TRIPLE POSITIVE GROUP
Comments
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Thanks carberry! I am both anxious for surgery in a few weeks to replace my left TE, I am so tired of having one TE and a prosthetic! I am also nervous that recovery from that surgery will be slower due to so recently coming off chemo, also starting the AI and continuing Herceptin. I am also supposed to return to work on July 1 - so it is a mixed bag for sure! AI, Herceptin, fills, and work - oh boy! Mojo may be awhile!
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SpecialK,
I am half way through rads...and found two holes opening up on my incision line today..~sigh~ I swear if its not one thing, its five others.....I will prob. lose my TE...my plastic surgeon is moving so in the midst of all this, I have to start seeing someone new....
Sucks ass.
But other than that...I'm good....hahahaha
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- Thanks for everyone's help regarding the chemo meds. Right now I am leaning toward DCH. Has anyone out there participated in a clinical trial? I am seriously considering the ALTTO trial which basically is trying to determine the effectiveness of herceptin vs. laratinib. If I do the trial I would definately get Taxotere and Carboplatin but the herceptin/laratinib would depend on what group I was randomized into. I could either get herceptin alone, a combo of herceptin/laratinib or laratinib alone. Gosh- these are all such big words...how does anyone make sense of any of them? Anyway- Thanks for the help.
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Ton Lee- I am new to this group but just read your thread and I am a bit concerned. I am an RN for a PS, (recently diagnosed with BC) so I know about and have seen lots of TE patients. I am wondering...did they fill your TE before radiation? Where are you in the fill process? You have a right to be concerned...right now you have a high chance of getting an infection in that breast and you are right....you may lose your expander. If you could give me some more info I would be happy to give you any advice I may have. Good Luck and stay strong!
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Tonlee - Did you do BMX, I can't remember. If so is this the TE that you were already having issues with with your healing? That is such a bummer. I know what you mean about one thing under control and five others pop up - I feel like a one-armed paperhanger, or maybe a one-boobed one.
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Chris and SpecialK,
One MX, right side, with immediate TE and alloderm. Wound popped open during chemo and stayed open, revision surgery after chemo, finally closed two weeks before rads....
Yes I was filled before rads and received the last fill the second week of rads...only 50cc, so little in fact nothing changed with my fields...
I'm done with fills and going into my third week of rads. I noticed a tiny red dot on the incision line last week, which turned yellow and then popped like a pimple, which led to this hole and then the one beside it opened up. It seems to be on the very top layer of the skin, not all the way through....but that's EXACTLY how it started last time (during chemo)....GRRRR. It is not infected and I am keeping antibacterial ointment on it for now (the PS gave me from before)....I see him Tuesday.
Here is a pic....
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I started anastrozole 3 weeks after my last chemo. So far herceptin only for me has been a walk in the park
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TonLee, if I am understanding you correctly, this was a revision you had done 2 weeks before you started Rads...and the rads started about 1 week ago, along with another fill....So you are only 3 weeks out from your revision surgery. That is not much time for healing. The "little pimples" you describe sound like a wound that starts in the inside, and it takes a few days to manifest itself to the surface. Usually the undersurface is a much bigger wound than at the surface. Sometimes they need a bit of debridement or wet to dry dressings...but if you are in the middle of radiation it is gonna be tough to get these to close. I'm glad your going to see your PS on tuesday. Until then continue with the ointment, and watch for infection (redness, pain, swelling,fever). Keep your chin up, you are doing all the right things. From the pics, they look superficial to me, but like I say, most of the time the wound underneath that you can't see is bigger that the wound on the surface that you can see. I will be sending happy thoughts your way!
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Hello fellow triple positive. I havent been on lately and just reading thru threads. Thank you to those who gave me info on the ACTH and TCH. I am suppose to start TCH on Tuesday but I'm changing my mind, again ,and am ready to hit this thing hard. Met my new onc a week ago and decided on TCH but I have an aggressive cancer so I feel I need to put fear aside and go head on with the 'red devil' on my side.
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Don't be afraid of the red devil. I just finished AC 3 weeks ago. It was very doable. I was lucky in side effects compared to some, but it is 8 weeks, you can pretty much put up with anything for 8 weeks. And because I am getting neoadjuvant chemo, I was able to see what the AC was doing. It really shrunk my tumor which probably made me feel less side effects and helped me get through it. It's worth it IMO. Good luck and I hope you have very few side effects.
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@kay1963 Thank you, I will be calling my onc tomorrow morning to see if i can change, as they have cleared insurance and have my meds already. I'm happy that its doing good for you. I was so scared of chemo at the beginning that when my 1st onc told me i needed it prior to surgery i changed onc. I hope I'm as strong as you through it.
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Question for you reconstruction ladies. My bs told me that either way..lumpectomy or mastectomy He would recommend rads due to lymph nodes and her 2. He also told me that if I opted for a mastectomy no reconstruction for a year. Since the re excision margins were clear the subject never came up again. Wondered why they all do this so differently. Libraylil
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CONGRATULATIONS SPECIAL K!!!!!! So happy for you!!! You did it!!! Looking forward to hearing of your speedy recovery with your TE, and no more chemo!!! Yahoo!!
Arlene Will be thinking of you tomorrow! Good Luck with numero 4!!! Hope your swelling has subsided.
I finished #2 on Wednesday, gave myself Neulasta on Thursday and have been a very good girl taking the Claritan Special K. Lets see if I get those bone pains again
Also I have found the Colace and Mirolax are much gentler on your digestive system than the Senekot, thats for sure!!!!
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I know you guys are tired of looking at my frankenboob...but do you think it looks better today? Or am I dreamin?
Chris,
I am actually much farther out...I had revision on April 1st and didn't start rads until May 16th, so about 6 weeks.
Today they look different, I want to say they look better...like how a blister looks the day after it pops...in the healing stage....it's trying to scab over but I am keeping it moist....guess I'll see what the PS says Tuesday.
I also don't think I'm getting enough calories....yesterday we went to a festival and I ate 3000 calories more than I usually do....today the holes look "better" and a persistent bruise on my back is finally fading....
Might be coincidence....but I dunno....
But I'm upping my caloric intake to 2000 a day until Rads is done.
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@Libraylil I had double bi-lateral mastectomy with 1 out of 7 nodes with micrometasis. They said no rads because I had double mastectomy. I also had recon right after BS was done, my RS went in and put expanders in. Not sure why your BS might feel to go that route?. Second opinion?
good luck,Trinh
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Thanks bucky! I am relieved but waiting for the last SE to kick in any minute - so I will be more relieved when this next week is done. Am looking strangely forward to the TE replacement surgery - I have always had an easier time with surgical stuff than medicine stuff for some reason. I bounce back OK - though after chemo not sure! Keep taking the Claritin for several days, 24 hour doses. I really found that it helped. You may still get some bone pain but that may be more chemo related and treat it with pain relievers. My BIL is a gastroenterologist and he recommends Miralax for his patients because it is gentler. My SIL brought me a cannister after my BMX but I tend to not have the Big C, but the Big D - so no need!
libraylil - I just addressed the rads issue on Thursday with my onc - just checking now that I am done with chemo - kind of a "I don't needs rads, right?" question. He said combo of BMX and only 2 nodes, with micro, plus chemo meant that rads are not needed. This was the feeling of my BS as well and they are both fairly conservative, which is why I had the complete node dissection - they pretty much insisted on it as the standard of care. Even though I didn't initially want it I am now glad I had it because the one additional positive node removed was larger than my sentinel. What that meant was that all known cancer was removed prior to start of chemo, other than a few strays possibly in the blood stream. Is the recon delay because they want rads? I don't know why they all have different ideas - it makes it confusing. I guess this isn't a "one size fits all" game though!
Tonlee - Glad things are looking better today! I am dying to know what was in your 3,000 calories from the festival - I have to live vicariously as I am in the no taste buds, no appetite phase!
cotrinh76 - I used to live in Merced, when my husband was stationed at Castle AFB! I am a CA native - miss it, although not really Merced. I grew up in LA, college in San Luis Obispo and then moved to Sacramento.
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3000 calories of strawberry kettle corn (whole small bag!), strawberry shortcake with 2 cups of cut up strawberries...and 1 cup of REAL WHIPPED CREAM FULL FAT..., and 1/2 an elephant ear with powdered sugar....IT was a strawberry festival! lol SO YUMMY!
Today though, big time sugar withdrawal.
I keep Tootsie Pops on hand for that....but it's not working that well...lol
Still if it's looking a little better today after all that sugar, imagine what 2000 calories or real food might do....but I'm not holding my breath.
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Tonlee - All I can say is thank you - and I love strawberries! I am glad you had fun and enjoyed, although the sugar withdrawal is a bummer. When I think of all the weird things I ate to get myself through chemo - I am amazed I didn't blow up! Thank God for potatoes, in any form, they were my salvation but probably not the best source of nutrition. Now that I am done I need to be more discliplined about diet. My onc and onc PA both think my arm issues are from the Taxotere so I am on the fence about using my arm to exercise. I still have web syndrome type pain if I overheat at all. If I do legs and treadmill and just light arms maybe that would be ok - I am just afraid to make it worse. I had an US and it showed no vascular problems.
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Happy Sunday everyone:
Beginning of steroids for me with TCH tomorrow. Steroids don't seem to hop me up very much but I can feel some heart palpitations. Glad we only have 3 days of steroids though.
You lucky ladies who can eat. My appetite has been pretty much gone since the beginning of chemo - hardly anything taste good. I did get some Creamsicle bars and could eat the whole box in a day but limit myself to only 1.
Bucky: Arm still swollen and guessing it won't go away until chemo is over. I am going to ask tomorrow if it could LE in the opposite arm which I understand is possible but it isn't there in the morning and swells during the day.
Arlene
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libraylilI had a BMX with skin sparing and immediate TEs placed. My onc felt due to the size of my tumor I would need rads. Both my BS and PS felt that starting reconstruction was the right path. If I needed rads my PS would have waited much longer for the exchange. I think he would have tried to expand me fully before rads but if he couldn't he would have waited as well. I hear the minimum time is 6 months but the longer you wait till after rads the better.
I was in a grey area for rads. My rad onc felt no need to stress my body furthing given all the agressive treament I was/am getting.
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I had rads, even though I had MX, because I had 5 positive lymph nodes. Also, because of the size of my tumor and knowing I would need rads, I wasn't offered any type of reconstruction. I saw a PS about 2 months after I finished rads and he said that I would need to wait at least a year before having reconstruction, also said because I didn't have much skin, BS was worried I would need skin grafts after MX, that I would have to have TRAM for reconstruction, and even then he said that I wasn't a good candidate for recon. I guess it just solidified my decision not to go that route.
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SK,
It was brutally hot at the Strawberry Festival. It's the first time since my MX in Oct that I actually felt my arm swelling.....it swelled so much I had to take off my ring...and good thing too!! It wouldn't even fit on my little finger the rest of the day!! And today my arm hurts, but the swelling is gone...so I guess as of today my lymph system is working. ~knock on wood~
I've done weight training for years, both before, during and after diagnosis and treatment...and I have a theory on it in relation to BC tx.
I don't think weights will hurt you SK, if you start with 2-3 pounds and work up from there. You may know this but:
Weight lifting for muscle definition is a simple process of tearing down muscle fibers so your body is forced to build them back stronger (and leaner). If you didn't have a compromised lymph system in the arm you could jump in and go heavy, and go hard. Your muscles would tear down, your body would send blood, protein, and lymph in to build it back up.
The more "damage" to the muscle (the heavier the weight) the more of those things it takes to repair.
Which is why, with a compromised lymphatic system you have to work incrementally. Meaning, you start out really low, just enough to "feel" it after 3 sets, and then build up over the course of several weeks.
This allows your body to build up "minor" muscle tear down without sending in lots of lymph fluid. you will eventually get to the same place, it just takes longer.
And this isn't entirely my theory....lots of research coming out of Harvard supports weight training for women who already have LE and those who are at risk for it. They're finding it actually helps....which makes sense ... lymph fluid is "squeezed" through channels by using/flexing the muscles...it doesn't have a heart to pump it through...it only makes sense that weight training to strengthen those muscles will also improve vascular flow.
Just start low.
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Just curious as to why he told me if he couldn't get the margins clear and we needed to go the mastectomy route no reconstruction for a year. Thought maybe it had something to do with rads. I never got into detail because he was able to get the margins next time.
I do still find it crazy that the tumor size has nothing to do with pos or neg nodes. Look at lago with a decent size tumor and no nodes then some peeps with small tumors and many nodes.
libraylil
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Libra,
I believe one year is fairly "standard" for a woman who doesn't have immediate reconstruction and has rads.
The complication rate for immediate reconstruction and rads is pretty high..almost 50% in some studies.
I had immediate reconstruction but will likely lose this TE. If that happens I believe they will tell me to wait a year before another attempt. I've read it takes your body a good year to develop a solid scar/heal.
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I know you all are probably tired of my photos...but what do you think? Does it look better today?
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Tonlee - I am thinking I will start back at my Livestrong training as soon as my immediate SE's from this final chemo subside, the Big D and working out don't go together well! My trainer had to have a medical procedure so we were on hold for the last couple of weeks. They only count the weeks you participate in the 12 free weeks so I thought I would just wait for her to come back and rest my arm. I think the initial assesment may have aggravated the Tax swelling, but I will now follow a low weight on the arms and work my way up as you suggested. I am not a newbie to weightlifting, I just have not done it for a while! I got scared about cording and LE, but the consensus is just chemo-related swelling, so...
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Libraylil--When the MX was the next step, I was told that reconstruction wouldn't even be discussed until after rads. The GS said the RO would not want all the gear in there during rads. ??? He didn't say a year specifically, but that it had to wait. Now I wonder if reconstruction is going to be more complicated. I won't be doing rads but I don't intend to worry about recon until the herceptin is done. I had 3 surgeries to get this far so I'm not leaping at a chance to get back into the OR.
I agree about the tumour size / lymph nodes correlation. It's so hard to see clear patterns in all of this. My neighbour had a lumpectomy (I believe) in the fall. She hasn't spoken directly to me but has told someone that she caught it early and that's why she only had to do rads. I hope she doesn't say anything to me because I might have to break it to her that I caught it early too but I still have to do chemo!0 -
I am getting mastectomy with immediate reconstruction in July followed by rads. I have at least 2 lymph nodes positive. Not sure beyond that til after surgery I guess. I think the reason for the rads for me is that the tumor is right at the chest wall.
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The PS did say I could only get DIEP reconstruction. She said the probability was high that nothing else would survive rads.
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libraylilI I am an anomaly. I read somewhere that my chances of having some kind of nodal invasion (including micromets) was like 80% with a tumor my size IDC. Matter of fact I do all the strange less common stuff. I never got any nausea on Chemo! I did get the rare nail lifting (every finger/toenail) and shingles (several months later). Both are less common.
For those of you who have to wait a year for reconstruction, you are better off. There are women that don't have to wait but are still doing surgeries etc a year later to deal with complications. It sucks to have to wait but it would suck more to deal with the complications.
BTW I was not a candidate for TRAM even when we though I needed just an MX. If I couldn't do implants I would be looking at my butt or thighs. Didn't like the idea of micro surgery and the complications that could come with it like failure!
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