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Say NO to Chemo?

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Poll Question: What have you tried outside of traditional treatment?
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Karen W. View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen W. Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2010 at 4:46pm
Hi Kim,
I liked that article you posted from Quality Health. Very good and a nice refresher of why we do what we do. I just made some salmon salad so I sprinkled flax seed on it. It was good. I will work that back into my routine. Thanks. I am doing well and hope you are too!
Karen
DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Galina2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2010 at 11:32pm
Hello, Donna,
 
that's great to keep the spirits up!
Can you tell us what is this Clodronate when you started taking it and what it is for? TxBig smile
Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2010 at 10:05am
Galina2,

Clodronate is a pill form of a class of drugs called bisphosphonates.  Other drugs you may have heard of are Boniva and Zometa.  I'm in a clinical trial and started taking it the end of November 09.  I take 2 pills a day.  The study is for 3 years and there is some thought it can help prevent recurrence.   You may want to ask your onc about this class of drugs.

Here's a thread on the subject.

http://forum.tnbcfoundation.org/bisphosphonates-clinical-trial-any-info_topic4591.html?KW=bisphosphonates
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2010 at 6:52pm
I lost 7 posts to this thread last night...will try again today.

Just wanted to add my voice to this.  I was dx in Mar 09.  I did not do chemo or rads.  I had stage 1, grade 3.  One primary lumpectomy, one re excision for DCIS in the margin.

I had a high life time of exposure to medical radiation, and many repeat scans during the diagnostic stage of my tnbc.  For now, I am refusing all scans or x rays except for thermography and ultrasound.    I may change this approach as more time passes.  So far, all is quiet.

I cobbled together a protocol from books, doctors, naturopaths, and Edge's CAM at No Surrender.  For the first year I was very good.....I did my supplements and life style changes, but I did slack off in the last few months.

My oncologist has told me that there are few patients that do zero chemo for TNBC and that I am her first one.  Are there any of you out there that have never done chemo for either positive or tnbc?

This thread has been a good reminder for me to get back to work!

All my best,
Bliss


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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2010 at 7:46pm
Take care Bliss....
Stage 2 2003
Stage 1 2007
BRCA 1+
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2010 at 10:31pm
Bliss,

My df that I've posted about was Stage 0 (DCIS) TNBC and didn't do chemo.  We thought her mets to the liver were TNBC, but it turned out to be another type of cancer.  She was dx with TNBC 2 1/2 yrs ago.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote briestarr Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2010 at 11:00pm
My docs have told me nothing about diet..  or supplements... what should I be on? 
All she told me was to get exercise .... that is it.  I met with a dietian once and all he did was give me a book with recipes in it.  So, what should I be eating...
 
Brie
DX TNBC Feb 2010
age 48
Lumpectomy 2cm
6 nodes removed, all clear
Chemo A/C and Taxol 8 sessions
Radiation 33x
BRCA 1 and 2 negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2010 at 11:08pm
Brie,

There's been another thread on the EDGE-CAM where we've talked a lot about it.  Please read through the posts and I think you'll find a lot of interesting information. 

http://forum.tnbcfoundation.org/edgescam_topic6149_page1.html?KW=CAMPN%3D10

http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1





DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 4:45am
Dear Donna,

I am so sorry for your df and her new battle.  It is a very serious fight she is in. 

Do you think there is any connection to the DCIS she had?  It sounds as if this is a new primary with different pathology and receptors but I can't help but wonder.  One of my doctors would say the same conditions that led to the DCIS could lead to other pathologies unless we take steps to intervene.  Did your df ever get her vitamin D levels checked?  I don't think that chemo is usually recommended for stage 0, even if it is triple negative.  Do you think she would be open to nutrition and life style changes at this point?

All my best,
Bliss
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 5:07am
Brie,

Don't expect your doctors to advise you on these matters.  They don't live there. 

A good place to start is with the Edge CAM.  He backs up his recommendations with some very seriously vetted research, and he knows how to see through studies that are otherwise invalid.  Edge's name is Constantine and he is the resident researcher at no surrender to breast cancer.  This is an excellent website to go and learn.  Many of us visit this forum and Edge is a genius.  Gina is the founder and she is a perfect gem with an incredible way of putting a funny twist in her posts.

http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1

Edge is really brilliant.  I love him.  Even my doctors who weren't convinced of the value of nutrition and life style changes are impressed with his treatises. 

Anyway, as I said, it is a starting point.




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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 9:07am
Also another great place to begin is right here in this forum.  We have some great threads on Vitamin D plus links in the News/Resource section.
If you use the search box near the right top of your page, type in Vitamin D and you should pull up alot of info.  You can google/bing Vitamin D and breast cancer.
It is important to have this very simple blood test, even your Pcp can do it for you.
 
I was never given this test either, had to ask my pcp to do it, my number was a good one.  Good luck..


Edited by trip2 - Aug 28 2010 at 9:08am
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CiGi Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 9:30am

Ms Bliss – I wonder why don't our onc's promote thermography?  I read a lot about it and it's a non-radiation way to detect very early development of cancer.   Has anyone else had one?

 

My lifestyle has always been very healthy, low-fat non-processed diet, active and exercise, and cautious of my surroundings.  I was born with hypertriglyceridemia (high blood fats).  I had immunities you could not believe.  My son had strep at least 10 times, I would get a slight sore throat and we'd both get tested and he'd be positive and I would not.  I've never had the flu and I'd be around all kinds of germs.   My husband used to get jealous how I never got sick.  I haven't had any colds since I was a teen.  I absolutely believe that immunities fight everything including cancer.  Because of my triglyceride issue I fell deathly ill 2 years ago and it caused pancreatitis and furthermore ARDS (lung failure), I had pneumonia caused from the breathing tubes (hospitalized for 50 days).  I almost did not make it.  I think that traumatic occurrence in my life caused my super immunities to drop to nil and allowed TNBC monster to creep in.  On top of the illness, all of the radiation involved tests (CT scans, x-rays...) guided the cancer to my breast. 

 

I chose chemo to hopefully kill any cancer cells that may be too strong for my immunities to fight since they are still weak.  I think if my BC was any other cancer than TN, I would not have considered chemo at all.  Hopefully afterwards I can rebuild my immunities back to the way they were and it’ll never return.  I don’t want to do radiation.  I believe radiation was part of the cause so I’m really afraid of it.  I don’t know how long it takes to rebuild our immunities after chemo…

 

Also when I was in the hospital with my lung issue I was given a blood transfusion.  I’ve researched that you can’t get cancer from it, BUT it’s not conclusive.  My son is extremely smart scientifically and he believes if there were cancer cells in the blood your body would kill it because it’s foreign, but it would need your immunities to do that, well, if my immunities were gone isn’t it possible?  If they can’t determine if I still have cancer from blood tests, then how do we absolutely know if this same cancer isn’t in our blood banks? 

  

Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 10:12am
There is a study in the Resource section stating they believe TN is more susceptible to running thru the blood system instead of or along with lymph glands.  I was told we cannot give blood once we have cancer.
My sister has Leukemia.  If the day comes, heaven forbid, she needs a transfusion I cannot help her but stand helplessy by although I am the best choice being her sister, no parents, because I have had cancer.
 
I honestly do not feel my immune system has been right since my second round of chemotherapy in 2007.  I pick up all kinds of goodies plus I feel I have never recovered like I did after chemo in 2003.  Just smacked the crap out of me in 07 and I feel I'll always have to deal with a scewered up body because of it.  Or maybe because of having treatments more than once, who knows.  Or just maybe I have "that" kind of body, more receptive to cancer, less compatible to chemo, breaks me down for good.
 
My cancer most likely is genetic, still think alot of cancer is genetic, my opinion here, not a doc or medical researcher from some big hospital. Our bodies are what they are whether we ride bikes all day long, eat only green things, or drink beer and smoke, we are what we are.   They can't even figure this TNBC business out yet, how can we sit and look at our past behavior when there are no facts yet?  These are my thoughts, again I respect the comments/feelings of others.
We do have to consider our personal feelings, make big decisions and I respect others in how they feel.  I just don't think there is anything we did or could have done to prevent this disease.  I refuse to blame myself, my behavior, how I ate or whether I was a marathon runner, in the sun enough, had some scans, or blame other women because they have been diagnosed.  Not our fault, imho.
 
But, I wouldn't change having chemo/rads as that is why I am probably here to write and gripe about it's side effects, I'll take the trade off.  Scans help save lives and catch c earlier in many circumstances, I'll take my chances.  Something will get me eventually, probably nothing to do with cancer but who knows, that is what I am saying or asking??  Too many maybes, guessing....
 
I won't get into the radiation thing, everyone's experience and feelings matter, steer their lives and decisions.  I personally have had enough scans to light up the nearest town, just since diagnosis in 2002 but still feel the dosages won't bother me, it's a choice, I don't want cancer again, but again maybe all the scans/rads will get me.  If it gets me because of radiation so be it, I made my decision to be proactive and on top of things best I can.  I want to live.
 
Off my soapbox now, love ya all


Edited by trip2 - Aug 28 2010 at 10:29am
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 10:17am
Cigi,

I know if you've had cancer, you can't be an organ donor.  As far as cancer and giving blood, I don't know if they'd let you or if there is a time period like 5 years of disease free before they'd allow you to give blood.  Now I don't know how they screen for it because if someone is giving blood and doesn't tell them, there's no screening. 

Have you read Dr. Schreiber's AntiCancer A New Way of Life?  It's an excellent book and I'd suggest reading it.  In the book he talks about 2 people that received organs from a person that had died.  Both got cancer quickly and the first died, the second they figured the connection out to the donor and removed the organ.  What they found is that even if someone had cancer 20 years ago, there could still be circulating tumor cells in the body.  Our natural immune system will keep them at bay and not allow them to grow.  When a person receives an organ transplant they get immuno suppression drugs that prevent our bodies from fighting these cells.  This is what allowed the cancer cells to grow out of control with these organ recipient patients.  Dr. Scheiber explains this in more detail in his book.  I always wanted to be an organ donor and it saddens me that I won't be able to since I've had bc.  Here's a link to his website:

http://www.anticancerways.com/
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote CiGi Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 11:11am

Thanks again Donna, I have not read the book, but will.  I am a read-a-holic with nutrition and health, always have been.  I'm still new to all the breast cancer info and read everyday.  I think it's pretty unlikely I got it from blood, but I don't totally dismiss the possibility. 

 

I try to stay positive and look at this way, if I did not get the treatment I did 2 years ago, I would not be here today.  When I was in the hospital, I did not know how serious ARDS was.  By day 3 in the hospital, my organs were becoming pale, which is the start of them shutting down.  My doctors pumped me up with fluids trying to get oxygen to my organs since my lungs were not, and it worked.  Mind you I went from 130 pounds to 185lbs, 55 lbs water weight in one week!  Talk about water retention.  I swelled so fast that my skin blistered open (3 inch dia) on my thigh because it would not stretch anymore.  I would not have changed a thing.  It brought me back and saved me.  My doctor - Dr. Edwin Bernardo saved my life.  I'll credit him always.  It was very sad, he passed away just before my one year anniversary from an aneurism, and he was 51 with small children. 

 

I’m so grateful to still be here and I just have another hurdle.  I’m also so grateful to have a family like my TNBC family to help though it.

 

Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tailormade Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 12:25pm
I think that having chemotherapy and/or radiation permanently disqualifies a person from giving blood.   I don't know about cancer in the blood supply.  I think the problem with cancer for the person who has it is that the body does not recognize it as foreign because it isn't.  However, I think if one person's cancer was in another person's body it would be recognized as foreign by the immune system.   In the book I recently read about the history of breast cancer, there were physicians who tested whether or not breast cancer was contagious by injecting themselves with breast cancer.  One physician made all his students inject themselves with breast cancer (even though apparently they didn't want to do this).  Several had an immune response, including swollen lymph nodes, but they all recovered and did not go on to develop cancer.  This was quite a while ago, but it would be interesting to have known whether they developed any cancer immunity from injecting themselves.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 12:57pm
Oh my does this really go on??
Stage 2 2003
Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tailormade Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 2:08pm
Injecting oneself with breast cancer?  It was a long time ago.  I can't recall right now which century the author was talking about when writing about physicians injecting themselves, but it was not recent history.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 4:37pm
Yes Pam,

I forgot about our own threads here on TNBC on alternative and integrative info! 

I was trying to think of a comprehensive list for Brie to refer to, and Edge's CAM is the first one that always comes to mind because of the citations he uses; doctors are more comfortable seeing those references. 

But a very important part of the puzzle is right here and thank you for reminding me too!  I also learned so much from all the links you and Nancy post.  Made all the difference in the world.  Truly.

Ten thousand thank you's!

Bliss


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Post Options Post Options   Thanks (0) Thanks(0)   Quote CiGi Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2010 at 1:10am
When I was in the hospital with ARDS, I was on high doses of an immunosuppressive drug, so maybe my thoughts of the blood received was not so far off.  If those organ doners recieved organs from people who had cancer even 20 years prior and still got cancer.... I wonder if I would be in a similar risk group as them if I received blood possibly with cancer cells and on high doses of immunosupressive meds.   Proabably not likely, but who knows, maybe?  Always wondering and will never know.
Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.
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