem is resolved. If a "symptom" returns, a new diagnosis is provided to isolate the problem causing the symptom. Western medicine only provides a medicinal resolve for the symptom and does not address the underlying problem, and that's where the real difference between modalities are. And with WM, any remedy can't be "tweaked" for the individual, all the prescriptions are generic; one size fits all. But of course, one size doesn't fit all..... Leaving an unresolved problem and simply removing the symptoms of that problem isn't in anyone's best interests.....

    As you can tell by now, I am a strong advocate for TCM and Chinese Medicine. Shhhhh, don't spread it around.

    Oh, and you can't type C and U together. It's just another bug here...  document vs doc ument

    Be well,

    John

     

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited September 2016 #19
    Trubrit said:

    Complacent

    This is a good word.

    When I met Nana b (Rachel) in person, she was already heading toward her demise. She told me that, after being NED for so long, she became 'complacent' and slipped back into her old eating habits, gaining weight. She said she would go to her grave regretting this. I have a picture of us together, and a note attached, reminding me not to get complacent. Still, it is hard for me to keep on track, even with her words and her death as a reminder. 

    I think that's human nature

    I think that's human nature Sue. We have so much going on in our lives all the time that it's easy to do. I'm sitting here right now with a cramp in my lower left abdomen which usually signals that I'm going to have a partial blockage. The last one wasn't all that long ago. Looking back I realize that at first after I had the last one I was so careful about chewing well but have forgotten and haven't worried much lately.

    We live and we often are busy or don't hae the time to buy the right food or just one little snack seems like no big deal. And then it turns into more often and seemingly nothing happens and then it does and it's easy to look back and know we made a mistake.

    Jan 

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #20
    Trubrit said:

    Complacent

    This is a good word.

    When I met Nana b (Rachel) in person, she was already heading toward her demise. She told me that, after being NED for so long, she became 'complacent' and slipped back into her old eating habits, gaining weight. She said she would go to her grave regretting this. I have a picture of us together, and a note attached, reminding me not to get complacent. Still, it is hard for me to keep on track, even with her words and her death as a reminder. 

    Wow

    That's really sad, and something we can all definitely learn from. I met Rachel here near the beginning of my journey and she was always fun and witty and open to hearing and discussing options that were outside of the box.

    I think as we search for good health for ourselves, it's important we find a happy medium where we can do what's best for our overall health, but still be able to indulge in the good things in life. It's definitely a challenge to not only find that happy medium, but to make it a permanent change. I can do super healthy vegan for five or seven weeks, then I'm so over it I'd rather die! When we take all the fun out of life, what's to live for? Five or seven weeks is nothing, though, really. It's just nearly impossible for me to do healthy part time and indulge even less of the time. It's all or nothing! lol.

    It sounds like Rachel gave you a great gift; the gift of her experience and wisdom. That's so priceless. Thank you for sharing that!

    Krista

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #21
    John23 said:

    More.... ?

    The rectal stump, the tumor that's grown from it and into the bladder is still where it was in Nov 2015. The herbs apparently stopped further growth, but I had to stop taking them due to the new obstruction that's developed two weeks ago. Waiting to see a new gastro doc about the obstruction. I may try the herbs again and see if they pass through. If they don't, I'm going to be in a world of pain. Obstructions are no fun, trust me. I'm hoping that it's some sort of intestinal infection and not an adhesion. We'll see soon, I hope. I can't afford to lose any more intestine.

    TCM Herbal remedies and treatments are only provided until the problem is resolved. If a "symptom" returns, a new diagnosis is provided to isolate the problem causing the symptom. Western medicine only provides a medicinal resolve for the symptom and does not address the underlying problem, and that's where the real difference between modalities are. And with WM, any remedy can't be "tweaked" for the individual, all the prescriptions are generic; one size fits all. But of course, one size doesn't fit all..... Leaving an unresolved problem and simply removing the symptoms of that problem isn't in anyone's best interests.....

    As you can tell by now, I am a strong advocate for TCM and Chinese Medicine. Shhhhh, don't spread it around.

    Oh, and you can't type C and U together. It's just another bug here...  document vs doc ument

    Be well,

    John

     

     

    Oh, yes

    I remember you saying that about the rectal stump. Damn chemo-brain.

    Is it your urethra that's blocked? I'm not sure I understand why the herbs will block you? Are they capsules, or tea? 

    I'm glad you're an advocate for TCM. I have no doubt whatsoever that it works when used through a trained TCM doctor. I understand your concern about getting an obstruction, but if the risk isn't super high, I'd continue taking them. You definitely don't want anything growing while you're waiting.

    What are TCM's views on juicing? It's not fun with an ileostomy; it's a nightmare with a stricture, too, but might help keep growth away and definitely won't cause an obstruction.

    Hugs!