Calling all TNs
Comments
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Debra - Good thoughts about tests to ask for. Thank you. The lump is in my other breast so I know it isn't scar tissue. The doc's felt the lump too but nobody can tell me what it is. The US looked like "probably" a cyst, so a biopsy or MRI should let me know for sure. I am definitely not going to wait and see if it gets bigger like my BS suggested. I will talk to my MO tomorrow who is very happy to order tests. I have never heard of the Diffusion with MRI so will also ask about that.
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The Diffusion with MRI main goal is to prevent unnecessary biopsies, and give a clearer more accurate picture than the MRI. It's an add-on at the end, and only takes like 5 more minutes. The center told me that the technology is so good that the Radiologist I saw now orders it for all his MRIs on those with bc history.
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CatWhispur - can you give me a sample of what you eat during the day if you cut out all carbs? I do low-fat low-sugar, and since animal meat is considered to have carcinogenic implications (in some research) I'm trying to really only eat a tiny amount. What do you eat in place of this? I also do not do cheese and dairy. The carbs I do eat are whole grain or whole sprouted grain though.
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CatWhispurr ... what did you say to your MO, did you take him any info for the Metformin? I am on Metformin as well, but my MO said no, so I asked my PCP for it, and now I have to tell my MO what I did next month. My husband said he already knows, as my PCP would have sent him the update on me, plus they are part of the same health group company .... but then why would my PCP tell me to be sure to let my MO know about my labs?! So I'm not confident that he did fax that over, and if not, I have some explaining to do next month, and he probably won't be too happy with me.
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QUEENKONG - CONGRATS on your 1Yr!! Loved your update and so happy to read that you are doing well!
For messy house do this:
Rather than do room by room (this can leave you too long in one area), instead start with an overview. Go room to room and pick up anything that will get thrown out. Water bottles, packages, whatever. Then put anything away that can get put away easily, such as book back into bookcase, lipstick back into drawer, etc. Pick up.
For those papers, don't go threw them yet. Wait until you have a clean work area and a clean presence around you, it will make the job easier. Just collect all the papers and put them in one neat area tucked out of the way.
Then get the laundry caught up.
Next move to the bathrooms, and get those done.
Then move to floors, because this is the final step of the bathroom, and as long as you have the floor products outs, use them on all the floors in the house. I also highly recommend the Shark Steam Mop. I got it for $49 at WalMart, no need to pay $100 at Bed Bath and Beyond. Just add water and it seams it so well, you won't believe it until you use it.
Then go back and windex and dust. If you already had the windex out for the bathroom, use it at that time.
Now vacuum.
Somewhere along the way, I missed the kitchen. I always like to start with a clean kitchen, so get your kitchen clean first, at least clean enough to where the dishes are off the counter, the sink and counters are clean. You can organize cabinets another day once the whole house is back together. The tip here is to get it all clean, so you can feel less stress. Then over the next few weeks you can take a special area to concentrate on, if you need to do more, such as a special closet project, or cleaning out the pantry, etc.
I hope this helps you a bit! Leave TV on so when you are doing this, you don't feel lonely or like you are missing out on anything. Entertain yourself while cleaning.
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Debra - I am originally from Wisconsin, so can't cut out the cheese
and I love beer, so those are my downfalls. I switched to N/A (non-alchoholic) beer mostly but do like a regular beer sometimes with football or a movie!Anyway, I have added a lot of nuts, seeds, and beans for the protein. I also like to eat Greek Yogurt which is high in protein. If you buy Plain, it has less sugar and you can add fruits (I keep a bunch frozen). Makes great smoothies too. So typical meals are
Breakfast: old fashioned oatmeal (less processed) with raisins, cinnamon and Unsweetend Almond Milk - it has more calcium than milk and only 30 cal per serving. I use it in recipies too and for smoothies. I have this most mornings - my colesterol is great! Other mornings, I will have an egg with mushrooms, onions and spinach. I usually try to have a fruit too like orange or banana, or egg mixed with salsa which is easy and tasty.
Lunch: Big green/red, leafy salad with arugula, spinach, kale, cabbage, cucumbers, tomatoes, nuts (raw almonds or cashews), raw pumpkin seeds, and of course, cheese. You can throw other things you like like mushrooms, onions, broccoli, etc. to change it up. I use (or make) a greek yogurt dressing. Bolthouse makes some great Yogurt dressings - look by the produce/lettuce. I try to have this every day. For more protein you could add some tuna or chicken breast but I don't. Maybe some low-fat cottage cheese on the side.
Supper: Usually a big chili bean burrito with a low-carb wrap. More green lettuce, tomatoes & cheese. Sometimes, I add corn or spinach on the side. I love spinach hot or cold and try to eat some every day. Other suppers might be spagetti over spagetti squash (instead of noodles) with a vege side, Feta/tomato/mushroom/pesto baked on a low-carb pita bread. I love chinese stir-frys too. I eat vege burgers once in a while (with no bread) and use soy bacon for BLT's or soy sausage for pizza. I don't buy bread anymore. Any sandwich you want, you can use low-carb wraps or pita - some of these add flax or omega-3. I just had a tuna wrap with greens, tomato, cheese, curry powder and greek yogurt dressing. Yummm. I eat some tuna and salmon but otherwise don't really like fish. Baked sweet potato fries with olive oil and cummin are yummy too to go with a meal or wrap.
Snacks are protein bars with almonds or peanuts, greek yogurt, fruit/almond milk/greek yogurt smoothies (can throw in some flax seed too), popcorn, or a mixture of almonds, pumpkin seeds, cashews and raisins.
Hope this gives you some ideas. Glad to help if you have other questions.
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Debra - my MO is very open-minded. Right from the start, I take him articles and new research on TNBC. He teases me if I show up with nothing. When I presented him with the Metformin research and trial info, he was supportive. I told him I would rather take it under his supervision than to have to go into a blind trial. So I started slow (over 6 weeks) and worked up to 850 mg twice a day. I had no issues starting slow like that. I am now down to 850 mg once a day because of my weight loss.
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On your 3/4 month check-ups do you always get blood work done? If not how often do you all get it?
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MY MO does bloodwork every 6 mth.
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All those ladies who knew our LuvRVing (Michelle) will need to know that she is a very poorly lady at the moment. Only eating tiny little amounts and is now unable to walk at all.
Luv was so special to us all and was so very kind and helpful to me when I was first diagnosed. She helped me so much in so many ways and was a mind of great information that helped me on the road to recovery.
Keep fighting LUV. We love you and are thinking about you every day. Annie xxooxx
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I just came across this PDF from this website that we are on. Scroll to the bottom of this link (the very bottom of the page when it loads) to download a 31 step pdf to prevent breast cancer. It's very interesting, and discusses why breasts are more vulnerable to cancer than other parts of our body.
Here is the link: http://www.breastcancer.org/risk/factors/cosmetics
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CatWhispurr - we are on the same page! Thank you so much for the info on additional creative ideas!! I love all your meal ideas, and will try to incorporate the dinner one. I have either eggs or steel cut oatmeal, cooked the old fashioned way in the mornings. With all the eggs I eat, I too have really low cholesterol.
What brand of protein bars do you get? I do stay hungry a lot, and I'm told it's due to the exercise - since that burns usually around 1000 calories. So I try to get more protein or fiber in to keep me fuller, longer. The Metformin has dramatically cut my sugar cravings though.
Why did you lose weight on Metformin? Is it because you were eating healthier or because you were not as hungry? I just started on it two months ago at 500 2x a day ... but my PCP and I didn't talk about upping it, which I will approach him about. I have lost the two pounds I gained before starting it. I was 118 before bc, and got up to 128 during treatment, but have been at 107 ever since.
For bread, what I use is Ezekel. It's one of the only breads that Fooducate assigned an A rating too - low in carbs, low in sugar, no fat, etc! It's amazing stuff. We have now switched any product to that brand if we need it. My carbs are from sweet potatoes - plain but really good for you! And carbs from fruit. I also do have some organic pretzel sticks whole wheat that I will nibble on at times.
Today I had a kale/spinach smoothie, and put the whole bag of kale in it. That was 3 servings of kale. I don't recommend doing that.
Are you taking any supplements?
Thanks again for all your very helpful information!!
PS - How did you discover your breast lump? My dates are really close to yours. I found out 12/27/11 and had surgery 1/4/12.
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CatWhispurr - my MO teases me that I think too much like an Engineer. I want definitives, not ranges. I want reasons why things go up and down. And, according to him, I micro manage everything. But I do have a fond respect for him and he has a Ph.D. in Hematology. He did try really hard to get me and keep me on Tamoxifen. I got to be on it for one week, and then we ran one more test, the newest one on the market for ER/PR clarity and it proved without a doubt that I'm not ER+, so had to go off Tamoxifen. He would have kept me on it if only I had been 1%, and he said the standard is a reading of 5% ER+ to go on it. So I'm not sure what the hesitation is with the Metformin, I'm thinking he thinks that I'm doing so well that I don't need any assistance. It for sure has helped me move forward and worry less. For me, psyche was very important to long-term healing and success as well. I will post his response when I find out what he has to say about things!
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Cocker: I'm saddened by the recent news of Michelle - how did you get your update? Did you get to talk to her? Is she able to get outside and sit in the sun? If you talk to her, please let her know we are all pulling for her!
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It's my last chemo tomorrow - thank goodness!!! Someone came up to me today all smiley smiles "yay it's your last chemo, wohoo" bouncing up and down like a kid in a candy store, I said "geez mate, it's not like I'm off for a pedicure and a facial", god I'm a cow mooooooooo.
YES i'm bloody stoked that chemo is over, but I'm also scared about what comes next.
Bouncy happy people pffft, still could be worse - could be carrots 5 ways for dinner.
Hope you guys are all good out there xox
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Debra - I also forgot to say that I like making soups and stews with lots of vege's, kale, spinach and beans. Three-bean chili is great for those dreary days, like today in Atlanta. I sometimes put unsweetened applesauce in my oats. I buy FiberOne or Nature Valley protein bars - I like the ones with almonds and dark chocolate. I like Balance bars but they are too expensive. Where do you get that Ezekel and where do you look for it in the store?
It sounds like we are alot alike!! I think a lot and micro-manage everything too.
My weight went up about 10 lbs during chemo eating comfort food, then after starting Metformin, it went down 20 lb. I was definitely less hungry on Metformin, then started eating healtheir on top of it, so I think it was a combo. I forgot to mention that my numbers were pre-diabetic during chemo so my MO used that indicator to start me on Metformin, so those numbers went down after stopping the steroids. All other Dr's I see always assume I am diabetic when I put that I am taking metformin so I always have to explain that I am taking it for cancer recurrence prevention. For me too, my psych was very important to me. After all the treatments, I had no way of knowing if it worked and I was cancer-free. It was driving me nuts and I couldn't move past it, so my MO found a reason (a constant cough) to order a Pet/CT scan. After it came back clean, I had a huge relief. For me, I needed that clarification to move on.I take baby aspirin, Vit D (it was low when I found the lump), B6 & B12 (because I am a vegetarian), calcium/magnesium/zinc, and milk thistle (for keeping the liver healthy).
I found the lump myself, just felt it when I turned over one night - it seems to have appeared suddenly. I found it 2 years ago on 9/17/11 but my BS (the one that is not very concerned now about new lump) and radiologist were dragging their feet and I didn't get surgery until 12/7/11. I only got surgery then because I was stressing out and found my MO to talk about chemo. He was shocked I hadn't had surgery yet and called the BS to tell him get me surgery ASAP! So, I was stressing for 3 months and the tumor doubled in size, started hurting and my lymph nodes were starting to enlarge so I know it was trying to spread. That is why, I guess, that lost my trust in him being proactive on my part. I rely on my MO for that now.
You should be glad you are ER- so that you don't have to deal with that Tomoxifen. Did you take your MO all the research and literature on Metformin? Tell him it makes you feel in control of preventing recurrence.
Cocker - such sad news about Michelle. I remember all her help for me too and was concerned about her since she had opted not to have chemo at first discovery of lump. My prayers go out to her.
Angstapp - Yeah for chemo being done! That is a big step but I can relate that then "what next" feeling creeps in.
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Good morning ladies - I'm new to this forum but have read many of your posts. I started chemo on July 11th and usually just post with the July Chemo group. I can see there are some very knowlegeable and (unfortunately) experienced people on here so I thought I'd run a couple of things by you.
I've finished 4 dd ac, and 2 dd taxol tx's with 2 more to go. Unfortunately taxol seems to be hitting me harder than ac. My rbc and hgb are very low and I barely have enough energy to empty the dishwasher. My mo checked my iron and b12 level and said they are fine. So my options are to just tolerate the exhaustion and hope this improves or have a blood transfusion. I'm worried about the safety of a blood transfusion and dont want to expose myself to new problems. I was led to believe that people usually start getting some energy back gradually when on taxol. Is that your experience and do you have any advice regarding whether or not to have the transfusion? My instinct is to wait and hope for improvement, but if the levels continue to drop I may not have a choice.
I'm also curious about metformin. What is it and why do you take it? If you can refer me to any articles that would be great.0 -
to Inspiredbydolce --- it wore me out just to read your advice on cleaning! Thank goodness I have a small house, and just do one room a day.
it DID take me a long time to get caught up after I finished with chemo. Even doing just one room a day, I was skipping the hard parts. And I was frustrated by that, but my DH didn't seem to care, so it waited for me to get better.
Nat
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Debra - My MO checked with the rad dept and they can do an MRI with Diffusion so that is what he is going to order even though he had never heard of it before. The rad team told him though that they have found no benefit in adding diffusion so they hardly ever use it. Maybe they just don't know how to use it to their advantage?? I don't know. Anyway, the MO said that the lump is too small for biopsy so an MRI is the only option left. The MO did talk to my BS about me wanting more aggressive follow-ups/screenings, so hope BS understands now. I haven't heard from the BS yet.
Lark - Welcome! You have landed on a great place with lots of info. I also had a harder time on Taxol. It made me sicker and gave me neuropathy to the point I almost didn't do the last DD, but I decided to get it so that I would feel I threw everything at the beast. Like you said, you may not have a choice with the transfusion. I would say go with your gut and if you want to hold out until it is absolutely necessary, that is your choice. I wasn't in that position because I got a Neulasta shot after every treatment, so it always brought my numbers back up. Are you getting Nuelasta?
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love hugs support and prayers for our LUVRVing
Maggie
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Oh Tina, I'm thrilled for you! While the MRI w/diffusion may not be a benefit to those without an area of concern, for you it will be beneficial because it will give a clearer picture of anything that is a question mark. I'm so glad we can help each other. All of you have helped me be able to charter a strong survivorship plan, and with all the information we share collectively it makes us better able to take control of the things that we can monitor and control.
Hi Lark! Metformin has many benefits, and in a general sense of termiology, it works by keeping circulating insulin cells low. Researchers feel cancer cells thrive on sugar/insulin so when this environment is reduced, there is significant benefit. All stages of bc have been shown to have great benefit from Metformin, but it's still in trial - but is in Phast 3.
I've come across many women who were able to get on Metformin, either through their Onc through *off label* or through their regular care physician. Off label means a drug has data supported by medical journals, articles or references from colleagues that it has been beneficial for a use not specified by the FDA. Metformin has been on the market for a long time, and some Oncs are open to prescribing it. Other examples of drugs that are prescribed off label is baby aspirin to prevent heart attacks, birth control to control acne or regulate periods, and most recently botox is being given to reduce migraines, although that might be FDA approved now, I'm not sure about that one. Just wanted to give you an idea of off label use - it's something that has
If you are interesting in taking it, I've attached the articles on Metformin and you can see what your Doctors' opinions are. I followed suit of some other TNBC members on here, and went on it recently. Ask others what brand they are taking ... I've read that some can have gi/bowel issue. I went with brand name and get it filled at Costco.
INFORMATION REGARDING PROCESSES OF FDA APPROVALS:
http://www.fiercebiotech.com/topics/fda_approval_process.asp
http://www.cancer.net/all-about-cancer/clinical-trials/phases-clinical-trials
INFORMATION REGARDING METFORMIN:
http://strittermed.org/breast_equity/?p=44 This is an authors recap of the impact Metformin had a 2010 San Antonio Breast Cancer Symposium
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3282095/ "Metformin: Mulit-faceted Protection Against Cancer"
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Nat - that's funny. Well, I have OCD on top of things, so I clean daily, but I have been behind before, and have done the room by room to build momentum. That works well too! Our place is also smaller now, so easier to maintain.
Tina - I buy the Ezekel at Trader Joe's. Someone told me about some great cinnamon bread they get at Trader Joes, and I went there to get it, but when I scanned it, it was given a C. So the Fooducate App listed this as an alternative. So I bought the Ezekel Cinnamon Raisin bread first, and although it did not sound appetizing, it tastes amazing! Then I bought the sandwich bread, and last week added in the things that look like tortillas ... well, may that is what they are tortillas. LOL I added steamed cabbage to it and rolled it up and ate it. It was not yummy, but that was the cabbage's fault, not the tortilla. LOL I read somewhere that cabbage is excellent as well for bc prevention.
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Lark, that's what I wanted to ask as well, are you getting the Neulasta shot the day after chemo? I had that too, and my rbc was always fine. Now my wbc ran low, and still is low, but Onc says it's due to the heavy workouts I do, and I've been instructed to reduce them.
What is everyone else's WBC now, especially after Taxotere? I know, such a random question!
)CatWhispurrer - you take the same supplements I do - my grandmother had anemia and was on B12, so I went on them a month ago and then had my PCP check them. The pill is a B6/B12/Folate all-in-one.
I was going to go on the Milk Thistle, but read there was some controversy about it. What does your team say about it? I'll research again, I know many women do supplement with that as well.
I also do not have the mag/cal/zinc supplement. How much units do you take? I will order some today from Amazon!
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Debra - I'm OCD too LOL. I had a hard time letting go the house cleaning when on chemo but had some friends come and help once a week which kept it bearable. I have to do my house in stages, usually by floor since I have a large 3-story house with 12 cats (some special needs) to care for too. I am now trying to catch up on outside work too which got left behind. I don't have a Trader Joe's anywhere near me :-( I get the calcium/magnesium/zinc (it has D3 too) at the grocery store and just take one a day. I didn't know there was one pill for all three B6/B12/folate. Do you get it through your doc or is it over the counter?
My MO actually became a believer in Milk Thistle because of me. My liver values went really high during chemo and he was talking about having to skip some treatments but I asked him to let me try Milk Thistle first. I already had my 19 yo kitty on it because of her liver values, so I started taking some of my kitty's
My liver values all came back into normal range and I didn't have to skip any treatments. MO said he had never seen anything like that. So, I just kept taking it even though I lost my kitty last year at 20 yo.My WBC was 3.6 last check end of August which is getting on the low side (3.3-10.5) but it had been staying around 4.7-5.2.
Well, gotta go clean lol!
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Oh that's funny about the OCD! I sent you a PM (not sure if you know about those). LOL My wbc hovers at 3.0/3.5/4.0 - it is always that. I've only had it one time at 6.2 and that was the day of the BMX surgery. I've read that B12 helps nourish and support the wbc, so I started taking that.
I wonder if the low WBC has to do with our diets ow, since yours went down, and you've been eating healthier.
Have a great day - I'm off to make the cabbage rolled tortilla for lunch.
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I was told neulasta boosts the wbc, not the rbc. I just googled it and that appears to be correct from the neulasta website. I was getting the shot, but my dr agreed to let me skip the last one since my wbc has been good, 5.7. I was hoping to reduce the bone pain that I got once I started taxol. My rbc was already low before I skipped the shot so I dont think that was the cause.
Thanks for the information on metformin. I'll read through it.
Cabbage rolls?? There's no way I could manage that right now! I was reading all the things you cut from your diet. I'm not there yet, but I'm trying to make some healthy changes. You might want to try adding quinoa to soups or salads. Great protein and fiber and there are even some pastas made from quinoa.0 -
Lark, many of us were on the weekly taxol regimen (for 12 weeks) instead of the short dd regimen that you are on. The cumulative dose is the same on both regimens, but on weekly taxol, you receive a lower dose at each treatment since it is spread over 12 visits, which results in fewer (sometimes minimal or no) side effects. You might want to check if your MO would consider spreading the remainder of your treatments into a few extra visits on a lower dose, to minimize side effects. My blood count was never low, nor did I experience other side effects during the 12 weeks.
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I need a triple negative kick in my pants. My onc just personally called me to help me shake off my shivers. Finished chemo Thursday. He said the tumour was very small, we gave you chemo and there's nothing left. It' more likely you could die while driving.
this is true-he knows my driving:)
I'm scared to death but I should probably get off these boards and go live while the living is good. I feel like a quaking tiger0 -
Debra I'm a workaholic when it comes to house cleaning and I just love doing it. I put on some music and sing my way through it and it makes me go faster and faster. However, having said that i did let it go a bit when going through treatment so don't worry about it, just take one day and at a time and do what you can. Believe me the rest won't go away.
Catwhispurr I also had a bad time on taxol. I had an allergic reaction to it and only managed 7 out of 12 treatments. Hopefully that will be enough, time will tell. I didn't feel so sick but it did give me neuropathy and as I am a medical typist this did not help. I also got red, itchy hands that would drive me mad as soon as I got warm in bed.
Have a good day ladies.
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Cocker~ Thank you for letting us know about LUVRVing.
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