Calling all TNs
Comments
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Curly: Of course you're mad about the new cancer! You were having surgery to try to avoid all this again and here it is anyway. It would be kind of odd not to be angry/sad/frustrated to have to deal with bc again. It is amazing that your new bc was picked up the way it was. You are so right that with dense breasts, it probably would have been a good while before it would have been picked up on a mammogram. Mine wasn't picked up by my annual mammos for that reason. It's also amazing (to me at least) that your tnbc is grade 1. That is good. Most of us are grade 3. I wonder if yours is grade 1 because is was caught so early and hadn't had time to morph. How is your surgery recovery going? You have a lot going on between recovering from major surgery and getting ready for chemo. I hope the TC combination isn't too rough in terms of SE's.
I had an good day yesterday in terms of energy levels as the last of the AC chemo leaves my body. I guess it is all relative. Three or four days ago, I could barely do anything. Yesterday, I was up and dressed and able to declutter around the house a bit. After five months of chemo, this place is looking pretty messy. Hubby was great at caring for me, but keeping things tidy isn't on his radar screen. I wasn't about to ask him to clean while I was laid up. I figured he was doing the best he could, he didn't need me nagging from the couch! I'm not ready to go out running, or probably even walking at much more than a snail's pace, but it feels so good to no longer feel like I'm trying to pull a two-ton truck behind me when I walk from one room to the next.
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Breezy, this is a good forum for this time in your BC treatment. After treatment at first I wondered if there would ever be a morning when I woke up without the BC being the first thing I thought of. Now, nearly 9 months post-treatment, I can say that it is usually not the first thing on my mind. However, there isn't a day that goes by that I don't think about some aspect of it.
Today I am trying to find acceptance that I am not the old me in terms of energy. I've finally got my creativity back (that's really a gift of BC--realizing my mortality has helped me focus on priorities) but when I use that creativity and "go to town" on my projects I end up coming down with a cold that stops me in my tracks. I don't have the immune system I had pre-BC and I need to learn to slow down.
With three kids you probably don't have some choices to slow down. Can you get some outside help at least for housecleaning and a babysitter so you can have time just to see a friend for coffee or just to stare into space?
Curly, so glad they found the BC so early! I too am triple negative. If i hadn't had the 3-D mammo that was new to my facility for an extra $40 (and I almost skipped this thinking there was no breast cancer in my family and there were other things i could do with $40 but at the last minute i opted for it and it likely saved my life--there were never any lumps that could be felt--more like striations).
If my BC returns at any point I will be outraged, knowing what I know now about how treatment affects me. I'm glad you've come to this forum (and others you may have joined again). Yet knowing that I survived last time would probably give me some assurance that I could get through treatment again and that I would get my life back again, different but still me. i am hoping that this treatment for you is easier than the last, physically. Emotionally I can only say that you sound calm between the storms of emotion even as you are trying to gear up for another round of treatment. Is this the case?
Hugs to all,
Peggy
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Just a quick drive by to wave "Hi" back to Kathy!
Hope you all have a good day today!
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PeggySull
Thanks for the words! I've have been very blessed with a extended family that has taken amazing care of me and my kiddos. I had some complications after the dbl mast so I literally did not hold my baby from the last week of August until October 31. Then another complication less than a month later left me not holding her for another 2 weeks-ugh! Still I have family that comes during the day for a few hours to help with the girls, keep me company or let me rest. It really has been a blessing.
I am just ready to get back to the gym and I hate that it's not going to be anything like it was before and chemo weight is just the worst.
I feel so silly complaining about this stuff when I read everyone else's post. There are so many strong women here that are amazing examples of how to handle this all so gracefully!
Thanks everyone for the inspiration!
Breezy
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HI Curlylocks,
You are on the same path as I - cancer in 2005 and back with Triple Negative no lympe node involvement either time - I also had the 4 rounds of taxotere and Cytoxan every 3 weeks with the neolasta shot 24 hours after the chemo injection. As I mentioned before I was allergic to the taxotere but they had to give it to me anyways so I had to be densitized to it. I was able to work full time through it all with just one day off (working from home) around the 5th day after the chemo. You will get through it! You seem very strong and have the right attitude.
Thinking of you!
LPBoston
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Thanks Kathy............:)
To all the newbies I wish you the best and I wish I could be here to offer some wonderful words but still dealing with my emotions on my BC returning. Stay strong and just remember to allow your feelings.............DO NOT BOTTLE THEM.......it is not good for you.
I finished my radiation in Sept. and I still feel that I am tired.....I know some of you ladies said that it was months afterwards that you felt your strength come back, it is going on 5 months for me and I just feel off. Is this normal?
I second the whole not wanting to hear.........."oh your surgery and treatment are over" so it is all better. They do not realize what our bodies have endured.
Hi to everyone and congrats to the ones celebrating.
My thoughts and prayers to us all..........:)
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Sadie,hugs. Just post when you feel like it.
I have an odd ball situation with my upcoming surgery (LX and ALND on Feb. 13) that has caused me to have a lot of questions about what I want to do. I have subpectoral implants from a surgery thirty years ago that I think will cause problems with the radiation I need. I had messaged the radiation oncologist my questions and she called me yesterday. I haven't met her yet, but she seems really nice and helpful. I'm going to go in and see her next week. The old implants are coming out for sure (they are ruptured) , I just can't decide if I want to fool with having new ones put back in. That's currently the plan, but I think I'm just going to get the old ones taken out and not replaced. I don't want to have to deal with potential future surgeries over the next few years. (Radiation can cause painful contracture of the implant capsule.) I also want to make sure the radiologist is able to create the radiation field I need. It will be interesting to see what the radiation oncologist says when I see her next week.
Sometimes, I think I'm nuts for not going the BMX route right off the bat particularly with TNBC, but my MO and BS keep telling me it makes no difference in my chances of survival. One reason I decided to go with the LX is that I figured it would be less physical stress on my body. For that reason, I very much doubt I'll get the old implants replaced. I want to keep the stress to my body at a minimum and I don't want to stress my body more with more surgery the implant fails. I think the only way I will go through with putting new implants in is if the RO tells me the implant will help protect my heart and lungs during rads. My cancer is on my left side and I'm concerned about protecting my heart.
My number one goal as I make treatment decisions is to try to make the choices that will maximize my choices of staying alive. Boob size and beauty are way down on the totem pole of my list of considerations/priorties. The only reason I'm even considering replacing them right now is that the PS says that if I ever want to have it done, now is the time to do it. It will be far harder after rads.
I think making decisions relating to cancer treatment is hard. Everything feels so "life or death." I sure wish I had a crystal ball and could see into the future...but then sometimes I realize it might be far better that I can't.
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simplelife4,
I would consult with another plastic surgeon. I had a double mastectomy with immediate reconstruction (implants immediately after mastectomy) and after this there was some talk about my getting radiation. Although it turned out that I did not need radiation, my PS was alarmed that I had the implants already in before radiation.
I know that for us, vanity is at the bottom of our priority list, but there may be some medical reason not to do new implants before radiation. At the time I was so freaked out that I might need radiation in addition to chemo and DM to really question anything except for during my meeting with a good radiologist who went over all my records from dx to final treatment and said there was no indication for rads with 99 percent certainty. I was freaking out because no one ever mentioned radiation before the chemo and DM until after the DM.
My treatment team was fragmented so I had to double check with each member of my team so often during treatment about what the other had said, and what it meant and I was really tired from the chemo and surgery--I didn't go back to the PS and ask what she was alarmed about.
I hope your team is more coordinated.
Hugs,
Peggy
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I'm glad I found you all!
After my slightly + progesterone marker turned negative after surgery, I was desperate to find some sort of hope with this scary TN diagnosis. That's how I found this forum!
I was dx in July, 2013. Had 4 rounds AC and 4 rounds Taxol, finishing in Dec.
Next up was surgery after a 4 week break to let my body recover from chemo. Waiting the 4+ weeks made me very nervous, but I was assured that nothing would pop up again in that short time and that my body/levels needed to recover before surgery.
Well, during that time a hard bump popped up in my neck as well as a small hard bump at the location of the large tumor still in my breast. Three Dr.s told me the lump in my neck was nothing to worry about. THREE. Since I was already scheduled for a single mastectomy, I had the BS remove the lump in my neck so I would not keep worrying about it. It was + for cancer! Why was I the only person suspicious of this?!
It's so important to know your body, go with your gut, and be your own advocate!
Surgery was two weeks ago. I am now looking at more chemo...carbo platinum and gemsar (sp?) and still need radiation as well. Will be sad to watch my new hair growth and eyebrows fall out again. I was so happy to be getting it all back.
There is so much to read here...i need to limit myself so I don't end up spending my day reading about cancer!
But I have seen a few of you mention Metformin. What is it and how does it help TN?
Thanks for all of the shared stories.
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Welcome Breezy - this is the place where you can discuss your feelings honestly. (I know my friends are trying to help when they tell me "everything will be fine" but it just isn't helpful). All of us here understand your "what now" fears and being in the "wait and see" phase. Titan is right, after treatment you will see week by week improvements in your health. The one thing cancer has done for me has put my weight at the bottom of my concern list. Each time I was diagnosed with cancer....I had significant, unexplained weight loss. When my PCP recently brought my weight up, I just laughed at him!!! For the first time in my life, I'm glad to get on a scale and see I haven't lost any weight!!!!
Simple - thank you, I just ordered that book from the library. Glad to hear you went to dance class. I'm a month out of chemo and I can see myself coming back to life (there were times during chemo that I was sleeping 16 hours a day). I'm also starting to be able to have the energy to shovel back some of the mess that has accumulated!! (big priority because I'm still hoping to bring Mom home). I can't give you any advice about your surgery....but there is some info I want everyone to have. After I had already had my surgery and went to the RO, she mentioned that sometimes radiation shrinks your breast. (What????? No one thought this was something you should mention when I was making my surgical decisions????). After my LX, my breasts where approximately the same size. After radiation I ended up with a DD on the left and a large C on the right. (It is a very visible difference). I'm not a person that's concerned about body image (I'm old, lol).......BUT a result like this may be significant to someone else! I think it's something your doctors should inform you of long before you enter radiation treatment.
Curly - as Simple said....of course you should be mad. She's also right that it's great news that your tumor is a Grade 1 ( less aggressive). Fight on girl!
PeggySull- wonderful to hear your creativity is back. I hear what your saying about getting accurate information from a "fragmented" team. My BS almost fell off her chair the other day when she found out I knew my prognosis. Her exact words were "who told you that!!!!" The information came from my MO at that the same facility that is part of "my team" there. ( so I'm not seeing a lot off communication even between doctors that supposedly in close contact)
Welcome Bunnygirl - I know you don't want to spend all your time researching cancer, but new current information is one of the great features of this thread. Everyone brings the information they learn from their doctors and other sources here. I've learned info here that my doctor's weren't even aware of yet. About the Metformin.......there are current clinical trials going on to determine if this drug helps with controlling cancer. (Remember that it's still unproven). I was offered a spot in this clinical trial, with a 50/50 chance of receiving the drug. I brought the research to my PCP and convinced him to prescribe it. (Others on here have done the same). I have relapsed while on Metformin.....(not sure it's a relapse.....doctor's admit it may have "been missed" during the initial treatment.) but I'm still hoping that it is slowing things down. I can't tell you strongly enough to be your own advocate!!!! ( I had to go to my PCP, and get a CAT from him to prove to my "team" that my cancer was back). This site is an important part of helping you be your own best advocate!
*waves hello to everyone I missed*
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Oooops again I forgot something. (It's chemo brain....and I'm sticking to that excuse)
I had my biopsies yesterday. One core biopsy and 4 skin biopsies. I have so many holes in Righty, that if you could hook up a garden hose to my breast............I could make a hell of a lawn sprinkler!!!!!
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Something to brighten your day ladies.A woman asks her husband at breakfast time, "Would you like some bacon and eggs, a slice of toast, and maybe some grapefruit juice and coffee?"
He declines. "Thanks for asking, but, I'm not hungry right now. It's this Viagra," he says. "It's really taken the edge off my appetite."
At lunchtime, she asks him if he'd like something. "How about a bowl of soup, homemade muffins, or a cheese sandwich?"...
He declines. "The Viagra," he says, "really trashes my desire for food."
Come dinner time, she asks if he wants anything to eat. "Would you like a juicy rib eye steak and some scrumptious apple pie? Or maybe a rotisserie chicken or tasty stir fry?"
He declines again. "No," he says, "it's got to be the Viagra. I'm still not hungry."
"Well," she says, "Would you mind letting me up, I'm starving!
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Hi Bunnygirl,
Wow, I can not believe that 3 different people did not raise a red flag at the bump. Although I do think doctors follow the symptoms to find a problem, and we tend to start first with thinking it's a problem and work backwards. I too would have been suspicious!
Metformin works by controlling glucose in non-diabetic as well as diabetic women and it also lowers androgen receptors - and it is in several trials right now to test effectiveness when administered with chemo, or without chemo, with diabetics and without diabetics and currently it has made it all the way to Phase 3 of the trial. Metformin works by reducing circulating insulin cells which they feel can be very beneficial to TNBC women. Metformin induces cancer cell death at the earliest stages of development via metabolic pathways. It can help stop or slow the spread of metastases if the person has a high expression of CD24 positive cells.
Metformin has been on the market for 25+ years and they discovered that women who had been taking it had much lower incidence of breast cancer. With TNBC, current theories are that we need to keep low fat and low insulin levels. There are studies right now of it in regards to TNBC. Because there is not a standard targeted treatment for TNBC, many Physicians and Oncologists have prescribed it, because of the potential benefit to risk ratio (very little risk associated with Metformin). Tamoxifen, what ER+ women have as targeted therapy, was originally a contraceptive drug.
If you would like to PM me your e-mail address, I have several articles and attachments that you can read for further understanding. I also have a lot of other TNBC information on the e-mail (nutrition assistance, etc), as I have numerous requests for additional information. Each attachment is saved with a file name that makes it easy to determine what you are reading, if you only want to read about Metformin.
It was the women here at bc.org who first told me about this, and I collected a lot of research on it before moving forward to ask my Onc and PCP about going on it. I have now been on it for about 6 months - and I'm at the trial dose as well.
While it has not been approved for taking as preventive measures for bc, it can be written off label. Off label means taken for a reason other than what the FDA approved it for. (Much like how birth control pills are prescribed for someone who has acne - that's not the original purpose of birth control pills, but it helps control some people's acne).
Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.
- Phase I:Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
- Phase II:The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
- Phase III:The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
- Phase IV:Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.
I have literature from the TNBC Foundation that could be helpful to you and your family in understanding TNBC - it's written in a very nice easy to follow PDF. It explains a lot, talks about what you can do now and for your survivorship, etc. On page 33 it states...
Page 33 - "Most women
with triple-negative breast cancer never have a metastatic recurrence or a new
cancer."I feel that is important to reflect upon that statement because we are only a small group of women on here. It's estimated that 15-20% of women who are diagnosed are diagnosed with TNBC, so that would be about 35,000 women each year diagnosed with TNBC (232,000 women with IDC x 15%). Very few of these women are on the boards, so it's important (if you have a bad day or read something depressing) to remember that there are many victors out there - we might just not be hearing from them on the boards.
Just keep taking it day by day, and we are all here to help and support you!
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What's everyone's opinion on Fish Oil? This article said largest study ever shows it helps beat cancer. There is a new study out that says fish oil increased the risk for prostate cancer, however many experts are counter-claiming that study, stating that study was to research the relationship between selenium and vitamin e in a cancer research trial, it was discovered that those who had prostate cancer did have higher levels of DHA but it was not known whether it was from fish or fish foils or any other factors, since the study was for something else.
Anyways, if you are taking this please let me know how much and what does your doctor think?
I do get the Omegas from organic flax seed.
http://blog.canceractive.com/?tag=breast-cancer This link also includes additional information on various other dietary things
Also my good friend in Florida, also a TNBC survivor sent me this article on carotenoids - http://blog.canceractive.com/?p=824
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hear you about the weight thing Kathrynn I weighed 124 lbs. at diagnosis..which is way too thin for my body frame...I am at 143 now...with some crappy fat rolls around my hips..but you know..I will take them...I freak out if I lose weight...I still freak out some cause I eat alot and stay the same....hoping it is my nervous energy type personality burning the fat up....and getting older....
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Stupidboob,I would think energy levels returning depends on the individual. That being said,my energy returned around 15 months after radiation,I'd about given up hope to getting it back. Unfortunately,it only lasted a few months,now tired again most of the time! Hoping when spring gets here,it will return.
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Hi everyone,
Is hydronephrosis related to the effects of chemo? Secondly, does chemo cause liver damage? And the final question, is ascites from chemo, cancer or something else entirely?
Fighting OvCa kept me away from bco and I was saddened to read about Dawn and Karen. I hate FC!
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I am morbidly obese and hypothyroid. I have been struggling to lose weight and was down around 35 lb loss pre BC. I was stricken with some migraine problems and lost sixteen pounds quickly and have now jumped to 52 pound loss. I am not trying to lose weight I am just not very hungry. I drink ensure about a meal a day when I am not feeling well to bump up my protein intake to 25 grams or a protein shake. I try to make sure I eat a very healthy dinner consisting of protein, starch and green vegetable and some fruit during the day. They said not to lose weight but I don't know what else to do. I am eating normal portions it just doesn't support my heavier weight. I don't really mind either.
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Hi All,
Just stopping by to wish everyone support.
Inspired, I take krill oil instead of fish oil for omega 3. I just like the idea of krill being lower on the food chain and therefore, hopefully, less toxins.
Tekwriter, I had a hard time eating on AC, particularly at the end. Organic peanutbutter on organic multigrain toast became my "go to" food when I couldn't cope with anything more. I did lose weight while on chemo, but my MO was okay with it.
Twelve days to my surgery and counting. I'm feeling better each day as chemo works it's way out of my body. I'm now 18 days PFC (but who's counting LOL).
I meet with the RO this Wednesday for the first time and I'm very glad about that. I want to know from her what she thinks about possibly having implants replaced at the time of my surgery and whether it could cause problems with getting the radiation I need.
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Interesting info on TNBC and Melatonin and Vitamin D
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Inspired - I'd be very interested in seeing the Metformin research you have that talks about it's effect with Androgen receptors.
Journey4life - it's good to see you. I'm going to try and answer your questions, BUT they are all complex questions that are better answered by a doctor who has knowledge of your specific case. I have a feeling if your coming here to ask the questions, then you must feel you're not getting the information you need. I did some checking to make sure I could give you accurate answers. Again...please remember these are best answered by one of your doctors
Does chemo cause liver damage? Almost all drugs are broken down in the liver. (Some are excreted directly through the kidneys). Chemo drugs are very toxic and yes they can be damaging to the liver. That is why part of your blood work during chemo is evaluating your liver enzymes so doctors can monitor how your liver is tolerating the chemo drugs.
Is hydronephrosis related to chemo. The easy answer is no, but the answer is more complex than that. Hydronephrosis is caused by urine/fluid being trapped in kidney and damaging it. Urine flows from the kidney...through the ureter....into the bladder....and out the urethra. Anything that causes damage to any of these structures can cause hydronephrosis. There are MANY causes but some are kidney stones, bladder dysfunction, scarring from infections, various results from surgery in the pelvic area and the effects of radiation.
Is ascites from chemo, cancer or something else? This another complex question. Ascites is a symptom not a disease. Ascites is simply fluid collecting in the peritoneal cavity. It also has MANY causes. The most common cause is some type of liver disease, Other causes include severe heart disease, damage to liver's venous output, kidney disease, malnutrition and cancer (primary or metastatic)
I hope this helps Journey.
Sounds like you're doing the best you can right now Tek. My only suggestion would to be to add another shake in daily if need be.
Simple - I'm glad to hear that you will be able to get your questions answered by the RO before your surgery. BTW, I love your picture. Yes...you do look like a demented elf......but a very beautiful elf.
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ohhhhh Annie.........did that story come from personal experience?? (*sly grin and a wink*)
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Hi Kathrynn,
Here are a few articles:
" For example, metformin, an insulin sensitizing agent that also helps to reduce excessive androgen production, promotes weight loss..." From the article below:
http://www.lef.org/protocols/female_reproductive/polycystic_ovary_syndrome_01.htm
http://www.ncbi.nlm.nih.gov/pubmed/24267731http://www.sciencedirect.com/science/article/pii/S1526820913001869 - Title: " Metformin Decreases Circulating Androgen and Estrogen Levels in NonDiabetic Women with Breast Cancer"
And this final article is not really about your question - it's just an interesting article on how Metformin came into existence for the prevention of cancer and general information about it. http://www.lef.org/magazine/mag2012/nov2012_metformin-makes-headline-news_01.htm
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There was a question posted is chemo hard on the liver? Yes, hard on liver and kidney, and therefore Oncologists will usually monitor these values at scheduled intervals after treatment is done. It can take as long as 18 months for your kidney and liver to return to the level it was functioning at prior to chemo. Some things you can do to help is drink lots of water, small meals more often instead of big meals, plenty of fiber and limiting alcohol and other things known to be hard on the liver and kidney in general.
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Thank you Inspired. Since I'm the Queen of Androgen receptors (99%) the Metformin may actually be helping me. (*throws PCP to floor and kisses soundly*)
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Kathy, can I pm you?
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I was thinking you had mentioned that when I was reading your request! I'm so glad to hear that! I also want to hug my PCP. Maybe we can make this "hug your PCP day".
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Of course you can Journey
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Kathy I would put food first any day. Stuff the rest at my age. You and Titan haven't turned up yet. Those cream cakes will be going off and I don't care if you come in your birthday suit (though a bit windy today) as long as you both come. lol
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Nope Annie, I won't be coming in my birthday suit. To many wrinkles and I threw out my iron years ago.
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