TRIPLE POSITIVE GROUP
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Fluffqueen, so sorry you have to go through a biopsy. Praying the results are benign. Try not to worry too much, hugs0
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I am resigned at best. I think the location is too coincidental not to be something. So hoping for the best but planning for what I think the reality is going to be
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Well, fluff, I've always expected the worst, hoping for the best, which has sometimes meant being pleasantly surprised. Hope you are pleasantly surprised.
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Hapb, thanks for the food link. I like to read anything and everything I can about nutrition, especially if it can help keep my immune system strong. I think the chemicals in processed foods are the cause for many diseases; real food is the best. We all know this but why do we keep eating food that isn't good for us? It seems some of these chemicals may be addictive making it difficult to give them up. I know this to be true of sugar; give me one cookie or mini Snickers and next thing you know I eat 10.
Since losing 40 pounds after diagnosis and going through DIEP recon, I do find it easier to stick with the plant based diet. I feel like crap anytime I eat sweets, processed foods, dairy, meat, and gluten. My brain craves it but my body hates it! I'm not perfect but over time it does get easier, baby steps like Coach Vicky suggested is best.
I am a stress eater and go straight for the bad foods. I am learning to identify my triggers and when my brain says "go get a donut" I pause, ask why, and then redirect my thinking. Not easy to do, baby steps needed here too. My co-workers can often find me staring at the donuts someone brought in and saying "oh those look so good, just one please...nope I'm not going to do it!" lol
Some things I've done that really cut calories and helped the weight come off easily: I fast 14-16 hours every day and try to eat all my calories within a 6 hour period. Less time to eat means I consume fewer calories. My body got used to fasting pretty quickly; I rarely get hunger pangs before the 14 hour mark. I drink only water with lemons and green tea - no other beverages (except for the occasional glass of wine). I used to drink Coke Zero and fruit juices everyday. I eat a handful of roasted pepitas (pumpkin seeds) when I crave something salty. I switched to gluten pretzels or chips if I want something crunchy. I use only organic vinegars and evoo instead of bottled salad dressings. I stay away from sugar and gluten; I believe this is the key to keeping the pounds off.
I get creative with my veggies. My son is a chef so he has helped tremendously with teaching me how to get variety in my diet. I use fresh herbs and organic spices to add a lot of flavor to vegetables. I always have fresh cut veggies and hummus on hand. Fruit is a great substitute when I'm craving something sweet.
Eliminating dairy and meat has been easy for me; I get sick every time I eat either one. I still crave a good steak and pizza, I just don't have them very often.
As Coach Vicky said, we did it and so can you. You will feel better and over time you won't miss the naughty foods as much 😊
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Coachvicky- thanks for reminding us that over time we will feel better. Prior to my revision surgery 2 weeks ago, I was starting to get my energy back and while my body has changed so much physically, I did feel almost "normal" again. After surgery, I was a little frustrated that I'm once again unable to do much of anything while I wait for these latest incisions to heal. Your message reminds us there is light at the end of the tunnel. We will all get through this journey and someday soonwe'll be able to do the things we love!
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Fluffqueen,
I wanted to send you gentle hugs and to let you know I'm keeping you in my prayers. Take care.
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Hapb, saying extra prayers that your tests come back with good results. Think positive and feel better. hugs
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Dear Fluffqueen01, sending positive thoughts and hoping for a good outcome.
Deni1661 and Coachvicky, thanks for sharing your food plans. I need to take notes and get serious.
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Deni, thanks for sharing your weight loss success! That is fantastic. I hope to gain the will power you and Vicky share. Each day I start out trying really good, by night I am eating some form of junk. I guess 54 years of habit is hard to break.
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Best wishes for a perfect outcome, Fluff.
Vicky
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Fluff, I feel anxious for you, I wish that you didn't have to wait for the BX as waiting is the worst BUT that will give me extra days to pray for you. ((hugs))
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Denni, Which seasonings and herbs do you use most? Is your fasting mostly at nighttime (bed time and then 13 hrs?) Thank you!
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I am catching up reading all the posts.
fluffqueen01, I have been reading this thread from the beginning, somehow feel like I know you. Best of luck on your biopsy. I remember TonLee had swollen nodes on her neck few years ago and they turned out to be nothing. Positive vibes all the way to you
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fluff - if it is any consolation I had a bi-laterally abnormal PET last year after my BCI test showed high recurrence risk and low benefit from anti-hormonals beyond 5 years. I already had surgery scheduled with my PS the week following to swap my new left expander, and downsize my old right implant. During that surgery a 3cm suture granuloma was removed from the exact spot of my previous cancer - it looked like more cancer on that PET, but it was inflammatory response. I had several other areas that also lit up but were the same or similar issues. Hoping your situation is similar. Also, BTW, since we are five years out I confirmed a couple of months ago with my coordinator for the vaccine trial, and I did indeed receive the vaccine - so, yay!
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deny1661, please feel free to share any of your son's recipes or ideas for vegetarian meals. I eat meat and dairy products now while in treatment but I plan on switching to plant diet. We were eating a lot of vegetables even before, compared to a normal Swede we eat ten times more of onions for example and still I got this bc. SpecialK has great recipe for kale salad, it is on p. 1032 on So, what's for dinner thread. I tried it, tried some variations of it too, what can I say I like kale now, before I was just looking at it thinking well this is definitely looks like something for cattle, turns out it is eadible.
I will have my second EC on Monday, met my oncologist today and she said that my values were normal, wbc shots worked for me and she will prescribe stronger anti- nausea this time. I asked her whether I should skip the last EC because I am eager to resume Herceptin because DN Sara Tolaney's study latest results have been published and they are overall look good. My oncologist, who by the way, look like Dolly Parton minus hair, boobs and lips, like an ordinary personality Dolly Parton who became an oncologist, not that I dislike Dolly Parton, I do, after all she gave the world I will always love you. So my Dolly Parton looking oncologist, they are the same age too, said that nobody can know what is good exactly for me but Herceptin is not going anywhere but we will discuss it after the holidays before my third infusion. I like her a lot, somehow she makes seem everything around this bc doable and treatable without sitting there looking deep into my eyes telling me that I am going to be ok, like BS did during pathology report, because I did not belived her then, got hysterical, and she said ok I cannot reach to you wait here I want a psychiatrist to talk to you because if you are a danger to yourself we have to take you in. Just like that. So, my oncologist is not like that at all.
Otherwise I lost all my eyebrows and half of my lashes but got hair coming so I can no longer feel the scalp but it all will fall off again. And I got a huge sty in my eye again, antibiotics did not make any difference for five days but today it is getting better and hopefully it will resolve and will not turn into a cyst. EC first ten days is bad but maybe I will be ok before the NEw Year, otherwise my eldest will make Christmas dinner, at least parts of it, under my supervision. It will be just us and her boyfriend,
Cherry
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Cherry - your Dolly Parton looking oncologist rant absolutely cracks me up. Thanks! I needed a good laugh today!
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Anytime, Meommy65. You thought it was a rant? You have not seen me ranting)
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Rant - not in a negative way!
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HapB, this study for early stage Her 2 pos no nodal involvement bc that was conducted by Dana Farber, 406 participants, no control arm. BCO posted a link, someone posted it either here or in some of the other threads I am following but I think it was here, 6,5 years follow-up.
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hap/cherry - is this the one you are referring to? This is the 7 year follow up of the APT trial, from May of 2017:
http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.511#affiliationsContainer
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Thank you SpecialK, this is it!
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hap - there is no way to prove what causes what in trial subjects - they are of all ages and states of general health. If Herceptin causes congestive heart failure, that is usually reversible, how would they prove that the Herceptin caused fatal CHF if the person had pre-existing risk factors and may have developed CHF without Herceptin. Because breast cancer is most common in post-menopausal women over 65, it also coincides with risk for heart disease in women. Menopause significantly raises heart disease risk, and more than 75% of women ages 40-60 have at least one risk factor for developing heart disease. 8 deaths in a population of 410 subjects is not a large number, if you took any 410 people you might find a similar number of deaths over time. If you look at the study itself, not this update, you will see that several of the patients who died had other types of primary cancers, one had a stroke, one had ovarian cancer, and 4 developed metastatic breast cancer. Only two patients out of the total number of participants had LVEF that did not normalize.
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thanks for all the kind words everyone. If you have read from the start, you will know I am NEVER on the right side of the odds.
And it’s kind of surreal as my dad was diagnosed with duodenal cancer right about this time when I was 29. My grandmother passed away in December ten days before I was born.
My own diagnosis was going on at this time.
Crazy. You would think I would hate this month.
My second oncologist retired this summer due to an inherited eye disease that was causing him to be unable to drive. My first one (whom I worshipped) passed away suddenly from a weird heart thing.
I made an appointment with a person in his office for January 3. She has my records. I’m thinking I should mention that I seem to curse my oncologists lol.
I wasn’t due to see a doc until next July but I just have a gut feeling that this biopsy isn’t going to come back with good news. So I am getting the ball rolling.
Special k, good news! I got the vaccine too, but I think your version has more benefit than the version I received.
Not looking forward to the needle thing either. I don’t think they numb you up. My doc prescribed a Valium after I freaked out a little over tha
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hap - fluff and I enrolled in a Her2+ recurrence prevention trial that involved two vaccines - AE37 and GP2, and patients were sorted to receive one or the other based on tissue typing - nothing to do with breast cancer, but the type used for organ transplants. This had to do with vaccine binding. Fluff was about 6 weeks ahead of me, I believe and did the trial at Wake Forest and received the other vaccine. It was not shown to provide as much of a preventive advantage - the vaccine group and control group had essentially the same results. I participated up at Johns Hopkins satellite location in Washington, D.C. Here is the info regarding the vaccine I received, I am one of the 89 mentioned in the first paragraph:
Phase II Study
The findings are the result of a phase II randomized trial that paired the GP2 vaccine, designed to stimulate the CD8-positive cells, with an immune stimulant known as granulocyte-macrophage colony-stimulating factor (GM-CSF, Leukine). The trial included 190 patients with varying levels of HER2; 89 women received the GP2 vaccine with a GM-CSF adjuvant and a control group of 91 patients received GM-CSF alone. Eight patients experienced early recurrence or developed a second malignancy and did not complete the vaccine trial.
The vaccine is injected subcutaneously and the initial series consisted of monthly inoculations for 6 months, followed by four cycles of booster shots administered every 6 months thereafter. The patients were monitored for nearly 3 years.
For all 190 patients, including those who did not complete the trial, the disease-free survival rate was 88% among those who received the vaccine and 81% in the control group, a 37% reduction in recurrence. After excluding the patients who did not complete the vaccine series, the disease-free survival rates were higher: 94% vs 85% who did not receive GP2, a 57% risk reduction.
Women with HER2 +3 who were administered trastuzumab 1as part of the standard of care prior to receiving the vaccine experienced no cases of cancer recurrence. According to Dr. Mittendorf, trastuzumab may act like a primer for the vaccine. Trastuzumab stimulates CD4-positive T cells to release substances that fight cancer cells and initiates an antibody response. Thus, it may prepare the immune system, making the vaccine even more effective. Researchers at MD Anderson are now testing this combination of immunotherapies in other clinical trials.
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fluffqueen, I remember you had troubles with Herceptin, I guess, and that you and I had similar stats but not that you were being on the wrong side of the odds, I am still reading the thread when I have time, am on p.235 I think, lot of valuable info there that all you people shared with each other. I think when you get bc you are pretty much consider yourself being on the wrong side of the odds. I am sorry about your oncologists, mine is great too but when I am telling people at the clinic who is my doctor everybody asking me whether she gets retired soon, she is an elderly lady and even if one can work in Sweden until 68, retirement age being 65, I know that soon I will have to select a new oncologist. You have received the vaccine too, I really hope this is not related. Although I am following a blog, a lady who got hormonal bc in 2013, she had two years later one enlarged lymph node on her neck, they did biopsy and MRI, it was bc but only found there, they took it away and since that she did not have any problems.
I will be thinking of you on Monday, let us hope for the best, hugs,Cherry
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SpecialK, thanks for the information on the vaccine. Glad to hear it's still being tried. I hope you are on the mend and feeling better.
fluffqueen01, you are in my thoughts. Yes, lots of lidocaine and something to take the edge off followed by a good pathology are on order are called for.
I had my next to last Herceptin this week. One more to go. It feels rather anti-climatic. It's good to know it's nearly over and as I think back on the year, I never thought about getting this far. I focused on each step and side effects and just keeping going. Now that I am near the end, not having that constant monitoring and checking in every three weeks makes me a little nervous.
Anyway, I thank everyone here for listening as I would not have gotten this far without the support found here on the triple positive board. It is a special place
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Suburbs ... It is a little scary not being checked so often.
Then one day you will realize it has been weeks since you got poked, tested, or saw someone medical and you haven't even thought about it. That will be a great day!
Congratulations for getting to the end. You have done well through this and helped others along the way.
Vicky
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Thank you Coachvicky. When I started this adventure, I thought of cancer like a broken leg. It will mend and I will go back to being me. That's never going to happen. If I knew then what I know know, the road would have been more difficult. Starting on the work of finding that new normal.0
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Suburbs...
Such truth you write!
I, too, did not know the woman I would be on the other side of journey. I am thrilled at my happiest as well as the perky girls I got.
I was texting my Surgeon today. I am alive to have this Christmas because of his tenacity to look for the missing marker in my first lumpectomy.. I thanked him again.
Vicky
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I’ve done that a bunch Coach. It took three biopsies to find it but she pursued
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