TRIPLE POSITIVE GROUP
Comments
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Meowmmy65,
I had a rash immediately after my first infusion. Called my Oncologist and got an Rx. Cleared up within hours.
Vicky
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Happy Friday Everyone!
Well ... this getting back my strength and feeling better continues. If you don't know my last treatment was mid August.
I polished my copper bottom pans last week. First time since diagnosis in June 2016.
As I think about this getting better ... I somewhat miss those days of no energy and not caring how things looked! LOL.
Love to all of you.
Vicky
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Thanks Vicky! Just noticed swelling where my neck and shoulder meets above the port, and the red flushing is stronger again, and my face/neck feels warm. Called the on-call number. Waiting for the onc to call me back. No fever, and probably nothing, but they stressed CALL, so I did!
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Meow: Did you take dexamethasone? I took it the day before and the day after my infusion and was given IV dexamethasone during my infusion. I believe it's a steroid. I was warned that I may turn red like a lobster from the chest up. And I did turn red. It lasted a few days.
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Yup. Took the steroids. Just had my last dose. Doc said probably a mild allergic reaction to herceptin. Took benadryl. Watching for other symptoms. This should resolve.
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Oh the lobster look...so fun. The worst part of the steroid is my man sized hunger and total lack of sleep for two days. It will end when Taxol ends...thank goodness.
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Coach Vicky, your pots look fabulous! What did you use to clean them with?
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I had a rush after my first infusion for 1 week
My doc told me it was perjecta
Thanks god I had it only after my first infusion
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Cow Girl
Are used bartenders friend. My husband got it at Home Depot.
A friend told me about it and I had no idea it was that good. You can use it on the copper bottom and the stainless!
Best wishes when you feel so well to do this. Frankly, when my oncology team told me I would begin to feel better by December I didn't believe them. I have loved reconnecting with my home.
I hope these postings inspire others to know that life does get better. When I was in the middle of treatment I only wanted someone to tell me it would get better.
Love, Vicky
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I definitely got the steroid flush - cheeks looked sunburned and sometimes my upper chest and neck. It went away on its own after 24-48 hours, but an allergic reaction can look similar, so it is good to let your onc know.
coach - I use Bartender's Friend on my stainless that is in my outdoor kitchen - it does the job! Are those Revere pots and pans? We spent 4 years in Rome, NY at Griffiss AFB - both of my kids were born there, and it was the home of Revere manufacturing.
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I wasnt worried about the redness. The education session covered that. It was the pouch of swelling at the base of my neck on the port side that prompted my call. No pain or fever, but definitely fluid filled. That was weird. They really stressed calling them sooner rather than later, so I took them at their word! Benadryl has helped. Feeling lucky so far... Nothing I can't deal with. I know more side effects are coming, but I remain cautiously optimistic.
Awake at three am to pee. I need to drink all my water earlier in the day. Hopefully,. I can get back to sleep now!
Thanks all!
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Yes, Special K, that is Revereware. Some were my Mother's and over 50 years old. Still on great shape.
Vicky
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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.
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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!
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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!
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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 🤐.
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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.
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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.
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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!
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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.
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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...
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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
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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!
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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.
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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.
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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!
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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.
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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.
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Fluff...sending up prayers for you. Hoping to hear that it is benign. Sending hugs too.
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fluff - crap...keep us posted
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