Survivors who have used only alternative treatments
Comments
-
These past few months, I've come to the conclusion that BCO is mostly a forum for those who choose conventional medicine. They pretty much monitor what is said here. I realize this is not a place where I'm going to find the kind of support I need. However, I will add that I've connected to several beautiful women from both camps.
After reading through this thread I do want to add that I don't think any of the alternative ladies are saying just eating right or exercising is a guarantee for being cancer free. My opinion, stress, trauma. antibiotics, yeast and chemicals also play a huge roll in cancer. Most people are so stressed out by finances that it is no wonder that we are at a higher risk for cancer. Stress produces acidity, which sets up an enviornement for cancer growth.
I read recently...not sure of the source...that the immune system doesn't reconize metals...such as mercury or radioactive. This is why taking iodine is important. In a few years, I wouldn't be surprised that Japan's cancer rates skyrocketed. I feel for those people.
Also to add...wornoutmom most likely came to BCO alternative site looking for others who chose her choices. I get it. She just wants to know if it worked for others. Who wants to be alone. It's great knowing there are other women out there who made similiar choices. She is looking for support not controversity. We need to give each other the freedom to choose what they can live with. We all see and speak through our own choices, hurt and experience. Unless we walked in her shoes, can we really know her struggle, experience, or reasoning?
Wornoutmom...((((HUGS)))) ... You are brave, and I pray you come out of this victorious!
0 -
Mollyann, you archived the posts? Huh? Why? Stranger and stranger.
0 -
I came back to this thread to ask Orange1 for a citation for the slides on Herceptin so I could get the full study from the librarian at the university. Instead what I find is junior high girls "reporting" to some hall monitor??? Seriously?
I'm embarrassed I even posted to this thread. If there is a reporter reading this juvenile nonsense, please, I go on record, I don't know these people. Not all online groups have this level of idiocy.
I will delete my posts here. Sorry for the inconvenience.
0 -
Mathteacher, please don't go.
http://search.medscape.com/medscape-search?queryText=andrew vickers
Here is the link to the Andrew Vickers articles on medical statistics. I forgot to mention - he writes with some humor and the articles are short so since you are into math anyway I think you would like them.
0 -
Beebe - you are right and that is why i choose this forum to post rather than facebook-it is too open and frankly, not something i care to share with my peers and god knows who else..
...having said that, it is a wee bit creepy to me, perhaps because it is so personal. For some it is the one place where they let it all out, the good the bad indifferent...a journal of sorts...and it feels uncomfortable to think people would join to learn and turn a dime on those feelings. ..That is why I wrote to the moderators rather than reporting a post, to ask those questions about people and their stories being lifted out of the pages of BCO...
mathteacher-as a teacher you should know that stalking can take many forms, and if one is determined, they can find someone and find ways to make them uncomfortable or worse. It becomes even worse when you cosider this is a BREAST CANCER board....the majoirty are drawn here for information and then stay for the understanding. We all tease as we get to know who can take it and not in ways to hurt someome or scare them. That is just more stress.
I can only speak for myself. I do not open up about how I really feel....not until BC. I preferred being lone wolf mcquade, capable of handling all that I faced...until BC. It has become a haven when I need an answer or a hug or evena lively debate. I love the differences across the board (pun intended). When i review things I have said in the middle of night out of my mind with pain and worry...well, I feel bad for that poor scared woman I was and grateful for those who reached out. I can't begin to think what I would have thought if I was singled out and commented upon or two. Well, I do know. I would have felt bad, then mad, then I would have signed out and went back to toughing it out. We can't moderate rudeness or differences of opinions. That is the spirit of the board and it usually stops after a bit....i dunno, if one thought a post was odd or off, that is one thing, but when several feel the same thing, it probably is odd. the only difference this time is those who chose to do what I did about questioning an article/invasion of privacy or those that chose to report a specific post, they all said they did, and did not hide why. That is unusual when it is much easier to hide and pretend to be something or someone other than you are.
0 -
So I thought OP ment origianl poster not an offesive term just pointing out this is me
Jancie thank you so much for proving the chance of flaws in jumping to conclusions by taking only statiscial exerts or bits of stories. By selectively taking a few sentences of what I wrote I too had to say wow there goes the diet and excercise theroy... BUT you forgot to also put in my snipets on there being no ONE cause or cure. Secondly you forgot to gather any data on my diet and excercise routine. Yes I ate with my digestive process and it was the best results I got for toning purpsoses but not anywhere near a vegan diet. On excercise I would refer back to the poster who also pointed out people over excercising. You never asked if I ate organic, my sleeping patterns, stress level, et... either. Never mentioned I was exposed to years of chemicals. So by assuming that my diet equaled a healthy diet, as I sadly did as well, without any further investigation it sounds like a good theroy but would fail miserably if you had all the data before coming to a conclusion. If I were sitting here with say a family history of BC I would also look at differnent options as my cause would be changed. I am factoring ALL peieces of my life to help me understand what put me in on this board to better understand whap options to look at.
The disagreements should teach us to not jump to a conclusion given on small snipet of information or a selectly picked out statement. If you are going to rely a quote I would encourage you (no matter what side you are on) to get your hands on the full report and learn the terminology that applies. And always take into consideration who is presenting the data. Look at both sides and compare them.
I tried to get away from BC last night..lol I watched Extraordinary Measures. Great chick flick
Anyways it was about a family trying to get a medicine to help there kids with a rare disease. There were scenes in it about the $ and loop holes to get meds approved. I was so saddened to see how the bottom line was $. They referred to the ones it didn't work on to acceptable damage. This drug saved his kids and wasn't going to be made unless it was profitable enough. No one side pushing this movie. Just makes me remember there are other pieces to what choices we are given. My heart goes out so deeply to the woman that had the heart side effects from Herceptin. You are the people we can not accept as "acceptable damage". I have hit those odds this whole time and feel your pain.
As for the reporter I think that given I spoke about alternatives I am sure I won't get a letter..lol
I also am not complaining about people responding who are not supportive of me looking into alternative . I just think people shouldn't tell me what to do and also quite frankly don't know why when someone clearly asked for survivors of something & you feel so strongly against it you would comment. I don't open many topics as they don't apply to me. I didn't ask should I do this. If that were the case okay. I had no idea it would turn into an arguement just doing research like others on here. But I don't fear other ideas I accept them and need them to make a fully educated decission.
0 -
Mathteacher - are you able to see the slides from the link I posted above? This is the most that was ever published (by the folks who conducted the trial) on this study. It was never published in a journal by the lead investigators (which is kind of unusual and disappointing). It was presented at SABCS 2009. Others have published about this study, but I don't think the other publications include any more detail than provided in that slide set.The other large herceptin trials were published, and I am happy to send you PDFs of those publications, but I need you to PM with your email address since I cannot send a PDF through BCO.0
-
Almost forgot. I have had quite a few questioins on what I am doing. Alternative is very different as they take each person and treat on their individual factors. So though some may be the same you can't look at one person's treatment and assume it will work for you. There are many great things out there and some may be the norm but the dosing amount etc is very individual. Every aspect of my life was gone over before ever talking about treatment. If you are really interested I would suggest going to a professional. I will warn you it isn't cheap.
0 -
Gracie -- "Overall survival for a metastatic patient does not increase.....ever, regardless of therapies." Simply not true. We are alive because of the treatments we recieve. And with a good QOL.
Edit: Sorry for intruding -- I just wanted to correct that comment.
Edit2: My apologies Gracie -- I misunderstood OS. Athena explained it to me below.
0 -
KK, by OS increase what is meant is not longevity/extra years lived for a single person but an increase in the number of people who are cured/survive to die of something else as the result of a treatment. It's more of an epidemiological term. It can't be applied to one person.....even though in English your interpretation is obviously correct.
Edited to add: You are not intruding...or we are all intruding then. In fact, the more discussions we have on statistical terminology the better, imo because it is so riddled with confusion.
For example, I have plenty of pet peeves with the way researchers use the term "risk." The way we laypeople understand risk is that if x happens, it may cause y to happen. But often, clinical studies describe "risk" merely as incidence. In certain mental health studies, for example, when assessing signs or associated features, researchers say that a person with x or y sign is at risk of developing z disorder. But half of the time they do not mean that x or y cause z; rather, they mean that the higher the correlation of one set of events, statistically the higher the incidence of another set, and they use the term risk even when they know for a fact that there was only a mathematical association and not a cause. It drives me insane that researchers never clarify these differences and that is why the media mis-reports so much in medical findings.
Speaking of which - Orange, thanks for your information on intent-to-treat, confounding, etc.... The language of statistics is so misleading that you really need a special dictionary. Will check into the Vickers articles. Great tips.
0 -
Oh, thanks for the clarification Athena. Since BC is incurable well, OS is grim, especially for late stagers. Early stage women have much more hope, I hope. Unless I get mowed down by a bus (as an example) BC will get me in the end. Hugs to you Athena! And best wishes to Wornoutmom.
0 -
Hugs back at you!
0 -
So sorry you had to join this club....I can understand not wanting to do chemo cuz it can be tough. I am also HER2+ and those who said that the HER2+ stuff grows so fast weren't kidding. I can tell you without a doubt that Herceptin works and I credit it with keeping me alive this long. Unfortunately I am able to see and feel a lot of my tumors and when I have my herceptin treatments, I see the tumors retreat. I know that sounds weird, but it is true. Also compared to other drugs, Herceptin is WAY more doable in my opinion.
Also keep in mind that the protocols for chemo (dosage, pre-meds, frequency of infusion etc) are based on the clinical trials that established the protocols. So if you do chemo and you are having a rough time, talk to your doc about the dosage, how often you get it etc and most good doctors will work with you on this. Good luck with whatever you decide to do.
0 -
Wornoutmom- (boy, now there is a name) thank you for starting this thread. and before I say anything else I want to say I want nothing for you but health and a long life-no matter how you get there. You have created something very good here....pushing us all to think and offer our experience, strength and hope----even if we want to hit others over the head with it with it sometime. AGain, I think it all comes from not so much wanting to be right about our own choices, just not being wrong.
Whatever our differences, I actually get choked up reading all of these posts from all of these incredibly brave, intelligent women. I am humbled every day. I learn from everyone- stage 1 through stage iv (for I have learned one real hard and fast lesson and that is there are no guarantees in a diagnosis). And look at the research skills! It is amazing. No joke. But I even like the jokes as well. We have some of the weirdest humor and are apt to drift off to a totally different discussion and it is ok, we just pick up and go that way for awhile. Never quite knowing where we land up.
As the old song goes, keep on keeping on....
0 -
Athena
I am lost with the thread now and I really hope no one minds, but am really interested in your experience with tamoxifen, as I have started taking it. As I am stage 4 and have just had very aggressive treatment that (sooooo grateful!!!) seems to be working!!! Kept my breast during chemo so they could monitor resonse with MRI. So now had mastectomy. I'm not sure what are side effects of chemo and what is tamoxifen.. What s/e did unhv that u found intolerable?? As I am finding tamoxifen a bit of a challenge shall we say!! Tnx xx0 -
Regarding overall survival -- researchers always report this "outcome" at specific time-points. For example, overall survival at 5 years, or overall survival at 10 years, etc. It literally tells how many patients in the study are alive at that time point. So an effective treatment, like Herceptin or chemotherapy, will improve overall survival at various time points, even for metastatic patients. More will be alive at 2 years or 5 years, or at 10 years, if they get the treatment.
Overall survival does not necessarily mean "cure." It just means -- who's alive at the specified time point after they got the treatment? For early breast cancer patients, being alive 10 years later may approximate cure rates, though we all know relapses can happen decades later. For metastatic patients, increases in overall survival at a given time point indicate that the treatment bought them more time -- also very valuable, of course.
In any case, the study Orange1 posted only includes early stage patients and does show an increase in overall survival at 6 years among patients who took Herceptin along with chemotherapy. 87 percent who did NOT get Herceptin were alive 6 years later, compared to 91 or 92 percent who DID get Herceptin with chemo. Not a huge difference, of course, but meaning everything for the 4 or 5 women out of every 100 who are alive who would not otherwise have been.
On another note....I've been thinking about the concept of "natural" treatments. When I was about to start chemotherapy, I did a little research to understand exactly what I was going to have pumped into my body. Turned out, Adriamycin (doxorubicin) is derived from a microbe that was found in the soil near a castle in Italy (is that why it goes so well with a nice cappuccino?). And Taxol (paclitaxel) comes from the bark of the yew tree! So these compounds (though now recreated synthetically) are not so different from the barks and herbs that healers of cultures past have always prescribed for illness. The main difference is that they have randomized, controlled studies that quantify their efficacy, and that for this reason, they are embraced/encouraged by the medical establishment.
But it's interesting to me that we consider these to be "unnatural" remedies, when compared to things like fish oil, supplements, etc.
0 -
mackers67:
My experience with Tamoxifen was extreme and atypical but likely influenced by a comorbidity on the one hand and medications I was taking for it on the other. It would cause unnecessary anxiety for you and entail divulging more information that I feel comfortable sharing here if I described the SEs that forced me off it, and everybody's metabolism, brain chemistry and medical history is different.
Some people do find it a huge challenge, though.
You may want to go to the following site: www.askapatient.comand type in "Tamoxifen" - I found it good therapy at times to hear others rant. You will read different peoples' very subjective reactions to the drug. Some people find that SEs go away after a while. In others, they get worse.
Best of luck and I am sorry you are suffering!
Edited to add: I would recommend that site to anyone who is taking a med and feeling thoroughly miserable. You hear good experiences too, but hearing fellow ranters can be comforting.
0 -
Thx, totally understand and tnx very much for reply will hv a look at the link ...any advice always greatfully received....
One side effect I have is restfullness it's 230 in england and I'm wide awake still!!! Whole family asleep... even the dog is in doggy dreamland!!! Will hv to read my book Agatha Christies 4:50 from paddington, not side effect I've always been very boring!!!
Tnx again and sorry wornout I won't hijack your thread again, unless I hv something valuable to add and as my brain is cotton wool balls at the moment there's not much hope of that...!!!
Lots of love xxxx0 -
mackers welcome and you come back any time at all-day or night:)
0 -
If you you wouldnt mind as I can't decide what forum I would ask this I would like to ask an off subject question. My pathology says I am a T2. T2 says the tumor is larger than 2 cm but my path says my largest size is 2 cm. On a site it will not let me enter 2 cm as the size for T2 but will for T1. T1 says not bigger than 2 so to me I am in this boat. Does this mean my path is wrong? Should they really have had me at T1 and if so does this make any difference in my stage or anything else for that matter?
0 -
wornoutmom, I might be wrong, but I think is has something to do with the size plus how much it has grown into the breast tissue. As far as staging I don't think it will change your staging much, not what they suggest your course should be.
0 -
WOM, I didn't say you were over exercising. I have no idea how much you exercise nor would I ever make such a comment about anyone here. Lord knows, with the amount I run I am certainly the most likely to be called out for that. I was only reacting to Ruth Heidrich's claim that all her marathons and ironmen competitions have kept her cancer-free. There are studies indicating that endurance athletes may harm their immune systems so as much as I love to bang the drum for exercise, if you are looking to fight cancer, some moderation may be called for. Again this is not advice I follow, but I love running so i put that in the category of things that give me joy in life that I'm not willing to give up, like an occasional glass of wine.
Please try not to take so many of these posts so personally. Just because someone posts "X is helpful," "or Y is harmful," doesn't mean they are commenting on you personally because you follow X or Y. This is an exchange of information and we are all approaching this differently.
As for staging, I believe the most important element for staging is number of positive nodes, even in this new world of oncotype testing (which was not widely available when I was staged). The reason for this is that there is no real way for testing cancer cells in the bloodstream so they use the number of positive nodes as a kind of surrogate to guess at whether or not there are cancer cells circulating. How this will be affected by the new practice of moving away from the full axillary dissection will be interesting to see.
0 -
Member of the club I do think that lymph nodes is a huge part of staging but tumor size as well especially once we start talking about over 5cm.
wornoutmom I think that you tumor measures about 2cm. It's not an exact measurement. So you might be just slightly over 2cm and that's why they are saying T2. I would ask your onc or BS to explain it to you.
0 -
I am going to have to ask as the BC site locked up like I had conflicting data. The size said greatest size so you think they would have typed in the whole number but it would not surprise me..lol
Member thanks you gave me a morning chuckle. You told me not to not take it personal and I cracked up as I had no idea you woud take that in the way you did...lol I didn't in anyway think you said I was over excercising (take your comment personal) I was just pointing out that over excercising can also harm the body if you do it to the point of depleating the body. Since I know all my habits I know that applied to me. Just cute if you think about it your anolgy of x and y now applies to you.
I actually thought you were smart as many people don't think of the concept of excercising ever equating to bad in terms of health probably since it is no rare. 0 -
At some point, the staging issue becomes slightly arbitrary. In any case, staging has pretty bad prognostic value and will hopefully become obsolete. It is good to know how far the cancer has spread and how big it is, but that doesn't seem to tell us what really matters, which is how dangerous it is. I think in the future there needs to be a standard that decouples actual prevalence of disease in the body with prognostic value. Of course, we will have to know much more about cancer before we can do that. But the fact that you have so many stage IV ladies with "0/0 nodes" and "grade 2" and "< 1cms" in tumor size shows how distressingly misleading the staging system can be.
0 -
Athena I totally agree. I notice that staging doesn't seem to take into account HER2+, ER/PR status for example which plays a huge part in prognosis.0
-
One thing not always reflected in staging is a cancer's personality. A tiny cancer that got into a bunch of lymph nodes is more dangerous than a large cancer that got into a lymph node because it means the small one moved early on while the larger one has been lumbering along.
0 -
I don't think my large tumor was lumbering along. It was very fast growing. I think it was just stupid didn't ask for directions and kept going around in circles.
0 -
It's also a false sense of security because cancer travels in the blood too.
To me it's similar to a bus and train line coming into town with potential terrorists. For the sake of argument, lets say those are the only two ways to get into town. An elaborate system is set up to determine how far a bus travels into town, where it stops, how long it stays...the likely hood those pesky terrorists are on it, the damage they'll do.
Some towns are told, HEY ..your bus lines look gooood...no terrorists! Your town is safe and sound.
Meanwhile the train doesn't have a good tool to guage terrorism so it is just kinda shoved to the side even though it could be full of terrorists. They could be setting up camp all over town because they were smart enough to skip the bus and go straight to the train line..
What's worse, to pay for the bus test, most women have to sacrifice their QOL with LE. And for what?
To have half the mode of transportation tested.
Half.
Prognosis is fine in theory (they look and can test both lines, blood and lymph) but they only test one and then tell us we have ?% of recurrence or being alive in 10 years.
That's just crazy to me. Crazy.
0 -
Breast cancer doesn't metastatize through the lymph nodes to distant sites, it goes through the blood for that. But they don't yet have a reliable test for circulating cancer cells in the bloodstream so they use the lymph nodes as a surrogate. Of course, the cancer cells can skip the nodes altogether and just go into the bloodstream. But there is some correlation between the two, so it does indicate something.
Yes, it would be nice to test the blood but even that wouldn't be perfect. There is some thinking that many woman have circulating cancer cells that will never land anywhere, they'll just keep circulating.
0
