Calling all TNs

joyoflifegirl

I want to post my recent experience with DCA, as it may have saved my life. I was diagnosed with TNBC (full
mastectomy + 5 sentinel nodes Nov 2013) with two nodes positive, ACT
dose-dense + radiation. I had my Circulating Tumor Cells tested using
Maintrac prior to chemo, and had a total count of 500,000. After Chemo
the count has spiked to 3,250,000(6x higher). I waited a month and tested again, the count
had skyrocketed to 6,000,000(12x higher). Apparently this is a common effect of
chemo, and if this happens the risk of death is very high. Working with
Dr. Kahn at Medicor in Toronto, I went on an oral regime of DCA with
supplements to prevent side effects. This was July, 2014. A few weeks later I tested again
and the count was 1,000,000 (80% reduction). I was ecstatic and so relieved. I tested
again a couple of moths later (end of September 2014) and the count was 250,000 (95% reduction). I don't notice
any side effects other than a bit of fatigue and some absent-mindedness.
Dr. Kahn carefully monitors blood tests and any signs of neuropathy, which I don't have. It
is expensive, but I consider it a miracle. I am going to stay on it and
hope the count gets to zero. I highly recommend these blood tests for
anyone, and at least trying DCA with careful monitoring to make sure it
is working. Get it from a reputable provider who knows how to prescribe
and prevent side effects. I can post the Maintrac results and/or links if anyone is
interested.

Meadow

Joy, I have not heard of this test or cell counting, so I have some research to do. Thanks for sharing and I am so glad you have had great results. Very thankful for you

SpiritBlessing

Hi again...Luvmydobies, where do you live?  I may PM you soon. 

Joyoflifegirl what is DCA, never heard of that.  Also, great news of your results, it sounds miraculous...good for you!

Hope you all have a good weekend...Lucy

Luvmydobies

Spirit, I'm in Pittsboro North Carolina. 

I've never heard of DCA either Joy, but glad you're doing well!! 

joyoflifegirl

Thank you everyone. DCA is Sodium Dichloroacetate. It is a drug that has been used for years to treat other ailments, but researchers in Canada discovered that it may be useful for cancer. It is used worldwide, but off-label, as it is not approved for cancer by the FDA or Health Canada. Here is a link with additional info, if anyone is interested.There are several places to learn more about it, but these have good links in the pages. Medicor is my doctors office.

http://medicorcancer.com/treatments/dca-therapy/

http://www.thedcasite.com/

The test I took is called Maintrac. There is another commonly used test for circulating tumor cells called Cellsearch. They use different methods, and I went with Maintrac because there is some evidence that it is a more sensitive test that more accurately detects fluctuations in the number of cancer cells in the bloodstream. I believe it is a good idea to test before and after chemo, because a study at a University in Germany found that when cell numbers spike during chemo, they continue to climb, and the risk of relapse is very high. This seems particularly important with TNBC, because we have no other way to protect ourselves from cells in the bloodstream spreading, like other types of BC do. Here is a link to the Maintrac site and one of the studies that used their technology. 

http://www.maintrac.de/diagnostics/home.php?lang=E...

http://laborpachmann.de/pdf/Publikation%20139.PDF

I hope this is helpful to the group. I have gotten to know people in Toronto who have literally been pulled off their deathbed by DCA, though I am also aware that it does not work for everyone. I am just trying to stay out of that situation by being as proactive as possible, since I was one of the women whose cell numbers spiked during chemo, as described in the study. I would like to say that if anyone is considering trying DCA, please get it from a reputable provider and under care of a physician as it can have side effects if not prescribed properly. There is a very specific protocol for taking it, and supplements to prevent the side effects. Love and prayers to everyone on the site.

BanR

Thanks for the information Joy!

BanR

Hey Annie ( Cocker ..) Belated Birthday wishes...Yours was on 21st October and mine was on 25th October. I celebrated my 36th Birthday and also my 1st bday post cancer diagnosis this 25th!!

Love and hugs to everyone!!

Meadow

BanR congrats on both reasons to celebrate, and Cocker Happy Birthday!

Cocker_Spaniel

Thanks BanR and Meadow but mine was on the 22nd October.  It is my 47th wedding anniversary today (28th).  Got delivered at work a huge bunch of beautiful red roses from the old fella.  He never ever forgets to send them.  Congratulations to you on your 36th birthday and also for meeting your one year anniversary post BC.  We are getting there girl.  So hopefully those birthdays will just keep on coming around.

adagio

cocker - congratulations on your 47th anniversary - that is surely a rare thing in this day and age - most definitely worth celebrating!  Congrats also on your clear tests - keep on doing what you are doing. I also got a good report on my mammogram and now my oncologist only wants to see me at 6 month intervals instead of 3 months - so this is very encouraging.

MomMom

Congratulations Cocker!  We celebrated our 47th this August.  Looking forward to 50! 

Ban, Adagio and all, we all celebrate your good reports with you!!!  Love getting such great news.  So encouraging to everyone.

Radical2Squared

Anyone here take or have researched coenzyme Q10? The nurse practitioner at my gp' s office recommended it after she heard I had adriamiacin as part of chemo. At first glance it seems it's used to help the heart....and research is showing that people with certain cancers (including breast) are low in Q10 so it is being added as a cancer preventative and to fight cancers.

adagio

Radical - I took coQ10 while I was on Adrimycin - this was at the recommendation of my integrative cancer physician. It was a very specific dosing for while I was doing chemo. After the required dose, I stopped taking it, but have recently started again, mostly because I had a lot left over, and I want to use it up - it is an antioxidant, and I have heard that it is a good supplement.

Radical2Squared

ha ha! They are as conflicted as I am!

Thank you for the links. Looks like you don't want to be deficient, but you don't want too much....same with all vitamins, minerals, and enzymes I suppose!

Radical2Squared

I went in for an endoscopy yesterday. My doc wouldn't refill my prescription for reflux until I did. I woke up and once recovered enough had my little conference with my doc.

He said my esophagus looked good but my stomach "did not look happy" and he took a few samples to biopsy but not to worry. How do you tell a girl that still has no hair on her head that you sent out tissue to be biopsies but not to worry?

What the heck? Is it even possible that I could have stomach cancer after just finishing chemo? If my stomach issues are caused by stress, this is not helping!

NavyMom

Radical:  I had a similar experience with an endoscopy that took place about a year after I finished chemo.  Esophagus looked fine but stomach had inflammation and 2 biopsies were taken that came back benign. DX gastritis. I started with terrible heartburn after very first chemo and I am 5 years out and still take prilosec (40mg)  for it.  I have tried 3 times to ween myself off and my stomach says NO WAY!.  So now I take it every other day and that is working pretty good. 

Do try to remember that  "Its nothing till it's something"  .....truly, not worrying is impossible. 

Will be waiting to hear back from you.......thinking good thoughts and sending positive vibes for good news.

Luvmydobies

Radical I had an endoscopy in January for a squeezing/gripping type pain around my navel that would mostly hit in the middle of the night but at other times as well. I had no symptoms of reflux or gastritis but that's what my diagnosis was. He took biopsies from different areas and tested for ulcers, H Pylori, celiac, etc. The only thing that came back positive was reflux/gastritis. After my scope I kept asking if it was cancer and he assured me it wasn't but the biopsy would tell for sure.  So yes it is scary anytime we hear "biopsy". Did you get your pictures they take on a printout? My doc gave me mine and showed me there were no tumors, but he still said he biopsied for everything. Maybe the chemo just caused your tummy to look angry because of inflammation or something. Hang in there and keep us posted. I'll be praying for good results. XOXO!!

PS: That Propofol they give for sedation is crazy. My husband said I told the GI doc he was my favorite and that I loved him! Hahaha! 

simplelife4real

Radical, I also had a lot of heartburn issues after finishing chemo and it took a while to ween myself off of Prilosec.  I also had to have both an upper and lower GI after chemo was over with biopsies.  There was no cancer, but it did turn out I had both Crohn's disease and Celiac sprue.  I think chemo really does a number on our GI track and it takes a while for it to heal.  I'm about 8 months out now from my last chemo and feeling much better.  It's good that you are having your GI tract checked out.  There are lots of other things that can cause problems other than cancer.

Radical2Squared

Thank you ladies for the similar stories! I'm feeling a little better about the whole thing!

I had reflux issues starting in college. I've been on Nexium, prilosec and others since then. I'm going with the theory that chemo does a number on the gi track...but I still think the word "biopsy" should be banned for a year or two!

Luvmydobies

I forgot to mention I had a colonoscopy as well as the upper GI scope, which was negative. I think the chemo combined with three bouts of C Diff caused my issues. Now I'm stuck with IBS-D. Sucks, but not cancer! 

Cocker_Spaniel

Radical another reflux sufferer here.  I have had it since starting chemo.  I still take my Losec as it makes me feel nauseous if I don't take it.  I certainly notice it if I miss one.  Try not to worry, as we all seem to be in the same boat. 

JAN69

Well if we are confessing reflux, add me to the list of sufferers.  I have a colonoscopy and endoscopy scheduled for early December.  I had heart burn before chemo and rads, however.  I'm totally dependent on drugs so I hope doctor finds a cause that can be treated.  Oh the fun.  Jan

lilyrose53

Radical,  add me to the list.  I never had heartburn or stomach issues until chemo.  Now it looks like I may be a lifetime member of the Prilosec club.  I'm hoping to wean myself off eventually.  Try not to worry.  Sending good thoughts your way.

Hugs,  lilyrose

Cocker_Spaniel

As our dear Karen (OBX) used to say, cancer/chemo/rads, "the gift that keeps on giving".  So true. 

Radical2Squared

ok! Not that I want any of you ladies to suffer with me, but I'm feeling like I'm in good company! Seems like I'm just pretty normal!

slv58

Me as well! I go for an endoscopy the end of jan. For me it's to determine why I have swallowing issues. I've gone for a barium swallow test which revealed an issue and this is next step. For me, this started the first week of rads. I feel it's radiation induced but I guess we will see.

Titan

Hi everyone...re the coqu10...I have been taking it for 5 years now!  

Sorry to everyone about that stomach problems but yes..chemo is the gift that keeps giving....chemo also affects your saliva as well..I still get dry mouth and throat..keep a bottle of water with me especially at night...

Glad to see we are all doing pretty well..and good to see our new people coming on hear for support and information....I plan on asking my onc about the DCA next time I see him.

Happy Anniversary to Annie and her old fella...roses..wow...he must be pretty special...and so are you!

SpiritBlessing

Hi Ladies...I guess I will just jump on in.  I never had issues with heartburn but after two weeks of Abraxane I had to start taking the Zantac. I was taking it twice a day but stopped Abraxane in April so took it to once a day. Tried stopping both but had burning on occasion so the chemo did something to the lining of my stomach which was a SE I believe. 

So can someone let me know about the co10?  Also about the DCA? 

I meet with my MO tomorrow for my monthly visit so I could add this to my questions. 

Have a relaxing rest of the day warriors...Lucy. 

simplelife4real

Lucy, I take liquid CoQ10, but I don't have any info on it to help you with your questions.  I started taking it when I was doing chemo, but I don't remember why now....chemo brain?  I wish I could help you more.

I was able to ween myself off prilosec after finishing chemo, but I still get heartburn at night if I eat too close before going to bed.  It happened last night (the shift in time made me want to go to bed almost immediately after dinner).  I was up around midnight rooting around in my medicine cabinet looking for some heartburn relief.  I finished chemo Jan. 15, 2013....so it takes time to recover from the heartburn SE of chemo!

sandejosgirl

ello ladies!  I'm looking for support/info regarding heart issues after chemo. Anyone have chemo related heart failure?  I was dx TnBC 3/2011 at 33, finished treatment (mast., AC-T and rads) 12/2011 and was just dx with systolic heart failure last week.  Trying to wrap my head around heart problems at the grand ole age of 36 and trying to find more information.  The cardio we saw was...less than stellar.