TRIPLE POSITIVE GROUP
Comments
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nmoss - can you take any anti-nausea with the pain meds to counteract that part, or does that not work? I know it seems ridiculous to take a drug to deal with the SE from a drug that is giving you an SE! I also took leftover Vicodin on tx#1 but have not needed it again. I am noticing more lingering but moderate bone pain in the last 2 tx but I haven't needed to medicate it yet.
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My H runs in over an hour- the total for all 3, including pre meds, is about 3.5 hrs. I've been told they can't run the H I any quicker than an hr
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Nmoss Please hang in there...I'm going for TCH#5 next Tues and I feel like quitting every single time! I have terrible side effects for 10 days after every TCH including 4 days of cramping/D so bad I just cry (among other SEs). The pain got so bad during #4 that I vomited for the first time during this whole ordeal-enough said.I also have the acne on my scalp-mine seems worse since the hot flashes started. My point in all of this is that I'm determined to get through all 6 treatments in spite of the fact that I feel terrible a lot of the time. I do feel like I can do it now that I have completed 4 and only have 2 left-the end is in sight. For me, the turning point was TCH#4 because I needed to be more than halfway to see the end. You have to do what's right for you but we are here for you and will cheer you on. Thank goodness we have each other...I certainly need a lot of cheering up during my 10 days of misery of every cycle-it's really tough!0
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I wonder why so many of you are being told you can't take H in less than an hour. I get it in less than 30 minutes! I also refuse any pre-meds for it ...(some centers give them, others don't). I know how much one gets is dependent on body weight. But none of you ladies look bigger than me, so I'm guessing we're all about the same (give or take 10 pounds). Hmmmmmm...makes ya wonder.
I do my bloodwork the day before so I can get in and out fast the day of transfusion.
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NMoss,
I think the worst SE for me was the "dark" days..this is a safe place to vent. I want to tell you to hang in there, but that really didn't help me (at the time) to hear when I was hating TX.
So what I'll say is....this is hard, and painful. And will become more so as Tx goes on. Millions of women have gone before you and done it. I know you are as strong as they are. That whole one day at a time motto really is appropriate with chemo.
Ok, I gotta say it....Hang in there sister. Focus on the fact this chemo is kicking cancer's butt...and there is a war raging inside your body right now. You are the battlefield. But ALL battles eventually end. All of them.
((HUGS))
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My #3 of 4 treatments was the hardest for me - it really made me have much anxiety getting off that exit for #4. I think every time you might think the next one will be worse, but it's not always the case. Every infusion day, something happened. My heart must be very sensitive to meds because it often went wacky and infusion would have to stop and then be slowed down. My appt was at 10 a.m. one time and I went home at 8:30 p.m. I was looking forward to only Herceptin with no premeds being 1 1/2 hours, but was 3 hours for Herceptin and 5 hours total because, once again, my heart would not take 1 1/2 hour infusion. Wouldn't be so bad if I didn't have six kids to try and figure who's picking them up from 4 different schools because my infusion ran late.
My scalp was so sensitive before my hair came out and I also had what nmoss calls "head acne" and I've never had any kind of acne. My onc actually said it was infected hair follicles from my hair coming out and it went away as soon as I shaved my head. Sort of hoping to get some hair back now that just on Herceptin, because oldest son is getting married in July and haven't worn a wig yet because my kids don't like them and don't know what's appropriate to wear to a wedding as far as hats, scarves, etc.
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Are we talking about weekly Herceptin or every 3 weeks Herceptin? My current weekly Herceptin infusions without the TC only run for 30 minutes after my bloodwork is complete. I'm only at the infusion center for a total of 1 hour normally...
TonLee said it well...the "dark" days are the worst and you can't avoid them...but it helps to come here and express what you are feeling to get through those times and come out on the other side. I can't tell you how much it has helped to write a post and then read a response from TonLee, Lago, Omaz and many others who have already been down this road ahead of me. It's so encouraging when I feel like I can't take this for one more minute.
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Like Tonlee, I'm wondering why the different approaches to Herceptin. For me, they started the first one at 1.5hr and then dropped to 1hr for #2. #3 was 45min and the nurse said it would be 30min from now. I'm getting all three drugs every three weeks.
I'm hoping that when I get to H alone, it's a half-day adventure instead of almost all day. I do blood work, onc appt, and then chemo one after the next. It's the hurry-up-and-wait that irritates me. The blood work takes minutes, thanks to the port, but then there's an hour to wait for the onc appt because he needs results to make any decisions. There are absolutely no hard and fast rules about all of this.0 -
Hi guys... catching up on posts.... I've been on tamox for 6 months now, and just got my first period... I'm confused... is that normal or not? I started spotting before I saw my onc last week, and she said it was normal that my periods would return. But some of you are saying any bleeding is not normal???
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Sorry I've haven't been very supportive these past few days. Just too bitchy due to my own issues. I think I am now out of the abyss. Yesterday and Wednesday were hell. I'm now off the narcotic and back to ibuprofen. Feel much better today.
nmoss1000 you can do this. I know you can. Just keep thinking that this chemo crap is only temporary. We want to make sure you stick around for along time. Hey I wanted to quit shingles yesterday but "they" wouldn't let me so I know how you feel.
As I mentioned my actual Herceptin infusion, every 3 weeks has always been 1/2 hour. The process is what takes so long.
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Lago - glad you're feeling better!
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NMoss: Hang in there as you almost 1/2 way. I'm going to talk to my onc next week (for #3) about the studies stating that 4 TXs are (and many times moreso) than 6 TXs.
Did anyone see Dr. Oz yesterday with the breast cancer doctor (researcher)? She HIGHLY advocated (and says we need to be our own advocate in this war) a relatively new test for breast cancer. I was on the treadmill so didn't get to write the test down but it is basically an MRI but with no radiation. It is color imaging and the equipment lays on your breasts and it cuts back and forth and picks up any cancers. This test is hard to find but she says you need to research and find a facility that has the equipment. She says it is so important to ensure the radiologist who reads your mammos be a skilled breast radiologist and that we need to ask who is reading it and get the background of that individual. Let me go to Dr. Oz' website and see if I can find the detailed information on the tests because my description here is so vaque.
Arlene
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Arlene if that new machine shows a 3D image that's what my mom is going to get. She can't do MRI's because of her scoliosis. She's very excited to be able to do this. I think it's through the Massachusetts General Hospital in Boston (mom calls that place her condo in the city).0
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Lago: That sounds correct but I wish I could find the name of the equipment/test but the nice thing is the accuracy and NO radiation. Oddly, I can't find it on Dr. Oz' website. I'm assuming the breast MRI (with contrast) is pretty accurate too but it has risks.
I'm on a mission to find the name of it now.
Arlene
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ArleneA--I mentioned the study about 4 vs 6 Tx to my onc this week. Her take on it is that it's relevance depends on what the C is in the drug protocol. Carboplatin was not what was studied, so it's not going to mean much to the likes of me. I forget what the proper C is.
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Mom not home. Will ask her later but I think its called: Breast-Specific Gamma Imaging or Molecular Breast Imaging,
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pasmith the other C must be Cytoxin.
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I too am on Carboplatin but I'm going to ask anyhow. I talked to my insurance nurse (who is great) and she says there are lots of studies now for many groups showing that 4 might be sufficient...sure worth asking. My problem is the heart palpitations from the chemo (they don't think it is from the Herceptin since I've only had one since they withheld it last time) and I might be dropped down to 4 anyhow....kind of scares me but the whole process does.
Lago: I don't think that is the test but the test you mentioned uses radiation. I believe this is the one but not positive. ABVS
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Carberry-i didn't have my clavicle are radiated. He said that was because I had only one positive node. As for the pool and the lakes, I started my radiation June 3rd last year and was told not to do either. But, I have read on here that some rad oncs said it was okay. My rad onc didn't want the chlorine drying out the skin and then if I did end up with my skin blistering, he didn't want the chlorine on the skin or the possible infection from the lakes. We too have a boat and a pool, so I know how you feel.
V
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In that study that looked at 4 vs. 6 cycles they used taxol alone compared with AC. Since those of us on TCH had taxotere wouldn't our 6 cycles of taxotere would be similar to the 6 of taxol. For us the carboplatin is an extra. The treatment groups were taxol alone, 4 vs 6 and AC 4 vs 6. Note though that they appear to have done treatments every 2 weeks which is different from TCH. What do you think?
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It funny but every time I read this new information regarding early stage breast cancer it never applies to me because I have a ginormous tumor. Even cancermath.net says my tumor is too big to predict using their tool. Not to many of us big tumor no node IDC folks I guess so they don't count us as often. I always did march to the beat of my own drum. 0
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Yeah Lago your tumor was big! Sometimes they grow fast - Mine was too small to really detect on mammo and boom, palpable, in 14months.0
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Lago your tumor was big. Sometimes they grow fast I guess - Mine was too small to really detect on mammo and boom, palpable, in 16months.
Sorry, posted the same thing twice!
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Leann,
I was told by the OB Onc that ANY bleeding had to be reported. He said occasionally a few women will have "break through" bleeding, but he still biopsies them....
He did say if it seemed like a "normal" cycle, lite-to heavy-to lite over 4 days or so, a lot of OB Oncs won't biopsy....but he does.
I think you should make an appt with an OB Onc.
Hope that helps
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Just got back from the cardiologist and looks like no more Herceptin for me and only after 1 dose. My EF was 77 prior to chemo and Herceptin and after only one treatment, EF is down to 50-55%....not good. We'll see what the onc says next week but I'm pretty sure that I am done with Herceptin which is scary. I hope they let me complete 4 or 6 chemo sessions.
BOOO!!!!
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Arlene sorry I haven't been following. Did you have any symptoms? Let us know if they do cut you off or decide to try again later0
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Lago: After my first chemo, I ended up in the ER two days in a row with heart palpitations. The first time they said it was electrolytes but they never went away....they are better but still there and I'm told the palps may never go away and I'll have to take medicine for them forever. I'm a big runner so this is really, really tough on me. Now, the cardiologist is not at all familiar with Herceptin so next week, I'll see what the oncologist says. Cardiologist says chemo itself can cause the heart palpitations too.
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I wonder if neratinib might help you Arlene? Maybe it's just different enough...
Lago...hoping those nasty shingles are on heir way OUT of your system!!!0 -
GeeWhiz: I'll ask my onc next week about it. I was offered neratinib as a clinical trial but turned it down since I was doing an Exercise and Chemo Clinical Trial. She told me before though that lots of women do fine without the Herceptin but I'll sure ask her next week.
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Lago: That's the first I have heard of CancerMath.org. What a depressing website!
Why don't they have any stats on Herceptin and it's impact on triple positive outcomes?
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