TRIPLE POSITIVE GROUP
Comments
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Pbrain,
WW will help you lose weight. Cancer just enhances those efforts. You say "oddly" successful....so even before cancer dx you may have recognized it was a little easier to lose weight than ever before?
That's kinda how it happened with me. Barring pregnancy, I've always stayed within a few pounds of where I was at graduation from high school 115-118. (Except when the thyroid stopped working ...but once I discovered it, started treating for it, back to high school grad weight.)
Anyway, in the past, no matter how hard I tried....no matter how much working out, or dieting, I couldn't get 10 pounds below that weight, or even 8 (108-110) and have enough strength to stand...heh. So trying my very hardest I could get down to 112 pounds but I just hit a plateau. Nothing ever below that, no matter how many calories I cut, no matter how much exercise I did. (And I didn't try a lot, just occasionally I'd think...hmmm, wonder if I could get to 110...and then try)
Pre-dx I was super busy but working out as normal, keeping a food log as normal....my clothes were feeling a bit loose, but I had really heavy bad periods and attributed it mostly to that, but I hadn't weighed myself for a long time...maybe 6 months....I figured I wasn't gaining, so it was all good.
Hopped on the scale one day and BAM! 108! I couldn't believe it. Fist pump!!
I went to the gym the next day and used the scale there because I thought mine might be broken, or in need of calibration. It said 105!! Double fist pump!!
While I whooped it up, there was a part of me that thought...WHAT? How did that happen? I've never been able to get to 105! Not as an adult....
I'm happy at 115-118 (I'm 5'4") now, though during chemo with all the fluid retention the scale occasionally tipped at 125-128!! Thank goodness that all melted away within a couple weeks afterward.
All that to say, I was "doing the right things" and the cancer just accommodated my actions for burning fat. That may have also been why you dropped such a significant amount in such a short period of time.
Edited to add: Another clue should have been the every day people in my life noticing the weight loss. Since I wasn't trying to lose, I shoulda have clued in on the fact that several times a day someone would ask me how much weight I lost or what was I doing to have such success? I just thought they were being complimentary!
My husband at the time though mentioned he thought I had lost some muscle definition in my back and butt. I was offended! lol
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Omaz, after spending 3.5 hours in the breast surgeon's office this morning and changing plastic surgeon's midstream in that same 3.5 hour period I had to go back and watch the baby steps scene. Link:
http://www.youtube.com/watch?v=ncFCdCjBqcEI think I made the staff kind of nervous showing up without an appointment and then waiting until I had some kind of resolution. When I got there at 7:30am it was too early, due to a timer issue, for the elevator to go all the way up to the 4th floor (there's a cliche in there somewhere) so even the elevator scene in What About Bob is timely.
I'm wondering if anyone else has had to wade through what feels like weird undercurrents when it comes to these doctor liaisons. I'm hoping this situation will turn out okay and I'm really hoping those were eggshells I was walking on (versus landmines).
TonLee, very interesting perspective on the weight loss/cancer burning calories phenomenon. You mentioned looking fragile in a photo and it reminded me of something my son said after seeing me with just a few months between visits (I was still dieting/changing my eating habits). He's a big body builder type, 6'2" and I always look short in comparison to him but during this one visit he put his hands on my hips and said "mom, I've just never thought of you as being petite before" (ha! Truer words were never spoken - other than during a time when he was very young and he wouldn't have remembered it). The other day PS#1 said "you have a somewhat broad chest wall but you are small elsewhere" (well, I'm not small but one thing's for certain, my body has really changed and now I'm starting to wonder how much of it was this tumor having its way with my metabolism). Oh well. I'm probably like the people in that oldish movie with Robin Williams (Awakenings?). I got to have about about a year of feeling thinner/healthier (because I really have felt great). There was another much older movie called Charley - about a man who took an experimental drug and became a genius for a short period of time. (I don't know what's with me and all these movie references! I've only seen two movies in the last year and that was the same movie twice!)
ang7894, my mom is a 2 (closer to 3) pack a day smoker and I'm the one who got cancer. I guess this beast (as I've seen it referred to) is, for the most part, a hit and run random lurker (*shakes fist*)
kayb, after searching the archives here last night I've gotten the impression Dr. Slamon only does consults one day a month but even that would be worth it, given the proximity (we live about 20-25 miles from his office).
Jennt28, re: there was quite a long period of time when I could no longer lose weight like I had been able to do when I was younger. I'm thinking it started during perimenopause and I know it persisted for several years after having my last period. It was very frustrating. Thinking back over the years (decades!) I must have always been estrogen dominant because I remember my ob/gyn calling in Provera (when I was in my mid-to late twenties) to try to get my period to start (I have no idea if that kind of thing is even down these days). In fact, I had taken Provera without knowing I was pregnant (the IUD slipped) and I was scared to death about fetal damage. Hormones. Grrrrrr.
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Lee,
Doesn't really matter now HOW you lost it. You lost it. So now all you have to do is maintain the loss.
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Hello ladies: I had my 2 nd infusion today with my new port for the first time, I had no problems at all. No immediate side effects for frequent urination like I had last time. Chemo doesn't kick in for a few days for me. So all in all everything was perfect today. Just wanted to share the good news. Hugs to everyone!!!!!!!
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Caylee, that's great news!!! I have no idea what this all feels like (yet) but the one thing I've tried to focus on since first feeling this lump is good news - even if it raises eyebrows. Since finding the lump (but before knowing it was cancer) I had a week wherein TWO teeth cracked. I went to the dentist and he said you're going to need this and this and blah blah blah and I said "but will I need any root canals?" His answer was "no" and I said "this is all great news" (he looked at me like I should be caged but I was thrilled!).
TonLee, re: keeping it off - I keep thinking about what you wrote in one of your posts regarding working out, i.e. so the lymphatic system can keep moving and keep the chemo meds moving (I even relayed it to my husband last night). I really hope I'll have the mental fortitude/energy to do it. I guess I'll just have to force myself but it sure was a lot easier to be motivated at 34 than it is at 54. I'm going to have to employ my dad's old saying (he was a football coach): "you gotta wanna."
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Caylee- just got home from tx. Feeling great. Steroided up. Lol! Trying to catch up. Will write more later. You look fabulous too!
Second tx over with. Just got home.
Jenn- thanks so much. I'm loving the hair. I will try playing with it tomorrow. Short hair may stay after!
Kayb- thanks so much. And the lint roller is out and rolling! Lol!
TonLee- so far so good on the mag ox. :-)
So, weight wise- went into first tx at I believe 146.6; dropped down to 140 last chemo, started protein loading (ok, and Doritos) and today up to 148.5. I really don't want to go over 150. Have to go back and catch up on posts.0 -
LeeA...
None of us will ever know the real cause of our cancer but Depo provera use is considered b a risk factor.......0 -
Lee,
I won't sugar coat it. Some days you won't feel like doing any sort of physical activity. I had to make myself do it. I said to myself...ok 30 minutes on the cross trainer and I won't worry about cleaning the house! lol Some days I literally had to pull myself up on it because I didn't have the energy to just hop up.
But every single time (except maybe twice) working out, getting the heart rate up, gave me MORE energy for the rest of the day....and except for those two times (when I over did it) I always felt SE from chemo lessen.....for me it was like taking a pill that lessened all the SEs I was feeling that day by about 60%. Granted, by nightfall they were back...but those few hours between? GOLDEN!
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Ms Tori,
Glad to read it! Keep it up and lots of fluids!
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TonLee- thanks so much! Just catching up on posts. I am going to try my darndest to get out and walk. Also, I was losing weight before my diagnosis and no diet or exercise changes. Just worked way to many hours and always on my feet running (nurse). I would come home and plant my butt on the couch, and had little energy at night and even on days off. Stress was through the roof for me because of work. I would skip meals during day. :-( I know, bad. Lets see, had the depo shot in my 20's. my aunt was dx 3 months before me. I believe she's triple neg tho. All sorts of things to come into play.
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Oh! And after my chemo, they ran in an extra 400ml NS. They said next time they could give me a liter with my drugs. But have had a total of 2300 ml today.
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Thanks, MsTori, I had so many problems with the steroids, so my oc cut it back to half a dose, I didn't sleep the first go round for 3 days, so tonight I was told to take 2 sleeping pills so I can have a good sleep. Had many side effects from the steroid the first go round, so I am hoping by cutting it in half that I won't experience what I did before. Really looking forward to your further posts when u are able, glad everything went well for u today. Luv Caylee
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Thanks Sol, I guess they don't want to waste the bucks on the OncoDx test for me, but they did do it on my boss who was her2+ and told her without the her2 receptors, she was low risk. But I can see how that really means not much more than a few hills of beans.
So what is with green tea everyone? I'm confused. I actually have (believe it or not) a sun tea pitcher from the 70's that I bought on eBay about 2 years ago and I brew caffinated (it's cheaper than decaf) green tea in it daily and drink it by the ton. Is this not so smart? I was kind of thinking when I found the lump that I had been doing way more caffinated consumption than usual over the past few years....
Oh, and thanks Sol for supporting me on the TCH. I was so shocked when my oncologist said he didn't know what to do and I said "hey, let's do this" and he said "OK". He's one of the top medical oncologists in Indiana, and I think he liked my reasoning! funny, little ole me....telling him what I wanted...and I'm still slightly clueless, but I'm getting there.
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Oh, and Ms Tori, holy mother of pearl. Do they give you a few chances to pee during chemo? I think I would just about die with 2300 mLs...my pipes are, um, not what they used to be. Har!
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sorry I was MIA. This was dropped from my favs again. Not sure how long its going to take me to get through 4 pages!
Caylee I feel great. I celebrated 2 years NED (date of BMX) August 31st. Ironically this was my first Strides Against Breast Cancer walk on Oct 20th… 2 years to the day was the day my hair started to fall out from chemo. I "feel so different now"… in a good way. So glad you enjoyed the music. It time you will feel more like Mandinka or linky < Posted that after my exchanged. Last Herceptin was over a year ago Sept. 2011. Seems more like years.
We love clean paths!
Yay Rozem
Pbrain My tumor was 6-6.5 with non invasive. 5.5cm invasive only. My onc prefers TCH but I know that many of the top places (like Sloan, Farber) seem to go with the AC-TH. Both work. Both have risks. My onc is well known for her work on HER2+ and Herceptin. I know that if I were having really bad issues with T I would have had to do A.
{{{Waves welcome}}} at Katharine
Lee I too ended up with an out of network PS because my BS only worked with 2 and the other PS scared the shit out of me. (After that visit I almost didn't do recon). See if your PS will work with you. I know mine discounted. Still cost more than in network but still every doable. Also if money still wont work. You can always switch to another PS after the expanders are placed. But I was told upfront by the PS before I even saw them they were out of network. They asked for my insurance so when I got there they told me approximately how much my insurance would cover… so no surprises.
Tomorrow I got to the Illinois Ladies (different thread) Holiday Party. Can't wait.
Port is definitely coming out this Wednesday, finally.
Bad news… my insurance ended it's contract with my treatment center/hospital. All my doctors including my PCP are out of network as of Jan 1. Aetna didn't even tell us. The hospital did. My husband let his company know… because they also hadn't been notified. Right now they are looking at options. I really hope his company can come up with another provider. This made me terrible upset today.
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ashla - re: provera - I wonder if that's what I was given all those years ago. This would have been in the mid to late eighties. I also took Solvay's prometrium (I think that was the brand name) for about three months in 2009 - something I completely forgot about until I found the empty bottle when I was cleaning out a drawer a few months ago.
TonLee - I typically walk the outdoor track at the gym. It's completely flat and the view alone can put me in a better mood. That's what I plan to continue doing because going inside really makes me claustrophobic (weird, I know, but reminds me of my OCD step aerobics days back in the 80s/90s). When I'm outside I just feel better overall (unless it's during the winter rainy season). In the course of the first 35 pages I've read of this thread I've been inspired by your dedication to working out throughout this. I read somewhere that the American Cancer Society recommends at least 4 hours of exercise per week. This week I've not kept up with that but last week I exceeded it. The snags along the way can really throw me for a loop these days (i.e. finding out about the HER+ thing and the plastic surgeon confusion).
soltantio - I need to look at the pathology report again. I haven't even talked to an oncologist yet. I hope I'm not doing all this backwards but right now I guess the primary concern is getting the tumor out. I'm going to send you a PM later this evening (I'm sort of eating dinner and responding/reading right now). I'm very curious about the cold caps and also curious about any suggestions/thoughts you might have regarding oncologists. My BS has mentioned the oncologist he has in his practice/center but I'm just not sure I want to keep going downtown for everything - especially chemo. I just looked at the pathology report and it shows Estrogen 62 (intensity 2). Progesterone 7 (intensity 2) Her-2neu=3.
lago - I met with the other plastic surgeon today and I think I'm okay with him. Before he came in the room the nurse practitioner gave me this meaningful look and said "I just want to tell you that I have seen more breasts than you can imagine - from Santa Monica to downtown (lol - that's my lol) and Dr. X does beautiful work. I love him. I want to send my sister to him." She was still talking about him after he had come in and started talking to me. FWIW - she (the NP) acted rather aloof when the other PS was in the room the other day but the vibe was completely different today so I guess I'm going with him. Years ago when I had rhinoplasty surgery I researched the plastic surgeons for weeks. This is all so surreal . . . I never had any intention of having any additional plastic surgery and never thought about breast augmentation of any kind - so the idea that I'm being so offhand (?) about the plastic surgeon part of this is kind of surprising but it's just so complicated, i.e. finding someone who has hospital privileges at the same place where the BS has privileges, finding someone who can do it the same day (I'm so relieved this guy was able to clear his schedule). I'm glad you were told your PS was out of network up front. This part of it all is kind of bothering me but I've got to just let it go and hope these two doctors work well together (they used to work in the same OR all the time at USC).
Editing to add: In another lifetime, lago, I might have been in the same ladies group. I grew up in a suburb of Chicago. Sometimes I wonder "did California cause cancer" - LOL - I'm kidding (SORT OF!). I should make a list of all the things I've thought might have caused cancer and post it here. It might be good for a few laughs. I'm guessing many of them might have been mentioned along the way on this thread but I just may have a few that would add a brand new and weird twist to the "what caused this cancer" subject. (I KNOW, I KNOW - I WILL NEVER KNOW!
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Also, great news about the port! I've seen photos of it in the early days of this thread.
But sorry to hear about the Aetna thing. I hope they can get something worked out!
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Yay lago - finally getting deported!
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soltantio - have a great time in San Diego. I'm encouraged by the fact you even feel like going anywhere!
Re: the mastectomy - it has to be a mastectomy on the left side and if one has to go then I'd rather do the other one as well. If a lumpectomy had been possible I might have considered it but it's just over the limit. Or maybe it has something to do with the position? I know they will never feel real (?) again but I have ptosis and although I can still prop them up in a bathing suit top they're pretty pathetic as it is - and that was before one of them started looking like a dented tin can. I developed early (third grade or so) and lol at "developed" - I don't even know if they still call it that anymore! Anyway, I'm really laughing out loud now because I used the expression "two fried eggs hanging on a nail" today with the plastic surgeon! I hadn't told my husband that part until just now as I was writing this post. I really wish I could have walked that one back after saying it but now it's out there in the ether.
Again, have fun!
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Wow, that's great news (final chemo)! I just looked at your chemo start date and realized it was the day before my fateful mammogram/ultrasound. And your diagnosis was just about three weeks after I first noticed something odd about my left breast.
Here I go again, trying to connect dots but did you ever think about a possible Fukushima connection? When I first looked at your diagnosis date the other day I thought about it. The only reason I bring it up is because the Wednesday after the Fukushima earthquake I went out looking for a particular piece of furniture and went from place to place in the drizzling rain. I didn't take an umbrella with me and I don't even think I was wearing a jacket with a hood. The very next day I had the strangest sore throat. I used to always get strep throat but this felt much different. It lingered for about a week or longer - very low grade - but it felt as if my body was really trying to fight something off and my typical Oil of Oregano remedy didn't even touch it.
That week they gave reports of the first plume getting to the west coast by Friday. I was out in the rain on Wednesday (two days prior) but a few months later I read that the first plume was already in the air that Wednesday. The only reason I remembered it was because I felt so odd after being out that day.
Fukushima is just one in a long list of "what ifs" that even includes Diet Mountain Dew - oh, and lead paint (I was stripping lead paint in March/April 2012). What really needs to be stripped are the brain cells that won't let go of this "what caused this" loop in my brain!
Good idea about being the keeper of the keys. Maybe you can take a little pillow along with you as well! Are you allowed to take B12 during chemo? Two B12s from Costco under the tongue always seems to give me more energy.
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soltantio -
Re: position - my little enemy is attached to the left side of my areola. I knew from the beginning that my nipple was going to be a goner. Its official position is 2:00 and I have a 3:00 shadow in the form of a bruised looking dent. We initially talked about a lumpectomy but it's just a little too large for that avenue of reconstruction.
Also - a delayed LOL at:
"You're like my new besties I couldn't pick out of a line up."
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LeeA - cancer development takes a number of cell/gene damage steps before it can happen. It certainly wouldn't be caused just by you stepping out in some tainted air once...
Now, I am unusual since I pretty much know what caused my cancer because it is catalogued that the multiple diagnostic chest x-rays I had as an adolescent over a two year period will likely cause BC 15-35 years down the track. I just didn't know that until AFTER I found the lump and started treatment at the age of 46years...
Most people will never know what combination of events and genetics (gene changes) likely caused their cancer to develop. No use worrying brain power over it. Just deal with it now.
Jenn0 -
For those of you who may have missed it or are new to the forum..here is a very comprehensive diet and exercise guideline for cancer survivors from the American Cancer Society..LOts of great info here....
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Re the provera issue and all our other attempts to figure out what caused the cancer..I concur with Jennt28...it is largely a waste of time trying to figure it out that all of us seem to do anyway.
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Lago...
Yikes on the change of providers..For me at least finding a team I trust has been a source of great anxiety and worry. You seem to have a very strong, confident relationship with your caregivers and that is vital in moving on beyond active treatment.
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I gulped when I read that too Lago. But if it doesnt work out, it doesnt work out. I recently switched to a new team, and am so so so happy. It's a much smaller environment, and they know my name when I walk in. A welcome change from my gi-normous institutional care I had been receiving.
With regards to the exercising during and post chemo....I think its a game changer for mentally and physically getting through the process. My legs often felt like lead, but I walked every night for 45 minutes...including chemo day. Afterwards, I did a light weight strengthening routine. I did not come back home u til I had worked up a good sweat. I won the city tennis championship in my division after having just received my 5 th chemo. I remember thinking as the other lady served to me... "Please come near me ball, please dont make me run too far!". I forced myself to stay in the game. I am very proud of that silver plate : )0 -
Lee I didn't see an oncologist till 2 weeks post BMX and I too had a large tumor. There are pros and cons to both. If you do chemo first you can tell if the chemo works but I know I wanted my fast growing large tumor out of my body ASAP. I was concerned it would eventually make its way to my nodes if we waited. There is also a chance that we might not have even needed chemo/herceptin but sadly the only way to know for sure is not a risk I was willing to take. Odds were not in my favor to skip it. BTW I felt the same way you did when I met my 2nd now current PS.
Funny but I don't think California caused cancer. I live right in the city. I'm sure all the exhaust from LSD or Clark St. might have added to my issue. I live right in between near the zoo. I blame it on this one boss that was evil and gave me lots of stress. According to my BS my cancer started growing a year after working for him. He's such an ass I like to blame it on him
If you're ever planning on coming in to Chicago I might be able to get some of the gals together to meet. Just give me some warning.
Insurance I doubt this company will drop Aetnea since they parent company is located in Phili but it sounds like they might find more options. We were not the only ones effected. What angers me is Aetnea has not notified any of the companies and they've not only known for 2 weeks… they have been negotiating since early spring so they knew there might be an issue. I think the purposely are waiting to tell because its now open enrollment time. They don't want companies to drop them. My concern is I will be forced into the Advocate System. That's the one I ran away from with the blind radiologists (at least the place near me ).
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Wow geewhiz....that tennis championship win brought me to tears. Only those who have taken this trip can understand the enormity of that feat!
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Also Geewhiz...you made me feel better about changing teams if my current team doesn't work out. I've always worried that if we switch post treatment they might be just a little less vested in our care. Of course it's not logical . I like the idea of a small , personalized practice.
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