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Old 11-24-2004, 07:08 PM   #1
dede
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In late Jan, early Feb of 2003, I found a lump in my breast...only it was huge!(Turns out it was 8cm x 10 cm) Me, being the good nurse I am, panicked & told my husband, who is also a nurse. He insisted I see the doctor, and I insisted I was just fine, it was too big to be anything but a cyst (or so I told everyone.)

My husband bugged me everyday about making an appointment & everyday I said I would. Finally he said either I made the appointment, or he would. I made it. The appointment was for the last week in Feb, on a Wed. I saw the doc & the wanted to do a mamogram as soon as possible, so had an appointment by that Friday. I almost fainted from the pain!!!

The next Thursday, I was heading to a surgeon to have him look at my left breast. I was not thrilled with this little meeting-here was a surgeon who I had never met, and he was going to look at my breast! Anyway, he wanted to do a biopsy, and I started to get up so I could make the next appointment. He said to Lie down-we are doing this now. He didn't even give me a chance to think it over!

By March 21st, I was seeing the onc, and thinking I would get a little chemo & leave....things are just never that easy, is it??

Well, on the 28th, I found out I was stage 4, Her2+++. I had 6 tumors in my liver & To be honest, can hardly remember anything else that was said. I had chemo, that day, epirubicin & taxatere every 3 weeks forever-but my last dose was in July. I started on Herceptin in August, every 3 weeks. In Jan we found a lymph node which was misbehaving, but wanted to wait 3 mos just to make sure. In April, I started Gemzar with the Herceptin. I came off the Gemzar at the end of July, and have had herceptin every since.

I had ct scans today, & have to wait til Monday for results. I am a little stressed.

I am a nurse, and have had no history of breast cancer in my family. Rarely any cancer...my dad did die of lung ca. I breast fed, and did everything I could do to be healthy, so this was a huge shock to me! No I didn't get mamograms, nor even worry so much about checking...just never thought I would get it.

Now, I tell everyone to never take your health for granted!!!!!!!!!!
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Old 11-29-2004, 07:26 AM   #2
Guest-Cindi_*
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Dede,

Waiting for scan results is the WORST. As much as you try to just go on with your daily living...the waiting just looms over you. I will pray that your results are good and you can continue on the Herceptin.

You are so right when you say...never take your health for granted. I did all of those "right things" that you mentioned and still, BC.

I'll be praying.

Peace,

Cindi.
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Old 12-21-2004, 10:47 AM   #3
Jeannie
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Dear Dede-

I know I am late with any reply but just came back to this board after some months- and saw your post... I hope that you have not given up any hope on your treatment..... I personally know several stage iv women who have beaten many survival rates and have been successfully battling for several years already...also had to find the "combo" that worked to diminish tumors (enjoying NED results) and also able to stablize things...it can be done- Herceptin is a wonderful for for anyone whose Her + .....


Best wishes and many prayers for you and Keep up your heart... you can do this- there are many out here who are!!!!

Jeannie P.
-Turn the Whisper into a Roar -
My Avocation for my friend J Walsh~
Please click here:
Let's not whisper about breast cancer, let's roar
http://www.whisperintoaroar.org/
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Old 01-01-2005, 05:24 AM   #4
dede
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Update:My scan went well (praise God) and looks like nothing active. He said 2 small spots in my chest, but currently nothing to worry about. I will get scans again in Feb or March.

I have decided this is NOT on my list of things to do in my life, and I have checked ALL of my lists!
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Old 01-10-2005, 05:51 PM   #5
Vickie
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Dear Dede,

You hang in.....because you can! I've been stage 4 and on herceptin since July 01 (initial diagnosis & treatments May 97)! Although I've had other treatments mixed in (taxatere, navalbine, gemzar, xeloda...) mixed in throughout the years, I'm still here. Herceptin has been a mainstay and I guess I have to believe it's helping!

Here's to wishing us all clean CT/PET scans this New Year and future!

Vickie
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Old 07-16-2005, 08:17 PM   #6
Gina Popp
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Dear Dede,

My story is very similar to yours. I was 33 years old and very successful, but crazy busy. I found a lump that seemed to get bigger and bigger very quickly, but my son was scheduled for a tonsillectomy and my two jobs were taking off...I was about to close my company's most successful financial year (over $2 million in income), when I found it, so I ignored it. Surely it was like the hundreds of cysts my mom had always had...it was too big to be cancer...Then, one day, my sister came to visit and help with my son's recovery from surgery. When she felt it, she "knew" it was cancer because it was so hard and textbook of all she had read, after having a scare or two herself. She insisted I see a doctor. I put it off. When I did, my OB-Gyn looked dazed. He had just examined me a few months before and felt nothing. He sent me for mammogram immediately. Because of its huge star burst appearance the radiologist was pretty sure it was breast cancer, but I was sent for biopsy anyway a week later. The biopsy came back positive, I was scheduled for surgery, modified radical, the next week with chest block instead of general anesthesia. 5 cm tumor ER neg; PR neg; Her-2 3+ (although we didn't know the her-2 part back then); 6 of 14 lymph nodes positive for cancer and a suspicious spot on the top of the right lobe of the liver. At first they kept me a Stage 3 b, after the liver biopsy was inconclusive for cancer and they put a port in my good arm and I started Chemo immediately. In those days it was CAF for months and months...then two months of taxotere at 100 per cent full strength, then two months of intensive radiation. The irony of it all, was that just before I finished my radiation treatments, my beloved OB-GYN dropped dead of cancer mets to the lungs, spine, and brain...the very man who had diagnosed me and saved my life was unable to save his own. Then my grandmother passed away at 91 the next month. Almost a year of extreme chemo and agressive radiation bought me about 5 months remission but by the spring of 1999, the cancer had metted to my entire liver, lesions as big as quarters, nickles, and dimes according to the radiologist who was freaked out when he saw them, after reading my clean scans only a few months before. This time, a second liver biopsy confirmed the worst...breast cancer mets to the liver and I was given two months to live and told to quickly put my affairs in order.... When I refused to die so easily, one oncologist had the "new idea" at that time to see if the tumors in my liver were Her-2 positive and then we also went back to the hospital that had done the original surgery and pulled the block that had my original tumor on it and we tested that for Her-2. All were positive, so my onc agreed that we could at least give the newly approved drug, Herceptin, a try. He wanted to put me back on Taxotere with Herceptin or some combo of chemo with herceptin as the studies seemed to be showing that Herceptin alone was not enough. I had in the mean time returned to grad school and begun studied biotechnology and proteomics at the time and argued with him to please let me just start with the herceptin alone. If it did not work, we would advance to the chemo combo. Since he was very young and very smart for an onc, he had already been charting my CA 27/29 tumor markers on a graph from Labcorp. After only ONE dose of Herceptin, the Ca 27-29 dropped straight down, in only 5 weeks of the regular dosing the markers stablized to normal. A CT scan showed the lesions decreasing across the board. I was stable for a year but the next spring, the lesions reappeared in the liver and I returned to herceptin for about 6 weeks...got another year remission, then the cancer returned the next spring...blah blah...eventually, my CA 27/29 was correlated to the serum her-2 marker and now after much trial and error, many terrifying scars, and mets here and there...we have found the appropriate dosing to control the markers in the blood, which via extension, control the mets. I always, STRONGLY, encourage everyone going through this to chart their CA 27/29 in relation to their Serum her-2 at least monthly and then, use the markers as biofeedback, using more or less Herceptin as necessary. This also saves a lot of toxicity to the heart as there is no reason to be taking it EVERY SINGLE week if your markers are low...in fact, in my experience, it is when the numbers go too low that the heart gets damaged, but that is just anecdotal, not proven. Get your own data, be responsible for your own health. You can do it. I am now eight years out from a Stage IV diagnosis and doing great. I still use limited amounts of herceptin every six weeks and more if I need it. I include a lot of oleic acid in my diet which works synergistically with the Herceptin and reduces tumor burden by more than 90 per cent and is not toxic. Good luck. If you have questions, my email is GPopp@Comcast.net. Take care.
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Old 07-18-2005, 07:24 AM   #7
joy
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Wow Gina, that is a lot of information and a great story. Thank you for sharing this. i am going to take some of this to my specialist.
Love, Joy
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Old 07-18-2005, 11:43 AM   #8
*_Julie_*
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Gina,

I am so thrilled read your story. Could you tell in which form do you take oleic acid and how much dosage. I will relly help me. I am on just Herceptin now after my chemo ended in April 05. I am stage3, her2+++ and er-/pr-

Thanks in advance
Julie
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Old 07-18-2005, 01:59 PM   #9
Helen
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Gina,
Thank you for sharing your story. It gives me hope since I was just diagnosed last month with stage 4 BC, her 2 +++ with liver metz (mild size tumor). I will start on Wednesday on herceptin, taxotere/carbo. I believe my dose on herceptin is weekly and once every 3 weeks for 6 treatments on the chemo drugs.

Helen
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Old 07-24-2005, 06:59 PM   #10
J Mc
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Hi Gina,

Thanks for your story. You are very knowledgable. I'm curious about the dose of Herception; that is the correlation between CA27-29 and serum Her2. The question I have is, what is the range of the Herceptin doses that you have been getting?

Thanks much.

J Mc
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Old 08-11-2005, 01:24 AM   #11
Gina
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Hi, folks..been off the site for a bit...if any of you want to discuss further just email me at home GPOPP@Comcast.net.

DEDE how are you doing?? Julie?? As for the oleic acid...everything in moderation...I just mostly switched from other fats to canola and olive oil...will share more later..but it is late for me, goodnite all, gina
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Old 08-11-2005, 06:18 PM   #12
Sherri
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Dear Gina,

You are brave and I'm glad you are doing great. I like to ask you about Olive Oil. Do you use it in cooking or just take one or few TBS a day?
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Old 08-14-2005, 01:01 AM   #13
Gina
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Hi J Mc and everybody,

To answer J Mc's question. In a nutshell, I use the data I get from regularly taking my Serum Her-2 and CA 27/29 markers as biofeedback to control when and how much herceptin I take. And get scanned regularly as a back-up, lest, I would pick up a different, non-her-2 related cancer. It is very simple really and very non-toxic, but there is no guarantee it will work for others. Early on, it was discovered that I had the most unusually GRAPHIC response to HERCEPTIN with my CA 27.29. Way back then, I had a REALLY good/young topnotch, highly logical, incredibly intellegent onc who was smart enough, even back in 1998 to be charting my CA 27/29 on a regular basis. As he was more or less doing this anyway, he was shocked to see what happened after I took my first dose of HERCEPTIN (after being given about 2 months to live with horribly agressive liver mets...prior to getting the herceptin, he sent my breast tumor (primary) back to be checked for HER-2 and had my liver biopsied to check for it there too. The liver biopsy and the tumor block from my breast confirmed the same thing: ER-/PR- Her-2 3+, and so he convinced my insurance to pay for the herceptin as it had only been approved by the FDA for about 5 months when I started it but he could PROVE I was her-2 positive.)

Anyway, the very first week I took a loading dose of 4mg/per kg of body weight, my CA 27/29 dropped STRAIGHT down..(I still have all the graphs) and the next week, straight down even more...in only 5 doses of Herceptin (five weeks : Loading dose 4 then 2 each week thereafter). At that time, we did not know much about Herceptin 's long range effects, so once the numbers normalized I made the decision to stop taking it...(being concerned about my heart as when I started chemo in 98 my MUGA was a weak 45 and I had had months of very agressive CAF and the adriamycin is very hard on the heart and I was concerned that I might "control" the cancer by staying on the herceptin, but have a heart attack or congestive heart failure doing so and die anyway as there is a LOT of coronary disease in my family...sighh...Anyway, only 5 doses of herceptin bought me nearly a YEAR of NED...incredible isn't it...but the whole time I was off, the only way my onc would agree to me NOT taking Herceptin (as he had recommended the golden standard of 2mg/per kg of body weight to be continued till I died), was if I submitted myself at first to weekly CA 27/29 and other Bloodtests, which later moved out to monthly...etc. I probably have more her-2 specific bloodtests graphs and real empirical data results in these last 8 years than almost anybody. I have saved it all in a series of 8 page-protected 4" binders...sigh...to be so anal....

My onc was a true hemotologist first/then an oncologist. He was fascinated with the various signatures different cancers left in the bloodwork...almost like footprints in the sand. I learned a lot from him. Anyway, we had a plan...he "KNEW" the cancer would return and so we agreed that when the CA 27/29 got to a certain point, we would go back on herceptin...same loading dose 4mg...then back to 2mg...We did this, it worked great...I took 6 cycles , got the numbers down to low (we liked to keep them around 8) got another year ned (but remember I was using diet and was very motivated to live a clean life as I was a single parent of a very small son), then it came back again (liver) (same time frame every year...that is where I first got my inkling that it could be somewhat microbial related because it seemed to be displaying a circadian rhythm of sorts...blah, blah Anyway, long story short...that oncologist left the area for greener pastures in the south and so with other oncologists, I pursued many different dosing strategies...I tried taking 12 very strong doses one year (loading 8, then 6, then 4 then 2, 2, 2, & 2), but that only bought me ned about the same time, another year...started going up same time same place...(in me, her-2 cancer seems to worsen from Spring into the Summer and lessen Fall into winter...again, this is just something parculiar to me I suppose...) We tried various other strategies...but because of the family heart history and my own history with CAF, I was reluctant to take the herceptin, even at the minimal dose of 2mg for the rest of my life. But my new oncologist was concerned that by letting the numbers go out of control, I was just asking for more trouble, and another year later, she was proven quite right when I ended up with her-2 numbers over 600 with both BONE and PELVIC wall mets in addition to the off and on bouts in the liver I had almost always had...blah blah..smile.

About that time, the research was coming out of Canada about some folks doing 6mg every 3 weeks (you can look this up on the internet), so my onc and I compromised, and I started taking 6mg every 3 weeks, instead of 2mg every week, but after only about 4 or 5 rounds of this..., my heart started giving me problems...serious problems...quite a scare, and by then, I had been charting both my CA 27/29 numbers AND the serum Her-2 (since it first became commercially available in 2003 from Specialty Labs) and realized that my CA 27/29 was 3 and the Serum her 2 way low, and I knew that the one place YOU NEED HER-2 is the heart muscle, so I just refused to take herceptin till my numbers indicated that I needed to do so. Although my onc was FURIOUS, my heart completely recovered (recent MUGA 61--I walk a lot smile), and then, really more to calm down my onc than for my own benefit...I agree to do 6mg every SIX weeks as long as my numbers looked ok. ONC agreed and I have been doing that quite sucessfully for more than a year now, but still, this spring and summer has posed the same challenge as every year in the past 8, my numbers just tend to "WANT" to go up this time of year...so what I do is FIRST try to modify my diet and non-toxic regimen to bring the numbers around (my regimen was ... in hindsight discovered to be accidentally rich in oleic acid...but it is rich in many things so we can not be certain, but I do believe Dr. Menendez is on to something...from my own positive experience). And if I can not bring the numbers to where we want them with my diet alone, the onc will let me take "an extra" herceptin cycle at the 3-week point. So instead of one in 6 weeks of 6mg I will have 2 6mg in 6 weeks. Usually, that is all it will take...no big deal...now, but just a few years ago, when my markers went up, I was a true basket case...smile...HOPE some of this is helpful...but again, I am very unusual, my case is complex, and I do my own research , a LOT of alternative med, and I direct my own treatment. My onc even made me sign a paper to hold her harmless and every appointment she writes in my chart that she completely disagrees with what I am doing as it is not protocol...to our knowledge, I am the only person taking herceptin in such an "outside the box" fashion, but as I always LOVE TO SAY..smile...protocol or no, I AM STILL HERE, and doing quite well by the way...Because you know what?? At the end of the day (which this is getting to be she said looking at the clock..smile) it is YOUR body and YOUR life. YOU ARE NOT just your HER-2 cancer...you may be a mother, a sister, a daughter, a wife, a doctor. You may have other medical issues that will kill you faster than a slightly elevated tumor marker such as heart failure or infection from a non-necessary port...Sometimes, I worry that cancer patients rarely die of cancer..., because there is just too much that can get to them first... When dealing with this illness, you must STRIVE to look at the whole BIG PICTURE, as ugly as it is...and insist on seeing, touching, and feeling as much empirical data as you can your hands on, and then listen to your gut to make the final decision that your DOCTOR, really can't...Bottom line...keep your Ca 27/29 numbers between 5 and 10 and your Serum her-2 numbers below 15 or 12, depending on the assay, scan regularly, but not too often, and GET your life back. That is what I wish for us all, and every day, I continue to do research into the root cause of her-2 mediated cancers to that end...but, it is very complicated....Best of luck to us all, Gina
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Old 10-23-2005, 05:21 PM   #14
LisaB
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Helen,
It sounds like you are walking the same path I did. In March '03 I was diagnosed with stage IV with liver mets (16 positive nodes, chest wall mets, Her-2 +3). Took 6 doses of taxotere/carbo with Herceptin every 3 weeks. It was a tough course but well worth it. I have been NED since the PET after the last dose. I still take Herceptin every 3 weeks over a 90 minute drip. I am also ER/PR positive so I am also on Tamoxifen. I hope and pray that you are doing well.
Lisa
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Old 10-23-2005, 06:46 PM   #15
eric
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Gina, you recommend keeping the CA 27/29 between 5 and 10 yet my understanding is that under 38 is considered normal, so I'm curious as to why?

Eric
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Old 07-20-2006, 12:29 PM   #16
Marily
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Looking for anyone using test ie, Elisa, Bayer to controle Herceptin use

Hi, I know I have read several posts here of some of you using different test numbers to controle your dose of Herceptin. One of you started my search for answers here... ? scientist, chemist??? using labs for quite some time to decide dose etc???? What do you watch.. what dose of herceptin and when do you restart it? I have been trying to decrease the dose, or the space between Herceptin administration... since I am having Allergic reaction to the Herceptin after 5 years on it. I have been doing the Elisa and my numbers with weekly Herceptin run 8.8, 7.5 and we have been doing them about every two weeks.. I have never had other cancer numbers with my cancer.. even at my worst they were normal? I really need help in how you are managing your Cancer Please. My Doctor does not feel she knows anything about this and so is leaving it up to Me!! and I am feeling very lost. Need ANY INFORMATION PLEASE,
hugs Marily
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Old 07-24-2006, 02:32 AM   #17
Jade
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Smile Hi Marily

I'm sorry I can't be of much help, but I urge you to repost on the main board as I'm sure you'll get a better response.

All the best to you,
Jade
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Old 07-26-2006, 02:11 PM   #18
dede10
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I am back, again, and after March '03-July '03 on epirubicin & Taxatere, then started herceptin q 3 weeks until scans showed misbehavior of some lymph nodes in March...back on Gemzar + Herceptin for 4 mos-then returned to just herceptin til Feb of this year. Starting Feb, I was on Gemzar for a week, then took a week off so I could have a new port put in (The old one had a bend in the tip), so went in the hospital for that-and found blood clots. Ended up with an angiplasty, & a new port & a 1 day stay in ICU.

Then back on gemzar & heceptin. I was suppose to be on gemzar 3 weeks on, then 1 one off...but it took me twice as long to do it. One week on & 1 week off. I ended up only doing 2 rounds, took 6 weeks off, PET and CT's done last week. Now on Navalbine every week, along with herceptin.

This has not been a good year.................
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