TRIPLE POSITIVE GROUP
Comments
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SpecialK, unfortunately from what I can tell it's low phosphorus that is potentially linked to anemia.
TonLee, I agree, it doesn't look too new.... There are a lot of numbers thrown around in there and it's hard ot make sense of them -- I imagine in the original article there are charts and such to help. THe fact that there's an 81% disease free survival at 5 years and 74% at 10 years seems to suggest that, if you make it to 5 years without a recurrence, you have a greater than 90% chance of making it to 10 years without a recurrence. I couldn't really figure out the death rates though becuase they used absolute numbers rather than percentages. Also that isn't too meaningful without them breaking it down by stages for you. Gosh I wish we could get past the abstracts in these articles!
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And at the end of the day, the numbers are like playing the lottery. Some win, some don't, no matter how many times they play. I have a hard time putting a lot of time into figuring out studies as very person is so different. For myself, I tend to think I either don't recur...0%, or I do recur.....100%. No inbetweens.
I am hoping the study I am in finds good results in disabling the her2 protein and its ability to travel. I could deal with a breast recurrence in the breast. It's those distant recurrences I don't like.0 -
Fluff,
I do look at the numbers because I'm stage 3. I probably wouldn't if there wasn't such a big drop (in other studies) between Stage 2 and stage 3 with nodal involvement. Some days, I need the peace of mind it gives me... some days I have to stay away from the data because it doesn't look so promising.
I'm not a big proponent of the antiquated staging process...certainly don't think ripping out nodes that aren't hot is a good way to do it.......but it is all we have right now and upon which most of the studies break down subgroups.
Mostly what the stats give me is a time frame of "likely" recurrence...and when I pass it, whether valid or not, its a "whew" moment.
Probably just sets us up for a double whammy when it comes back tho....double edged sword, that.
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so 7% still had recurrances after 6yrs? i thought because this was such an aggressive cancer that recurrances would show up before the 5 yr mark, such a sneaky ass b**tard disease
lee a port was the best thing i did, honestly. I had to do my last H through IV and thought i was going to pass out. The port was so easily accessible, not painful at all and made my life (and the nurse) so much easier
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Fluff, you are 100% right but still, the numbers are basically on our side so it is some comfort when I’m in hypochondriac mode to remind myself that my odds are good -- not as good as I’d like, but good. With you on the local v. distant recurrence. That’s one reason I feel safer with a lumpectomy – totally irrational but I wanted to leave the cancer someplace to go where it’s not REALLY going to hurt me if it “wants” to come back.
Rozem, I was bit confused by that as well.
TonLee, IF, not when. IF.
Hey anyone seen Lago recently? Hopefully she’s busy with a brand new job.
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cypher - saw lago on the TCH thread, she has some work and commute time constraints - I was starting to get worried about her, but then she posted!
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SpecialK, great! I know she was looking for work so it sounds like she found something. Whoever it is, they are luckky to have her.
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Special K...
Sorry if I missed your post but how did the fat grafting go? Heard great stuff about the process and results.0 -
ashla - very well - he took more than I thought he would, which is great - so far I am happy with the areas he filled, I am just hoping that it stays and is not reabsorbed. Time will tell. The recovery has been pretty easy - I am a little uncomfortable but not as bad as I thought it would be.
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SpecialK....
Great news!0 -
SpecialK,
Did they take fat from the belly? Thighs? Someone posted here that she had streaks in her belly where they sucked out the fat and they don't seem to be going away.....do you have that?
I think belly fat would be a good grafting choice because it is so DANG STUBBORN!
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TonLee, it does seem like using belly fat for fat grafting would be one of the very rare win-wins in this whole thing!
SpecialK, glad it seems to be going well.
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SpecialK - I'm excited about your fat grafting! I had some fat grafting done when I had rhinoplasty several years ago. Some was added to my lips and and a few other places (upper cheeks I think).
Also, I bookmarked your bra suggestion that I saw on another thread. I don't think there's anything I hate to shop for more than I do a bra (ugh). Right now, bras seem like a distant purchase at the end of a long tunnel but I bookmarked it for the future.
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Everyone, thanks for the thumbs up on the port idea. I think that's how it will all turn out and . . . happy day - the IV was removed today! The latest one wasn't going to make it through two more doses so the home nurse removed it. I feel so free to be IV-less for the first time in twelve days!
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tonlee - yes, the PS took the belly fat, he feels that it yields fat that is hard to lose when menopausal and gives a good aesthetic result - less likely to dimple. He went all the way up to just below the implants, plus the hips and just above the butt cheeks on the back, which is the most sore right now. Everything looks really flat right now but he stressed that I need to wear compression for a while. He did not remove anything from the thighs - I think this is a place that he feels does not always give a good result, so I am going to have to work on them myself. When I have made an extra effort in the past they usually firm up fairly well, so it is up to me to work harder.
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SpecialK, are you wearing the compression garment 24/7? Mine was like a 50's girdle all the way up to the foobs. It is by Veronique. They are $100 online. As crazy as it drove me, it became somewhat addicting. I had to wear it for 6 weeks.
And, whenever I wear anything fitted, I go back to it because it makes everything look pretty amazing!
Tonlee...just checked everything closely. No streaks. It looks really good. What I have is some looser skin where there used to be fat that I am trying to get toned up. It isn't excessive and isn't flabby. Not sure how to describe it, but it isn't tight.
I completely agree on the percentages, but here is what I was told, and it is why I just can't get past the feeling the numbers don't mean anything in my case.
1. Suspicious mammogram....oh don't worry, only 6 percent it is anything.
2. Surgical biopsy....only LCIS, advised to take tamoxifen
3. MRI ...suspicious...unlikely to be anything.
4. Ultrasound biopsy...results day 1, all clear, then call from surgeon that they think they missed what they needed. Need another surgical, but only 30percent it will be anything.
5. Surgical biopsy...IDC, probably just take tamoxifen as size didn't warrant chemo or radiation
6. Oops, FINALpath arrived later with the FISH. Her2....now we need chemo, herceptin, tamoxifen, etc.
The only thing that they were right about was that it wasnt in my nodes, and I fully expected to wake up hearing that oops, they were wrong. It was in my nodes. In fact, that is the first thing my husband whispered in my ear when I woke up, and he repeated it many times to make sure I got it. Thank heavens too, as I woke up to ten people in my room, lining the walls.
So....that is why I can't put my personal faith in numbers. I like to read them, but just feel Luck is not on my side. Maybe it is because I am coming up on the two year time frame.
I was never a glass half full person,and I am trying to focus on other things to take my mind off BC, but then...I worry that if I take my mind off of it, I won't notice a subtle change that could result in early detection.
Crazy, I know. Like a big circle.0 -
Pbrain, glad the 2nd and 3rd treatments are treating you better than that 1st.
LeeA, I think you'll be happy with your port decision. Especially since you'll be getting Herceptin for a year. The port is so easy. I put some lidocaine and saran wrap over it about an hour before my appointment and I don't feel a thing when they access it. Some poor older lady in the chemo chair next to me last Tues had FOUR sticks before they got a vein they could use! I felt bad for her. I couldn't imagine going through multiple sticks like that, I don't do well with IVs.
I'm Day 13 (on a 3 week TCH schedule) and feeling great! Last week was good. Other than the Big D earlier in the week I haven't had any major SE once I got past Day 5. Thought my platelets were low last week because I was bleeding from everywhere (nose, gums, vag, rect) but platelets were fine and bleeding has since stopped. It was weird it lasted for just a couple days, except the period part. I have Herceptin again Tues, then next chemo Dec 26.
Question about Herceptin treatments, I've only had 2......did anyone get very tired during/right after your infusion? I noticed a marked tiredness last week about halfway through my Herceptin infusion and the onco nurse said quite emphatically it wasn't the drug. She said it was because I was sitting still in the chair and just feeling tired. But I'm not buying it, I really think it was the Herceptin. And with all the concern about it's effects on the heart I did get worried that I got so tired during the infusion.
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steiner, I didn't last time, which was my first herceptin only one, but I felt tired in the evening. I've heard that it can make you tired though so I wouldn't worry just because of that. Some women say that if you slow down the drip it's safer.
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fluff, try not to worry too much about your 2 year anniversary. There isn't anyone on this board, and hardly anyone on this website, who ended up on the right side of the statistics with respect to getting this diagnosis in the first place. But most women with bc these days live so ...
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Thanks cypher....I'm working on it! I'll get there.
Steiner, I was definitely tired on herceptin. Mine started later in the evening also and continued into the next day. Then, ok.0 -
Yep Herceptin made me tired. But check to make sure they aren't giving you benedryl. Some centers do, even just for Herceptin. Most use it only for the big one, but who knows. However, I got my Herceptin in 30 min and had a big drop in EF. I had to come off Herceptin, so it might be better go do Herceptin slowly. Good luck.
LeeA, glad you got the IV out. I had that in my arm the first time for 4 weeks. The second infection I had they used my port for four weeks, it orchestra, but was less annoying than the iv in my elbow. I am thinking of leaving my port in, because I needed only one tube for a potassium blood test and the first tube they took out, took too long to fill and they had to do it again to get a good result. They just couldn't get any blood out of my hand. This week I have to get a rainbow draw done, they will use my port! LOL. Much love.0 -
I always had bendryl with my herceptin, so hard to say what made me tired, but was generally tired and achy for a couple of days after herceptin, also, would get a headache 2 days after that lasted for 2 days.
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Moonflwr, yikes! 4 weeks would suck! My husband had his in (back and forth between both arms) for about the same amount of time (almost the entire time he was hospitalized - which was five weeks) and his poor arms became so infiltrated (?) that I had to massage them daily to try to get the fluid moving.
Eventually his beautiful hands came back (I think my husband has beautiful hands - I, on the other hand - heh, no pun intended, have horrible-looking hands).
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RE: Herceptin - my first dose was 90 minutes long and included Benadryl. Relda was there that day and stopped by and I was asleep and my hub had just awakened (lol, he wasn't being infused - just tired from all the cancer drama I suppose). Anyway, I came home and took another nap for about two hours. Very deep sleep. I'm assuming it was due, in part, to the Herceptin but I've also been on Vancomycin so there's that. In any case, I didn't mind it because I'm kind of an insomniac and I'm thrilled with any and every deep sleep episode I can get!
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Steiner,
Yes! The afternoon of Herceptin I felt an overwhelming urge to nap. And I never nap. I literally have to be dying or close to it. lol
So I don't care what they told you.....I know FOR A FACT it made me tired....wore out. Just for that day though. (And I didn't take any pre-meds, just Herceptin straight up.)
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TonLee- My thoughts and prayers are with you today as you see your doctor to address your back pain.
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TonLee, i was thinking about you today, too. God bless.
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Good luck today TonLee
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Oh I'm so far behind, I'm sorry.
TonLee I hope u'r back problems turn out OK
SpecialK I'm glad that fat rat wasn't horrible bad.
Lee I didn't see if u decided to get a port, but I still have mine-and it's used all the time--they can't use either arm so it's great--It's so easy for me and for them.
Pbrain u sound so much better--I'm glad they chaned the mix.
Hi Cypher
My GF is still here so I haven't been on my cop. very much--But it's so nice to have her here.
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Got xray a few minutes ago. They took 3. Came back for 3 more. Then came back (after radiologist saw them) and took 4 more. Should know something tomorrow.....meanwhile dr ruled out joint pain....doesn't think its muscle or gall bladder...but gave me muscle relaxers and anti inflammatory just in case....they're calling ...gotta run
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Just said they will let me know tomorrow if i need mri...have to talk with other radiologists
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TonLee,
This forum and your current testing is one of those rare situations in life where we here can say ....we know what you are going through.
We are with you as you wait for answers.0
