TRIPLE POSITIVE GROUP
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Hi her2 ladies,
I've had a busy few days and did'nt get a chance to log in here but wanted to thank you all for the warm welcome:)
I'm glad some of you found some confidence in having me post my stats here, i think herceptin has completly changed the whole dire prognosis of this type of cancer and we're writing the new chapter on this right now!!!!
Cindy, yes, you WILL drive yourself crazy lol!!!! No one knows what causes this and there's no point (I think) in trying to ensure every little thing we use or eat may somehow cause a recurrance because it goes far deeper than that.
I've made no changes to my lifestyle, although there are many I should have! BUT, I believe bc or a recurance is not down to what we eat or use as make up or cosmetics, and there are many studies showing why but more needs to be done of course.
I honestly would'nt waste my time worrying about this when there's a life to be lived and enjoyed ladies!!!
Worldwatcher, I have never come across this before and would suggest you post your past details on www.her2support.org to get more opinions from people who understand this disease and may have some info to interest you!
Tricia xx
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Hillck..there is some validity in your point about allergies happening later in treatment. I went for #4 yesterday and asked the Onc Nurses for clarification on the cardiac episode (with no Bendaryl or steroids), she said it wasn't a first or second treatment.0
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tonLee - During chemo when I would go into my appt before treatment my blood pressure was always high and one new nurse became alarmed and asked me about it. I said I was so nervous and she asked why. He He, I knew for sure she had never had such strong medicine infused into her circulation before!!!0
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Tricia, I couldn't agree more.
I plan on living my life, not allowing breast cancer to live it for me. Sure I can throw some flax seed on dishes here and there, but I am fairly healthy in the first place. I don't believe my diet had much (if anything) to do with my BC.
In my case, a combination of genetics, synthetic hormones (pill), and environmental exposure to pollution and radiation would be my best guess.
Still, if anything, BC showed me loud and clear every day matters, every second....and I intend to ENJOY that time....not worry myself about when I'm going to die because I used the wrong face lotion, or drink out of plastic bottles....lol
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I agree that allergic reactions can happen at any time. I have heard that your body can build and build antigens and get to a point that sounds alarms...with no warning and out of the blue you can go into anaphalatic shock ( pretty sure I spelled that wrong, lol).
I kept the steroids in the infusion, and it's not protocol to also add benadryl at my university. I just cut out the oral ones after the first treatment after as I mentioned, discussing it with my oncologist and the oncology pharmacist. I think we all have to learn to listen to our bodies. That's what I believe I have learned most. I try to find a balance. I feel better juicing, and vegetarian and lots of weight training given the estrogen dominance and the reports of how well hormone positive gals respond to such, but I am not nuts with it. There are days my kids want to run up to Dairy queen, or simply lay around the sofa all day with me....and I cherish those moments and add extra hot fudge!!
I just had reconstruction in Miami last week, and my counts and heart are all humming along super high, so I feel like my body is responding to a happy medium.
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Been following the thread for a few days now & thought I would add my 2 cents.
Regarding treatment, I got 4 different opinions from 4 different oncs. I also had done quite a bit of research and asked about Herceptin alone. They said they didn't know of anyone that was doing that and it really wouldn't be an option.
I also tried to get my BS to run the Oncotype test (several times) but he refused saying that because I was HER2+ it would definitely come back with a high score.
Oh well, I ended up decided to only do rads and now on tamox. Can't look back and second guess myself now or I would make myself crazy! I am having difficulty moving forward though - I spend a lot of time on the discussion board (mostly reading) and have a hard time concentrating on getting back to my "normal" life.
Jenn
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JSandstrom I were you highly ER? Another gal on this forum (and also from IL) went for a 2nd opinion. The 2nd opinoin was from my onc… her specialty being HER2+.This is her post:
---------------repost----------------
"I'm confused about the oncotype test too. I wasn't going to get it, because my Her2 status on the Fish test was amplified, but the onc i went to for a second opinion, who is a renowned expert on Her2+, wanted me to get it because she thought my tumor wasn't acting like a Her2+++ tumor. My oncotype Her2 score came back as 11.6. The equivocal/positive cutoff is 11.5. My recurrence score was 67. I'm still not clear on how much chemo and Herceptin will cut that down, or if the fact that my positive score for HER2 is on the low side means that it will be less effective. Both oncs recommended I go ahead with the TCH. I almost wish I hadn't done the oncotype, because that 67 makes me nervous."
---------------end repost----------------If you want to contact her, her screen name is webu
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Lago -
I was ER - 95%, PR - 80%, HER2 Amplified (HER2/CEP17 ratio = 7.6)I follow the Ladies from IL thread so I know that you went to Rush & from looking at your profile I can tell you that one of the oncs I saw was yours. She recommended TCHx4 but she was the only one that recommended any chemo. I also saw someone at Univ of Chi and she was going to investigate the Herceptin alone but we never ended pursuing that.
Ultimately I think we were only going to gain about 2% by doing the TCH so we decided that the risks weren't worth the benefits gained.
Thanks for sharing that info.
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Jenn… only 2%, Yeah I would pass too. Even with only 4chemos is isn't worth it for 2% especially snce you are so ER/PR+. I bet the Tamox will do more for you then Chemo. I'm sure my onc said chemo because she probably wanted you to do herceptin and like you said they don't do that alone yet.0
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hillck - That's interesting. Is it because it is a larger dose than the weekly you were getting with taxol?0
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welcome to all the new posters and thank you to the ones who are further along...giving us so much hope!! I also had my taxotere cut back in dosage since I was getting so sick, they say I am a slow metabolizer. I take the steroid a little longer than the 3 days and taper off it slowly, I guess trying to combat the side effects of the chemo a little longer, but I dont know which is worse the side effects of chemo or the steroids. the good news is I have lost 15lbs I dont recommend this as a wt loss plan! no edema yet
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Hi all- im done masectomy, chemo and Rads. I have my Rx for tamoxifen, but im going to start it in a few weeks once my skin has healed. I have 2nd degree burns from the rads and im in pain. So one that heals i can move onto the next treatment plan. I was worried about what if the chemo didnt work and i wanted a fully body MRI. My onc, didnt suggest it, she said she doesnt want to put too much radiation into my body- its already gone through enough. She said if im not feeling well, then they would investigate. I said well whats next, she said mammogram on the other breast. But for some reason, i wouldnt feel happy with this alone...........ill wait 6 months, then im going to ask for a full body MRI- peace of mind.
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Redinrah....that radiation burn will heal super fast. It will be largely gone within the week I bet. They hurt like the dickens, but are not like regular burns which are from the surface down. These are where no new skin has formed yet....so as soon as that skin starts regenerating...poof! All better. I am so happy radiation is done for you. YUCK! I hated radiation!!
Hillck, maybe you are getting the steroids because the taxol is in there? I have never heard of anyone getting steroids in their herceptin infusion. I was treated at both Sloan Kettering and Emory University. I guess it's one of those things that's just different everywhere.0 -
thanks for the reassurance GEE!
i just want to hit the gym- i havent been since september when i started chemo!
i was bad yesterday, had a slice of cheese cake and moussee. Sugar is bad fo us. ok once in a while right?!?! lol
ive cut down on alchohol big time!!!!! so at least theres a big change somewhere, the gym is coming once ive got long enough hair to gel and then once my skin is healed, so in a bout 1-2 weeks--- woohooo
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Redninrah, I'm jealous that you'll think you'll have enough hair to gel in 1-2 weeks. When did you finish chemo? Don't get me wrong I'm so happy that your skin is healing from radiation and your hair is getting to that place where you can go wigless & scarfless, but I just am waiting and waiting for mine to get there too. I started chemo in July and finished Oct. 28. My hair started to grow back right around Christmas but it is going sooooo slowly. Not only slow in the length, but in filling in to cover my head. The hair in other places on my body is going much faster to my annoyance--I could have done without all of that hair a little longer. The only body place it hasn't returned is my radiated armpit & the nurse said it may never grow back there which is great news for me since with lymphedema in that arm I have to be careful with shaving. Pre-chemo I had super thick hair, but now I look like a men in late stages of balding especially in the front section--picture a friar tuck look. At the end of this month it will have been 4 months, so I'm getting tired of being patient. Oh well, at least it is still winter and the scarves and wigs keep me warm...hoping to get rid of them by summer.
Good for you on cutting down on alcohol and trying on sweets. I think there are things that we all enjoy that we should still allow ourselves occassionally otherwise we might overeat them all in one sitting. And when we do overeat them once in a while we need to give ourselves a break. Each day is a new day to try to stay on track, forget the worries about yesterday!
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I didn't get an Oncotype score either. Frankly I'm not even sure I understand it. My Onc. said since I was 95% ER/PR and HER 2 +++ there was no need to do any more testing. My lab report says Fish test wasn't required either.
When I asked about skipping chemo (thinking maybe Tamox and Herceptin would work just as good), he showed me the survival rate on some chart in his office. It dropped 20% on his chart, but I haven't found that in others.
Oh well.
Two more to go. Hopefully I'll never see chemo again.
But I'm not holding my breath.
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Hi all, I am also a Triple Positive gal. I had a lumpectomy with re-excision, chemo of AC x4 and Abraxane x4 due to being allergic to Taxotere. I just had my last chemo on Friday and I am waiting to get in to see the rad onc to get rads going. My onc has given me my Tamox prescription but said not to take it until rads are done. And of course I'm also in the middle of my year of Herceptin.
Hello to Omaz, librarylil, and Iago who I know from other threads. I am happy to have a group for us triple positive gals to share stories!
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(((waves))) to jsw190
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Hi jsw!!!0
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Thanks for the info Cindy, that makes sense.
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smile_on Didnt lose my hair until 3rd treatment and then didint lose all of it but had it cut real short spikey and ther it stays! Just like I cut it, never did lose all of it but very thin. I too am thinking it will never be long enough to go cammando int the summer..but I am hoping as we are big boaters and swimmers and just want to not have a wig on when its hot. anyway....enough wining! I have cut down tremendously on the alcohol mainly because I dont have the stomach for it, but hoping the new pattern sticks. we live in wine country and its tough LOVE my wine!
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Just got back from my radiation oncologist's office for my 6 week follow up. I was worried I wouldn't make it because my Herceptin was running late and I had that before. Lucky for me they are in the same building. My rad. onc. explained why he didn't do boosts b/c of my TE's, and told me that my skin is healing very very well, but the underlying tissue needs 6-18 months to heal and be ready for reconstruction.
For all of you just ending chemo and beginning Herceptin solo, in my experience it is so much easier. I'm even getting to the point that my stomach doesn't do flip flops when I walk into the infusion room and associating with more recent memories of Herceptin instead of chemo.
It's nice to see so many of us +++ gals joining the board & hearing their experiences and all of the different phases of treatment we are in. A big welcome to all of the newbies that have recently joined on!
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Just found this from the Herceptin drug company website. It lists the percents of lowering risk associated with each type of chemo. Thought it was interesting since so many of us have different types of chemo regimens.
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all went back to work this week (Monday) and as promised I went commando. No head covering. My hair is short but without a hat/wig I find it very liberating. I've tried to funk up the jewelry, etc. The staff all said they like it (yeah its not them). The kids are so cute..they look and some ask if I had a haircut. I've made it fine, but was tired today when I got home. (nothing like chemo tired though). Good to get into a semi normal routine and will plan with the RO Tuesday. It's great to see all of the +++ coming together on this board. Looking forward to the weekend. libraylil0
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Hi girls. I'm another triple positive wanting to join in. Smile-On thanks for the LINK about Herceptin. I am TCH, but missed some of my Herceptin doses due to heart difficulties. Hopefully it was enough. I was highly Her 2, so no FISH test either. Actually I was extremely high numbers for all 3.
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Me too Glad, (being high in all three)...so I'm hoping Tamox and Herceptin can do some serious butt kickin.
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Hi all. I am new to this thread. Just. Diagnosed with stage 1 idc. Labs say er+ 40%, PR+ 14% and ki-67 marker says borderline 15%. Says greater than 20% is high. Once I met with yesterday wants to do chemo. Herceptin and them either tamoxifwn or aromatase inhibitors as she says ki-67 is high. Did not want to o cotype. Don't know about nodes yet but but I have bilateral mastectomy on the 28th. With a 7% recurrence rate if I do nothing and a 95% cure rate if I do it all I too am trying to decide whatever is warranted.
I am meeting with another once at our Med center next week to see her thoughts also. Am likely to settle there.
I am intersected to see if there are studies on taking herceptin alone with tamoxifen
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Hi fluffqueen Sorry you had to join us. Is the pathology from your biopsy? If yes I would wait till after your surgery and the final pathology is in from the bmx surgery to make a decision regarding chemo/herceptin.
If not then are you saying chemo will give you a 2% reduction in recurrence? That doesn't seem like much but the fact that your are HER2+ is something to consider in order to get Herceptin. Tamox or Als seem to be a definite though.
I would ask your onc for the latest studies on Tamox and Herceptin. See if s/he is knowlegable about this issue and what s/he has to say about it. Seems the jury is still out on this.
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I will wait until after to make final decision. If it us in my nodes then its a definite for me. If not I am in that gray area. I questioned the radiation onc about the recurrence rate.today when I had a consult. He said chemo doc is saying with no nodes and her suggestionsit is 95% as she looks at whole body. Radiation doc and surgeon are giving me stats as relate to recurrence in breast. Even though I am in gray area he said it was likely that she though at 55 u had a long time to go and to deal with it with a string punch.
My problem is wondering what happens if it comes back and I've already done all that. What would be left to take?0 -
Fluffqueen. My mom also was worried about your concern "what would be left to take" for me. My personal take on that, and what I felt from doctors was to focus on here and now, and that it is important to work as hard as you can to get all of the cancer out of your body in the 1st attempt and hopefully you won't have to deal with a recurrence, but if you do handle it then. Radiation was somewhat controversial in my case--I only had 1 node positive and had a mastectomy and chemo, but my radiation onc felt that it was needed. My mom worried that if my breast/axilla were radiated then I wouldn't be able to get radiation again in that spot the cancer came back. He said that if I was going to have a recurrence that meant that there was some microscopic cancer hanging around and radiation lowers the chance of recurrence. He didn't think it made sense to "save" treatments. He wasn't willing to give to much of his own opinion at first, but I'm young and asked what he would do if it was his daughter. He said do everything medically possible to attack that cancer. I also have a friend who is stage IV and she had a different, more intense regimen of chemo than the 1st time when she was a III. Hopefully I wasn't rambling too much, and it definitely is your decision to make with your medical team, but for me I wanted to go all-out upfront so I wouldn't have any regrets and what if's if I do have a recurrence later. I'll know I did everything in my power to prevent it.
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