Calling all TNs
Comments
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I appear to be missing a cancer and sugar correlation. I am a diabetic and have cancer. I do eat sugar. I have quit eating any type of chemical sugars and only use regular sugar in limited quantities. I am going to go out and do some research but I have seen a lot of mention about sugar here.
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Ang, your post made me LOL! Thanks! A 27 cm tumor would be quite something.
I couldn't agree more with Inspired's post....particularly about worry (when I give into it) only making me tired. I also try to avoid it because I figure it's not good for my immune system. I felt like I had something like PTSD for the first two or three months after diagnosis. I was consumed with worry and cried daily, often uncontrollably. It's not to say that I don't worry any more. I just try to get myself out of it faster.
I've posted about this book before, but I'm going to mention it again because I think it was the real turning point for me in learning how to adjust to my new "normal." The book is called "Loving What Is" by Byron Katie.
I also journal three pages by hand every morning and I find that helps tremendously with dealing with whatever is on my mind.
I feel like cancer has taught me to be so grateful for all the things I used to take for granted. I hope I never forget the lessons I'm learning right now and go back to my old way of life. No matter what happens in the future, having TNBC has changed me for the better.
I also try to focus on what I can control....diet, exercise, enjoying time with others, my "inner life". Like Inspired says, it doesn't happen overnight, but it is possible to learn to live without constant fear being the dominating force.
I'm still a relative newbie to TNBC. I'm done with chemo and onto surgery (next week) and rads after that. I know that have a lot yet to learn and to experience on this journey. There is no doubt in my mind that I'm going to continue to experience dark times....I'm just learning, bit by bit, to move out of them faster. A friend of mine says: "Look, but don't stare." She says that about dealing with any kind of problem, not just bc. I remind myself of her saying when I'm researching TNBC or looking at statistics..... I look, but I don't stare.
Hugs to you all. Thank you for being here. It makes this journey so much easier.
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Congrats, Lookingforward. I know it is difficult to quit. Hang in there.
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Simple...look at it this way...chemo is DONE....assuming you are having a lx cause you are having rads too.....for me..chemo was the hardest thing....my lx and rads were fairly easy on me....hopefully they will be for you also....!
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Lookingforw another smoker here. Don't beat yourself up. Cancer and chemo has got to be one of the most stressful things to go through. For some it's taking a drink, another it's eating all they can get down and for some its a ciggie and for others all sorts of things help them through. Don't worry about it. Regardless of what some people think you are not dirty because you smoke and it is nothing to be shameful about. You do what you have to, to get through. There are far worse things you could be doing in this world and on top of that you have beaten it since the 11th January. So good on yer girl.
tekwriter you will be aware as you are a diabetic that contrary to popular belief sugar does not cause diabetes. Obesity causes Type 2 diabetes. If you have a healthy lifestyle of leafy green veges, some lean meat and fish, fruit, you exercise regularly ie several times a week, watch your weight, have cakes, and biscuits etc in moderation then you can have sugar without it causing ill-effects ie weight gain. It is an unhealthy weight that causes Type 2 diabetes and it can be managed with dietary changes and exercise. With Type 1, diabetes is caused by a lack of insulin and can be controlled with insulin medication ie Metformin, Actrapid or Gliclazide with again, healthy food choices and exercise. It can also be genetic.
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TOP 5 ADVANCES IN TNBC RESEARCH IN 2013:
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Inspired - what researchers have been working on certainly looks promising! Thanks for sharing the article.
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inspired, thanks again for posting such important information here. You are truly a gem!
Hugs,
Peggy
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thanks for the link Inspired!
SImple: i like what you wrote... look but dont stare. will try to apply it into my life too. Do let us know what happens after surgery. I hope you achieve Pcr!!
cocker: thanks so much for being there and the encouragement.
Now that my chemo is about to be over in a few days, mixed feelings are coming up.
came across a website yesterday...
http://deathisnotdying.com/pathology-report/
this website talked about a lady called Rachel, who was diagnosed with triple negative stage 1 cancer in 2004, got surgery chemo and rads and finally she died in 2009 due to spread to other organs. very shocking indeed.
she gives a talk a days before her death, about leaving the world and her family behind.
http://deathisnotdying.com/eventvideo/
very very touching .. !!
thankful for every day..and i hope none of us have to go through all that she went through.
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Tekwriter my wife's Onc told her to "eat like a diabetic vegetarian" to help prevent relapse.
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well that's sad...wont be watching that.
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Inspired along the lines of what you said about "I get an opportunity to straighten out my life - whatever I should have
improved before the bc I can improve now - it's a chance at starting
over." My wife and I have ascribed to that thought pattern. I feel like such a neophyte at it but I also feel we're getting smarter and smarter about what we eat every day. I have lost 30 pounds without even trying! Just changing diet and lifestyle! Kathy said the day before yesterday that she has "never felt so alive in [her] life!" So yes, there is a bright spot here. My wife said, "Maybe God was giving me a kick in the pants and saying 'pay attention!'"0 -
Ladies a co worker of mine's wife had a TNBC tumor "about the size of a deck of playing cards" (<- the doctors' words)! I don't know what that translates into in centimeters...but I gotta think that's HUGE. She was in her early 40's. She went through chemo and a mastectomy. Not sure about radiation. Anyway...that was 8 years ago and she has lived, and is living, happy and healthy ever since. No relapse, no recurrence, no mets. She is absolutely fine now. I know that's not always the case, but my solemn prayer is that my beloved wife, and all of you, have the same outcome FOREVER.
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Thank you Alhusband for all the encouraging words you said. All the best to your wife and everybody here as well!
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ladies, I am thinking really hard these days whether I should be undergoing MX or BMX. Those of you who did have a MX, did you have reconstruction the same time? I know nothing about it except that my BS says that it takes 4-6 weeks to recover. Does that mean you will need to take pain medication for a long time? Can you drive? Cook? Sorry that my question seems dumb...
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Jianchi - I also had a BMX. Here is my experience. I chose the BMX because I had just read about Guiliana Rancic's LX surgery, not getting clear margins and then she opted for a BMX because she didn't want to be "always looking over her shoulder". She was talking figuratively I think, because doctors will say overall survival is the same, but risk of local recurrence lower with a MX (according to my BS). But my mind was already made up when I found out I had cancer -- I had said "if this turns out to be bc, I want a mastectomy." I didn't consider anything else, I just knew my psyche, and that I would worry less knowing I had that done. I'm saying that, because I don't want you or anyone to feel that an lx is not a great option - as mentioned, both are said to have same survival rates when paired with radiation on the lx.
My surgery was 6 hours long, and my PS and BS were in tandem - reconstruction at that time. I had a pain pump surgically attached to me, so when I went home, for the first 72 hours the pain pump was helpful in relieving discomfort and I was also on a muscle relaxant and oxycodone or something. Muscle relaxant for spasms, but I didn't really have any so I only took the other one. I was on them for about 4 days then switched to Tylenol.
My surgery was on Wednesday, came home Thursday, had husband at home with me for 4 days and he returned to work on Monday. I was on my own. First follow-up appointment that Wednesday (one week later), which I drove myself to - husband was with me, but I drove.
I started chemo 3 weeks after surgery.
I felt great on day 4 and through week 1. Week 2 became incredibly sore and I felt this was the hardest week ... but I kept moving, vacuuming, etc. Week 3 sore and pain started to subside. During the first 2 weeks had to get help with shirts going on over the head.
All in all, for me, the key was continuing to move. I also was not allowed to have any caffeine from my PS, and I slept sitting up on couch with a big pile of pillows so that I was sleeping sitting up, and it helped to keep swelling down. I had less swelling and bruising with the mastectomy than I did with the biopsy. My PS believes not having caffeine helps you heal quicker. Also, he also mentions about taking Arnica before surgery to reduce swelling - it's an all natural anti-inflammatory or something. I didn't know about it at that time.
I was able to do normal things on Day 4, but it did require effort to reach high into a cupboard so I needed assistance on some things, but could do normal daily things, just slower and with a bit of assistance on the heavier stuff.
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inspiredbydolce, thank you for your quick response! Also appreciate all your time tying such an long answer. How did you do emotionally? Thanks!
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I was thrilled. At my one-week follow-up appointment, I had to use the restroom at the BS' office. During that time, the Medical Assistant went to the lobby and asked my husband what "vitamins or energy drink I was on" ... LOL - she mentioned to him that she had never seen someone so happy and bouncing around. I was thrilled. Now, my PS overfilled me on two fills, and I got those undone - during that time I was really not happy and I had to keep arguing with his staff that I was too large - and they have never conveyed this to him, so al this time he didn't know I was upset about it. I went from a size AA naturally to a very full B - my PS then reduced me, and then the day before final exchange surgery he Fed'Ex'd in one more set, a smaller size, and that it what he ended up placing in me. Now I look very proportionate - I'm a small size B. I really wanted to be only a size A, but other than that I have been thrilled!
Oh you know what -- this girl that my sister-in-law put me in touch with told me "has anyone told you what to brace yourself for when you pull the bandages off and look in the mirror?" So I was expecting the worst when she said that about the mastectomy. I didn't touch anything and the BS pulled the bandages off at 1 week, and you know what? I was so beautiful I was in tears - it was nothing like what she said it would be.
And regardless, my number one goal was and always will be to be healthy - and I was so very happy to not have my breasts anymore. I've been so happy, I never have gotten the nipple recreated either!
For me, there was absolutely 0 mourning in the loss of my breasts at all - everything was a symbol to me that I was cancer-free and going to live!0 -
Regarding the link/video about the young lady's final days ... It is sad to see an end to a beautiful young life. She certainly seemed very motivating and will have certainly left a very powerful legacy behind, one that I'm sure will affect and help many women. In researching her story, I believe she was about 32 when dx'd passing away at 37. I read her blog and I interpreted that a 2nd group of doctors had found a 2nd tumor in the tissue of what was already removed from her body and the cancer team upon discovering this, then talked about it. It seemed that there was conflicting opinions among numerous doctors on whether to now recommended a bmx. It also said that her margin was within 1mm. I interpreted the word "within" to mean less than 1mm and she was also BRCA2+. Additionally, she was to take hormone pills for 5 years, so perhaps she wasn't truly TNBC. These factors may have placed her at a higher risk for recurrence than the stats you read about for being 5+ years out. Do you know, according to the GenOptix site,"More than 20% of women's ER/PR status may be misclassified" GenOptix Aqua Technology Site.
GenOptix came out with this test to further identify and accurately diagnosis receptor status. If she was borderline TNBC, it may be that the chemo was not as effective on her. For anyone reading her story, if you find yourself worrying, please try not to compare yourself to her diagnosis and prognosis. Remember that there are a lot of other items that goes into our pathology reports and treatment recommendations. Of course it's natural to wonder if this will happen, but do try to remember that there are many things that go into the metrics here.
GenOptix Testing / Receptor Status
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thank you inspiredbydolce, you sure are a great comfort!
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You called and I came. New to posting, but have been reading these boards since my first consult with my BS. Had my offending appendage (as ILike to call it) removed Jan 8th. I'm 58 years young and no history of BC in my family. I don't need rads, but will be having chemo, AC every two weeks x 4 and then the 12 weeks of taxol. Still need port put in. Next week I have to have a full bone scan, CT scan and an echo cardiogram. Have any of you other ladies needed all of these tests prior to starting treatment?
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grammyb - I had all those tests prior to starting chemo...it's a baseline and also the echo is to make sure your heart can tolerate Adriamycin.
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Welcome grammyb - glad you found us! This is a great place to learn, share and find support and comfort from women who are or have been there. I haven't had a bone scan (should I?) but did have the other tests. As jenjen said, they are fairly routine. When will you start tx?
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From all my research, I have to say that there is not really a typical routine on how much testing a doctor does with early stage breast cancer, prior to treatment. The reason that I've read about, is because each doctor has to make the assessment based on risk for that individual patient. Example: Someone who had some lymphatic invasion, may be at risk for systemic disease, and therefor the Onc may require a CT or PET scan before treatment. Example: With Adriamycin Oncologists will usually run an echocardiogram to assess the overall health and strength of the heart, because Adriamycin can be hard on the heart.
According to the NCCN guidelines on the manual that I downloaded it says for DCIS history and physical exam, mammogram, pathology, determination of ER status and genetic counseling if patient is high risk for hereditary bc. For invasive breast cancer, it says history and physical exam and breast MRI optional, and then there is a second section that says for Clinical Stages 1-11B, consider additional studies only if directed by signs or symptoms, and then it lists bone scan (if elevated alkaline phosphates or localized bone pain) .....then it lists CT if certain things exist (it gives a list) ... etc.
What is the NCCN Guidelines Manual: "The National Comprehensive Cancer Network® (NCCN®) is an alliance of 23 of the world's leading cancer centers, working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care. NCCN offers a number of programs to give clinicians access to tools and knowledge that can help guide decision-making in the management of cancer.
You can download your own copy - you do need to provide some personal information (general) - the manual was well worth it. It is 166 pages.
Actually I just found it online without having to provide information, available as a free download with this link - so if anyone wants it, here it is.
This is the 2013 edition and 174 pages, so I will download and update mine as well!
http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf
When you get it you first have to start at the correct page for your type. If you have DCIS, starts on page 9 of the PDF. IDC starts on page 12 of the manual. From there you follow your exact pathology, i.e: size of tumor, no nodes to any nodes involved, etc. Page numbers you need to hover down below for the PDF symbol to display the page number, otherwise if you can't see the page numbers, they are coded in the bottom right, as: DCIS-1, etc -- but at the top of each page is a large heading so you know what category you are reading.
Example: If you are IDC - you start on page 12 and click the link on the right of that page. Then you go to page 13 if you will or have had a LX. If you are MX, then you will scroll down and read the recommendations on page 14 instead.
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PS - It also lists preferred chemo cocktails based on various criteria.
Remember if you find something in here that you doctor did or didn't do and you have questions to check with your doctor. There could be many reasons why they selected one chemo regimen over another, or did something when it wasn't recommended or didn't do something - so when you do start researching in here remember that your Onc takes many things into his decision with his treatment for you.
Also, when you get to the surgery pages, make sure you are on the Lumpectomy Page if that is what you had or the Mastectomy Page if that is what you had. If you accidentally start reading on the wrong page, you might read something that doesn't apply. They put the words Mastectomy and Lumpectomy in the far left side of the page about halfway down. Each one has it's own page.
It's not terribly technical, but it is detailed in getting you to the right page, so take your time so that you know you are on the right page and can follow the links and schematics according to your situation.
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I just reviewed the Preferred Chemo types for TNBC from 2012 manual to 2013 manual and there were some changes as follows. The manual is dated March 2013 - so it's the most recent manual. I wonder if a new update will be available after March of this year.
In 2012 it had the following 4 cocktails for preferred:
TAC or Dose Dense AC followed by Paclitaxel every 2 weeks or AC followed by Paclitaxel weekly or TC.
For 2013 guide it has only 3 cocktails listed as preferred now with both mentions of AC being at dose dense:
Dose Dense AC followed by Paclitaxel every 2 weeks or Dose Dense AC followed by weekly Paclitaxel or TC.
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Thanks for the warm welcome, I figured they were kind of standard, I did ask my MO if I would have a pet scan and he told me since I was stage 2 that it wouldn't be necessary. I'm scheduled for all of the tests I am having to be done this coming Wednesday. Ok by me. Just waiting to hear back Mon for a date for my port placement, so I can get this show on the road. Ready to kick any rouge cancer cells to the curb.
Nancy
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Grammy - welcome to the boards!
Everyone, here is a GREAT book to have by your side during chemo. My insurance sent it to me when I was diagnosed, courtesy of the Wellness Program.
Eating Well Through Cancer - Easy Recipes and Recommendations During and After Treatment
by Holly Clegg & Gerald Miletello, MD
The book is laid out in a manner to help in various categories: wbc/rbc/protein/calories - so you can go to the coded page to see what foods are recommended. They have all types of different meal recipes - many very easy to make. So let's say you have anemia, then you tab over to that section for recipes that help with that.
At the very beginning of the book on page 7 - 14 is a cross reference list.
The colums are as follows: Day of Chemotherapy/Neutropenia/Diarrhea/Constipation/Sore Mouth or Throat/High Calorie-High Protein/Snacks and Light Meals/Healthy Eating Post Treatment. Then in alphabetical order is 8 pages of food items, with a checkmark in the columns of what condition it helps.
For instance: Peach Smoothie: Checked for columns: Day of chemo/Neutropenia/Sore Mouth or Throat/Snacks and Light Meals/Healthy Eating Post Treatment
Each page has the full nutritional analysis of each meal: Calories, Carb, Fat, etc and even has the Diabetic Exchanges listed under the nutrition analysis, for those who have Diabetes.
On each page is a little informative Doctor's Note. On page 107 for tuna pasta salad the note reads: Good source of portein and fiber as well as Vitamins A and C. Broccoli provides your cruciferous vegetable which is linked to cancer protection.
It's a great book, very informative. It also makes a great gift for someone you know who is also going through treatments.
It also has menus grouped by: Morning of Chemo / Evening of Chemo / Morning following Chemo / Lunch 24 hours Post Chemo and Dinner 24 hours Post Chemo.
The book comes in either a hard cover or spiral bound.
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Inspired, Thanks for the link on the promising tnbc treatments. I will definitely keep these in mind as I continue my fight.
I was supposed to get my 1st dose of round 2 of Carbo/gemzar yesterday, but it was delayed due to low wbc's. I was given a shot of neupogen (sp) to boost my counts, and they will try again next Friday. I don't like this delay at all. I know that this tx had already started to work since I can't feel some of the nodules that were present 2 weeks ago.So this delay worries me... I don't want to give these buggers a chance to grow before they are completely killed. My MO is going over my blood counts and dosage, and may adjust them, or may plan to give me neulasta after my 2nd dose of each round. I say give me the full dose. I dealt with very low wbc's before with AC/T, I'm sure I can do it again.
Welcome to all the newbies. There is lots of support here, and information. Inspired is such a great source of info.... Thank you so much!!!!
I hope everyone has a fantastic weekend. Time to watch some Olympic games!
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Oh Slow Loris, that is great news that you can already see improvement! Congrats! I'm sure they are monitoring you very closely and probably don't feel that there is an immediate threat as a result of the delayed treatment. Why had they not been giving you Nuelasta the day after chemo, like before? At any rate, try not to worry, and use this opportunity to rest and rebuild. Is there anything specific that they said you could do to help it along? Thinking of you - big hug! We are also just sitting down to watch the games too!
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