Survivors who have used only alternative treatments

[Deleted User]

is lago leaving? I do not think she is..

a few people asked me to go-- in the heat of the moment.. but I did not go away at all-- maybe I am thick faced..

I guess no one should ask anyone to go away-- unless she/he is a moderator..

when I said let it go-- I meant-- let the bickering go away-- but people should stay-- just let go of the bickering..

wornoutmom

Just so everyone knows I was pointing out how words can be read differently thus creating a tone for the reader.  I was hoping we could all use this insight to move forward without the bickering.  Sounds like Lago was sincere.  Problem is these are emails so tones can be read/misread so we should all be careful in the wording to better promote a productive discussion and to help eliminate misunderstandings.

I do have 2 questions to move past drama..lol    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.

Secondly I read a woman had TH only for chemo.  She said that Taxol is less toxic.  Has anyone else had this combo or know if Taxol is less toxic as mentioned.  I am also still perplexed if Herceptin won't work with out chemo than why would I need the many months of Herceptin after the chemo?  This just seems so contradicting to me???  I would be on herceptin already but my onc refused only herceptin. 

anniedd

I just want to say that after reading so many posts on diffferent threads that i feel like from reading so many different stories that I am thinking to forego all treatment as it seems it is the luck of the draw..no matter what you decide.....

[Deleted User]

anniedd,

it seems you have been newly diagnosed.. if it helps it took me 6 months to get to a point to say that I can think coherently .. regarding my mother's BC. If I were the one who was diagnosed, I would probably doubly petrified..

stay on and write notes if you can in a notebook (traditional paper and pen)-- do not base your decision making on forums..

assess the benefits and risks of taking the treatment plan given to you by your conventional doctors.. then see a few NP or doctors practicing integrated/complementary medicine as well..

you can ask questions if you do your homework-- believe me..

anniedd

you dont even have breast cancer.......

[Deleted User]

annie,

I know, but I also have a risk of getting it, us my mother was DX with BRCA Gene2 mutation.. i mean well..

[Deleted User]

hi wom,

how did you know that you have liver disease? CT/PET Scan both expose you to radioactive substances.. not sure if I am the best person to ask..

there are other non-invasive tests to know if you have abnormality in your liver.. I remember I had some blood tests and was told that I have fatty liver-- and need to do something on my diet to reverse that..

there is also elastographhy ultrasound-- wildly used in the UK but not sure if accepted in the US.. you can repeat this test without risk as it does not have radiation.. the other one is thermography...

anniedd

I KNOW YOU DO

[Deleted User]

another one is Liver Function/Detoxification Potential tests - click here (I just googled it) - my mother will undergo this test next week as well..

you also mentioned your ND told you you have liver issues-- I assume he has ordered some liver function tests for you as well... I would not be surprised if CT/PET Scans would not see this abnormalities yet-- unless it has become a full blown tumuor or cyst..

how about ultrasound scan - refer here?

anniedd

do you think you are a doctor...you seem to have so much to say

anniedd

until you are I think you should watch what you are saying or get a life

anniedd

other than breastcancer.org.....you are way tooo involved

[Deleted User]

anniedd-- I understand why you are acting like that.. if you need someone to vent your frustration for having BC.. I am an easy target-- I am used to it now.

if you can bring a doctor to this thread to answer random questions-- I will stop responding.. otherwise you have to bear with me..

Hindsfeet

annied...when someone as close as your mother is dx with cancer then it's personal. My daughter was more concerned that I proceed with my recent lumpectomy than I. I don't know what I would have done without my daughters support. I respect nanay for being an advocate for her mom...knowing also that her mother dx puts her at higher risk for cancer. Nanay is doing everything possible to keep her mother well. And, it seems that nanay has learned a lot that she can pass on to all of us, who so desperately need the resources she's provided.

Thanks nanay for coming along side of us...for your encouragement...your all the info you've shared that not only is helping your mom, but us.

luv_gardening

Annie, or is it Nancy?  You said in the stage III forum you were going for scans on 13th April.  That must be scary for you.  I hope all goes well.

Meanwhile this forum is for those with Breast Cancer or their carers so Nanay has every right to post as much as she likes.  If my mother had cancer at that age I'd be doing the same. 

I suggest you pamper yourself, keep yourself busy or whatever it takes to take your mind off all your worries for a few days. 

suzieq60

anniedd - I've sent you a private message.

 Sue

Member_of_the_Club

WOM -- CT scans are probably better in the sense of fewer false positives than PET scans.  But they are different modes of imaging.  The sequence I usually hear about is first a PET scan and then a CT scan if the PET shows hot spots.  Some doctors skip the PET and go straight for the CT. 

digger

Um, Nanay, you do realize we've had doctors with breast cancer themselves (and they have identified themselves as such) adding comments on this thread, but if any of their comments don't agree with your view, you've attacked them in your own way?

DesignerMom

wornoutmom-  About the PET scan.  I may be wrong, but usually they do the PET and CT together.  I think the PET may be more "big picture" screening and the CT sort of zeroes in on areas.  I could only have the PET as I have issues with the dye that the CT requires.  If you need a PET, that is reason to have it.  You should know that you will be exposed to a very large amount of radiation.  As your body is still giving off radiation for something like 12 hours after, they made me stay away from young children and pregnant women after my PET for a period of time.  Good luck.

thenewme

Hi Britchick - Thank you!  My sentiments, exactly! 

annettek

I will echo britchick in saying be cautious with ANYTHING you read online...nobody can truly diagnosis and treat your particular condition on a posting forum...we can swap ideas- and that is all they are at this point...be a bit careful in warning off diagnostic tests with tales of damage, etc...as the last thing we need to do is make our choices based in any more fear than we already have. It is sort of like telling someone who gets in a car...you most likely will crash and kill yourself...instead of, be careful and pay attention to everything around you.

 just saying

scuttlers

Thank you Brit Chick! Very straight forward and so to the point. I have also been in healthcare (over 25 years) and wanted to say exactly what you have said, my chemo brain couldn't come up with the words.

poptart

I say Amen to what Britchick said....

annettek

I want to clarify I was referring to ALL advice given online- both conventional-alternative or whatever...it is dangerous when people come off like professionals of ANYTHING for there are others who take what they read as gospel. I am not saying the people who may take the advice are ignorant, for people in fear can leave rational thought easily behind.

Same holds true in person. I question top oncologists (or any MD for that matter) as much as I do anyone else. It is always good to pause and reflect, and research what options there are. Believe it or not, all medical professionals are not out to kill us nor are all natural practioners only acting in our best interests. Just the law of the land.

A simliar fight was waged back before pharma and biotech became almost interchangeable with the new directions of medicine. The saying went that Big Pharma was for profit while Biotech was all about the science. What a crock. Biotechs that did not turn a profit soon went out of business. There are no hard and fast rules just like the fact that generalizations can be deadly.

All conventional medicine is not bad. All "naturals" are not good. People need to remember that todays drugs were borne out of herbs.

 I was raised in the late 60's early 70's- "Question authority" was our motto. Still holds true today.

Mountains1day

Britchick,

I was thinking what you so eloquently said, Thank you!

elmcity69

Britchick: YOU ROCK. Eloquent, concise, and: THE TRUTH.

I also think the "ignore this member" button is quite ingenious, when all else fails.

digger

Thank you Britchick.

painterly

"Ignore this member" is not really a good idea for newbies.... better to let them see the pros and cons from the members so that they don't get overly influenced by one group.

wornoutmom

Thank you so much on the PET/CT talk it sounds like they are not skimping on me.  This place has massive errors so I have had to monitor everything.  

Wondering if anyone can answer the herceptin alone question especially since it sounds like doctors are on here.  It just really makes no sense to me and would really like to know the medical reasoning behind this.

Nanay I am so very sorry people feel the need to publically be so unkind to you.  

I felt she is just giving me data to reaseach myself as she knows that I am not a person to take anything on here as gospel but just to use as a starting place for me to dig into.  I am perplexed at the references to Nanay and how she has no athority to make such suggestions.  This whole site for the most part are people sharing their research, advice on side effects, and experiences. We have had pages and pages of such recommendations and it has been okay until Nanay does the same.  When people feel they have something to contribute they share what they have found that is all she did.  NONE of us should use anything on here as their sole decison making guide.  It is a starting point for all  of us to use to and as it was said even a Doctor on here can't recommend until they have all the patients information.   This needs to be applied to us all not just Nanay.   

Member_of_the_Club

I'm going to step in lightly here.  I think we all trade all sorts of advice -- I know I do -- and we aren't necessarily doctors.  I think, however, there is a concern because nanay's posts are confusing and often not just wrong but way off point (for example, her posts about GBM, brain cancer) and she posts a LOT without much filter.  Its like she picks something up off the internet and just spits it back out here.  And i think she is also very quick to not just take offense but attack (for example, saying people are angry at cancer and taking it out on her).  And finally, she backtracks a lot so other women come on here and point out an error and she makes it seem like she didn't say it at all and then attacks.  Its just frustrating.

I have much more patience with women here who really research alternative treatments and have a coherent approach and at least a filter. 

WOM I'm glad you are getting the tests you should.  I hope and expect you will get the all clear and will finally get going on your treatment.  As for herceptin alone, I have a guess (I'm not a doctor, remember).  I think they like to combine treatments because while your cancer is her2+, its possible that not all the cancer cells have the same number of her2 over expression or that, for whatever reason, that every cancer cell will be killed by that particular med.  So they hit it with several meds so that the cancer cells that dodge the herceptin will be hit by something else.  Thats why almost all breast cancer chemo protocols (maybe all?) involve several different drugs.

BTW, thats similar to why they do a series of treatments.  Many of these drugs work at a specific point in the cell's lifecycle so if the cancer cells aren't at that point, they won't be killed by the chemo.  The hope is that they will be at that point during the next round.