Calling all TNs
Comments
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Oh Kathyrnn - what a vivid picture! That sounds like so much fun!
)Lana - congrats on being chosen for the competition! You have got to be so excited for this. Did your Onc not schedule for your port to be removed after your final chemo? Did you guys have any discussion about it? If your Onc has mentioned that you could have the port removed after your final chemo, then by all means I would not hesitate to remove it. The removal surgery was of less time than insertion and healing time was pretty quick. I had the steri strips. I think those still have to fall off naturally, which they usually say starts to fall off in 7-10 days. If I was going to be doing exercises, and getting adjusted back to life and moving forward, I would get the port removed as soon as possible. Depending on when you could get it scheduled would depend on if it would interfere with the competition as far as healing purposes. I think I had lifting restrictions for 7 or 10 days. Make a call on Monday and inquire and see if you can get it removed this week!
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If you are new to the boards, here is an excellent article. I have found the information so helpful in it, and I've modified several things in my daily life, as suggested in this article. I've listed the various topics in the article below and the direct link to it.
I've decided to post it again, because with how we all want to get on a targeted therapy, there is still much data that shows we can lower our risk with other changes in our life, so I wanted to share this information. I really have referred to the article a lot, because I like how it describes how something works, so it gives the reasoning behind things. It also references reduction % for amounts of exercise, which I felt was a really good guide in setting up a weekly exercise goal for myself.
Practical Principles of Some Lifestyle-Oriented Breast Cancer Risk Reduction
http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html
Topics:
Dietary Restriction, A Better Way to Diet:
Intermittent Energy Restriction (IER), Insulin Control, Glycemic Control, Physical Activity/Exercise (PE)Caloric Restriction + MCM Diet
adherence + Resistance Training + high-PE (high MET hours aerobic physical
exercise), and How to Think About
Environmental Tumorigenic Exposure Reduction
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Cocker, thanks for the reassurance about port removal. I do not do well with sedation, and had the most miserable experience when the port was put in. This time I demanded just a local anesthetic.
Carol
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Regarding the post on the Lymphocytic Infiltrating Tumor
"Diagnostic and Therapeutic Implications of Tumor-Infiltrating Lymphocytes in Breast Cancer"
http://jco.ascopubs.org/content/31/7/836.full
Two things were interesting in this article: "... it is impressive that in the Loi et al study,2 the 5-year disease-free survival rate of those with lymphocytic infiltration is 92%" (referring to TNBC)
"Evaluation of tumor-associated lymphocytes by standard hematoxylin and eosin staining is extremely inexpensive and can be performed easily in the setting of the routine histopathological evaluation. Considering that medullary breast cancer is an old pathology concept and that tumor-associated lymphocytes are also relevant for BRCA-mutation–associated breast cancer, pathologists should perhaps get used to reporting this parameter as a part of the standard histological description of breast cancer."
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Some helpful books:
1. The Cancer Fighting Kitchen: http://www.amazon.com/The-Cancer-Fighting-Kitchen...
2. Crazy Sexy Diet: http://www.amazon.com/Crazy-Sexy-Diet-Veggies-Ign...
This is who the author of this book is: Kris Carr
"February 14, 2003, Carr was diagnosed with an extremely rare and incurable Stage IV cancer called epithelioid hemangioendothelioma
affecting her liver and her lungs. With the slow-moving nature of her
tumors, Carr decided to take what she calls a "watch and live" approach.
After her diagnosis, she turned to nutrition to boost her immune system
and increase her longevity. She also decided to make a documentary film
about her journey with cancer."3. The 22 Non-Negotiable Laws of Wellness
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Kathryn, that sounds like so much fun! Sorry to hear you lost some hair with the helmet!
Lana, good luck with your goal and competition! I really need to start a program of sometime. As of right now I'm still sleeping much of the time due to my side effects from radiation. I had the MD Anderson protocol 3D gaited breath holding radiation. If you go this route, be sure to go to a place that has experience with it.I had a miserable time at my local hospital since I was the FIRST patent they treated this way.
But overall I'm glad I went with their protocol. InspiredbyDolce, thanks so much for all the information and links you posted. It's nice having research handy.
For anyone interested in the mushroom capsules, it is the brand that momoftwodoxies posted. I started out buying from FungiPerfecti, then Vitacost, but now buy from Amazon since they have the best prices. Turkey Tail: http://www.amazon.com/Host-Defense-Fungi-Perfecti-capsules/dp/B0053DR1EM/ref=sr_1_1?ie=UTF8&qid=1393200779&sr=8-1&keywords=fungi+perfecti+turkey+tail
I currently take a combination of capsule of mushrooms for overall general immunity. (It has turkey tail and maitake in it) http://www.amazon.com/Fungi-Perfecti-Community-Vegetarian-Capsules/dp/B002WJ1BZK/ref=sr_1_1?ie=UTF8&qid=1393201214&sr=8-1&keywords=mycommunity
Here's a video of Paul Stamets giving a TED talk regarding his mother's breast cancer:
Dr. Weil article:
http://www.drweil.com/drw/u/QAA400904/Turkey-Tail-Mushrooms-for-Cancer-Treatment.html
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I miss you all so much...have been taking a little break from all of this.
Noni...goosebumps from your inspiring story
ladies stay strong during treatments! it does get better
fighter...thinking of you as you continue to fight this monster within
I have decided that I will put my continuing recon on hold for just a little bit. I just do not want to deal with drains and recovery and believe that my hubs could use a break from it all too. Today I wore the shirt I had on the day the doc said those fateful words. It has been sitting in my closet on the end of a rack. I look at it everyday and did not want to wear it for fear the memories would overtake me. But today I felt powerful and pulled it out, put it on and wore it to work all day. I was like I had control over something else in my life again. Kiss my a** breast cancer....so stupid but none the less empowering.
Love and kisses
Mags
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Missed you too Mag's. I agree, we don't need or want memories of that time. Today the new stronger Mag's, has climbed another mountain by putting the shirt on and saying "up yours cancer". It's time to start living and see just what life has in store for us. Later on you may want to reconsider and that's ok as long as it's at your pace. Too much to see and do in life to keep looking back and we need to see what precious moments are still out there for us, not cancer ones. Go and do something nice with that old feller of yours and so will I.
In time hopefully all of our newbies will come to this stage.
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For all those who have a sweet tooth... i guess just a little bit of sugar everyday is ok. Check this link
http://www.cancer.ca/en/prevention-and-screening/b...
also check this out for popular myths related to cancer. It mentions sugar too.
http://www.mayoclinic.org/diseases-conditions/canc...
In fact AHA recommends:
- 6 teaspoons of sugar (100 calories) per day for women
- 9 teaspoons of sugar (150 calories) per day for men
Bluebird and Inspired: Thanks for the links.
Inspired:: Regarding Lymphocytic Infiltration, Google gives mixed reports. Some studies say that its a sign of good prognosis while some studies say that it could lead to tumor progression and metastasis.
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BanR - Thanks for the update on the lymphocytic infiltration. I actually had never heard of it, until you mentioned it, so I don't know much about the current theories involved with that. As with many things we research, studies reflect pros and cons.
Now for sugar, there are 4 calories in 1 gram of sugar and many things you would not normally think would have sugar, do. Examples: bread, ketchup, salsa, etc. So when you think about allowing yourself sugar (if you are planning on restricting it to a certain level) consider factoring in a buffer zone for the sugar that is hidden in stuff that you might not know about. But you are right, we do need a certain amount of glucose for our body.
I do eat sugar every day. I get these 'cat cookies' or 'animal cracker (organic)' from Trader Joes. One serving is 17 cookies, and with only 1.5 grams of fat and 6 grams of sugar (that is barely a little over one teaspoon). I sprinkle them along throughout the day, so I don't feel so deprived!! Someone on these boards told me about them. I will also have fruit, but that's a natural sugar. And I will have organic dark chocolate (usually one square at night) with my hot green tea, but one square is only 1/12 of one serving! You can find all different types of low sugar low fat snacks if you go to a health store.
Also, I highly recommend downloading the Fooducate App. It scans the barcode on each product at a store and gives you an A-F rating. It will also give you alternatives to the product you scanned in an effort to help you choose one with a higher grade. Someone told me about the Trader Joe's cinnamon bread, so I scanned it, and it had like a B or C rating. I clicked on "alternatives" and it gave me the Ezekel Cinnamon Bread at an A- rating! So that is what I got instead and have been buying it ever since. I totally love the Fooducate App! It will help you make better choices.
I cut out Diet Soft Drink and Coffee when I got dx'd. Now I drink only water and green tea. But sometimes I will go through McDonalds ($1 for Lg Tea!) and instead of unsweet tea, sometimes I will ask them to do half-sweet and half-unsweet mixed together. That way I get a little sweetness but not too much. At home I drink my hot organic green tea all day long, without sugar. It took a while. At first I started with a pack of sugar (one teaspoon) and then I gradually weaned myself off of it.
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Thanks, I'm going to download the fooducate app.
Question about Ezekiel bread. I just looked at it yesterday. It's in the freezer section at my grocery store. Do u keep it frozen and thaw/toast a slice when you want it. When it thaws is it soft? Usually when I have eaten previously frozen bread it taste stale
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In an attempt to reduce my wife's risk of recurrence, we have kind of reinvented our diet. It's low carb, low sugar, low glycemic index. Anyway, part of that is we've switched to the Ezekiel 4:9 bread. I wish I had a better report...we eat it regularly because it's better for us...but I find it's so damned dry I have to look twice to make sure I'm not eating the packaging! But, after a while you get used to it I guess. I don't mind it any more. I try and make it a tad more moist by spreading mustard on sandwiches made with it.We keep it in the freezer then take it out and use it like any other bread. We take the whole loaf out. We don't thaw a slice at a time.
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My family, except me, eats Ezechial bread and we keep it in the refrigerator. We freeze some extras.
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Hey Gang,
I will try to catch up when I can. There has been a lot going on and I can not even remember if I updated. My brothers surgery went well with a few things here and there. He went home and he was hurting (to be expected) but it got worse. Then today he went into A-fib, is extremely anemic (blood transfusion has been put on hold) but may take place. He is back in the hospital. I seen the surgeons assistant and she feels what I am feeling is just radiation changes thank God. I have been having stomach issues and ended up in the ER Sunday/Monday, they were thinking diverticulitis and/or kidney stone. I have to go this week for an endoscopy but because of the diverticulitis the gastro has put the colonoscopy off until I do a round of antibiotics. Asking for prayer and I will try to catch up as soon as I can. Lori 1020 yes it was me that said I have lifeless eyes. You all are all in my thoughts and prayers even though I am not here much. Calling it a night but I will try to catch up soon .0 -
Stupidboob what a terrible time you and your brother are having. Relieved that it is only radiation changes and hopefully nothing will show up on your colonoscopy and your brother will now start to get better. Sending you and your family big hugs and Lots of prayers to get well.
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Regardgin Ezekel bread - I've never bought it frozen before. Some types of the Ezekel bread are more dry than others. If you try to pull the slice out of the package and it crumbles apart, that means that one loaf is stale. Ezekel is a bit of a dry bread, however, some of that has to do with the dates on the bread. It's important you search through the rack and get the date farthest out. Also, the Ezekel cinnamon raisin bread does not seem as dry as Ezekel's plain bread.
I've never bought it frozen or had to freeze it before. I buy it from the regular non-freezer bread section and when I get it home it goes into the refrigerator. The cinnamon raisin bread is really good and you won't need to pamper it as much. The sandwich type you have to watch the dates carefully and don't try to put almond butter on that one. It would be way too dry!
)ALHusband brought up a good point, and it's something that I'm doing as well, and that is watching the glycemic index. The glycemic index being low helps control spikes in blood sugar, which is of additional benefit not only in controlling insulin surges, but in keeping energy consistent throughout the day. There are a few glycemic index apps you can download. I've got 2 on my phone. A quick reference sheet and then a more complicated app. You can search for the app and choose one you like.
For those of you who are considering juicing vs blending, I've researched this a lot and have also talked to my Onc about this. Blending might actually be better because of the fiber that you have from making things in a blender, it slows down the rapid absorption of sugar into the bloodstream from pure juicing. So if you are on the fence about buying a juicer or a blender, I think you would have just as much success with a blender, and the added benefit of fiber into your diet.
StuipdBoob - I sure will be thinking of you this week as you go through your procedure. I hope you are feeling better now. Many hugs to you! You've been through so much with you and your brother to worry about as well.
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stupidboob: sending warm wishes and wish your brother a speedy recovery. Good to hear that it was only due to radiation. I am sure you will go through all the procedures smoothly!! You are a very strong lady, I must say
There is one thing I want to know.. when I began AC, I had so much nausea that I hardly ate anything. My weight kept dropping down by 2 pounds with every cycle. By the time I reached my 4th and last AC my weight was down by 8.8 pounds! But my oncologist never changed my dosage ( except for the last one). Then with taxol, I didnt have any nausea and I started eating and my weight went up by 2 pounds with every cycle and by the time I got to my last taxol, it was up by 8 pounds again. But my oncologist never increased my taxol dosage.
With weight our body surface area also changes, so the dosage should also change... I feel a difference of 8 pounds, between the 1st and 4th is quite a bit, wonder why he never changed the dosage....
Anybody having any idea about chemo dosage? Did your dosage remain the same too, irrespective of weight fluctuations?
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AL I feel the same way about the dryness of Ezekiel bread. I'll use it for a while and then go back to an multigrain orangic bread that Costco sells that I really like.
Stupidboob, so sorry about both you and your brother's problems. You have really been dealing with a lot. I hope you catch a break in the action at some point soon. Hugs.
I got my last drain out (the ALND drain) yesterday. What a relief! I'm two weeks post-op and still have quite a bit of pain. It's impacting my sleep. My surgery was different because I had thirty-year-old sub pec implants that had ruptured that had to be explanted and the capsules around them taken out. The recovery from hat part of the surgery ended up hurting more than I expected. It's getting better daily and I know this is temporary. In the grand scheme of things, this post-op surgical pain in "small potatoes" in my book, but it can be hard to remember that in the moment sometimes.
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simplelife: Good to hear that its all finally over and the tumor is all dead and gone!!! Did they say anything about PCR yet?
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Simplelife, Hooray for drains being out! I hated my drains and they also hurt a lot!
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I haven't seen my breast surgeon yet or my MO.....only the plastic surgeon. I have appointments next Wednesday with the MO, breast surgeon and RO...busy day. I'll talk to my MO about the path results. I'm feeling much better about them now. I think the small amount of cancer remaining puts me in a catagory that is very close to getting a true pCR. I'll see what the MO says on Wed.
Now with the drains out, and pain levels managable, I'm trying to focus on gradually building up my exercise. I did 10 minutes today on the elliptical...slowly, but enough to get my heart rate up above 70% of max HR. It's a start.
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BanR - Your Onc's office probably weighs you at the beginning of each visit. Some chemotherapy doses are determined based on body surface area (BSA), which doctors calculate using your height and weight. Some chemotherapy drugs are administered based on a specific amount (dosage milligrams) determined by the type and extent of cancer. The NCCN guidelines will indicate what the recommended dosages are -- when you get to the Preferred Chemotherapy section, scroll down and it will show you the exact amount of dosing recommended.
I also went through the same thing as you and asked the same question. There should be a chart in your file that shows how much they administered and what your bsa was to arrive at that total if they used that in their configuration or an indication of the amount (dosage milligrams) that they used. I have a complete chart of mine and know exactly what dosage I had of each one each time. I can tell you that I gained 10 pounds from #1 to #4 and it did not change my dosage, and my doctor is extremely scientific. You can bet as well that yours has double checked the dosage at every single infusion to make sure you were receiving the appropriate dosing. This can also get technical as they will usually do a quick blood panel to get some other values to properly assess the dose.
I also noticed on the first one that a little fluid was left in the bag. I asked my mom about this (who is a retired nurse) and she told me not to worry, that they do overfill the bag to allow for air bubbles, drips, spillage and other unforeseen events - so to be confident that I had a full dose. There should be a chart in your file that shows how much they administered and what your bsa was to arrive at that total if they used that. I believe the BSA does not change that much when gaining 8 or 10 pounds in the overall change in body surface area.
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Greetings to all! I'm new to this forum and unfortunately I have to be here to support my mom who has tnbc and just started chemo today.
Got a few questions hope somebody can help.
Her tumor was 2.5cm and grade 3 (poorly differentiated) but luckily no lymph nodes were involved. The oncologist only considered 4AC (adriamycin+cytoxan) and 4TC (taxotere+cytoxan) and the latter was chosen for less side effects. Seems that many of you are doing AC+T or TAC, with some even having a dose-dense regimen. I'm worried that TC may not be strong enough for her.
So it has been hours since her first infusion. She has not experienced much side effects but the skin around her wounds (actually almost the whole breast) has become red. Anyone got similar rash?
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I did not. You should call her Oncologists office and ask. Do some research or get a second opinion if you question the oncologist. You should have faith in the Dr. and a great relationship, I think is important on this medical journey. I would be very hesitant to second guess a medical Dr. Sorry you have to be here but glad you found us.
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adi339 - I looked like a tomato after my #1 TAC. I was told it was a SE of the Adriamycin. It was not itchy or anything, just bright red. It went away within 2 days. #2 TAC it didn't happen, but I drank so much water that it isn't even funny to get all the drugs out of my system. Hope your mom has minimal SE and wish you both the best!
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I know it may vary a little for some of you. But, can anyone tell me in general when the Onc appointments go from every 3 months to every 6 months, etc?
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Adi,
Thanks for joining us! I just checked the NCCN guidelines and TC is a Preferred Chemo for the details you provided, when I followed the chart. I'm attaching the manual and instructions so you can view it as well.
Oncologists take many things into consideration when deciding the chemotherapy treatment, including: size of tumor, node status, whether a patient had lymphatic invasion, benefit to risk ratio, family history, age, overall health, etc. Some of the survivors you see on here with a different cocktail may have a different diagnosis and pathology result than your mother.
The doctor's statement about the CT having less side effects may be prompting you to think it is less effective. Interesting to note: it was AC that was removed from the list of "Preferred Regimens" for the 2013 NCCN guidelines (for this page of the manual: systemic treatment of tumor >1 cm, ductal, pT1, pT2, pT3 and pN0 or pN1mi) , and it was previously in the 2012 guidelines. TC remains in the the Preferred Chemotherapy list for the criteria mentioned in previous sentence. Adriamycin has risk to the heart, which could be what the doctor meant when he said side effects. Some heart effects of Adriamycin can be irreversible.
I'm attaching the NCCN guidelines for you and your mother to review. You can open it and find her exact situation and then see the cocktails that are listed under the Preferred Chemotherapy for her situation.
I read about another lady on the "Let's post our daily exercise thread" yesterday, who is the same diagnosis as your mom (in respect to the signature line) and she too was treated with CT. --------------------------------
Link to Download the: NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)® Breast Cancer
http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf 2013 edition - PDF 174 pages
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."
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The thing to remember is to have confidence in the Oncologist - they know exactly what they are doing and there are multiple things that go into assessing the chemo regimen. If you are not confident with the Oncologist, you can line up a 2nd opinion.
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ALHusband, we went in January to my Onc, (2 year anniversary) and my husband asked "Does she go to 6-month appointments now?" My Onc said, "Sure we can do that, she is doing excellent." Well, I picked up on the words "we can do that", LOL and I asked "what is protocol?" And he said "the first 3 years, quarterly appointments". Now, I'm not sure if that is his protocol or the facility or national. But he let me choose (we discussed it together though collectively), and I decided to stay on quarterly appointments. I like the extra validation that things are going well, and it holds me more accountable to ensuring I am checking in with him to report in on all my accomplishments. For me, I will be on quarterly appointments for this year. In addition to that, I have an U/S and MRI each year, with one of those being done every 6 months for some type of surveillance.
He did mention although risk has dropped, he mentioned that risk drops significantly more at 3 years.
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Thanks Inspired! I know we discussed this with Kathy's Onc...but quite frankly I forget what he said.
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I've seen someone post that at 1 year their Onc moved them to yearly! So it will vary amongst the doctors. I'll have to see what the NCCN Guidelines mention.
.... NCCN guidelines say history and physical exam every 4-6 months for 5 years, but does not reference specific Oncology visits.
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