alternitive is only real hope for stag 4 mets

inga6060

I haven't read a lot of posts of anyone doing much alternative under this topic.  Well, I am.  I have had stage 4 w/mets for over 2 years.  I did drop the ball, and made it worse.  My story is too long to tell.  [link removed by Moderators] The only meds I am on is a couple for pain.  I have gotten a couple of xgevia shots.  Not sure if I am gonna continue or not, considering what I have read about not rebuilding new bone and impacting immune system.  I am currently taking poly mva.  Which according to oncologist is a mild form of chemo.  It just doesn't destroy your body, it actually supports your cells.  And a few other supplements.  So, if someone out there is actually doing it alternitively, let me know.  I am just seeing a lot of drugs on this discussion board.  I have been in the supplement world for over 15 years.  I am a state certified master herbalist and nutritonist.  how did I get myself into this mess, since I know so much.  Once again its a long story.  if you want to see it let me know.

abigail48

couldn't get the link

exbrnxgrl

inga,

The reality is that most women on bco use conventional tx. You may also notice that the moderators have placed a statement in the header stating that ," Breastcancer.org does NOT recommend or endorse alternative medicine." So although some have gone this route, it's not the same as being on a forum dedicated to alternative tx. Hope it goes well,for you.

Hindsfeet

Igna...I'm alternative if possible, but at stage iv you get a whole new set of cards to look at. I have heard of stories of alternatives beating cancers, stage iv, but I've not known personally those who made it only on alternative treatment. At stage iv you make life choices, time choices and hope whatever you choose works well for you.

 

Momine

Inga, I can't find your page on gofundme. Can you provide a direct link or a name to find it by?

new_direction

hi I just searched my way to what I think is the site; [sorry, link removed by Moderators as un-approved links soliciting funds are against forum rules]

Momine

New, thanks.

exbrnxgrl

just read the gofundme page. For once, I'm at a loss for words.

sandcastle

Ditto......Liz

Momine

Bronx, ditto.

NancyHB

incredibly.......sad, for so many reasons...

Momine

Hindsfeet, FTR, it appears, from the gofundme page, that OP is on hormone treatment, or was anyway (after being DXed stage 4). You are not alone.

inga6060

Sorry, I thought this forum was just about alternative medicine.  Hence, the title.  I apologize.  Its just something I'm passionate about.  I seem to be doing pretty good on it.

Momine

Inga, you have nothing to apologize for.

leggo

I swore I wouldn't get into wars with the passive aggresive comments anymore, but my mind was just blown by this comment.

"So although some have gone this route, it's not the same as being on a forum dedicated to alternative tx." Followed by the obligatory "hope it goes well for you".

This IS the forum for alternative treatments, whether you like it or not. 

Inga, totally agree with Momine. YOU have nothing to apologize for. 

MusicLover

Here is a link to information about a woman who used alternatives to combat stage IV BC (she recently passed away but this is after 10 years), it says that she used Poly-MVA too.

Another option for you to look at is Cannabis Oil, quite expensive too though and tough to get.

Hindsfeet has given you great advice too, by doing conventional also you can slow the beast down while you line up your alternative medicines.

Of course you are free to choose your own path. I think we all just want to help you. Best wishes!

 

Momine

Musiclover, I would love the link.

inga6060

I really appreciate the positve feedback.  Just to let everyone know, western medicine pretty much wrote me off.  They had no treatment except tamoxifen, which I am on a natural equivalent.  Shown on bloodwork to b second most effective against the cancer in me.  Tamoxifen scored only 4%.  According to them, I should b dead.  I also, have gotten 3 xgevia shots.  Not sure if I am gonna continue with those or not.  May impact your immune system.   I am doing great.  I feel I am getting a little better each day.  Its slow, but at least I'm not staying the same and not losing ground.

inga6060

Oh, and music lover, I would like that link as well.

exbrnxgrl

Leggo,

Let me clarify, I meant that overall, bco was not a place where you will find a great number of women doing alternative only tx. I did not mean the alt forum specifically. If one is looking for lots of people doing only alt tx, there surely must be better places than bco, especially with the mods disclaimer. My comment is neither passive/agressive nor are my good wishes "obligatory".  The op was wondering  why she didn't see many posts by those doing only alt and I offered an explanation, IMO. My good wishes for all who have bc are totally sincere and never obligatory. I know that you don't know me, but I never say what I don't mean. If I occasionally don't express myself clearly and my point is misunderstood, I apologize.

Caryn

Moderators

We are sorry to have had to remove the links to inga6060's other site, where she is soliciting funds to cover medical treatment. We don't have a problem with the other site's role, however our Community Rules specify  

No 16 You agree not to advertise or promote any goods or services or solicit anyone to buy or sell goods or services, or to make donations of any kind, without our express written approval. "Junk mail", "spamming", "chain letters", "pyramid schemes" and similar activities are strictly prohibited.

As such, the links have been removed. However, inga6060 is encouraged to post her story, in her words or as told by her husband, here for all to read, without links to her campaign. The story was not the issue, it was the links to a funding campaign that broke the rule.

We hope you understand that this site is for emotional support, not individual financial funding campaigns.

Inga6060, we wish you the best with what you decide to do, and hope that you gain control in your fight.

The Mods

inga6060

Sorry, didn't even think of that.  Its such a long story, I didn't want to have to retype it.  I apologize.  Want everyone to know that was not my intention, to solicit funds.

Moderators

Dear Inga6060

You are able to cut and paste most of the story from the other website, if you want, so people can understand your problems. Provided you delete the appeal for funding bits, that would be fine and people could then understand your situation and comment freely.

The Mods

Michele2013

Caryn,

After researching, now I know why you were "at a loss for words". 

Good wishes to you Inga, I hope things work out for you.

On a lighter note, wish someone would go and fundme!

lightandwind

I think the wave of gasping with the consecutive loss for words is kinda rude. 

I understand why you are at a loss for words though. That is often how I feel when I go to the chemo boards and the stage IV boards BUT I don't chime in and say that, circle around the person pitying her in unison with others, making a spectacle out of her. I really doubt that is why Inga posted here.

Inga I am sorry. Unfortunately Caryn is right as this is not a friendly, welcoming supportive site for those who choose alternative treatments. 

Despite, Yorkie's belief that we're all dead, many of the people who use alternatives who have fought unsuccessfully for a supportive place here at bco, have just decided to move on, found other websites, groups, and networks, though unfortunately there aren't many devoted to women with breast cancer, or who have the great format that bco has. Please let us know what kind of feedback you are needing and your reason for posting this, so that you can feel supported as you deserve to feel.

inga6060

I am new to these kind of blogs.  I just saw a lot of natural things being mentioned, so I thought I was going to get some new info, or feedback, as to what I was doing. (positive).  I feel when you are stage 4 you have nothing to lose and everything to gain.  Thought there would be more people out there.  I guess if you don't know much about alternitive treatment, and you want to post something, words of encouragement, positive attitude. There are people all the time that beat this naturally.  If they didn't, the cancer healing centers would go out of business.  I think the problem is, I have more knowledge about this.  That's why I'm really not getting any help with the course I am following.  I think you are right I need to find a different forum.

exbrnxgrl

lightandwind,

Thanks for understanding what I meant. Yes, this is a thread on the alt forum, but the alt forum comes with a bold face disclaimer by the mods recommending against alt tx. IMO, that might be a big reason why one doesn't see more activity by those doing alt tx. If I were seeking alt tx, I would be looking for a place that whole heartedly accepted and supported it! I also agree that bco has a great format so whatever path you choose, I really do wish everyone the best (not an empty sentiment:)

Caryn

juneping

i think it's so insensitive and condescending coming into an alternative forum and tell ppl they made a foolish choice of not choosing chemo. may be it's majority vs minority or something else. as ppl who decided not to go the conventional route, we are already in the minority, we did our homework, we believe in something that conventional tx receivers don't. we know that. we understand the ramifications of our decisions. But when we come here to share our thoughts and emotions, and these negative condescension just keep popping up left and right. how does it make you feel when you did all the conventional tx  and still got a occurrence and we come and say you were foolish? 

yes BCO DOES NOT support alternative, but still there's a place for us to share. it does not mean BCO create a place that's a target so you have somewhere to throw your insensitive comments on us. 

i just don't get when there's a chemo subforum that you don't go there to encourage and celebrate their chemo but coming here to tell us we are wrong/foolish. it's just made me upset and i don't understand the intention behind your actions and it just screams rude, insensitive. just because you are behind a computer screen, doesn't make you less of a human being.

abigail48

that disclaimer from the moderators is fairly new & perhaps posted to head off a law suit or something like that.  years ago when I first came onto the site there was a forum for only alternative therapies.  that was where I posted.  It was when I was still new to the internet & didn't know how to edit.  also my life has been alternative, it was a long time before I realized that one size doesn't fit me that it does fit most.  anyway I was not believed there, called a 19 year old male troll, the same proponents of only conventional were there to harass me & others, others who mostly moved on.  that whole thread vanished at some point & my join date moved up 6 months or so.  do stay on.  we need you

lightandwind

I think bco adding a disclaimer is understandable. It is just denying any responsibility on the part of bco for people who make their own choices of treatment. They don't need a disclaimer for conventional treatment because everyone who has conventional accepts full responsibility for the outcome of their choices when they give their consent for treatment by signing the disclosure form which states that you understand that the treatment may kill you.

Lily55

juneping, lightandwind and Caryn, i am with you, as a chemo refuser, i always feel the need to justify it, i wish there was a supportive place to discuss alternative treatments ....