Calling all TNs
Comments
-
Hi everyone. My name is Jen, I wanted to introduce myself. I'm back after 4 years and wondering if anyone has had a similar experience to me. 4 years ago I was diagnosed with triple neg breast cancer. I found out I had the breast cancer gene as well. With that knowledge, I had a double mastectomy, tram flap reconstruction, and 16 rounds of AC/T. I was lucky that although it was stage 2, I had no lymph nodes or mets. I thought I was in the clear as time went on. I got more and more comfortable and even had a baby one year ago. Coincidentally, my first son was one when I was first diagnosed with cancer, and now my second son is also one. A few weeks ago I found another lump- this time in the OTHER breast. My doctors said it was impossible- where could the cancer come back if the breast tissue was gone? But as we went through the tests one by one, things got very serious very quickly when we realized it was cancer once again. A week and a half ago, I had a lumpectomy, and found out it was exactly the same type/stage of cancer that it was four years ago. Stage 2A triple negative breast cancer- no lymph nodes or mets once again, luckily. And we also found out that it's a new primary, not a recurrence. My doctors said this rarely rarely happens, they've seen it happen 3 times. I can't believe I'm here once again, and I can't believe I got a new primary after a double mastectomy and all that chemo. It's so scary. This time I'm doing cold caps to try to save my hair. To me, losing my hair was the worst part of the experience last time and took 2 years for me to get back to "normal" (my normal is long). Hoping I can get some support here.0 -
Jenn, so sorry you are going through this. I am glad you came here for you will certainly find support. How can cancer come back in tissue that is part of reconstruction?! It is just so very frustrating! You have fought this before, so you know you can do it again. Has your team talked to you yet about a treatment plan? Again, I am very sorry, do not get discouraged.
0 -
Hi Ladies,
I have posted on occasion and check postings once in a while. Thought I would reach out again. I am on another board with other Christian women but wanted to try one with ladies with the same type of dx that I have. I see most of you are not mets which if you see my profile, I am. I am on a study trial and was hoping to find others who might be. I am doing well and have been on this trial since 11/25/13.
Jenn sorry to hear you have to return as your story seems surprising. With this dx it is hard to really have it too far from our minds. I am glad you were able to to have 4 years. Stay strong.
Lucy
0 -
Jenn I'm so sorry you have this again! My Onc told me that even though I had a mastectomy it doesn't guarantee anything because there is "some" tissue still there. It's apparently rare though. It does suck though! At least it's early stage. Hang in there and you can ALWAYS get support here. We're right there with you! Don't forget! HUGS!!!
SpiritBlessing I don't share your diagnosis but I am a Christian. Feel free to PM me anytime or just check in here because no matter what all of us are here for you. Glad you're doing well in the trial. HUGS! I pray for all of us here!
0 -
SpiritBlessing -
Just wanted to inform you also that there is a Triple negative thread in the Stage IV forum. Maybe you can get some info there as well. Wishing you all the best.
0 -
Thanks everyone! Meadow- right now I had a lumpectomy almost two weeks ago and am pretty much recovered. I'll start chemo in about 2 weeks, 4 rounds of TC which supposedly isn't too bad from what I've heard. I'm going to be trying the Cold Caps to save my hair. I just found out today the Cold Caps financial aid dept is going to cover most of the cost for me so I'm really excited. And then I'll have radiation, which I didn't have before. After that, we still need to discuss the plan. Obviously I'll see my dr. once ever 3 months for two years. My surgeon said he'd like to see me get a breast MRI once a year. I figure we'll discuss the plan after I've finished my treatment. On one hand, I figure.....okay, I had such a low chance of this happening, it happened, and now I'll get double treatment and that'll be it forever! But then on the other hand I can't help but to think.....this came back once, it has a good chance of coming back again. So scary
0 -
Hi everyone! I haven't been here in a long time. In August I celebrated 8 years since my diagnosis. I still look over my shoulder after all this time. I mean I go on with my life but every now and then I get that sinking feeling that it will come back. I was released from my oncologist December 2013 and I was so happy but scared at the same time.
I just want to wish you all well and hope you're doing good. : )
0 -
Congrats Trish!! Eight years is inspiring for all of us! So glad you're doing well. Thanks for updating! XOXO!!
0 -
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.0 -
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
0 -
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
0 -
Spirit, I'm in Pittsboro North Carolina.
I've never heard of DCA either Joy, but glad you're doing well!!
0 -
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/
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.
0 -
Thanks for the information Joy!
0 -
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!!
0 -
BanR congrats on both reasons to celebrate, and Cocker Happy Birthday!
0 -
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.
0 -
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.
0 -
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.
0 -
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.
0 -
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.0
-
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!
0 -
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!
0 -
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.
0 -
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!
0 -
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.
0 -
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!
0 -
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!
0 -
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.0 -
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
0
