Alternative Treatment
Comments
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Oh, God, thanks Maud. I am getting a clearer picture now. You may be saving me from a worse fate than even I tealized. Thank You for your honesty! Any probing questions Ivan ask this top MO for anybody?
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The "red devil" is not that fun, but I had a version of it for 4 treatments. Luckily I had no adverse effects on my heart, and less SEs than with taxotere.
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Now Momine, this IS the alternive forum, just a reminder....
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Yes, I had the milder version of the red devil, Epirubicin. All the anthracyclins are red but Doxorubicin is the strongest. They can all cause heart problems and I had to have a heart scan first to ensure my heart was strong enough. Epirubicin is the E in FEC which I had twice. It's Bright red in the container and immediately turns your pee bright red too. I just peeked at the photo of me getting the red devil pumped into my arm. Bad memories! It was Docetaxel that I didn't have (turns nails black then they can fall out).Taxol is a different class of drugs.
It seems strange talking about dropping out of the chemo as I never mention it anywhere else due to the negative reaction I get. People seem to think it's some sort of death wish not having it. Haven't they heard of all the progressions that happen despite it's use? Don't they know someone who had it right up to the last weeks of their life? It's a long shot, maybe it works for some, maybe not. Those who are prepared to brave it get my admiration, at least they know they did all they could, but it wasn't for me. I had that foreboding feeling that someting was going to go terribly wrong and for ILC, chemo generally has a very weak effect so I upset everyone and said no thanks.
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Kathy, I don't know how to answer your question - I did go for a second opinion after treatment left me debilitated....so dumb of me.....and second opinions in my corner of the world are not even worth it. All specialists are colleagues and they are very very careful to cover each other's a$$es.
Let him do the talking first, as they always like to do...., then ask him to justify his 'choice' of treatment. Take notes, if you can have someone with you, it's even better. If his 'choice' is different than your first opinion, ask him why that is so AND I would take a big step back and study all your options.
Let us know how it went hon
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Joy, you have all my admiration for listening to your intuition and following that little voice. I so so wish that I had had the knowledge,the wisdom and the courage to have done just that. Walk out !!! It's too late now
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Just wanted to add another voice as someone who was unable to finish chemo. I was on TCx4 and only took the first infusion. I felt like i failed which unfortunaly our Dr. are good at making us feel. All I know is if I had continued no one knows if I would still be here!
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Really good advice, Maud. Really good.
I was also thinking about him as "second opinion" doctor (top 1% or not) going to scare me into chemo because of the 12 nodes. I mean, what do I expect? But, I will be so curious to watch his reaction when I show him my printouts of articles and studies pointing to that very thing that Joy points out about chemo having a very weak effect on ILC's like mine. Lucky for me, I'll also have a low Ki67 rate and low OncotypeDX score to present to him. It will be interesting to see what he says for me...and why. I mean what does a 6-9% chance of extending my life a few more months or years really mean for me personally, anyway. I keep going back to QOL. If I waste a year on the couch vs. living it fully...who cares how much longer "it might" extend my life?
But as I am thinking "long and hard" about this option, I keep coming back to some basic thoughts I won't go into here now, but that make good sense to me. Someday I'll write about them.
I am learning so much about this, and I just cannot help but believe there has to be a better option out there than putting poisons in your body that may or may not help; that may or may not leave you with debilitatingly permanent illness; that may cause more aggressive second cancers to grow and that may or may not kill you.
When I was considering doing the chemo, I actually woke up in the middle of the night crying out verbally to God, asking Him to forgive me for what I was about to do to the beautiful body He had given me. It just doesn't seem right somehow. And with all the alternative sites that really spell it out, I am becoming even more convinced.
For me, it may be a better choice to change my lifestyle, deal with past hurts and take whatever happens naturally. I'm not afraid of death or dying, but I am afraid of living in torment and fear of the unknown.
I would rather that I died wth a peaceful mind, than that I lived in constant pain, fear and dread.
My two cents.
PS. Don't forget to give me your questions for him. He is a top 1% med onc, after all. I'll definitely see what he has to say about Taxol not working on ER+.
Love to all! Kathy
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Hello Kira, thanks for adding your voice; I suspect many many more people out there opted out. I'm sorry if your Dr made you feel like a failure when it's YOUR body, YOUR decision. I know my onco would have excommunicated me.
I read this on another forum; this is very precious advice for everyone:
"Maximum sub-lethal chemo" has been the mantra of many oncologists. Bring the patient to the therapeutic brink of death, and then salvage the patient if possible.
Your oncologist can be the beginning of your demise or can give your body some breathing room so that your natural host defense mechanisms can take over. Choose your doctor "wagon master" wisely."
Unfortunately, I fell into the hands of the 'max sub-lethal chemo' type onco and I'm the worst for it
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Kira - My little voice tells me you didn't fail. You just got lucky. Probably your body telling you it wasn't going to do a darn thing for you anyway. I have studies and articles that have shown that Taxol/Taxotere and any of the taxane families won't work on ER+. You got saved!!
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I often wonder how much damage I did with that one treatment. I"m still trying to regain my strength. My immune system is shot, so worries me how my body will fight any rouge cancer cells might be floating in my body.
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Kathy, when you have more time, please share those studies - I know it will be painful for me to see them, but I NEED to CONFRONT my onco with those. I don't even have the courage to google for them, that's how bad I feel about the whole thing
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Maud, I literally have so many it would be mind-boggling. But here is just one article to start you off.
It just says what Joy says, that on certain types of cancers it has shown to be ineffective. Nothing to fear.
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An internet search for 'ILC, neoadjuvant chemotherapy' brings up a ton of research showing that neoadjuvant chemo, ie chemo given before surgery, shows a very low response rate. I've seen that some stage IV ILC ladies have had a good response for a month or several so it can work, but I can't stand that chemo after surgery is like being blindfolded. They have no idea if it even works when there's no tumour.
I told my MO that when I dropped out but she said it wasn't an indicator of how the chemo would work after surgery when they gave a longer course of chemo. No amount of evidence will change their minds as they are going by the standard of care that they are obliged to follow according to their guidelines. They are just doing their job. My job was to look after my own health and bear in mind the pressures the oncs are under to get me to tow the line. So I was very understanding of my dear MO who is doing her best in a misguided industry. Of course she had my best interests at heart and genuinely believed her advice to me. I'm so glad I was strong enough to say no but understand how hard that is Maud. So many times I have given in with other things. You are best to accept what happened if you can as you can't go back now. Which chemo's did they give you? Are you having any problems still? I hope if any, they are the type which will fade in time so you can feel at peace.
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Maud, I was talking to an elderly couple when I had the chemo, he was having chemo every day and had secondaries in his bones and liver. She was very indignant about several people who had literally walked out, pulling the needle from their arms and saying they'd never return. She was horrified and said they were foolish and weak. I just wanted to run out as I was close to doing the same thing myself. So you're probably right that many refuse. People just don't talk about it as they are shamed by everyone. My father refused when he had pancreatic cancer, but it was too late for him anyway. I just realised that no one in the family pressured him to have it. I guess due to his age.
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Maud - Listen to Joy. She is very wise and gives you a balanced perspective. You are doing so much now to improve your immune system, that I think that's all any of us can ever hope for, chemo or no chemo. As Joy says, it is up to us to be our own health advocate regardless which path we choose and be good with it. Make a decision...and then make that decision right.
I actually received something in a mediation recently that has really helped me with these agonizing decisions, and I hope it will help you too. I believe it came from a higher Power.
"It really doesn't matter which path you choose, because either way you will learn something. The most important thing to remember is that no matter where you go, I Am with you always."
Much love, Kathy
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Kathy, In case you don't have this study yet...
2010 by American Society of Clinical Oncology
Even in the adjuvant setting, there is a lack of evidence regarding the degree of benefit of systemic chemotherapy for patients with the classical pattern of ER-positive, HER2-negative, invasive lobular carcinoma. The combined results of 15 International Breast Cancer Study Group clinical trials, which have included 9,374 patients with invasive lobular carcinoma (n = 767) and invasive ductal carcinoma (no special type; n = 8,607), have confirmed that invasive lobular carcinoma of the breast is not just a separate histologic entity but appears to have distinct clinical and prognostic features.
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Joy - No I did not have this one...This is EXACTLY what I needed to take into the Med Onc on Tues!! I wanted something like this!! THANK YOU!!!!!!!!!
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Hey Kathy, I'm agnostic, but I saw a similar quote recently, that in order to be at peace we had to make our peace with whatever decision we make. Make the best of our chosen path. That's what I tried to do with the 2 rounds of chemo, trying to relax and imagine it fighting cancer, but it wasn't helping and the day before the next round was due I didn't go for the blood tests and was at peace with my decision not to continue. I have never doubted my decision to stop.
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Hey, Joy, my sister is an agnostic...and she is the most loving, caring, intelligent person in my world.
I love your life's path and the decisions you make. Can you put more of that on your Bio?
I'm still reading your linked article...It is so much what I have been looking for to take in, I cannot even tell you! What a gift!!
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This one is a bit older but says much the same. Unfortunately the MO will still tell you some reason why you need the chemo, but at least you will know what you have read.
© 2005 by American Society of Clinical Oncology
More importantly, frequently used guidelines such as NCI,8 NCCN9 and the St. Gallen Consensus Conference,10 as well as prognostic tools such as Adjuvant!11 still do not consider the potential differences in the natural history and treatment effectiveness between this ILC and invasive ductal carcinomas, potentially exposing ILC patients to ineffective treatment. Based on the results presented, it would seem that lobular carcinomas of the classic type and invasive ductal carcinomas are two very different pathologic entities, which should be studied and managed as such.
In fact it may be time for the oncology community to consider a prospective randomized trial to evaluate the role of adjuvant chemotherapy versus hormonal therapy in ILC patients.
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Just do a search for -- ILC adjuvant -- and a heap of studies will come up. I don't want you to be swayed by my bias. That search is completely unbiased and will bring up all research results, positive or negative.
Now I must get some sleep. Have a nice day everyone.
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Thank you Joy, of course you're absolutely right when you say 'You are best to accept what happened if you can as you can't go back now'. I did get doxorubicin as in TAC (overkill). If the recent brain MRI results show I have mets, it means that the chemo DID not work. I am praying that my neurological deterioration is due to a Tamox stroke, not mets. If my prayers come through I will definitely throw away Tamox and go natural all the way
Kathy, thank you too, you are also right.
What I know now that I didn't know then will help me in case of recurrence: I will say NO to chemo because I know - from experience - in my heart, body and soul that it would finish me off
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What I have been reading about what cancer is has made it finally make some sense to me. In the alternative world, I read about ph, oxygen, sugar, the immune system, some of the yeast/bacteria stuff, etc. There was a great explanation
Healthy cells are aerobic, meaning they function properly in the presence of sufficient oxygen. However, if something happens which either inhibits the blood's ability to transport oxygen, lowers the amount of oxygen in the blood, decreases our carbon dioxide (an increase in CO2 is a signal to release more O2), prohibits the cells from absorbing the O2 in the blood, or damages the mitochondria's ability to produce ATP (the energy "currency" of the cells, then the cells have no energy.
Since there is not enough O2 for the cell to breathe, it changes to anaerobic respiration to survive. According to David Gregg, "Cancer does not cause cells to turn anaerobic, but rather it is stabilized anaerobic respiration that is the single cause (or essential requirement) that turns the normal cells that depend on aerobic respiration into cancer cells." http://www.krysalis.net
The cell stops breathing O2 and starts fermenting glucose to make energy. The waste byproduct of the fermentation process is a sea of lactic acid (raises ph), which futher inhibits the cell from receiving O2. Calcium and O2 are up trying to buffer this acid. This is what enables a cancer cell to stabilize. In order for a cancer cell to obtain the same energy as a normal cell it must metabolize at least 18 times more glucose (thus the link between sugar and cancer).
Then there is some mention of the cons of biopsies and removal of tumors because of the chance of cutting into the tumor and releasing cancer cells through the body. Then . . . get this: Of course, cancer cells spread even without biopsy. There is a colonizing effort made with the spreading of "daughter" cells from the "mother" tumor. The daughter cells are mostly held in check by statins released by the mother, until the mother tumor is removed by surgery, or destroyed by radiation, whereupon the daughter cells have nothing to suppress them, and therefore start to grow.
Again, according to Dr. David Gregg: I have always wondered why all cancers are anaerobic in metabolism. It is almost like it is a requirement. I think I now understand the answer. It is well-known that in order for tumors to grow they must form new blood vessels to supply the increased tumor size. If they can't do this they can't grow. This is a fundamental requirement for all cancers. If the angiogenesis theory ... is correct, they have to create an O2 deficient environment to stimulate the growth of new blood vessels. The anaerobic metabolism accomplishes this. THus, anaerobic metabolism is not just a secondary consequence of cancer: it is a requirement for cancer to grow. Cells that are not anaerobic have no means of stimulating the formation of new blood vessels and thus cannot support tumor growth. Lacking this ability they would eventually die off. http://wwwkrysalis.net/cancer4.htm
So, it is lack of oxygen to the cells that starts this whole thing. So, to me, it means that anything I can do to increase the permeability of my cell walls (so the O2 can get in), increase my blood oxygen level, and counter the attempt of the cancer cells to keep my blood acidic by avoiding acidic foods or limiting them to less than 20% of my diet WILL KILL CANCER ---IMHO. lol
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Maud - I'd like to ask you, too, could you give us a little background re: your bc history and treatments on your Bio page?
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Joy, I had ILC and neo-adjuvant chemo. The fact that there was hardly any tumor left by surgery time means that the chemo worked. Since I had a BMX, it did not leave my surgeon "blind" either.
It must be very difficult if you are unable to tolerate the chemo and I can certainly see why you would pursue alternative strategies in that case.
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Dunesleeper, thanks a bunch for the extremely well condensed post. It resumes so well the dozens of pages I have read so far (not to mention the hundreds I have yet to read) if I could only get my focus back
Kathy, in a nutshell: lumpectomy, chemo, rads + tamox - the whole conventional route (but wrong one)
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Dunesleeper, can't seem to be able to access the krysalis.net site, wonder why
Momine, why would one choose chemo if one chooses bmx, don't understand
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I truly adire all who take such charge of u'r own body. I believe we al have inner strength that comes to us when needed. But I did all conventional (my choice) and after yrs of different chemos and rads, I'm done, but I feel sick most of the time. I really believe chemo damaged some good things in my body while killing all the bad. How could it not. So I always say I'm fine--unless u've been thru all this u really can't understand why, or what u feel like. I pop in here every so often and complain cuz it's safe here and I'm not judged . I'm on pain pills and sleep meds--I never took aspirin before so my path has been destructive in the after time I'm g rateful to be here and I don't complain to others, but I complain here LOL.
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Do most chemo drugs cross the blood/brain barrier, in terms of preventing mets? I thought they didn't but could be wrong.
Caryn -
Camillegal - Complain all you want! It's a "Judge-Free Zone" here and it's refreshing to hear the truths.
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