Calling all TNs
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Hello to all of you lovely ladies,
I am new to this site, and well, fairly new to BC. Was diagnosed in late October with Stage IIIc, Grade 3. However, I think that has changed, because they initially believed there to be node involvement. Luckily, there is not. Originally discovered the lump in my left breast while nursing, and was told by my OB/gyn and radiologist (had an ultrasound) that it was a lactating adenoma, not to worry. I am 35 and have a gorgeous baby girl, who will be 1 tomorrow. She is my angel, and I thank God that she came into my life before BC. She gives me more motivation than I could have ever imagined I was capable of possessing. Ok, on to treatment. I am in a clinical trial, Cyclophosphamide and Ixabepilone neo-adjuvant therapy for HER neg bc. 6 doses, once every 3 weeks. My tumor was 4.5 cm. It felt huge, and now, I can't even feel it. I wonder if anyone else on here is doing this trial.(?) Will get surgery after chemo, and then radiation for 6 weeks. I am grateful to all those have gone before me in this courageous fight and for this community of amazing, inspiring women (and men). For me, neoadjuvant chemo has made me feel a little bit more sane, especially because I can feel and see this a**hole tumor disappearing. Information is scary, and still is to me, but it gets better, and I feel empowered and more alive than ever before in many ways. It is still tough though, everyday. Definitely an exercise in perseverance and positivity. Love and blessings to all of you.
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friends: I am so very sorry to hear about your daughter. This disease truly sucks, especially when you have to watch a loved one suffer. All I can offer is my deepest sympathy and warm ((((hugs)))
mbj: Thanks for those links. I was aware of those studies, but unfortunately they still don't show any comparative data on neoadjuvent versus adjuvent. I wonder if anyone is researching it....
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Amyadele: Welcome, sorry you have to be here with us, but sounds like the trial you are on is working for you. I assume you are triple negative? I hear of many women who are diagnosed with TN while they are nursing. I wonder why this is? I hope this is a clue to researchers who are trying to solve the puzzle of this scary disease.
Friends: I am sorry your daughter's cancer came back. I agree with you, too many of us are suffering with this disease and we need to work harder to find a cure and/or treatment.
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Thanks Luah and Lynn 18,I hope it all goes well for you both,this is a terrible disease slow and cruel,and to many young people suffering from it,I'm in Australia and everyone you speak has or a family member who has cancer.
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Dlcw: just now I saw your question. Kittycat explanation is correct. To answer your second question....Since I had BMX I did not need radiation. But I had to remove the ovaries also.If you have any other questions please feel free to PM me.
amyadele: Welcome . I smiled when I read your baby daughter brings the fighter in you. She is definetely your little angel. Focus on getting better for her. Continue to be positive. Don't let your mind play tricks on you.
Have a great day ladies.
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I have had 3 onc's in 2 cities here in FL, and the doctors are booked morning till night and the chemo rooms are packed! There is too much cancer!
A note on ports, there are a few options as to where to put it. I wish my BS had offered them to me before insertion. Mine was right under my bra strap and for 5 months, I had to wear a sock taped around the strap so it wouldn't rub. I probably would have left it in for another 6 months if it wasn't in such an annoying place.
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TIfJ:
While most biopsy path reports match those after surgery, some do not. All breast surgeons wait for the final path report (after surgery) as the biopsy path uses only a tiny bit of the tumor and that particular part being tested could actually be different than when the whole tumor is surgically removed. My surgical path came back with triple neg results "as found on prior biopsy" and my onc made them retest just to be certain is was still definitely triple neg. Unfortunately, it was. Also, she told me that neoadjuvant chemo is not done on the smaller tumors - that they had to be 2.0 with nodes, or 2.0 and larger. I found this to be pretty typical after checking on it. Maybe soon they will begin to treat us triple negs differently.
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PT was my favorite part of all the treatments. Make sure you get one that has experience with breast cancer. Ask for a lymphodema trained PT. Even if you don't have lymphodema, they know more about breast issues than a regualr PT.
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LRM216- that's good information. Thank you. My IDC was 1cm and my DCIS was .7- so close to 2, but not quite and no nodes. Gee, I guess maybe my doctors actually know whay they're doing after all!!LOL!!!
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Teka: I saw my physical therapist today. She massaged the area where my scar is and said it was important to do that regularly to keep scar tissue from forming. I had never heard that before. She is also a lymphodema specialist and taught me a lot.
A news story I watched today mentioned that Elizabeth Edward's doctor is Lisa Carey, who is one of the top researchers in Triple Negative. I thought that was interesting, don't know if that means Elizabeth was TN.
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Her treatment regiment for her cancer in 2004 was just like ours. It also said she had the most aggressive cancer.
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They thought Elizabeth Edwards was triple negative at first, but her retesting was hormone positive and she was on Femara as well when she recurred.It said she was weakly positive so was treated as positive. I read that while she felt a lump, her heavy schedule with her husband running for presidency, she ignored it and when she finally got around to having it looked at it was a very large tumor. This surprised me greatly upon reading that, but I guess many of us get caught up in a whirlwind at times and let certain things go for awhile, so when diagnosed she was Stage III and had a very agressive cancer that caused the tumor to grow to that size.
While Dr. Carey is a specialist in triple neg, she is also the head of the whole breast cancer center at UNC, and treats all types of breast cancer. I also assumed Elizabeth was triple negative and oftentimes wondered why, with her platform to speak from, she never spoke of it or pushed for further research, etc. - I guess I now know why.
So hard to believe that she is gone, so very sad. I will try to find that particular article and post it here if I can remember where it was that I read it. I have read so many since the initial news broke on her only having weeks - then the next day, the reports of her death.
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Over on tnbcfoundation.org it was stated that her initial dx in 2004 was TN and the recurrance in 2007 was ER+ (thus the other drug). Seems to be a lot of varying opinions on this, so not sure what to believe (though I lean towards the TNBC diagnosis).
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Here is the article I read, hope I am posting this correctly.
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LRM216: That's interesting about tumour size - I wonder if those are practice guidelines or the onc's own approach. I had 2 tumours - 2.5 and 1.5 cm. - clinically negative nodes (although on final path 1/4 had isolated tumour cells and 1/4 had micromets). Neo was never presented as an option, but then my receptor status wasn't known on biopsy (it seems not to be done here).
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Wow, this thread is moving! It took awhile to get caught up.
Thanks for the link to the nature pictures, Heidi. The one with the Milky Way over Zion National Park blew me away! Just gorgeous.
I see my Medical Oncologist in January, but we haven't yet discussed how follow-up tests and scans will go. I'm not even sure which scans will apply: I'll be BMX with no reconstruction as of now. There's nothing to do a mammogram on! Could they still do an US?
The hand shake or tremor would happen to me, too. My onc said it was 'micro-tremors' caused by the steroids. It was massively annoying not being able to write legibly because I just couldn't make the pen go where I wanted it to go. And my typing was just as messed up, with typos everywhere. I was very happy when I was through taking the steroids and everything went back to normal!
dlcw - my onc offered me a clinical trial and I jumped at it even before I realized what TN meant. My trial sounds similar to Swanny's, only with Taxotere instead of Taxol, and my trial also included Xeloda. I was given the option of being randomized, choosing to go with all five drugs, or even choosing to opt out of the extra drugs and be a control group. My BS told me at my first appointment with him that he was more worried about spread than the tumor itself, or as he so charmingly put it, "This (gesturing toward my breast) won't kill you; the cancer spreading will kill you." After my mouth dropped, he hastily added, "If anything does, that is."
Lovelyface - I'll be getting the five years of Tamoxifen because the final path report showed the tumor to be weakly responsive to ER (8%).
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Hi Lynn18,
Yep, triple neg. I wonder too about the nursing link...seems so common.
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Venting - saw an ophthalmologist yesterday and am always concerned about hand washing, but decided not to say anything because at most he would briefly touch my eyelid. Of course he comes in and puts his hand out to shake...ok, so I can Purell later, so I shake. He puts a drop in my eye, grabs a tissue, SWIPES IT ACROSS HIS OWN NOSE, and HANDS IT TO ME. He didn't even know he did it from the look on his face, plus he was talking away. In a split second, I honed in on the corner of the tissue that didn't touch his face, dabbed my eye with it, and promptly 'dropped' it on the floor. He sneezed twice during the exam and I was crazy to get out of there! In the car, I smeared Purell all over my face~~
Good news, according to him, the double vision in my right eye is "Not a mets to the brain" (both eyes would be cause for alarm). Rest of exam was good, and got a completely different rx for glasses (which I would only wear for work)...right eye has spazzed out vision wise but its not not not a sign of recurrent cancer. yea!
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JennC - I have been having horrible bone pain in my thighs and knees. I got the word today that my catscan came back clean. Hooray! She told me the pain may be a SE from the Taxol. I hope your pain goes away and is nothing.
Swanny- Thanks for the post. My new onc is part of that same team TBCR Consortium.
Suze35- It sounds like you have an onc that is on top of it. I'm happy for you.
Friends- I am so so very sorry about your daughter. It makes me so sad for you and your family.
Amyadale- Stay strong and think positive. We are here for you to share good times and the bad. Anything you have on your mind you can share with us. These wonderful ladies have helped me in so many ways.
The best thing that happened to me yesterday was that I had a fabulous day. Got the great news and then went out and bought my x-mas tree. Went to my sons wrestling match with my daughter and grandson and watched my son WIN! It just felt so wonderful to be in the moment . Loving life right this moment. I hope everyone has a great day.
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LJ: Congrats on scan news - wonderful! Re the pain in thighs and knees - I know it well. It's definitely from the Taxol. I only had one round and then was switched to the taxotere for 3 DD's and had the same exact pain. I would actually cry at times it was soooo bad. She gave me pain pills to take as over the counter wasn't cutting it at all - I took half the dose every 6 hrs. to stay ahead of the pain and it worked. Good luck.
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LauraJane: I just knew your scan would be clean but I am glad your dr is being proactive and not letting anything go by the wayside. CONGRATULATIONS!!!!!! The best thing for me: We decided to get a real tree this year and the smell is glorius. I went and purchased some old fashioned decorations and I love them so much I may have to go get more!!! Happy day.
Freinds: I am so sorry to hear what you are going through. There is a very good article, if you are interested, by a dr regarding the cancer epidemic. I posted it earlier, but you can find this article and tons of info re BC on the breastcancerchoices.org site. Hugs to you and your daughter. No one should still be dying from this disease.
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I don't have the link so I apologize for the long post:
how there could be a connection between root canals and bc?...how does pulling the tooth (ugh!) help?
"Cavitations are infected areas in bone surrounding the roots of teeth. They usually come from infected matter in root canalled teeth. When a [dentist] does root canal therapy (RCT) s/he sterilizes and fills the vertical pulp canal - about an inch long - and leaves infected the approximate 3 miles of dentinal tubules that cannot yet be treated....full of infection - that will continue to release toxins, viruses, etc. into the blood stream for the rest of your life....Infections from this source affects your entire immune system.... The infection exudes from the root to the supporting jaw-bone....I wrote the Forward to...George Meinig[‘s] _The Root Canal Cover-Up_" Jerry Mittelman, DDS, FAPM, Editor, Holistic Dental Digest; "For...our report `Can Root Canals Make You Sick?'" email jmittelman@nyc.rr.com and include your mailing address.
"I have had a number of patients with breast cancer, all of whom had root canals on the tooth related to the breast area on the associated energy meridian." John Diamond, M.D. (www.johndiamondmd.com) ("the reason being that dead teeth [which root canals are] will scatter toxins throughout the body, apparently following the meridian that they lie upon")
"infections persist for years without the patient's knowledge...toxins leak out and depress ...immune system....Weston Price...former Dir. of Research for the Am. Dental Assn. [14 years] [found] that if teeth that have had root canals are removed from patients suffering from kidney and heart disease, these diseases will resolve in most cases. Moreover, implanting these teeth in animals results in the animals developing the same kind of disease found in the person from whom the tooth was taken. Dr. Price found that toxins seeping out of the root canals can cause systemic diseases of the heart, kidney, uterus, and nervous and endocrine systems...research has demonstrated that 100 percent of all root canals result in residual infection" (_Alternative Medicine_, BurtonGoldberg.com, 1993, pp. 81-83).
"Dr. Price observed that angina pectoris, phlebitis, hypertension, heart block, anemia, and inflammation of the heart muscle are frequent side effects of root canal therapy....he would sometimes see heart patients with outwardly normal-appearing root canal teeth resolve most or all of their symptoms upon removal of those dead teeth [Hal A. Huggins, DDS, _The Price of Root Canals_, 1994]....research shows that dental infections are behind hardening of arteries, heart attacks, strokes, and spontaneous preterm births (Morton Walker, DPM [1999] _Elements of Danger: Protect Yourself Against the Hazards of Modern Dentistry_, Hampton Roads, p. 40).
"although her (root filled) tooth looked fine, [Price] advised this arthritic patient, to have it extracted...All dentists know that sometimes arthritis and other illnesses clear up if bad teeth are extracted. However, in this case, all of her teeth appeared in satisfactory condition and the one containing this root canal filling showed no evidence or symptoms of infection. Besides, it looked normal on x-ray pictures. Immediately after Dr. Price extracted the tooth he...embedded her tooth under the skin of a rabbit. In two days the rabbit developed the same kind of crippling arthritis...in ten days it died. The patient made a successful recovery...could then walk without a cane and could even do fine needlework....he repeated this procedure many hundreds of times. He later implanted only a portion of the tooth to see if that produced the same results. It did. He then dried the tooth, ground it into powder and injected a tiny bit into several rabbits. Same results, this time producing the same symptoms in multiple animals. Dr. Price eventually grew cultures of the bacteria and injected them into the animals...He put the solution containing the bacteria through a filter small enough to catch the bacteria. So when he injected the resulting liquid it was free of any infecting bacteria. Did the test animals develop the illness? Yes. The only explanation was that the liquid had to contain toxins from the bacteria....injecting half the animals with the toxin-containing liquid and half of them with the bacteria....the group injected with the toxins got sicker and died sooner....the rabbits [mostly] develop[ed] the same disease the patient had...Only occasionally did a rabbit develop a different disease -- and then the pathology would be quite similar, in a different location"
George E. Meinig, DDS, FACD, _Root Canal Cover Up: A Founder of the Association of Root Canal Specialists Discovers Evidence That Root Canals Damage Your Health_
http://articles.mercola.com/sites/articles/archive/2010/11/16/why-you-should-avoid-root-canals-like-the-plague.aspx"I have never seen a healthy root canal; they all create disease in the body. Read `Root Canal Cover-Up Exposed' by [dentist] George Meinig. I teach dentists how to nurse an abscessed tooth back to health without doing root canals" Lee Cowden, M.D. (1 of the physicians I most respect), 8/3/10
Anecdotes:
"chronic headaches for 20+ years....5 root canals....She had them extracted...dentist had to open all the windows...The smell was of death....After they were removed...headaches were gone for good." www.notdoctors.com"I developed ovarian cancer six months after my first root canal....I cracked a tooth...infection in my gums. That led to a second root canal. My tumor marker immediately doubled, and tumors jumped in size, etc. Had the teeth extracted. The older one stank, and the second one had a cyst full of pus beneath it. Two months later, my tumor marker is dropping rapidly" RhodaMead@yahoo.com, 6/3/07
http://health.groups.yahoo.com/group/FlaxSeedOil2/message/45797For more info on the dangers of conventional root canals,
www.whale.to/d/root.html
www.mercola.com/2001/apr/25/cavitations.htm (George Meinig, DDS interview)
www.mercola.com/article/dental/rootcanal/root_canals.htm (Meinig interview)
www.bloodph.com/research/mercury.html (Henry Kristal, DDS)
www.curezone.com/dental/root_canal.asp
www.curezone.com/diseases/cancer/cancer_dental_risk.aspFor info on biological root canals (much safer than conventional root canals), www.nihadc.com/joomla/content/view/196/273
www.mgoldmandds.com/rctchoices.htm (scroll down to discussion of calcium hydroxide)Some holistic dentists offer biological root canals. To find a holistic dentist near you,
www.iaomt.org/patients/search.aspxLeonard
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LauraJane - I'm so glad to hear your scans were clean. Everytime I see you post, I remember a lady (Rena I think?) who had 22/23 nodes positive, and at her last posting was 23 years out. You will be that person in 20 years!! How are you handling the Carbo/Gemzar? I'm doing the Carbo weekly with my Taxol and have been somewhat nauseas, which I wasn't expecting...
Friends - I'm so sorry to hear about your daughter. This disease sucks. I wish for a cure every day, but I'm so cynical I truly think drug companies would hold it back because they don't want to lose their cash cow :-(.
Amyadale - Welcome (said with sadness). I mostly lurk, but even just reading along makes me feel good.
I'm going to try and be around a bit more now that my chemo isn't knocking me down. I'm feeling very hopeful these days, I've now had two treatments of Carbo/Taxol and the one tumor I can feel is breaking apart and shrinking. I'm keeping my fingers and toes crossed that this is my magic cocktail!
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Well, if root canals can cause BC, I am screwed. Almost every tooth in my mouth is capped, I have always had bad teeth. Hmmm!
LJ - Great news on your scan.
Friends - So sorry to hear about your daugher.
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Laurajane, that is excellent about your bone scan. I still have what I think is "connective tissue" pain, around joints but radiating through my arms and legs. It comes and goes, but I think its from the Taxol. Its getting better.
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Teka - not necessarily the scientists, but the drug companies - yes. The history of Herceptin is a good example. I just read an article about antibiotics - and how drug companies were not interested in the expense of finding new ones because they weren't profitable. They preferred to focus on drugs that were - such as cancer therapy. Given the way drugs are tested and approved, there are probably many ways drug companies can slow down the process, sadly.
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swanny- not to worry. I'm sure plenty of people with root canals go on to live long and healthy lives.
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Teka, I'm sorry if I offended you - that wasn't my intention. I have always been a half-glass empty person, which I know sucks. 0
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This is my first post here, but I have read a lot of your posts. I didn't know about TN and that it was so aggressive until just a few days ago. I thought I was good 'cause I had a MX which got all the margins clean and clear, had 4 rounds of chemo finished in September, my onc. didn't seem too upset and my BS was happy. Crap!!
I have a mammo. scheduled for next month, and I will ask for an MRI and I have an app't with PS in Feb.
Is there anything I've missed ?
Kathy
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Thank you laurajane,MBJ,Suze35 and swanny for your nice words,you are all so strong and brave,I can't believe the strenght my daughter shows when the rest of my family are falling apart.....about the drug companies holding it back I'm sure of it ,like I have heard said no money in a cure....MBJ I will look that up,you always have lots of info thanks. 0
