TRIPLE POSITIVE GROUP
Comments
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Tonlee, I got my first biggy of Herceptin last tues. and on Fri,Sat, and Sun I was very nauseous, and weak and shaky. Legs felt like jello. Did not keep me down like chemo did, I could still get out and shop and see friends, but couldnt eat. Went to awesome potluck dinner on Sat. and the sight of all the food made me queasy, had to go outside to get fresh air. I will still take it over chemo!
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My Onc responded...he's pretty fast on the email.
I am aware of this study. This is often the exact regimen we would recommend for someone who has HER2 negative breast cancer. In your case however, you have HER2 positive breast cancer which has different clinical trial data. I am basing your chemotherapy off data from the BCIRG 006 trial. It was presented in the 2007 ASCO annual meeting.
Abstract LBA1008 (BCIRG 006).
I didn't think Her2 status mattered on the study, I will have to look at that again. Oh well, I may as well finish since I started!
Carberry...I can feel the Herceptin in the weekly doses, I really hope the triple whammy doesn't do me in
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TonLee and Lago - In the 4 vs 6 study they included HER2+ tumors and didn't see any interaction with chemo but the numbers were small for the HER2+ group so they may be underpowered for that subgroup analysis. Looks like 20% of 3173 were HER2+, so that's about 635.
"For HER2-negative patients, relapse-free survival was 91.7% with four cycles and 91.1% with six cycles, and overall survival was 96.2% and 95.9%, respectively. For HER2-positive patients, relapse-free survival was 93.4% and 92.6%, respectively, and overall survival was 96.6% and 96.0%, respectively." Link
"In September 2010, data were released for six vs four cycles, based on 3,173 patients followed for an average of 4.6 years. Most patients had T1 tumors, 94% were node-negative, 64% were ER-positive, and 20% were HER2-positive."
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Since my Onc is using the BCIRG...that compares Her2+ in three arms.
AC (4) T (4)
AC (4) T(4) H starts with T
TC(6) H (from beginning)
So they are already just doing 4 treatments of AC for Her2+ in the BCIRG, and comparing it to 6 of TC.
So I guess he might believe it requires 6 treatments of TC to equal 4 of AC...or feels this study conveys that. And since TCH wasn't the actual chemo done in the 4 vs 6, maybe he's not comfortable recommending it?
Hmmm.
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4 AC plus the 4 raxotere, so 8 total chemos vs the 6 TCH.
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Ah yes, I was looking at the cycles.....
Hmmm...
I'll ask him next week when I see him.
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Lago - I started Tamoxifen the day after I finished radiation. So I finished chemo in August and finished radiation in October and then started Tamoxifen. I should have said above that I will STILL be taking Tamoxifen after I finish Herceptin.
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Question.... for the ladies taking tamoxifen... periods? Are you having them? I have been on it since November and no periods, but then I read that women do have them.... ? So, who has them, and who doesn't... and who is still on herceptin (I am). Thanks!!!
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Leanne - I didn't have any periods starting after my 2nd AC in May. They never returned all through chemo, or radiation, or while I was on Tamoxifen alone. Then in January I had a complete hysterectomy, so non issue now...
I do have a friend who was on Tamoxifen for a few years (chose to stop after about 3 years I think - she was very early stage dcis) and she said she did have periods on it.
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I'm still on Herceptin..will be until Decemeber.
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Leanna, I'll be a passenger on the herceptin train until August. Going tomorrow for a top off. libraylil
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I'm on herceptin till Thanksgiving time. Last chemo on Friday....I cant wait!
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lil - we are similar, I am on herceptin till Aug too.0
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I saw two medical oncologists prior to starting my chemo. I am the highest size for stage 1 (2 cm). Had SNB negative- one node removed.
The BCIRG study was the recommendation from both oncologists based on the lower risk of cardiac complications and better chance to have less risk and be able to stay on Herceptin with lower cardiac risk and comparable outcomes. That was based on my specific situation and path etc.
I do feel better getting two opinions, both said same thing. My treatment is being done at the office closer to my home since both offered same advice. The first visit- the md went over specific studies and wrote them down in case I wanted to review them (I did- I am a nurse who used to work and lead in oncology years ago- and am a PHD nursing student or was until this hit). I did read some of the research and still am reading newer research as I see anything on HER2 positive (i don't have time or ability to follow others- looking at my options now and future if ever needed).
I know each of us is different. I do think asking about the path and for me getting that second opinion from 2 capable mds made me feel better- and I had to do that for my sanity before starting chemo. They thought preop I was 1 cm- the MRI was much worse, but luckily the tumor was 2 cm and there was another spot near but not part of tumor that was DCIS 1 cm- and grade 3 at that in addition to the other which turned out to be the primary tumor site- IDC 2 cm, grade 2, HER2+.
So I completed round 2 of 6 TCH today. Long day- it ended up taking 7 1/2 hours instead of the projected 3 or 3 1/2 because of the wait for Emend to be delivered (it was rainy in atlanta- it was on a fedex truck- and they ended up having to get it from elsewhere). After my herceptin, they asked if I wanted to come back the next day to finish- I said no I'll wait. Several hours later was told it's still not here- I said I'll wait. They did stay long to treat me- but i did end up in tears at many points waiting today. Very tough day. Let's hope side effects are better this time. At least I know what I can do for them. Hoping that'll help.
sorry for the lengthy post. Going to go to sleep (I hope) early.
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Leeanna, I'm still on Herceptin until early Oct. I've beeen on Tamoxifen since February. It took a while for my periods to stop when I did chemo but they have not returned yet. With that said though, my onc said they could return & if they do I need to let them know and they will start chemically supressing my ovaries/putting me back into menopause b/c they don't want that estrogen pumping through my body right now. From others on this site it looks like that means Zolodex injections.
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Super! Thanks!!
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nora_az Congrats on your last chemo! just one more hurdle conquered! I see that you had the bil DIEP, I am scheduled mar 1 for DIEP on left side only, saw PS yesterday and am scared out of my wits! I am not a good pt. and not good at asking for help, Any recommendations for me? Did you have any RADS on the new breasts? I am told RADS are in my future, but dont wanna ruin the recon.
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Ok, here is something I forgot about but,....I just found it in my medical notebook and now I'm a little concerned.
Back in November of 2009, I was having really heavy periods...horribly heavy. Went to GP...blah blah blah, led to an ultrasound.
My left ovary is so far left, the ultra sound could barely pick it up, but they couldn't get any information from it. Not size, nadda.
My right ovary though..they found "suspected collapsing hemorrhagic cyst measuring 1.3 x .9 x 1.1."
They called me and said to come back for a follow up in a couple months.
I never went back. I know I know...
Mostly because my periods leveled out. My blood work from that time shows a low iron level, (because of the periods) and my LYMPHS were high.
Now I am wondering if I should bring this up to my Onc. What if it wasn't a cyst, but cancer? He won't do any kind of scan unless I have symptoms...and I'm not having pain or anything...
Shoot.
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carberry..
No rads for me. I had my BMX before I had TCH treatment (my tumor wasn't large) I will be on Herceptin till November and then onto Tamoxifen for 5 years.
I was offered a lumpectomy w/rads but opted for a BMX based of family history (check out my profile it explains it all) DIEP was a hard surgery, I won't tell you it's a piece of cake because it's not however if I had to make the decision all over again I would still do it.
Make sure you take lip balm with you for your hospital stay. Also, my surgeon made me be in a 80F ICU room with a "bear hugger" on me (that's sort of like an inflatable mattress which is filled with warm air) I was miserable! It wasn't until I begged the nurses to get me ice packs to put on my forehead, arms and legs did I get relief. It was as if they never thought of that! That was probably the most miserable time for me was dealing with being overheated for the first 36 hours or so.
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TonLee
I would if for anything, for peace of mind.
I have thought about a few things too prior to getting the diagnosis that I was going through that makes me wonder too. I had a CT scan in March '10 which was clear but it was because I was in severe back pain and also my liver enzymes were off the charts high. I was also suffering from weird symptoms such as severe abdominal cramping lasting about 40 minutes then going away as fast as it came on. These things are now in my head and I cant believe I never told my ONC about it but at the time I never thought of it being connected. First thing was to take care of my BC never thinking it all could be related. This has been in my head now for the past 3 weeks or so.
I think for peace of mind you need to talk to your ONC and I will talk to mine too!
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TonLee It probably is a cyst (sounds like one) but you do need to follow up on this and your onc should know.
I had an ovarian cyst once. I did do follow up and it went away. Functional cyst happen all the time. I have them in my liver too. My onc is doing a follow up in a year on my liver. They are a bit more cautious once you have been diagnosed with BC.
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TonLee - What did you decide about your eyes and the stints?0
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I just sent my Onc an email. Hopefully he will be able to get back to me today about the ovary thing.
Omaz I canceled the stint operation. Yesterday my Onc sent me an email..the Opth called him and narked me out for canceling! lol
Onc said I should go ahead with the operation. I told him that since the steroids, the tearing is less, which leads me to believe things will be ok, and I'll risk the scar tissue.
He said fine.
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Nora,
Keep me posted. I'm curious to see if they take you seriously. I kinda get the poo-poo 50% of the time.
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I will, you too TonLee!
The other thing that's been going through my head, since I need to have a hernia operation do I talk about getting a prophylactic hysterectomy? I want to reduce the risks of cancer ever coming back anywhere. Is this overkill?
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I don't think it's overkill Nora. I will likely have my ovaries removed since I was so ER +. From what I understand, this is actually an option a lot of Oncs bring up. My Rad Onc told me I should have them removed.
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Hi, All. I'm new to this board but already today have found many useful tips. I, of course, am triple positive and had my first TCH treatment on 2/14 with Herceptin every week in between. The second TCH was supposed to be on 3/8 but it was delayed until 3/15 because of a c. difficile colon infection that was related to excessive antibiotics plus the depressed immune system due to the chemo. So far on this board I have not seen anyone write about having a c. diff infection and the extreme diarrhea that comes with it. This has been the most difficult SE for me to deal with, and I guess it really isn't a SE. Immodium did absolutely nothing to help but I finally went to my GI doctor and she put me on Alinia and I'm doing better now. Had my first real meal in three weeks last night. I'll have radiation after the chemo and Herceptin for a full year. Any tips for avoiding another c. diff infection will be greatly appreciated. Obviously, sanitation has become my mantra. Thanks.
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peggyp sorry you are having some difficulties. Diarrhea is more common SE than constipation on chemo so don't think this is odd. I was one of those weirdo's that had constipation but I actually got a lot of SE that were more rare and didn't get the ones that were more common. Figures.
Did your doctor have any recommendations on how to reduce difficile colon infection? I would assume making sure you wash your hands often is a must. When in the hospital I would make sure you let everyone know you have had this in the past and be sure they wash their hands and equipment before they go near you.
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peggyp I too had severe diarrhea with TCH (not c-diff though) at one point after treatment #3 I got so sick with diarrea I had totally depleted my system of potassium. Docs called and wanted to hospitalize me, which i refused, didnt need to get any sicker, took potassium supp. and started eating a banana every day. the banana really helped with the diarrhea. When I was unable to eat I would mash it up in smoothie. My GI system still isnt the same since being done with chemo. Hope it fixes itself soon...I know every bathroom in town!
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Hi, lago. Actually the doctors think it was more of an overgrowth of the c. difficile bacteria because of the excessive antibiotics killing off all of the good bacteria, plus the fact that my immune system was depressed and my white count was low. I had antibiotics after two surgeries since the middle of January, and I began to run a fever 5 days after my first TCH and my oncologist thought I had an infection (but assumed the diarrhea was from the chemo, not from the infection) so she gave me more antibiotics. So they don't think I got it by ingesting the bacteria, though it certainly be transferred like that. The nurses at the cancer center where I go say that constipation is a more normal SE but everyone is different. After 6-10 bouts of watery diarrhea per day for the last three weeks, I'm glad my doc delayed the next TCH until 3/15 to give more time for my colon to heal. But I'm so afraid of recurrence if I get any other infections and require antibiotics again. Has anyone had any problems with fever and infections, like URI or UTI, during their chemo?
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