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-   -   percentage of those who respond to Herceptin (https://her2support.org/vbulletin/showthread.php?t=43892)

Lisajean 03-20-2010 10:08 PM

Re: percentage of those who respond to Herceptin
 
Dear Adrien and Gerri,

Thank you both so much for your replies and for being so quick. I live alone and so hearing back was so meaningful. I am so sorry for your recent losses. Thank you for your support - especially during such a difficult time - I truly and greatly appreciate it.

I just wrote a reply, but, because I was not logged in, I lost it (feel like I am losing my brain).

So this is my second attempt at replying.

I had expanders put in - that is what I was told was the thing to do - when I had the mastectomy. So now I can not have an MRI until the expanders are out. My onc says that is okay. But, obviously, I can not delay having the surgery to get these out for too long. So, my surgery (that was scheduled for 3/29) is now postponed - for about 5 or 6 weeks. I am not sure of the new date. I just told my surgeon I could not do it yet.

The expanders are so uncomfortable. Because of the expanders I am physically uncomfortable all of the time, in pain, have limited mobility in my arms (one frozen shoulder - perhaps from radiation - but either way - it is not cooperating).

I feel so ashamed to be seemingly unable to cope. I just wish I didn't have these expanders in my body.

Thank you so much for getting back to me so quickly. it helps a lot.

Lisa

adrien 03-20-2010 11:19 PM

Re: percentage of those who respond to Herceptin
 
That must be very hard living by yourself and with a baby too. How did you do it. No wonder you're at the end of your string. Don't be hard on yourself.You've been brilliant coping this far.
PS What are expanders?

v-ness 03-21-2010 07:23 AM

Re: percentage of those who respond to Herceptin
 
dear lisajean - i live alone too and i am (and have always been) a bit of a loner on top of that - so it can be lonely business at times when you have breast cancer. one of many great things about this board is that you don't have to be ready to talk about BC at 5:30 on a tuesday night at a real-life support group meeting. if you're freaking out, as so many of us have, you can come here and post at 1 in the morning and almost always find support, or at least feel better for having vented. please don't feel ashamed about being unable to cope. it can be overwhelming. honestly, anti-depressants and/or anti-anxieties such as ativan can be extremely helpful at this time and give you the balance you need. it's nothing to be ashamed of - i'm on them! :)

i started this thread and i am kind of sorry i did because all it did was freak me out more when i was already anxious from my oncologist's 50% reply. nothing against those who responded - just that i finally came to realize that statistics can be pretty useless for those of us in the trenches and only serve to scare. we don't need that. we're not a statistic. someone here has an awesome sig file that says something like 'i'd rather be living anecdotally than dead statistically' and i recall beaming the first time i read it. THAT is the way to think. at herceptin the other day i just sat there feeling confident that it is working just as it worked on my sister's friend's stage 4 mets - all by itself it melted them to nothing. i visualize any leftover cancer cells shriveling up to nothing every time i have herceptin or a jolt of radiation.

i don't know how much time you have for reading with a small child, but i would seriously suggest an excellent book by Musa Mayer called "After Breast Cancer". it is actually a pretty quick read and i highlighted the hell out of my copy. i got it for free from Genentech when i joined her2connection. in fact they recently, for some unknown reason, sent me 3 more books. i'd offer to send you one, but i already passed them on to others in the same boat. but if you contact them, they send out useful emails and you get that book. i also find that it feels better when you at least have some sense of being able to do things to help lower chance of recurrence and there i have found the book 'Anti-Cancer' very useful as well. he doesn't pretend to have any cure-all's, but offers great information on how to be pro-active about your health and life. i like the fact that he is not only a scientist, but also has cancer. he writes in a very accessible way and i don't feel like i'm being bombarded with a 'you must be a raw foodist and take all these supplements blah blah blah' message. it's more like reading it and going 'wow, i think i'll try that and nah, i don't think that's for me' kind of thing. because, after all, even those who've lived and eaten "well" have gotten breast cancer anyway, and then you have julia child who ate meat, used butter and cream to excess, and loved her gin and lived almost 40 years beyond her mastectomy! so.... here's to doing what feels right for yourself. :) i just thought i would share some things that have helped me calm down the freak outs and suffer them less frequently. and this is coming from someone who was hyperventilating the first night i grasped what the hell her2+ breast cancer was from internet - which scared me with overly grim information but then led me to this site! best to you, i hope you feel more peace very soon. valerie

linda b 03-21-2010 09:40 AM

Re: percentage of those who respond to Herceptin
 
I'm also in the category that Herceptin didn't work. I like to be on as few drugs as I can be, and my onc has agreed. Tamoxifen and Herceptin didn't stop a tumor from forming on a vertebrae in my neck, so had a hysterectomy so I could start Armidex, but the side effects were more that what I wanted, so changed to Femara. I go in for a CT scan and an MRI in a few weeks, so am hoping that things are clear. If not, then I will start Tykerb along with the Femara. Does anyone else do that combination?

Lisajean 03-21-2010 10:37 AM

Re: percentage of those who respond to Herceptin
 
Dear Adrien and V-ness, the baby is my nephew. I should crop the picture so that he isn't in it. I just like this picture because, well, I was happy there and it was one week out from my first chemo, still had my hair, still looked like me, even felt like me.

I feel bad - making you think I have a child when I don't. No, I live alone and I am no hero.

Expanders are something they use to allow for reconstruction. These are placed under the pectoral muscle and expanded with saline over time to stretch the muscle to allow for an implant to be put in at a later point. I was assured this was the standard way of proceeding - mastectomy (I had option of just the right side or bi-lateral, I went for bi-lateral) with expanders placed at the same time. So, I ended up with an expander on each side.

I feel like there is an over focus on my looking normal, rather than just my healing and having the best chance of surviving. I was told that I would get through this, that it would be a rough year, year and a half, but, that I would get past it and look back on it as something that is past. I can not even imagine that now. It was nice to hear in the early days, but, a bit hard to believe in now.

Thank you for the advice on taking anti-depressants or ativan. I do have ativan, so maybe I will take that today.

I was pretty sick last night - let myself get dehydrated - maybe it was all the crying I did yesterday :)

My blood pressure got really low and I was upside down fast. Had the paramedics out, if you can believe that. But, I had no way to drive anywhere and it was one in the morning, so that was my only option I felt. I was pretty scared as I had pretty low blood pressure the day before and yet forget to drink much in the way of fluids Fri or Sat. - really stupid. But, everything worked out and hopefully everything else will too.

Thank you for the book recommendations Vy-ness, I really appreciate it - and since I do not have a little one - I should have time to read it.

Does anyone know of any financial resources available to cancer patients. I think that is a big part of my problem - worrying about my financial situation - keeping a roof over my head and insurance.

Thank you all so much!

Love and peace,
Lisa

Roselle 03-21-2010 05:52 PM

Re: percentage of those who respond to Herceptin
 
I happen to like statistics and wanted that information given to me when I had the chance. I also kept it from my friends and family. People react differently to the same statitics. I actually was more afraid that a negative reaction of a loved one would make the information I received seem like bad news and I didn't think it was so bad. I just know that the therapies that I chose to take gave me the best odds for not recurring within 10 years. I try not to focus on the percentage of recurrance but rather on the odds of my survival. Odds are in my favor. We have to remember that being given better odds of no recurrance in 10 years versus the odds of having a recurrance is a good thing. Do we wish those odds were improved? Of course! But lets hold on to the positive side of the statistics. It isn't about living or dying, its about living until I die.

v-ness 03-27-2010 08:25 PM

Re: percentage of those who respond to Herceptin
 
here is a great little essay on statistics and cancer: http://www.ibcsupport.org/median.html

valerie

Nancy L 03-29-2010 10:08 AM

Re: percentage of those who respond to Herceptin
 
I have searched and asked several oncologists for stats on recurrence based on other factors at diagnosis like stage and ER status. Logically I know that more women diagnosed with Stage III breast cancer (like me) recur than those diagnosed with Stage I.

I believe throwing all women who receive Herceptin in the same bucket for 5 yr stats is misleading and unnecessarily frightens many women diagnosed with early stage breast cancer. Women diagnosed with Stage I disease who receive Herceptin are very fortunate and should have great hope for a long healthy life.

Jann 03-29-2010 03:07 PM

Re: percentage of those who respond to Herceptin
 
Hi... new to group, so no picture, no stats ... but I do want to add that I have seen somewhere that Herceptin is "effective" (no explanation of exactly what that meant!) for about 75% of BC patients. I found out pretty quickly that I am one of the "unlucky 25%."

As I'm E/P - and HER2+, I was given six sessions of T/C/H --- my tumor did shrink for the first four rounds of treatment; HOWEVER, it came back to original size and grew quickly during the last two rounds. After that, I had surgery (radical mastectomy with 17/36 nodes +) and then quite a bit of radiation. A week later (by accident: x-ray for possible pneumonia) I discovered that I had numerous tumors in my lungs.

My doctor offered me a study protocol combining Tykerb and Navelbine (simultaneously). I began that and within two months I was NED (no evidence of disease)!

So, don't give up hope. I have remained fairly optimistic (or at least accepting) throughout...even when I was told that I had 2 months to 2 years to live (after the first treatment did not work). Keep positive. Look for humor anywhere you can find it.

When I lost my hair and had wisps of hair waving on top of my head, I complained to one of my chemo nurses who told me that most people did not go completely (and beautifully) bald but looked more like baby chimpanzees! Well, every time after that when I looked in a mirror I thought of a baby chimp (with a goofy grin...the chimp, not me) and laughed (maybe me, too, after all)! That really confirmed to me that attitude is everything!

Look for the positive: because of my radical mastectomy, I no longer sweat on that side, so my deodorant expenses have been cut in half! And my wig looks better than my original hair did, and I now get dressed much faster than I used to!

I also go weekly to a wonderful support group which has 10 to 20 attendees and a couple of really good therapist-leaders. I read somewhere that THOSE statistics state that people who attend support groups live twice as long as people who don't. While I'm sure that those stats relate to in-person groups, I would think that online support groups would raise statistics, too!

Unregistered 12-14-2010 08:00 PM

Will need herceptin
 
Was told by the oncologist that I met for the first time yesterday that he recommends herception after my four rounds of AC, and four rounds of taxol. I'm progesterone and estrogen receptive, and HER2+.

Delaney 12-15-2010 11:11 AM

Re: percentage of those who respond to Herceptin
 
Jann, great news that you are now NED. When were you diagnosed? Not sure that herceptin is working for me either. have been told that I am showing 'partial response'. Not good enough for me!

Unregistered 01-25-2011 04:44 PM

Re: percentage of those who respond to Herceptin
 
If somebody was responding to herceptin and then she is responding no more, what should she do?

Jackie07 01-25-2011 05:17 PM

Re: percentage of those who respond to Herceptin
 
She probably can get Tykerb - because of the smaller molecule size, Tykerb can work when Herceptin doesn't. There are some other new medicine available also. Her doctor should help her get into some of the clinical trials.

Mar16 05-19-2011 10:34 AM

Re: percentage of those who respond to Herceptin
 
How do you know if you are responding to Herceptin? I just had my 3rd round of TCH on Tuesday, but haven't had any tests recently that I would think would show something like this.

I'm confused and worried now, should a test be done?

Thank you for any information.
Mar

v-ness 05-19-2011 10:58 AM

Re: percentage of those who respond to Herceptin
 
you don't know. there isn't test to tell you. you just put your faith in it and think positive unless you find out otherwise. that's how i do it, anyway.

i had TCH like you, finished the H in october. clean mammo and clean MRI under my belt so far and lots of manual exams in between. are you a stage 1?

the way i've come to see it is that we didn't know in advance that we had cancer coming on, and we can't know in advance if it is recurring. all we can do is our best to keep on top of the way our bodies feel and keep current on doctor visits and meds like tamoxifen, topped off with better nutrition and exercise habits.

valerie

candlegranny 05-19-2011 08:29 PM

Re: percentage of those who respond to Herceptin
 
I just finished my year of herceptin. I asked my oncologist monday what was my chances of reoccurence. He said with more than 10 lymph nodes being involved and by completeing one year of herceptin my chances of reoccurance had decreased 30%. He said my changes of reoccrence before herceptin was 80% and to make it easy math we would use 75% and with the third percentage improvement i was looking at 50%chance it would come back. i looked at it as 50% chance it would not come back. my radiologist says i have increased my chances of it not comeing back by doing radiatoin and he says maybe only 30% it will return. I am a bit confused on all this. but i am very glad they have not told me it WILL come back. my oncologist also told me with a year of herceptin it takes care of the over espression of hte cells and makes me like anyone that had breast cancer that was not her 2 neu. aNyone been told that before? My oncologist wanted to see me every 4 months but i asked for every 3 months and he agreed. I will have a PET scan and a MUGA scan before i see him in august.

curryalso@att.net 05-20-2011 09:46 AM

Re: percentage of those who respond to Herceptin
 
Candlegranny

You look and sound wonderful. I finished by herceptin in October. See my oncologist in July.
I see either my surgeon or oncologist every 3 months. I am almost 2 years NED. I believe I will continue to be NED. You have to have positive thinking no matter what - and believe me before the cancer most of my friends would have said I saw the glass half empty. Now I see it glass half full every morning I wake up.

Mar16 05-20-2011 04:02 PM

Re: percentage of those who respond to Herceptin
 
V-ness,
Thanks. I was at stage 2b. So glad to hear your tests have been clean. I hope I will be saying the same in the future.

Wanted to ask, when you went to just getting the herceptin, did you have a lot of different side effects? I was reading some posts yesterday of people that had problems when they went to just the herceptin. Just wondering.

Thank you for your response.

KDR 05-20-2011 04:38 PM

Re: percentage of those who respond to Herceptin
 
Hi, LisaJean,
I lose it all the time. I admit it! It's been one year since my dx, and I still cry when I drive, take a shower, whenever, there's no set time for me. If I'm cleaning my daughter's room, that gets to me. But, after I lose it, I'm back again. We're human, we are allowed. I get a lot of inspiration from this list and I also have been down after reading some of the stats or hearing about someone who's not doing well, or worse. So, it has become my "thing" to remember Kathleen Russell Rich, so far a 20-year metastatic breast cancer survivor who seems to be thriving. It is not an easy road, it is not fair, it is ugly, but you WILL find ways (your own) to cope and fight back.

The other day I had a doctor (outside of my normal center--he was handling a clincial trial I wanted) say to me, "If Herceptin worked for you, you wouldn't be speaking to me, would you?" How does one take that? Who is he to say it doesn't work for me? I get mad, and that helps reignite my fire to fight.
Take care,
Karen

Unregistered 07-19-2011 08:00 AM

Re: percentage of those who respond to Herceptin
 
Im three years 9mo out and Ive been able to let go of all the percentages because I asked my Onc how many woman He has seen reoccur since Herceptin has been used on early stage Breast Cancer. His answer; One. One person reoccurring when those chemo rooms are packed. Its been just great being able to live and not worry so much. God Bless


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