Calling all TNs
Comments
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Ang, oh your story is hilarious! Tomorrow will go much smoother for sure! Although I have been in that exact same kitchen situation, the way you tell it is very funny! And it is so maddening, especially when we are trying hard not to touch the other items that are okay for them to eat, like all the stuff we would like to have but can't. It's also a big lifestyle change eating healthy, because it's more prep work, and does require more time in the kitchen. It takes me like 20 minutes to make my smoothie and clean the blender, but only 2 minutes to drink it. Takes a long time to prepare salmon, steam veggies and clean up, but only a few minutes if we got to eat fish sticks in the oven like before. I really feel, and I've always felt this, that it does take a whole team of people to keep us healthy. The ladies on the forum for suggestions and help, the family we live with to help with the overflow of things because we are in the kitchen so much, and the additional time we are out of the home now exercising, etc. This is a whole new process and I don't know how many times I would never have eaten healthy if I hadn't had some extra support and help in the kitchen.
Ok .... try this, and this is my secret. Send a text to your hubby before he leaves work asking him to pick up few things on the way home, and give him the veggie list. This healthy shopping used to be very difficult for us, as we were going to what seemed like 4 grocery stores a week. Then we realized we could get the majority of our stuff at Trader Joe's, and believe it or not, the items are the same or less than Fry's grocery store. And we can even upgrade many items to organic for just a small amount more. Some items stay the same price, like organic carrots are the same as non-organic carrots at Fry's. We really think Trader Joe's is reliable consistent. We never see the bait and switch with them, or the gouging on other items they know you might be there to buy. Sprouts we've had several disappointing trips to. Last week a new one was opened, and we went to it .... do you know that while they had some great deals on fruit, they jacked up the Organic Maranatha Peanut Butter to $13.99. That is a 400% gouge. It's only $3 something at Wal-Mart and about $5 or so at the grocery store. It made me so mad to see them taking advantage of people like that, that I don't plan on ever going there again.
But anyways, send the emergency veggie list via text so they can pick up the items on the way home.
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So I am sitting here reading posts, feeling out of sorts...having terrible hot flashes, headache. Hormones are playing havoc on me....and then I read the post from Angstapp. I know you were venting and I don't mean to sound insensitive, but I laughed after reading your note.....I mean the consitpation, goodness could I relate. And then to bring home radishes after bringing home carrots? What the heck, men are boneheads sometimes...Hope your days go better.....
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Ang...don't take this wrong but your post completely cracked me up...I hear you girl...the guys really do try hard but they just don't always get it do they? My dh took over the grilling when I was going through chemo...since I had to have mashed potatoes with everything it worked out well..except he would take 30 minutes or more to grill a steak...yes..they were good but we eat anything if we wait long enough don't we...I have taken back the grilling...3 min. per side..no matter what it is....lol.
I used to buy a bag a spinach and carry it around and eat it like potato chips..right out of the bag....ate the red meat to keep the red blood cell count up...still eat pretty well and exercise....took me awhile to realize
that doing this was a lifetime commitment..not just a chemo time commitment..but it has worked out well...and is part of my life now...I enjoy it..and feel good...I am in much better shape now than I was 5 years ago...
Love to you all..especially to our new ladies....and keep up with the sense of humor...it can get you through alot....
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Hi ladies and gent. I was wondering if anyone knows anything about copper depletion therapy. I had read on a website about what cancer survivors should and shouldn't eat that tnbc survivors should avoid copper supplements. I freaked out when I noticed the calcium supplement I had been taking for a month had copper. Anyhow, I read on another thread about copper depletion therapy and I'm thinking about asking my MO about it. Also, do any of you take fish oil supplements? I don't but thought about starting once done with treatment and my RO said she's telling her patients to stop due to a study released a few months ago about fish oil and prostate cancer. Oh, and one more thing, was going to start taking effexor for hotflashes and the big D but read that it increases cholesterol and mine is already high. Ugh, I'm so frustrated...damned if you do and damned if you don't.
Julie- always thinking of you and hoping you're doing well.
Debra-thank you for your practical tips on good nutrition...baby steps for me. I always enjoy reading your posts.
Titan-I'm going to try to trade potato chips for the bag of spinach. Maybe carrots or cherry tomatoes. I really need to make some positive changes.0 -
I highly recommend carrots and radishes lol
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I hear that you can get 50% off on the price of radishes and carrots from New Zealand right now.
) BTW, for constipation try the all natural Smooth Move Tea. It's amazing, someone told me about it when I encountered this issue after surgery. One cup at night and you've got mail in the morning!Grace, I know the feeling! There is always a plus and a minus for anything I google. I've tricked myself into finding the good stuff. Now when I research something, I google the way I want it to go. i.e: Curcumin excellent anti-cancer benefits .... and it pops up. LOL
I have heard about copper depletion therapy, and have known people to even find filters that remove copper from their tap water and shower water. Since I've got enough vices and systems and protocols going on right now, I didn't think I could swing another one ... but I'll see what you find out and maybe I'll jump on that as well. So Titan, I like the spinach idea, but don't you have to keep the spinach at a certain temperature? How fast do you eat the bag? I might have to try this.
BTW when I was at my u/s appointment last month, the lady next to me pulled out sliced cucumbers.
Here are some tips for easy go-to snacks during the day.
Red bell peppers! Slice them into strips like french fries - they have a sweet flavor to them and excellent benefits.
Cherry tomatoes - excellent source of nutrients, like Grace mentioned.
Zucchini or cucumber - slice up and eat
One or two tablespoons of organic peanut butter (from WalMart) spread on 2 Wasa Crisp Breads. Yum-o especially with hot green tea!
2 hard boiled eggs, with turmeric, black pepper and cayenne pepper topped onto 2 Wasa Crisp Breads. Why them? Because they are whole grain, low in carbs and virtually no sugar! These obviously take a little more work to prepare. So not a quick snack, but good for protein or a tie-me-over to dinner.
Bowl of cherries - but hard to find right now
I've just started with popcorn. Not sure if I should research this more. I got the kind that was popped at Target. They use only one little dime size drop of coconut oil for the entire big cage of popcorn, and there is no butter on it - just a seasoned salt. I should probably get an air popper and do it at home. The lady who started the PositivesaboutNegatives Blog, Pat, puts popcorn down as one of her go-to snacks.
1 or 2 slices of Ezekel raisin bread. Received an A rating on Fooducate and has a very very low sugar number, and I think it's only from the natural raisin. It's made with sprouted grain and is delicious and extremely high rating due to the sprouted grain. Also low in carbs. Not many breads received an A rating.
Other assorted mixed fruits, as long as it fits the low glycemic list of fruits, which almost everything is except bananas and a few stray fruits.
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This was a very interesting link about TNBC.
http://nosurrenderbreastcancerhelp.org/breastcancer101/TNBC/TNBC.html
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Inspired-I looked at that link and saw the Avastin article. My doc had insisted on adding Avastin and I had a coplete response, I wonder if that is why I did?! Most of the news out was not very good for the results of using Avastin!
Guess what I had for a snack? Radishes and carrots! Funny thing is I never have radishes and rarely have carrots, then I come on here and read about hubby bringing home radishes and carrots! Too funny!
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Good link, Inspired, thanks.
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Today thank God I finished radiation....:) I was not sure I could do it but with a lot of prayer and I mean a lot I made it. I got a nice certificate stating that I finished the required amount. A pin (breast cancer ribbon with a R in the middle of it. Then someone made a quilt and when you are finished you get to sign the quilt. I sure hope and pray that cancer leaves me alone forever but at least for a long, long time. I say that because the doctor told me with my kind of cancer I will unfortunately probably battle it again. I think we all do in one way or another once you have been diagnosed. Physically it is hard and mentally it is torture. Thank you for all the support and prayers you have sent out for me. Forgive me if I missed birthdays and anniversaries. I don't type to much because my fingers are still hurting and numb.
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As a husband...note to self. NEVER bring home radishes or carrots when sent to the grocery store. I knew this site was a wealth of valuable information!
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Stupidboob-Congratulations on finishing rads! I had #17 of 33 today. I must say that my heart sank when I read about what your dr has to say about probably having to deal with this crap again.
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Graceforme: thank you and good luck to you. I did not mean to put any negative stuff out there but that is what my MO told me. She said she wished that she could say cured but with the way mine is behaving and being TN she thought I might have to deal with it again............hopes I won't but would rather tell me so I did not pay attention to things going on
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Stupidboob, Congrats on completion of rads! That is most excellent news! So what is the next step for you? Back to quarterly scheduled appointments? You will have great success!
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AlHusband: Counting down the minutes until Friday with you, please post an update when your wife is out of surgery and recovering! Many prayers continuing!
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Debra I see my MO at the end of this month, and the RO in a month and the BS in December
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StupidBoob, that will certainly keep you busy! How are you feeling? Have you made any plans on celebrating yet?
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It’s been a few days since I’ve checked in. I was supposed to start Gemzar & Carboplatin on Monday but I got a call less than 1 hour before my appointment telling me that my insurance had not yet approved my treatment. As this week has evolved, I’ve found out that the insurance will pay for all of my treatment EXCEPT for the Carboplatin because it is an off label drug. They kept telling me it was off label but did not explain what that meant until yesterday. Carboplatin has been labeled (or approved) by the FDA for ovarian cancer. The fact that Carboplatin has not yet been labeled by the FDA as a breast cancer drug, it’s considered off label and my insurance plan will not cover off label drugs. I’ve been told that I can pay for the Carbo myself and the insurance will pick up everything else. I’m SO disgusted by this!!! I have 2 separate oncologists at 2 separate hospitals in 2 separate states telling me that Carbo is their first choice for my treatment plan but that doesn’t matter. Also, despite multiple clinical trials proving the effectiveness of platinum based drugs in TNBC, my insurance plan will only pay if the FDA says the drug is for BC. I’m still awaiting the final decision from the insurance company but after talking to the director of benefits with my company, I think I already have my answer. I refuse to let my insurance dictate whether or not I get the appropriate treatment for ME. I know God will help me through this and he will help us pay for this treatment. It’s just so frustrating!!!
Oh, and to add to this week of wonderfulness, I found out Tuesday that I’m infertile. I’m 32, have never been able to get pregnant and now I know why. In 2004, I had laparoscopy surgery for endometriosis. I was 4 months away from getting married and my GYN at the time assured me that when I was ready to have children, I should have no problem. This is not how the fertility doctor explained it to my husband and I this week. As he read my surgery report, he’s eyes widened and he proceeded to tell us that I had stage III endometriosis at the time of surgery, which compromised my fertility long before my BC appeared. I’m SO angry that this was not explained to me at the time of my surgery. Instead, I’ve carried this hope and dream of producing/having my own child with my husband for 9 years. I was prepared to hear that I was infertile but it was harder to hear than I thought it would be. I know there are other options but that doesn’t matter to me right now. I just want to get the damn chemo that I need to fight MY CANCER and move forward. It just shouldn’t be this hard!!!
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Stupidboob-congratulations on finishing that exhausting round of treatments. Wishing you good recovery. You're an experienced patient, so you know it will take time. It seems to take longer than it should, I think. Nat
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Beachbound my wife had already had her lifetime limit of Adriamycin (16 years prior for Lymphoma) when she was diagnosed. To give her more Adriamycin would put her at risk of Heart Failure and/or Leukemia. So Adriamycin (standard treatment) was not an option. The doctor AND tumor board at Vanderbilt University...and a renowned doctor at Weill Cornell in NYC...and my wife's own local MO, all agreed that Cisplatin and Taxol was what should be administered. This is also an "off label" use for Cisplatin, which is similar to Carboplatin. The insurance company never even questioned it! That said, I'm sure there is an appeals process if your doctor agrees to champion your cause. Insurance companies are absolutely ridiculous at times.
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Inspired. Thank you for the well wishes. I'll be sure and update.
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Beachbound009-I'm so sorry for what you're going through. I learned about a co-pay relief program through my center. I did not think I'd qualify but I did. They covered my chemo and neulesta copays. I will PM you with the info.
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stupidboob...wocka wocka for being done. We are all dancing with you.
beachbound...I hate insurance so much. I am so sorry they are putting you through this. The dx itself is enough. I hope you can get some answers soon.
Maggie
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Beachbound, with all the doctors recommending that specific drug for you, likely they have seen a great track record of insurance paying for this, because most doctors won't keep trying to prescribe something if it gets continually denied. So, if that's the case and let's suppose for a moment it is, your insurance may not be the norm on approving this drug. I'm getting to my point .... while waiting for the decision, send an e-mail to your local news and to The Today Show.
Very important story here:
There was a case recently where a brother and sister with EXACT same health diagnosis, seeing the SAME doctor, and having the SAME insurance tried to get on a drug. It is a $20K a month drug. The sister's insurance claim processor approved it, and the brother's insurance claim processor denied it. They sent in a letter to the Today Show, who asked them both to come on and share their story. On the morning of the show, the producers put in one more call to the insurance company, and found that they were going to approve it, and the guy got to start on the medicine the next day.
The relevant message here is that it was just the luck of the draw with getting a great claim representative. The decision between life and death was literally in the hands of that one rep - who denied the claim.
Maybe you can call back and ask for another claim representative, a supervisor or something. In the meantime for fire power, you could get some of the news affiliates involved.
I hope they reconsider and grant you the treatment that all the docs are recommending.
Another option is to have each doctor write a letter about the success they have had with it, and fax them over as a group of letters.
I'm so sorry to hear of the problem you are dealing with.
I hope you get a favorable resolution soon.
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ALHusband: So did your wife have the cisplatin or carboplatin then, because your signature line reads Carboplatin?
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Beachbound, adding to what Grace said, there was a treatment card/program that my Onc's office had as well, where they get like 5 of these cards a month and can sign up a patient for access to the card. The only requirement was that the patient had to pay for the 1st treatment and then all the rest were covered. If you had to go that route, you can inquire if insurance prices at the in-network discounted contract price in that situation, so maybe the end cost will not be as high as the streeet price. I hate thinking this at all, let's all pray they approve it instead!
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Hi all..haven't posted in awhile..next month will be my one year out from chemo! doing good..got a head full of curls..still just a wee bit fatigued at times..but other than that..great! I had carboplatin and taxotere..approved by medicare..Looks like if they would pay for it..your ins. co. would too..Raise cain with them till you get what you need!
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thanks gang.................I am doing ok, just tired and still dealing with the burn issue but it is getting better. The stickers they put on me ripped my skin off (I am extremely sensitive to stuff) so now dealing with that too. I am just a nervous wreck for some reason today. My heart has been acting up again with the rapid rates so looks like I might have to go back on the meds. Going to give it a couple more days and then decide. As far as celebrating just a lot of thanking God and then a good meal from O'Charley's .....:)
Since it came back my guard is down a lot more this time as I am even more afraid. Just knowing that the darn monster could be in there just spreading even as we speak.....so starting over with the stinkin' thinkin' but this time I think I have the right for a bit anyways. Just scared of this darn thing....:(0
