Why Im Not Doing Chemo
Comments
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evebarry,
I stumbled on this thread right before the holiday and before you decided to go ahead with your surgery.
I was in awe of all the responses you recieved. YOU ARE LOVED! Everyone wants you to reach your treatment goals,even if they disagree.You have attracted many caring and inteligent woman, whose knowledge is carefully thought out and sensible.
I, on the other hand came to my treatment decisions after meeting 2 sugeons, who gave me aggresive surgery options. Lymphnode dis. dmx, and the whole 9 yards of post surgery treatment. The onc. I met gave me a coookie cutter treatment plan, without the final path report, that I could have guessed without the med school advantage. I said NO. "Well, your going to die". I felt like I was no longer a profitable patient. How dare they!
Long story short, my research began and it did not take long to confirm my feelings on my own BC treatment. I found a surgeon who has been removing cancer tumors via laser for 20 years. AMAZING RESULTS. Although there was a large out of pocket expense, well worth it.
My new onc did suggest chemo, rads, and AI's. When I told her my feelings she respected them and is treating me, when neccessary. I will, reluctantly, do the rads. I need whatever hormones are left after menapause, and my immunsystem is my friend.
All of my decisions have been based on a little bit of research and COMMEN SENSE.
Hoping for the best and of course QOL........................Maureen
I respect everyones opinion here. I have gotten a lot of negetive feedback on these boards. You have not. I'll stay here and listen and learn.
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Chef, you are loved, and I'm listening. I've learned enough here to not follow the cookie cutter approach. If I could go back a year, I would had taken off the breast before it got invasive. I hate that I have to deal with the invasive, HER2+++ Cancer. I am open to the lazer option you mention. I need to learn more about it. I am open to herceptin as long as it doesn't make me sick or have severe side effects. I won't do anything to suppress or destroy my immune system. Thats the bottom line for me.
There is a place called Osasis that has had remarkable results. I will check into that as well. So far there is no reason to believe my cancer has mets. But with invasive and the HER 2 you don't know. I've read too many stories where it mets without signs of positive nodes. I would like to think that I am now cancer free...???
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Alaska Angel, you were dx HER 2+++ and so was impositive and neither of you took herceptin. It makes me wonder if the cancer cells that had the her2+ went beyond your breast area and for that reason you didn't need it. How many women who have the her2+ actually mets?
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something I may look into....
http://www.youtube.com/watch?v=XuZh4Z0CuxU&feature=player_embedded#!0 -
chef127 I also was told by my ex-onco that I would die without chemo. The onco should have been up to date enough to push me to get the OncotypeDx done instead of fighting me about it. The onco was also wrong on two other important things ... hence ... ex-onco
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Alaska, to me having your ovaries removed is much more drastic than chemo. It may be "less toxic" but there is at least one study finding that women who have their ovaries removed, if they are not BRCA+, face a shorter life expectancy. I am always amazed at the critical perspective that is often brought to decisions about chemo, that isn't brought to surgical decisions (mastectomy, oopherectomy), which, to me, do more lasting damage.
I really grappled with my decision about having my ovaries removed and finally decided to shut them down with zoladex because I had read too many things about the long term side effects of an ooph. I just hope women question their surgeons as much as they do their oncologists. I did choose chemo, radiation and hormonals, but I also have done the least amount of surgery possible and I feel very good today.
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evebarry,
I think that you will recognize the woman in this video:
http://scienceblogs.com/insolence/2011/12/a_homeopathic_physician_in_arizona_vs_science.php
She's made a very big mistake. Do not follow her.
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Black-cat, who is she? Was she someboddy on BC.Org, or a generic somebody?
Personally, I'm horrified by people with cancer who get sucked into alternative medicine. Holistic and complimentary medicine is an entirely different matter.
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yorkiemom,
I sent you a pm.
Yep, I'm horrified too and I hate the money grubbing quacks that suck in sick and scared people who have a poor understanding of science and medicine. It's as easy as stealing candy from babies.
If I did not have the ethics that I have, I could be a very rich woman.
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Very, very sad and depressing. Lives going down the drain, for NO reason.
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If we each had definite information about which treatment definitely worked for each individual, AND everyone on the planet with cancer had access to each type of treatment that would always get rid of cancer, then we would all be in favor of it.
Since no one has been able to do that yet, there is still room here for those who are making choices other than the "standard treatment" that comes without any garantee other than the continued known recurrences.
A.A.
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"standard treatment" assumes everyone is the same. Blood Pressure meds, allergy meds, etc. etc. don't work the same on everyone, why should anything else?
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AlaskaAngel,
WELL SAID. As usual
thanx
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All I know is someone I know went to Osais, who was stage IV and after treatment most of their tumors disappeared. Their tumor markers went down and she is doing well. What works for one person might not work for someone else. There are so many different therapies. We must all do our homework and decide for ourselves what we want to do.
Most chemo seems to be on trial basis. Trials tell me that it is a trial and not proven to cure.
My second bc surgeon said the body is smart and it knows how to heal itself. I am banking on that...just got to give it what it needs to do so.
My oncologist said that chemo can be given in small dosages where side effects aren't as severe. This seems to be what Oasis is doing...low dose side effects. Apparently convetional medicine is doing something similiar???
Thanks blackcat for that link..I read it all...and enjoyed hearing from the woman on utube..not sure who she is.
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http://worked4me.wordpress.com/
Something else to consider...a naturalpath I recently spoke of encouraged me to try this.
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evebarry,
At the time I was diagnosed, I told my widely respected onc several times that I was interested in participating in a clinical trial. Unfortunately, his disrespectful total failure to give me any assistance at all with that request remains puzzling to me, since there was one clinical trial I would have qualified for at the time for the investigation of trastuzumab. This guy failed entirely to even tell me I was HER2+++ -- possibly because I was such a polite and respectful patient. At the same time he was expecting me to choose a treatment plan, he made his recommendation on the pathology that he didn't provide for me to know. Eventually I suspected I was HER2 positive and had to write my cancer center for the missing information not provided to me with the rest of my original pathology report, and it came back indicating I was HER2 positive. I was over 2 years out from treatment when the trial results for trastuzumab were announced. I asked my onc about doing trastuzumab and he said that most likely if I were going to recur due to HER2 positivity I would have probably done so by then, and recommended I not have it. I decided against using trastuzumab and it turned out to be a good decision.
I wish I could say what it is that has kept me from recurring, but I can't. My suspicions include the possibility that because I had major problems with nausea and vomiting throughout treatment and was thus given doubled steroids beginning with the second treatment of CAF, the doubled steroids alone may have made a real difference, since steroids suppress the immune response of inflammation, and inflammation has some relationship to cancer. It also could be that my tumor was encapsulated from the get-go and thus all cancer removed at surgery. I had no LVI and the one SNB was negative, and at the time of my initial core needle biopsy I observed that when the rather pathetic surgeon did my core needle biopsy, the core needle repeatedly bounced off the target tumor and would not penetrate it. It could be that as a lifelong nonsmoker who exercised and ate mostly a healthy diet, there was enough protection by those practices that even though I had cancer the body responded well enough to keep me from recurring. It could be genetics, since breast cancer is prevalent on both sides of the family but there has been only one recurrence/death among the lot of us over time, and that was an aunt who got breast cancer in the 1950's when cancer was caught much later in the game. The rest (other than my older sister, who also has had no recurrence of her IDC but has had IBC that is now stable) include mother, grandmother, aunt, cousin, etc. All I know is that I did not require trastuzumab to avoid recurrence, and no one knows why.
Roughly half of those who receive trastuzumab don't benefit from it, and many of those who do benefit eventually recur. Research is trying to determine ways to reverse the resistance to trastuzumab that develops.
AlaskaAngel
P.S. It is also possible that tamoxifen helped me. After CAFx6 and rads, my breasts still appeared very dense on mammogram, but within 3 months of starting tamoxifen they were not. And tamoxifen also permanently ruined my sex life.
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http://jco.ascopubs.org/content/28/28/e541
These people look like they benefited. I know I've posted this link before but it is significant for early bc HER2+ve bc patients.
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Eve,
NO NO NO NO A THOUSAND TIMES NOOOOOO. Run from that quack. Dont walk, RUN.
Do not let him administer hydrogen peroxide. It could kill you:
http://www.timesargus.com/apps/pbcs.dll/article?AID=/20050102/NEWS/501020313/1014
Is he the same idiot that poked you in the belly to "reset your nervous system"? There is no such thing as reseting a nervous system. You can slow down your heartbeat by stimulating your vagus nerve but it dosent involve poking someone in the belly with your fingers. He made that up to scam you out of your hard earned money.
I read Jennifer's blog page.
She had colon cancer treated by chemotherapy for 6 months. A followup film showed a small liver leison. She had 2 radiologists tell her that it was not cancer and never had a liver biopsy to prove cancer but diagnosed herself as having liver mets. She claims that she took hydrogen peroxide and shrunk her lesion from 11 cm to 5 cm.
Eve, I would not read anymore of Jennifer's blog. She has a different cancer than you and is advocating a quack cancer cure. There is nothing of value for you there. It's mind boggling that she is an RN. She should know better.
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The link susieq58 posted is a worthwhile one to evaluate. As the researchers admit, it is a small study: "Ninety-seven node-negative patients were retrieved." There also were many variations among those selected in regard to radiation exposure, and also, the variations in the use of support drugs are not evaluated, such as the use of blood boosters, and the variations in the administration of steroids.
They indicate the rationale for use of trastuzumab, although not for the use of chemotherapy other than that the use of both is standard of care for larger cancers: "Adjuvant trastuzumab combined with chemotherapy is now a standard of care for HER2-positive breast tumors that exceed 1 cm and/or pN+. We believe it should also be considered for T1ab, pN0, HER2-positive tumors, especially in the presence of other poor prognosis factors (ie, high grade, high MI or HR negative).
and
"As trastuzumab has proven its efficacy in the adjuvant setting exclusively when combined with chemotherapy,5-10 we would recommend the administration of adjuvant trastuzumab along with chemotherapy when considered."
(In other words, trastuzumab with chemotherapy is being recommended because the homework hasn't been adequately done yet without the addition of chemotherapy.)
AlaskaAngel
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Evebarry,
I'm sure your oncologist was not talking about Oasis of Hope when he/she was talking about giving chemo in smaller doses. Taxol is a chemo that they found works the same but has fewer side effects when given in smaller doses over a longer period of time.
As Orac stated Oasis of Hope gives 10% of the recommended dose and it's worthless. All the side effects without the benefits. Why take it at all?
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Is ingestion or infusion of hydrogen peroxide safe?
At the end of his paper on how to infuse hydrogen peroxide intravenously,
Farr cautions that the capacity of the lungs to allow gas embolism diffusion is
limited. A continuous infusion of peroxide that results in 0.01 volume per 100
ml blood can cause an arterial gas embolism and irreversible lung damage [19].
That such adverse reactions do occur is clear from reports in the medical
literature. These incidents include: oxygen gas emboli, necrosis and gangrene
following peroxide enemas or colonic lavage [37-41,]; emphysema following
peroxide mouth wash or gargle [42]; and ulcerative colitis, gas embolism, and
emphysema following deep wound irrigation [43-45]. Peroxide ingestion results in
respiratory arrest, seizures, gas embolism in the portal circulation, shock, and
acute hemolysis. [46-48] Stroke and multiple cerebral infarcts [49] and venous
embolism follow irrigation of anal fistula and irrigation of surgical wounds
[20]. In contrast, the literature published by proponents of oxygenation therapy
contain no report of adverse clinical incidents resulting from ingestion or
infusion of hydrogen peroxide.http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/oxygen.html
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CAM or complementary alternative medicine is a regimen that many bc women are choosing. Doctors (oncs) are gradually getting the idea that the immune system has to be supported for a good outcome. Most bc women have a weak immune system after chemo, allowing the cancer to return. The trick is to find a knowledgeable naturopath oncologist. They do exist. Check out their licenses/certificates and do some homework before you trust your life to anyone.
Chemo is only 6% effective in bc according to my onc. That is what the drug companies don't want you to know. They operate on fear, and it usually works. That low % tells me that your body must figure out how to detect cancer cells at the cellular level. Cells can become damaged by oxidation. There are many supplements that can help repair your immune system. However, if you do chemo along with natural supplements or herbs you have to have a specialist to guide you. Many herbs/supplements shouldn't be taken by ER- women. Many should not be taken along with chemo. Some supplements actually work in a synergestic way to enhance the chemo drug - make it more effective with less side effects. Here in Canada (British Columbia) we have InspireHealth which is a CAM. They work with oncologists at the cancer centers to provide the best of both worlds.
Chemo does not cure cancer or there would be no cancer or recurrences. No one has found the magic bullet. But supporting your immune system before chemo, during and after only makes common sense.
That's my two cents worth
tucker
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Also, forgot to mention: cancer is nothing to fool around with. Hit it early and hit it hard. Keep sugar OUT of your diet and that includes corn syrup, glucose, artificial sweeteners unless they don't raise the glucose levels. Learn to read labels on everything and if you can't pronounce it, don't get it.
tucker again & my vast knowledge
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I always wonder about a study that has doctors who are compensated by drug companies. Bit of a conflict of interest. As a DES Daughter I am wary of all drug companies.
tuckertwo
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We all have strong personalities with strong opinions. I respect everyone's imput and know that the intent is give the right information (be whatever it is) to help. I am not out to make enemies as we all have had to wrestle with the best route to take in treating our cancer. I've always been one to think outside the box so I like to consider or at least investigate something that has worked for someone else.
I suppose I'm very simple minded, but I think I'm logical. Things have to make basic sense to me. I used to blindly accept whatever was said to me because someone used big words or had some sort of a degree. Life has taught me if something works then I'll listen. If it doesn't, I question. I've also learned what works for one person maynot work for another. Our bodies and chemistry differ. For this reason, I' am not comfortable with the one size fits all. So...not to offend anyone, but some of the alternatives that seem like quakery, I have seen work for a few freinds. When I see someone who was very ill beome well, I will look further into it...not that it is for me...but I'm open.
I do have a question that I have asked a few times that has not been logically answered. The reason I am uncomfortable with chemo with herceptin for myself is this... cancer once mutates with our DNA becomes a cell that the immune system ignores because it considers it one of our own cells. When the herceptin locks onto our cancer cell (like a keylock) it then appears to the immune killer cell as foreign invader and the killer cells then attack the cancer cells with the her2+. Once the herceptin locks onto our cancer cells it no longer divides like our other fast growing cells. For this reason the chemo is counter productive. Instead the chemo will go after our precious immune killer cells. The killer cells would be dead and not be able to kill the cancer cells with the her2+ herceptin locked onto it.
What we need to do is to do everything we can to support our fast growing killer immune cells so they are there to destroy the cancer cells with herceptin with her2+ factor.
So...logically I don't see the reason or need to use chemo with herceptin. I didn't come up with this on my own. I read it elsewhere...just don't recall the source. I presented this to my oncologist. She said nothing to counteract it. She just said, ok, let's just do herceptin with tamoxifen.
I am also struggling with taking herceptin. Friends, and Churches have been praying for me. I asked them to pray that the cancer wouldn't spread beyond my breast. I find it miraculous that in about 3 months since the biopsy 2 C of idc with the her2+++ and in 3 months in hadn't spread... now the final surgical pathology took out about 2 C more of the same with the grade 3 ... found 0 in 4 nodes, and no vasular invasion. I wonder if the mx alone removed all the cancer??? Is it a lack of faith to take herceptin?
Whatever i do, I will definately be proactive in cancer prevention and in good health. Once I heal of this mx and reconstruction, I need to move on from here. Even though we differ, I love you all and thank you for your support
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Eve - I understand how against chemo/herceptin you are but I still don't think you understand that there is no test that can tell you if you have any stray cancer cells lurking. This is why we go for the recommended treatment - it's not worth the risk. I don't want to come here and read you are stage IV at any time - I want you to survive and honestly any alternative treatment cannot compare with the results they have had with chemo/herceptin.
Sue
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Eve... Why not email Dr. Slamon or ask your oncologist to email Dr. Slamon to have your question answered. Since he discovered herception, perhaps he's the best person to answer the question about the interactions of chemo and herception.
As you know, from time to time, I directly contact researchers and they are usually more than happy to reply. Why not give it a shot. You never know.
Good luck.
Also worthwhile is reading the book written about Dr. Slamon's discovery of Herception by Robert Bezell.
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Evebarry,
Why do you think that Herceptin makes the cancer cells slow growing? Did you read that somewhere? That doesn't sound right. Voraciousreader's suggestion is excellent and she is right. Researchers love to talk to people.
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I will ask Dr. Stanton because no one else answers the taking herceptin with chemo question I have. I am open to taking herceptin without chemo. At this point taking them together seems counter active and it doesn't make sense. It would take a lot of convincing for me to ever consider anything that would destroy my immune system..presently.that doesn't make sense to me.
My second bs, who was also the head of cancer research in our area said that our bodies are smart and it knows how to heal itself. I'm hanging on to that statement. I want to give the body what it needs to heal itself. Right now...I just want to feel well after the recent mastectomy. I want to give it what it needs to heal from a major assult. I will see my oncologist mid January. Maybe then I will consider herceptin. I so want to be done with this cancer journey.
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