TRIPLE POSITIVE GROUP

Magari

Hi, all. It's been a busy few days since I last checked in!

I had my "nadir visit" for lab work on Thursday and everything checked out fine. My WBC count was actually elevated, but the PA said that was probably due to the Neulasta. So my MO is going to evaluate whether I need to have it after my next infusion.

Re mouth sores: The PA told me that "magic mouthwash" is mainly about the lidocaine. In other words, it's to treat pain; doesn't really do anything to prevent/heal them. He said to continue the mouth rinses with salt and baking soda and Biotene to ward them off. I had tingling for the first week post-infusion, but nothing more serious developed and it's pretty much gone this week.

Tresjoli2

Bj I shaved my hair at the end of chemo. I hung in there til week 12 and I looked like a troll doll chewed on by a dog :-( I wish I had shaved my head sooner, so bravo to u.

Also I couldn't taste much...it was pretty bad with the taste thing. My MO was fascinated by this symptom, because apparently it doesn't happen to everyone. Danna you'll be happy to know thst very quickly after chemo ended that lack of taste and awful feeling tongue cleared right up!

Just a loving word of caution about food. I was craving carbs all the time during treatment. I ended up gaining 40 lbs during treatment and shortly thereafter. I'm NOT saying this will happen to anyone else. But it happened to me, and I'm 2 years out now and I haven't managed to lose it. So just be mindful of portion sizes.

Love to all of you here. I would be so lost and feel so alone if it weren't for this group. You all get me!

Tresjoli2

oh BJ forgot to mention. My acne was also terrible. I went to a dermatologist and got retin A. It's apparently not usually covered for adults. But my derm wrote a note to the insurance company. It's from all the steroids. Retin a worked awesome! Hugs!

KimCee

Tres...the weight! I am also eating everything in site and carbs and junk food is high on the list. I was always skinny, all my life, no watching what I eat, no working out. Two years ago I had a hysterectomy, gained 40 lbs and finally lost 15. Well gained that back quick.

So...are you trying to lose weight? If so, what are you doing to try? This message really freaked me out. We are robbed of so much with this disease and then we have to add this issue.

I guess I just need to sew my mouth shut 🤐.

KimCee

Hap, I looked at the link you posted. It was great, thank you. I am really going to work on this situation. I feel fine during treatment, it is the tire around my waist that I can not deal with.

KimCee

Hap, I am single too. Not many want to eat the way you are now eating, I do get that. And junk food has always been a big part of my life. I actually eat healthy, lots of organic, fruit, smoothies, lean protein. But ice cream, cake, cookies, chips...gotta stop.

rljes

Hi all - No rash for me on Chemo Day 1 of Infusion.  Lucky me.  And I LOVE the steroids.  I have chronic Fatigue and the steroids gave me so much energy it was a beautiful thing. Made me feel good.  And since I never sleep thru the night anyway, no big deal.  In Fact, I have plans to go shopping the day before Chemo #2 because I'll be on steroids again. 

I was diligent with the baking soda/salt & Biotene several times a day since Day #1 - no issues till about day #6 or 7.  It was really Bad. Magic Mouthwash is the best.  Expensive (Insurance paid partial) but so worth it. 

Bennienin - I've never had mouth sores in my life.  So I'm chalking them up to Chemo. 

Have a good weekend!  It snowed a little here in the Midwest. Yeah! 

KimCee

Hap...that all sounds awesome. I am going to check recipes for the sorbet. Open the restaurant, I will eat there for sure.

rj..sorry about the mouth sores. I never had them either but got a few round 2 Taxol. I did baking soda and salt and they were gone the next day. Praying you don't get any more.

Tresjoli2

not trying to scare you kim...it was just a watch out from my personal experience. I'm on metformin off label.for weight loss. Can't take anything else because it interferes with my tamoxifen...I have not been really trying as of late. My job moved 50 miles from its current location and i have two small kids...but I am looking to get myself exercising and kicking my diet Pepsi habit in the New Year. I never had a weight problem my whole life...then two miscarriages cancer and forced menopause at 40 kicked my butt...

coachvicky

About weight gain... I am down 53 to 55 pounds since 1 January 2016 and diagnosis in June 2016. I joke that some of the weight was cut off, LOL.

Here is what I discovered and did:

I was a Splenda junkie. Cup after cup of coffee I poured packets into. I started cutting the amount in half until I was down to 1/2 packet and then it was easy to stop. I bought better coffee which also helped. Today, I occasionally bake with Splenda but that is seldom. I seldom drink soda anymore. Once off the Splenda, I no longer have that craving.

I found that even low fat milk put weight on me. My dairy now comes from limited cheeses.

Carbs ... I am low carbs. Why? I am a carb-a-holic. If it is white, it is off my plate (white bread, white potatoes, white rice, pasta, grits, oatmeal, cereals). I still eat chips but they are gluten free chips. Yes, they have carbs but the body reacts differently to the lack of gluten. Give me one Dorito and the whole bag is gone. A serving of gluten free chips is 14 chips. I can not get eat that many gluten free chips ... Maybe 5 or 6.

I think one reasonI have little joint pain with Arimidex is that I have reduced gluten in my diet.

When I get nauseated, my go to food is a Banquet double crusted chicken pot pie. My Mother made them for me when I woukd be sick as a child. My DH makes them just like Mother ... Slightly over done on the top rim crust with lots of butter. I still ate these during treatment when I was nauseated.

My goal was to weight 130 when I got my implants (January 2017). I made that goal. April 2017 Arimidex was brutal with my weigt. When I got the brand name in August the weight yo yo went away. Since January, I took off the rest of the weight.

So, it took well over a year to get to where I am today. I had a lot of support from family and friends. My DH took off 85 pounds. Frankly, we were a fat couple. In some sense, my cancer probably saved us from heart attacks and diabetes.

I hope this is helpful. I think we were successful because we took baby steps in this approach. It wasn't clear the pantry and boom a new diet. It was slow and steady. Today, we eat real foods and very little process foods.

As for eating out ... We are visiting my Brother and he took us out to eat last night. I had a salad, broccoli, and a steak. I asked for no salt on my broccoli or steak but other seasonings were ok. I still swell and take a diurecticso I limit my salt intake.

Best wishes to everyone facing weight gain. If we could do it, I know that you can!

Vicky

T-Sue

Great resource Hap, thanks for sharing. I am also transitioning to a mostly plant-based diet. I have found the most useful resource to be Mark Bittman's book "Vegan before 6:00." It works for me to think of two meals a day as vegan with lean protein as acceptable at one meal (usually dinner for me). This has challenged me to transition my lunch, then breakfast, then snacks to more plant-based. Limiting cheese and dairy has been the hardest for me, but I know I can have some at one meal. Let me know if any of you check out the book. I'd love to hear your thoughts.

Also, where is Cherry? I hope she is ok, I think she is in the midst of second round of harsher chemo drugs. Sending good thoughts her way!

KimCee

Thanks Vicky...you rock! I will do the baby step version. Can not give up oatmeal or cheese, but the rest I can do. Hap guilted me into "no more Diet Coke ". That is my addiction too.

T-Sue...I definitely will get that book. I think I can handle that too. Thank you for posting that.

Anyone try slim fast? Or is that bad too? I never had to diet before so I am unsure. Weighing 138, need to get back to 115.

On another note. How on earth did you all survive tissue expander? I am no wuss, these are barbaric. I am uncomfortable all the time. Had three fills, am at 330 cc and I quit. Feel like my chest is going to rip open. If I knew two months ago what I know now.

KimCee

Thanks Hap, I was just making a joke...I know Diet Coke is terrible and all chemicals. Ok, I have to try to do it the old fashioned way.

Regarding migraines, KB, I agree on that. Had a neurologist working on my migraines for a few years. Had me taking medicine that didn't work. Cut out a lot of chemical laden things, cut out anything containing nitrates. Stopped the meds, my migraines are much better. Adequate sleep is key too.

rljes

Hi All 

Mouth Sores - I just want to mention that All "Magic Mouth Washes" are not alike. Its according to what the MO instructs the pharmacy to create.  My sores kept getting worse and worse. I couldn't talk or eat. I was diligent with baking soda/salt & Biotene since day 1 - several times a day, even in the middle of the night. Nothing helped. I had open sores on my lips and inside my mouth.  My "Magic Mouth Wash" included Lidocain and Antibiotics (and other things to promote healing).  Within 24 hours I had relief.  It was not going way on its own with baking soda and salt.   Now that my mouth sores are completely gone - I am continuing the original regiment. 

HapB - Thanks for the Kale ideas!  I eat Junk.  And really need to try to start eating a little better.  Ease into it.  I have started baking zucchini, squash and Sweet Potatoes with a little Olive oil and pepper.  Yummy.  Next time I go to the store I will try the Kale Chips.  I would go to your restaurant too! 

Interesting that you mentioned the fillers (artificial sweetners)  in Pills (like Tylenol). I've been saying that for years. I would be taking a medication, and the pharmaceutical Co would change the pill, and i would feel different.  My Doctor thought I was crazy.  I kept telling her (the Dr) that there has to be something in the pill that is making me feel different. Ah Ha! 

Anonymous

Well I️am back st it again I think. Noticed a lump on my collarbone/neck. Had a ultrasound, results came back today for a indeterminate solid nodule. Biopsy is Monday.

I feel exactly like I did last time when they couldn't find anything...I knew it would be found.

ElaineTherese

Oh fluffqueen01.

I'm sorry to hear that you'll have to go in for a biopsy on Monday. How nerve-wracking! Hoping it's benign.

KimCee

Fluff...sending up prayers for you. Hoping to hear that it is benign. Sending hugs too.

SpecialK

fluff - crap...keep us posted

deni1661

Fluffqueen, so sorry you have to go through a biopsy. Praying the results are benign. Try not to worry too much, hugs

Anonymous

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

ElaineTherese

Well, fluff, I've always expected the worst, hoping for the best, which has sometimes meant being pleasantly surprised. Hope you are pleasantly surprised.

deni1661

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 😊

deni1661

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!

Tess111

Fluffqueen,

I wanted to send you gentle hugs and to let you know I'm keeping you in my prayers. Take care.

deni1661

Hapb, saying extra prayers that your tests come back with good results. Think positive and feel better. hugs

Suburbs

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.

KimCee

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.

coachvicky

Best wishes for a perfect outcome, Fluff.

Vicky

moodyblues

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))

moodyblues

Denni, Which seasonings and herbs do you use most? Is your fasting mostly at nighttime (bed time and then 13 hrs?) Thank you!