Survivors who have used only alternative treatments
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the new me,
can't agree more.. I am going to repost my signature.
Consult your medical professional for advice.
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Hi Sheila, your attempts to maintain balance are much appreciated! You mentioned Timothy earlier, and I just wanted to point out that there is a huge difference between Nanay and Timothy. Timothy presents information. He suggests further reading and provides credible, factual information and links. I've never seen him give anyone specific treatment advice, and that's as it should be.
Nanay, on the other hand, gives out treatment advice. She's here recommending specific tests, diagnoses, and treatments for a specific person. It's very, very different - and a critical point. She's apparently working hard to establish herself as an expert here (bogus disclaimers notwithstanding), and she clearly isn't. None of us are. It's not a personal pick-on-Nanay thing, or a pick-on-alternative treatments thing. It's a matter of helping a fellow BC traveler sort out the wheat from the chaff with good reliable vetted fact-based information.
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thenewme,
if I am breaking any rules, you can go ahead and report to the moderators. elmcity did it. so far I have only seen one post from the Moderators and it was not directed only to me, it was for everyone.
am not an expert and never will be-- I just give WOM a good starting point. information to print and read and give to her medical team.
give this a thought,, if WOM really needs an answer on which scan is better CT or PET-- why cant she google it herself? why does she have to post it on an alternative forum? her ND told her she have liver issues-- but the CT scan did not pick it up and her primary doctor seems not giving her a treatment option for the "liver issues" either.. just because it is not in the scan,,
am not an expert but I can clearly see the difference between Liver Function Test and Liver Tumuour Markers..you can too!
however you are right that a hepathologist can help her order Liver Function Test/Fibroscan and give her a much better analysis.. it is possible that her primary doctor (the one who ordered the CT scan is not a hepatholgist, but a surgeon-- whose concern is only to see a tumuor and treat the tumuor - by surgery if he sees one. you cannot expect every surgeon to do what a hepathologist can do)
chill out!
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is it also not odd that the ND knew that there was a liver issue-- even prior to the scan?
really makes me wonder how the ND diagnosed the liver issue for WOM.. my ND knew that I had fatty liver disease even before my LFT results came out.
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WOM hasn't had her scan yet. Thats the next step. Her doctors seem to be taking care of her and I'm glad. It is very common for women like WOM to ask the question PET versus CT scan, there have been numerous threads on it. If my doctor ordered a CT scan and every time I came on here people seemed to be talking about PET scans I would ask that question as well. A google search won't answer it. The answer come sin the nuance of the individual patient's situation and why a doctor think that for some patients there should be one test and for others another. I think WOM's question was a good one and I hope she got some helpful information.
Nanay, I no longer -- if I ever did -- understand what you are talking about. Maybe this is a language issue but you've gone from liver imaging to breast imaging to liver function tests, to jaundice as a consequence of chemo, to saying I (I think it was me) know nothing about liver function tests (believe me, having had abnormal results I do know something about these tests) and the point is . . .? Lost on me.
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yeah, you do not understand me, I am fine with that. but I understand you clearly.nevertheless, I thank you, britchick, elmcity, thenewme and LtotheK. because you all keep me on my toes-- I keep learning because of you.
the beauty of it all-- is even if you do not acknowledge it-- our differences only brings out what we all have in common.
I am not a health professional so take everything I say as opinion and not fact. Consult your health professional for medical advice.
Diagnosis: 1/9/2010, IDC, 3cm, Stage IIb, Grade 3, 3/25 nodes, ER+/PR-, HER2+0 -
MOC,
i think you have to read WOM's post again, it is very clear she said,
WOM: I was given a CT Scan but everyone seems to get a PET. Is one better than the other?Should I push for a PET?
Nanay: I said I might not be the right person to ask whether CT or PET is better than the other. all I know is that both of these scans require that she take radioactive materials.
WOM: I have liver issues the ND recognizes and I have seen symptoms but my onc won't address due to the clean CT.
Nanay: I said print information about LFT and Fibroscan and show to her medical team (it could be hepathologist or onco or surgeon)-- and request that she be tested on liver function (what is the harm in testing liver function?)..i
it is very clear MOC that WOM has done the CT Scan, and if she wants more scan, I told her the other option is Fibroscan -- .
you said, WOM should do PET scan. but it does not mean she has not done the CT scan, she wasnt sure about CT Scan =so she wants another scan. IF she can push for a PET, I am sure she can also push for LFT and Fibroscan.
Maybe I have gone overboard- posting about breast ultrasound and elastography. But we really have to ensure everyone is clear that LFT is not Tumuor Markers...it can be a very important piece of information which people who are considering to take chemo or are already taking chemo, should take into consideration and discuss with hepathologist, ND and Oncologist-- I hope they can all sit together in a conference room-- at least for WOM's case (Specially if she considers Chemo and herceptin)...I would do the same for my mother.
really MOC, I appreciate your efforts from the bottom of my heart.. because of my googling- I found out MEdical City in the Philippines offers MDT Conference (medical team sitting in one room can discuss my mother's treatment options in one single appointment)
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MOC, I think WOM did have her CT scan. She wrote,
I was given a CT scan but everyone seems to get a PET. Is one better than the other? Should I be pushing for the PET. I have liver issues the ND recognizes and I have seen symptoms but my onc won't address due to the clean CT.
Speaking for myself, I would put the clean scan results in the "good news" column. There are integrative doctors who work with oncologists and cancer patients. I was going to see one shortly after my diagnosis for help with diet, but didn't because I see enough doctors as it is. After I was all done with treatment, I ended up joining WW instead to help me lose a few pounds. That worked for me at the time, since it helped me move towards healthier eating and also moved me into an environment that wasn't focused only on cancer.
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oh! I have to include poptart and digger to my list of people to thank!
good night everyone.
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thenewme, anyone can ask for a treatment or tests but it's up to the doctor to decide so I don't see what harm is done. The "not diagnosed but worried" threads are full of people telling others what tests and treatments are likely or advisable to be done. Is that the sort of thing you mean? If I've missed something please let me know.
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Like all of you, I find Nanay's enthusiasm, energy and sheer number of posts a bit overwhelming and suggested she slow down or she'd burn out and not be much help to her mother. Some of the information seems muddled or irrelevant and too authoritative. It's hard to agree or disagree with anything when the posts are getting left behind and new information constantly coming. That's why I said before I was feeling dizzy trying to keep up. But I don't see any harm is meant by it, just a desire to find out all she can and help her mother and anyone else she can help. I've seen some unnecessarily judgemental words used towards her even since my last post. And sometimes people bite back when they feel under attack, as Nanay has a few times, though mostly she has been remarkably respectful considering the number of complaints and insults.
Nanay, sorry to embarrass you, but saying to someone, "it's about time you should" ... etc is considered rude in most cultures. It's condescending. I worked with a Thai man for years and found there were many expressions he used that clashed and he was most embarrassed when he realised, so I'm hoping you are just having the same difficulty.
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This board is filled with people from all walks of life and we need to be accepting that some people's style of communication, beliefs, values etc are going to be different from our own.
It's early morning here so I'm going to bed. I hope I haven't added to the misunderstandings. Have a nice day all.
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Hi, I can only give support, i have found these posts to be both informative, and yes sometimes funny (well i post message with my experieces which trust me can be funny).
My experience with radio and coming to terms with the fact I needed it, was a nightmare, which left me both physical, and mentally drained, + coping with 2 teenage sons on my own didnt help, as I have little or no support. Then I had to decided about taking Tamoxifen which I was dead set against, but decided to - boy did i try to talk myself out of it, daily, i even had nightmares fighting against myself.
I became a sponge, and began to soak up any and every bit of information I could, eventually discovering this site, and others - which have helped immensely.
Also it helps to have a loving husband, boyfriend, or partner who makes a dam good cuppa tea, with a chocy biscuit when its needed.
Take care
Pinkie
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Is this thread for survivors who have used only alternative treatments? Can we please get back to the topic? Since the thread is so polluted, I think a new thread is needed.
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Thatgirl, I see you started a new post. From my eperience, most people do a combination of alternative and conventional. I am not sure if you want an alternative ONLY thread. If so, I would indicate the "only" part. A general thread sounds like a good idea. As far as people posting on this thread who are not answering the "only alternative" question....well even in normal real life conversations you can't dictate how someone is going to respond to you. WOM's situation is very specific and it is really hard to read it and not react with strong opinions and every good intention.
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WOM is not a survivor yet. And that's all the difference when speaking about treatments, hence the urgency and conflict here.
Also, Nanay, is there a reason you are posting one after the other, and not in one post? I am reading everyone, including you equally. Having sequential posts makes it really hard to follow a thread of conversation.
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With regard to Adjuvant Online, I stopped putting my faith in that data. I learned that for my risk category, the number was based on 27 cases. Further to that, the numbers are not absolute measurement, they are relative. A data pool based on 1 case out of a hundred, which with a certain chemo drug therapy becomes 2 cases out of 100 is given a percentage of effectiveness of 50 percent. Ugh.
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This one is for you Nanay. I realize that all of you have been tolerant of her, but really????
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My mistake, she had her CT. I stand by everything else. We will now get 7 posts from Nanay linking to various things from the internet that may or may not have anything to do with the subject at hand.
WOM, you are a survivor in my book. Once you're diagnosed, and still standing, you are a survivor. We want to keep you that way for many, many, many years.
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WOM - usually at CT scan is done first. If it shows any abnormalities, then a PET might be ordered. How do I know this? My husband had bowel cancer which spread to his lung. He had a CT scan in which the report indicated some possible lymph node problems around the digestive system - then they ordered a PET scan to see if there was any cancer present - there wasn't. They do try to minimise your exposure to so much radiation.
My CT scan showed a cyst on my liver which is quite common - it wasn't a problem during chemo.
Im my humble opinion Nanay is sounding more and more desperate and erratic. There are posts now all over the 'Not diagnosed but Worried' thread about this new breast test. She's telling everyone to print out articles and take them to their doctors. What she doesn't realise is that it takes some time for new tests to become standard and would not be available to everyone.
I wonder if she and her mother realised just how serious HER2+ve bc is and now that she has found out the truth she's in a panic, trying to find someone who will do herceptin alone, 12 months after surgery when it is way too late.
BTW, Nanay, my acupuncturist (a survivor of a deadly lymphoma) said he has never seen much success with the Gersen diet. Now this is a man who had to have stem cell transplant in his treatment. He had one of the nastiest chemos out there and he practices complementary medicine ie chinese herbs, acupuncture etc and he said to me yesterday that conventional treament and complementary treatment is the way to go. He's living proof, he would surely be long dead if he hadn't had the conventional treatment.
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Oh dear God! She's over there telling women who have lumps not to get biopsies because it will spread the cancer around. She's really dangerous with the stuff. She just needs to stop this craziness.
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It's like the mania stage of bipolar disorder.
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Thats funny, TonLee, I just PMed someone saying I thought Nanay was being manic.
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I'm on another board (not BC related) and we have a self-identified bipolar poster. You can tell when she's riding the manic pony. Just. Like. This.
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WOM, I think you posted earlier a question about Taxol and Herceptin. I'm not going to say that Taxol is easy, but my oncologist presented it to me as a less severe chemo (I'm sure this depends on dose and how often you get it, etc.)
I am Stage IV with mets to liver and bone (first diagnosis was DCIS with microinvasion, had a mastectomy and tamoxifen). Once patients are at Stage IV, many oncologists do less aggressive treatments. Sort of the mentality that it's a chronic problem to manage, it's incurable, so rather than try to blast out all the cancer cells instead try to keep them held at bay. Quality of life is important, so less severe drug regimes are more common for Stage IV.
My oncologist, for my particular case, started me on Taxol (once a week, 3 weeks on 1 week off) and Herceptin (once every 3 weeks). I also got Zometa for bone mets. After 8 months, I did just Herceptin and Zometa. Unfortunately, I had progression and "just" Herceptin didn't work for me. But I do know other Stage IV women who do Herceptin only for long periods of time.
Trying Taxol and Herceptin might be something to discuss with your doctor if you decide to do some kind of conventional treatment. I did lose my hair and had some GI issues, but overall did very well on this drug and had it for much longer than someone not Stage IV would have to take it.
You might do some research in general into the chemos that are given to Stage IV breast cancer patients that might be more tolerable or have fewer of the side effects that concern your particular case.
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Petjunkie - WOM is stage III not IV. Some of us are trying to convince her to have chemo/herceptin so she doesn't end up as Stage IV. Your situation, hopefully, will show her that even DCIS with microinvasion can lead to the worst outcome.
((((((((HUGS)))))))))
Sue
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Oh gosh, I'm not trying to convince anyone to have chemo. I understand she is Stage III, but she also seems like a smart lady who needs to make her own choices.
A few pages back she posted some questions about why docs don't give Herceptin only. (I don't know the answer). She then asked about Taxol, so I wanted to share my experience. If some of her concern is about how particular side effects would be detrimental to her particular situation, she might find an oncologist who will talk with her about whether or not there are advantages to doing the treatment that would be done for Stage IV-- perhaps not as aggressive. I have no idea if this would be an option for her, I'm just expressing my opinion that she mention it to her onc or do some research to see if it would be beneficial to her if she decides to add some kind of conventional treatment to her arsenal.
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Sorry Petjunkie - I misinterpreted what you said.
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I'mjust going to say it. nanay's involvement on these boards is at best intrusive and at worst, dangerous. We've all posted our concerns about the specifics, so I won't belabor the points.
At this point, I believe the only responsible action is to notify the Moderators. I did a few days ago and received an email reminding me of the "ignore this member" button - cute advice, but completely inadequate in situations as this.
And before I get various posts reprimanding me on supposed close-mindedness or vindictiveness, etc etc: I blended Western with complimentary the whole way. In a society where women are often given the not so subtle message to keep quiet and avoid fuss, questioning authority is just fine with me.
Dangerous, manic behavior, however, is not.
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that's true Nerida.. I know this is a public forum, but HAY!!!! not nice
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I also just noticed that many of our posts are on Nanay's blog. MOC, Sheila, Athena, many others, posts are there. Not sure how I feel about this.
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Go and have a look:
http://nanaymiriam.wordpress.com/
It's all there. When you first look at it, anyone would think it was her that had cancer.
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