Statistics and herceptin
Comments
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>>> Reminder to change the clocks back one hour:
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my2boys, thank you for such a kind post. But I have to be honest with you and tell you that I don't think any of what I did was really brave as much as it was the sheer will to survive. I was actually more afraid NOT to do the things I did! In a way I sometimes think that I could be called a coward for having a voluntary mastectomy since maybe the brave thing would be to wait it out. But I was more nervous about the possibility that the cancer could come back than I was about losing the second breast. I think we are all courageous because we are all fighting the good fight. And we who are HER2+ are nothing but lucky because he have herceptin as a very potent tool.
Throughout my treatment all I did was put one foot in front of the other and continue to move. But when you do that at least you keep moving, right?
Good luck with all of your treatment. The one thing I did do well throughout the course of treatment, and I am happy to take credit for this, was to keep the faith and remain optimistic. That I wish for everyone here because it really does make the fight a little easier.
May God continue to bless you throughout the course of your treatment.
Trisha
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new to this.. what vaccine is everyone talking about?
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I'm in Canada at the London Cancer Centre, I asked about the vaccine and my onc told me since I was on Herceptin I couldn't have it. I'd prefer the vaccine though. Wouldn't it be nice. I am very tired on Herceptin, but I'm working my butt off really, painting, walking my neighbours dog, raking leaves anywhere in my neighbourhood, anything to keep my heart strong. I still get heart pains but I really believe the stronger my heart the better I will handle herceptin, hope I"m right.
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Hi ladies. I 'd like your opinion. Dx in 2004 and am er+/her2+. had a/c and tamoxifen for 10 months and then switched to arimidex. Wasn't able to get herceptin at the time. Went to new onc today. He said that since it's been 4 years, I probably have a recurrence rate of 10% and that herceptin would drop it to 5%. He said they don't know if herceptin at this stage would be effective for me or not. He is not recommending herceptin....just wanted me to know what the experts are saying. If I want to do the herceptin he will do it. My decision. I work 3, 12 hour shifts a week. he says there are few side effects. Can I do this and still work? Should I do this? What is your opinion? I am going to begin zometa every 6 months for 6 doses since I have osteopenia. Should I do herceptin too?
Dx 1/16/04, IDC, 1.7cm plus malignant microcalcifications, Grade 3, nodes neg, er+/pr-/her2+++, mast, hyster, oophorectomy
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Bre, I suppose I would do the Herceptin in the hope that it will be effective at this date. It seems reasonable that it will indeed snag any remaining CTC's overexpressing Her2. Herceptin is easy. I have no side effects at all. Every three weeks is a small commitment if it lowers your risk from a one in 10 to one in 20. The key with this crazy disease is to fight it aggressively at every opportunity.
By the way, I do not get Muga scans every 12 weeks. but receive echos to monitor my ejection fractions. It is now considered as reliable, and also does not involve radiation. I take CoQ10, Vit E, and L-Carnitine to protect my heart from CHF. It is also a good idea to supplement with the above if you were given AC as a part of your chemo protocol.
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Bre, you may find that you will have to alter your work schedule while on herceptin. Are your three 12 hours shifts clustered together in the week or are they spaced out?
I found that I would be very tire the day of herceptin and also the next day.
I took herceptin for a year (weekly at first and then once every three weeks). As time went on, I became more fatigued from each dose and the fatigued lasted longer.
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Laurel, thanks for the idea to have echos - I had a MUGA scan on Monday and never gave the radiation a thought. Tomorrow I have the surgical consult. Will continue Herceptin every 3 weeks thru August.
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Ok ladies ~ had my 3mo. check up yesterday. Absolutely fabulous!! I shared with Laura already, but I am feeling so great! I am still NED! The dr. said he wished he had a 'herceptin for every cancer' that this is OUR medication! He also talked in great detail about the vaccine (even drew pictures). From what he said, the herceptin is made with 95% human DNA, 5% mouse DNA (gamma globulins fit in there somewhere but I kept having a hard time repeating this so that is when he started to draw ~ LOL). The herceptin works well for us, and the vaccine will be made so that the DNA will be 100% our own human DNA, protecting us, immunizing us for the rest of our lives. The oncologist said that we (us ladies receiving herceptin) will absolutely be able to get this vaccine. He said in following the trials and how it works, we should have this out on the market for us to use in at most 2 - 3 yrs. For the women he had treated in the past that did not have herceptin available to them he recalled and got the insurance companies to approve their use.
I feel very confident in our future here, yes it does not change the fact that we were all diagnosed, but it does give great hope. Thank God!!! We reviewed the PET scan from last week, the tumor markers. I will have another PET at the end of February and a brain MRI (anyone ever had that?). I got concerned with the brain MRI, but he said it is normal and he does this routinely because herceptin cannot cross the brain barrier (although there is another clinical trial out there to see if the pill form can ~ and if that is shown to be effective ~ we will get that as well). My brain looked good on the PET he says. I have not had any headaches since surgery in January (I used to have headaches at least 3x's a week).
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Diana, this is so great! I had to have a brain MRI as soon as I was found to be Her2. This went along with all the other scans. I was told that Her2 bc travels to the brain more often than other BC. ( Also found this out on the her2 web site). So, to have the mri is a good thing. Since you had the chemo, and they got the cancer out of your body... your brain should be ok..LOL....
It is not a hard mri, they put, on your head, a little plastic cage thing.. ( not scary) then they slide you in the mri.. I could still see out my feet area, and it was not scary to me at all... They had to put in a die too... through IV. ( did not have my port in yet)...
Anywhoooo... I am so glad about your report and the info on the vaccine! I wish it was faster coming!
Hey... did they ever talk to you about getting your ovaries out? Any Her2 only gals out there that they wanted to take your ovaries?
I just read in " US News and World Report"( November issue) that they are linking the Her2 gene to Ovarian cancer too????????????? Anyone else heard this? I will be asking my Onco Monday about this. I hope Herceptin works for that too! ( If it is true)
Gods Love,
Laura
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oh geez ~ no one ever said anything about the overies! My dr. just went on and on yesterday about me having more children if I wanted to! I will have to call and see what they say!!! Can you provide a link to the article?
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Diana T, Thank you so much for sharing all your great news, I am so so happy for you!!! I used to get headaches all the time too and now none since my surgery. My doc only re-scans if there are symptoms which I am glad and scard about. I know he will do it if I want so I might talk to him about it when I am done with treatment just to give me more piece of mind. Thank you again! Lauren
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Laura I didn't hear anything about a link between Her2+ and ovarian cancer - do you have a link to that article? I'm trying to get a gynecological oncologist to agree to doing an ooph and hysterectomy on me next summer when I have to undergo open abdominal surgery anyway to repair my hernia........so this information would just add fuel to my fire - thanks for posting the info!
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I do not have the link ladies, I read it at the docs office. It was Us News and world report mag.. I am sure it was Nov issue also...
You might have to look at it at the magazine rack.. sorry... Sometimes these writings are wrong though... I also read in Ladies Home Journal that Her2 BC was found in HALF of BC.. well we know that is not right...
Maybe you could find it online... at the mags site??
Laura
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Diana, Thanks for posting all the info about the vaccine. I am hopeful too and I am so glad to hear positive news about us HER 2 + girls. I hate all the outdated info on the web - you know the stuff about HER 2= tumors being 'aggressive with a poor prognosis' I cannot tell you how reading that stuff turned my blood to icewater last Nov. when I was newly diagnosed. ANYWHOOO (as Laura said), I am relieved that Herceptin exists and that a vaccine is on the horizon. BTW, I read that Tykerb can cross the brain barrier, so they use that when H. no longer works. Always good to have a plan B. Glad your scans were good and may they continue to be so FOREVER!!
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Hi Everyone,
I have not been posting on here for awhile but am definitely reading everything. I had BC and a mastectomy and of course was HER2+.They did the muga scan and said I could not have the Herceptin, so went on to have chemo and radiation. When I was finished chemo they did another muga scan and it was okay. There has been quite a to do whether or not I should have the herceptin or not. They said it doesn't work as good after chemo but there is still a 3 to 4% chance it will help. I figure and percent is worth the try so I am booked for my first treatment next week. I would like to know if any of you think I did the right thing or not.
Bonnie
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Bonnie: I had 16 rounds of pre surgery chemo, which shrunk my tumor 85% or so. Dec 5 I am due for a lumpectomy, followed by radiation for 6 weeks. Part of my chemo included Herceptin for 12 weekly sessions and it will continue every 3 weeks until next August.
If my chemo fogged brain remembers correctly, Herceptin is the wonder drug for Her2+ patients and I cannot see how with chemo it doesn't work so good. I am er/pr negative, which is one factor to add to the formula. My MUGA scans are unchanged from before chemo, after the dose dense A/C, and after 12 weeks of Paclitaxol and Herceptin.
And I was told that radiation after a lumpectomy is standard, with a 40% advantage for cure. Only you can decide your comfort level with treatments, doctors, surgery and all the information available. I am very confident I chose the right course of treatment and trust my doctors - who spend all the time I need for questions. Since I am a widow, live alone, have one son and daughter in law, who does not want to go with me to any doctor appointments, I have to be my own advocate and make my own decisions with the best information I can get. Good luck with finding YOUR comfort level.
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Leftyakanancy
Thank you very much for the information. Trying to find my comfort level is very hard, I don't want to damage my heart, but I also am afraid of the cancer returning. My daughter passed away with breast cancer and I remember very much what she went through, it was just awful she suffered terribly. I think that is part of the problem on deciding what to do.
Thanks again for your help.
Bonnie
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Awwww, ((((( Bonnie )))))). so sorry about your daughter. My husband died of lung cancer in the trauma intensive care unit - hooked to so many things it was hard to find him under all the tubes and wires and a full face oxygen mask. Losing a loved one is just horrible. It has been more than 5 years since my husband died.
I think my (only) son won't discuss much with me because he fears I will go through a similar thing with Breast Cancer. He has avoided any doctor visits with me or a meet up after. My tumor is at 2:00 on the left side and that is where the heart is or close to it. The machines and technicians are many times better than in years past, so I have to go in and trust that God will keep His hand on theirs and guide them to do what is best and safe for me.
No, I am not a religious fanatic, but I have a strong personal faith. Prayer is powerful and I have enlisted a huge group of prayer warriors on my behalf. In addition, I pray for all of you who are dealing with this dang blasted disease. Nancy
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Bonnie,
The damage from Herceptin is almost always reverersible. It is a life saver drug for Her2+.
trust your instincts.
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Bonnie, in the information in the study I read, they didn't have anyone have a serious heart complication on Herceptin. Just some who's MUGA dropped and they had to stop the Herceptin. And everything I have read agrees with what flash said - the damage from Herceptin reverses once Herceptin is stopped.
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Hi! I don't understand what is meant by "met". Thanks for info. Dee
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I think you are referring to what is talked about a lot on these boards, or a word that is in the signature of some ladies. "mets"
It stands for Metastatic or metastasized. When the cancer has moved out side the local occurrence( breast/nodes to other organs.
If that is not what you mean.. let us know... this is the only thing I can think of.
Laura
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Thank you Estepp, that is what I needed to know. There is so much to learn.
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A quick note: someone suggested having echocardiograms instead of MUGA scans, since there is not dye involved withe the echo. It is apparently as effective in monitoring heart function as MUGA scans. I am going to ask for it next time. Also, an electrocardiogram is the other way to monitor heart function -- also none invasive and no dye.
My big worry now is evaluating radiation treatment after surgery on Dec 5. Tomorrow I meet with the rad onco and have a LONG list of questions and possible long term side effects of radiation.
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Nancy, I only get echo's. My onco does like them better.
Good luck with surgery! And let us know what you are told about rads. Is it on your left side, over the heart? I forgot. Mine will be and that is frightening with all we Her2 take for chemo and herceptin and rads over heart... eeeekkkkkkkkkkkkkkkkkkkkkkk
Laura
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I had a Muga the first time, to check my LVEF. Six months later I asked for an echo instead, thinking it would be quicker and easier. Quicker yes, but not easier for me. Because my surgery was in the center of my chest, and I have an 8 inch scar, and they press hard with an echo, it very painful for me, as she was pushing on the scar and scar tissue. If I have to have another, I'll go for a Muga.
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Rad onco appt was today. she explained how they use blocks and potential damage to the heart and lungs is very minimal. I would try to explain, but it involved some artistic rendering of a boob, and I can't draw a straight line with a ruler... All in all, I am getting tired of all that this involves and think I should qualify for an honorary medical degree once I am out of surgery. Just kidding, but sooooooooo much to process. Have a good evening and a good rest of the week. Hugs, Nancy
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Hi everyone,
Here's the link to the US News article: http://health.usnews.com/articles/health/cancer/2008/10/23/lung-cancer-gene-discovery-a-sign-of-cancers-future.html
I think there's probably a lot of links and connections we are not aware of. For example, my son passed away in July from glioblastoma multiforme (brain tumor). What is in his genes, similar to mine, that caused him to develop brain cancer and me, breast cancer? There must be something that we don't yet understand.
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HER2 linked to Ovaran Cancer ?!!!!!!!!!!!!
Are you kidding me...... has anyone heard of this?
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