Herceptin, post chemo or not?

[Mar]

I am seeking info from fellow her2/neu breast cancer patients who took their chemo BEFORE Herceptin was approved for first line cancer patients. I completed my chemo about 16 months ago. I took Adremycin, Cytoxin, and then Taxotere. Taxotere has caused me awful longterm side effects of Neuropathy. Now that Herceptin is approved and a part of the standard chem treatment for Her2/neu patients should I try to take it NOW in an attempt to keep my cancer in remission for a longer period? I dread the thought of more chemo but I sure don't want my cancer to return. Mine was grade 3, with high Her2/neu with overexpression levels, and was in three of my lymph nodes. I sure am worried/scared. I am only 58 yesrs old. Any info or thoughts anybody might have would be helpful. Thanks. Mar

[Unregistered]

Hi Mar,

Type in your search button late herceptin to see the discussion on this topic.

[RhondaH]

dx 2/1/05, Stage 1, no nodes, ER-/PR-, Grade 3, Her2+ (FISH 3.16...weak). Had partial mastecomy 2/7/05, finished 6 rounds of dose dense TEC(Taxotere, Epirubin and Cytoxan) 5/18/05, finished 33 rads 8/1/05. Originally my onc wasn't going to give me Herceptin, but 2 days prior to my last chemo the ASCO news broke so when I went to see him 2 weeks after my last rad he said "This is what I propose, the good news you will get Herceptin, the bad news is that you will get it every 3 weeks for a year"...to ME this was not bad news. I know what you mean about the Taxotere as my fingers and toes are constantly numb/tingly, some days better than others. I would go for it...every little bit helps. The only issue I have w/ Herceptin is sinus...for ME BAAAAD.

Rhonda Hoffman

[Mar]

What Did Herceptin Do To Your Sinus?

[Andrea Barnett Budin]

In '95 I had a tumor the size of my hand in my left breast. It wasn't "a lumP', it was a general hardness. Invasive lobular carcinoma. 4 lymph nodes out 18 malignant. I had a mastectomy and tram flap reconstructive surgery. 4 Adriamycin and 8 every 3 wks. CMF. Chest/abdomen/pelvic CT scans every 8 wks. DONE. In Aug. '98 my every 4 month blood showed VERY SLIGHTLY ELEVATED liver enzymes. I wouldn't worry about it said doc #1. 4 months later same scenario. It could be coming from the Tamoxifen you're on, said doc #2. Don't worry. 4 months later, I swear, back w/doc #1 he tells me to forget about it. I ask for a liver sono. Didn't even know what to ask for. I guess that could be substantiated. Okay, if you want, I'll write a scrip for an abdominal sonogram. That doc sent me for a CT scan. Liver biopsy followed. I was lucky they got right in in 1 try. I was not lucky in that it showed a malignancy. Multiple tumors throughout my liver, and subsequent tests showed it was growing before our eyes. I asked to be tested for Her-2NEU, trying to get in a clinical trial, thinking somehow I would be +. Docs said you can't wait. Start chemo NOW. (Besides, I didn't qualify for trials. Had too much Adriamycin.) Sept. '98 I began Taxotere. You have a very aggressive form of breast cancer. Taxotere is the most powerful weapon we have in our arsenal. It was damn tough. I had every side effect possible. Still, each 8 wk. CT scan showed some shrinkage. I got exact measurements of each and every tumor. My husband would figure the sq. root and we'd cheer. At the end of May '99 I just could not tolerate any more. (BY the way, Refresh + every single hour a day helps the tearing issue, and I would guess help the sinus problem. Ayr, also just saline and cannot be overused is great for sinus issues.) I was HER2+ 80%. I was elated. Because w/ me they knew what was causing my cancer, my defective Her2 gene. And, at the end of Sept. '98 the FDA fast-tracked Herceptin to be available for everyone. I began in Nov. '98 (side-tracked a bit my shingles due to Taxotere). Found it fast. Treated it immediately. 10 days later, after a hell of a lot of pain, I was good to go. After May '99 I continued Herceptin wkly. In Jan. '01 I started taking Herceptin triple dosages every 3 wks. I believe it has saved my life. I continue on it. I've spoken to Ginger. Neither of us feels comfortable stopping it. I see it as insulin for a diabetic. I get ECHO cardiograms every 6 months to be sure the possible heart problems are averted. I have a small amount of fluid around the heart. That remains stable, which is good. My EF (ejection fraction) is 55%, and I feel great. Occasionally my red blood cells plummet. Procrit got it right up in a wk. Now Aranesp does the job, and better. It keeps my #s up for longer. Living on Herceptin means fatigue, especially when the red cells are low. I'm 61 and have the same memory issues my 30 something daughters have. I don't think it's age, and I don't think it's chemo brain. I have lived to welcome 4 grandchildren into this world. I am active, joyful, serene, passionate about writing and getting the Message out there that WE ALL HAVE THE POWER TO HEAL. THE MIND/BODY CONNECTION IS NOT A PHENOMENON. IT IS A FACT. When FEAR strikes, as it does from time to time -- I walk right through it. I experience it if I have no choice, I even wallow for a few hours -- then I get back to basics. I consciously instruct my body to HEAL. HEAL. STAY HEALTHY AND WELL. I get back to my core. I meditate. Visualize myself far into the future, in vivid detail. I carry that image w/ me wherever I go. I feel in charge. I feel connected to my Spirit, which is all powerful. I feel connected to Life itself. I'm in sync. And I'm staying put. YOU DO THE SAME!

With love and healing energy sent to all you brave Souls out there!
ANDI

[kristen8594]

Hi Mar,

Wondering if you have found any info to date in regards to late herceptin. I sent you an email but thought I would also respond here.
I am in the same boat and trying to figure out what, if anything, I can do or should do to get herceptin now after two years post chemo.
If anybody has any information in regards to late herceptin, please let me know.
Thanks so much!
Kristen

[Becky]

My story is very much like Rhonda's. I had 4 dense dose AC and 4 dense dose Taxol (last one Jan 31, 05). 6 wks later had 34 rads and after that there was the May ASCO meeting. Started Herceptin a few weeks later in June (after ECHO to confirm my heart survived Chemo). I am over 1/2 done with one year (which is all I think I will be able to get unless the 2 yr data comes out early and shows even more benefit). I had a 1.9cm tumor, grade 2, Her2(3+), ER 50%, PR negative, one node involved (2 less than 1.8mm pts of focus).


Go for the Herceptin if you can. I figure it this way (for my situation) - everything you do reduces risk of recurrence or death. I could have just removed the tumor and node and done nothing else. My percent of survival might have been only 5% - 10%. Add rads only to that and it goes up to 30% - 45%. Add dense dose chemo to that and it goes to about 70%. Add Arimidex to that and it goes to 75%. Add Herceptin to that and it goes to 88% - I prefer 88% to 75% (I prefer 100% the best and was never a gambling girl to begin with hence trying to put the best odds in my favor - I figure that sooner or later all humans crap out but I want it to be a surprise).

Herceptin is an easy drug to take, especially every 3 weeks. You might get tired for a few days, make a headache and a runny nose but its nothing like chemo because it is not chemo, it is immunotherapy or a biological drug. Don't be scared of it. It can be your friend. And you are using it as an adjuvant. It just might do the job so you never have to use it or anything else ever again.

We are all here for you no matter what so let us know how you feel and how you are doing.

Warmest regards and wishes

Becky

[AlaskaAngel]

Would love to do either arm of a HER2 clinical trial for NEDs who finished treatment outside the "magical" limits announced by ASCO. For a group of oncologists who supposedly support evidence-based treatment, they sure let those like me down with a THUD.

AlaskaAngel

[Sheryl]

I have been researching Herceptin & found there is a C-myc Gene that influences response to Herceptin. An OncoEd reporter- Dr.Charles H.Weaver reported on 12/14/05: Among patients with amplification of both HER2 & C-myc Gene, the addition ot Herceptin to chemotherapy reduced the risk of cancer recurrence by 76& & reduced death by 64%. Among patients with amplification of HER2 alone, the addition of Herceptin to chemo reduced recurrence risk by only 37% & did not reduce the risk of death. Has your oncologist mentioned this gene testing? Sheryl

[Sheryl]

I share similar concerns since I am now 20 months out from my last chemo treatments. My oncologist suggested a year of Herceptin after the news from ASCO this past summer '05. At that time it had been 15 mo.since my chemo ended. I was concerned about cardiac risks,etc.& had many consults with other MDs & even contacted Genetech directly about the risks. There were differeing opinions re: effectiveness of Herceptin that long after chemo. I contacted leading experts in Finland & Belgium- both MDs mentioned that Herceptin efficacy might be due to using it with or shortly after chemo. Therefore, at present I have not taken Herceptin & am not sure it would be worth the risk of side effects since it might not be a sure thing anyway. There is no info re: long term effects or how Herceptin protects past the time it is given. I rercently read about a C-myc gene which might influence one's response to Herceptin. Has your oncologist mentioned this gene? I would like to stay in touch with you. Sheryl

[AlaskaAngel]

Sheryl, my onc is a general medical onc and not a breast care specialist and when I brought up the issue of PTEN testing, etc. he brushed that off entirely. He has approved Herceptin for me whereas the breast specialist onc I consulted would not. I am listening to the discussion on the main board about testing for various characteristics prior to deciding what to do. I appreciate your suggestion. Although there seems to be no real proof that Herceptin would not work when given farther out from original treatment, is there any real proof that it doesn't help, especially with delayed recurrences? I think it is truly ugly that oncologists have decided they don't care enough to document it one way or the other for us. (I still think they believe most of us died already.) Perhaps they will provide us with a standardized panel of these cancer tests -- but so far all they have done for us is make it harder for us to get traztuzumab OR OncoDx (since that too is recommended for those who haven't yet had treatment). So what are we going to be excluded from next?

AlaskaAngel

[newgg]

Just posted on another thread that I am now among the "late" herceptin group. Also did the A/C and taxetere and rads and finished chemo 1 year ago. Have been having discussion with doc for several months (sharing info from this group) and after the conference in Texas...he was all for giving me herceptin. Even agreed to every 3 weeks. Was stage IIa, one node positive....now NED !!

[Unregistered]

Hello,
My mother was recently diagnosed with breast cancer in September 2005. She started adriamycin chemotherapy on the 22nd. Complete 4 doses and had a mastectomy about a month ago. We went to see the doctor and he stated something about her2 receptors. He stated that they were gonna run tests again to test for her2 receptors and we would have to go an additional therapy besides the chemo. I decided to do some research about this and found this support group. She's gonna start her chemotherapy with taxol next week on the february 14th. She was recently diagnosed with DM. One of the problems the doctor mentioned with this drug was numbness and tingling in the hands and feet. Is there anyone out there who has received this drug and what was the most common feeling after chemo? Should I ask about herceptin? My mom is really devastated by the news and this is all new to me. AFter reading all the stories posted, I guess I am heading on a long road. Help!
Rhonda

[AlaskaAngel]

Welcome to a very good place to learn, Rhonda. We have a Rhonda H on this board also, so to avoid confusion you might want to use a last initial when posting.

Although there are a lot of awful things about breast cancer, there are some good ones too. The drug therapy your mom is getting is more effective than the treatments that were used when I was treated, so I can't speak personally to answer your question about Taxol. Being HER2 positive used to be considered a gloomy thing, but now with traztuzumab (Herceptin) to treat it, that too is a really good thing. Its wonderful to have the support of a daughter through it all and I hope you will try posting on the main board about your questions about HER2 and traztuzumab. Other breast cancer sites that might be helpful too are bcans.org (a Canadian site) or bcsupport.org.

Best wishes,

AlaskaAngel

[Sheryl]

Treatment with Taxotere affects patients differently. I personally had only slight side effects of tingling sensations down my one leg several months after receiving the chemo. It cleared up without any permanent sensory changes within several weeks. I am glad I was treated with Taxotere since it seems to be effective for aggressive type breast cancer. Herceptin for HER-2 + seems to now be standard treatment for newly diagnosed patients since it supposedly works best when given immediately after chemo. Best wishes to your mother. Be sure that she asks her oncologist for specific info on Taxotere & known side effects. Sheryl

[katcdale]

Hi Thread!
I took Herceptin half way through my 12(1/wk) of major Chemo. Now, I'm taking Herceptin every 3 wks for at least one year as preventative reoccurrence. Just make sure your FISH test was positive on your original biopsy. It's really not so bad--BETTER than what the alternative could be, since HER2 positive Breast Cancer is the most Aggressive!!! I am wondering about the percentages of the Cancer reoccurring With/or Without the Herceptin.
Katcdale@yahoo.com

[katcdale@yahoo.com]

Sorry I'm late on discussion, but just found site. I took the Taxol (12 weekly) following the first 4 Adriamycin/Cytoxin Chemo. mixtures. Yes, my feet did start feeling tingly and I had some numbing of my feet. But, it wasn't too bad. Most of the numbness and tingling goes away with time. After the chemo., I had radiation treatments and also the Herceptin, which I am still taking for the next 9-10 months. I was FISH Positive and I had already done an ICH orIHC) Test which came out a 3+, but having a "FISH Positive" really determines if Herceptin will help. My Question is "What Is The Survival Rate Of Taking Herceptin OR NOT Taking Herceptin???WHO OUT THERE KNOWS???????? and for HOW LONG Does it hold the cancer off either way???????

[katcdale@yahoo.com]

I started Hercetin Halfway through my Taxol . I had 6 taxols with herceptin and then 6 herceptins alone each week for 12 weeks plus radiation after an intial masct. too. I am still taking Herceptin, but a stronger dose just every 4 wks now. My Onc. said to take it for at least a year. He is foreign and doesn't give me alot of details, tho. My husband is a pharmacist-- well, he just says that the drugs are the SAme anyplace you go for chemo.
I want to know HOW long do people survive With or Without the Herceptin as a norm??? My foreign Onc., just says, don't worry!!!!! (NO EXPanations) Either he thinks I'm to stupid to understand, or he just can't explain it in English. CAN ANYBODY OUT THERE HELP ME????????????????????kat

[katcdale@yahoo.com]

To answer someone's ???, but not mine----NO, the Herceptin has NOT bothered my Sinuses.

[katcdale@yahoo.com]

Sorry again--I should have told everyone that I am taking Herceptin every
3 Week, now, but it is a stronger dose than I had when taking it every week.
KAT

[Mar]

I sometimes feel so amazed, astonished, and down right disbelieving when all I read are when people write about Taxotere's side effects on this web site and they sound like story book outcomes. All I read here are that the side effects are temporary and/or mild and everything is rosey in a few months.
For me, and many more,Taxotere caused such long term, life altering problems that have NOT gone away or decreased in severity.

I suffer from SEVERE Neuropathy pain and muscle weakness in my legs, arms, and groin area that some days require high powered pain medication just to bear it. I am blessed though to have a wonderful husband who has been with me every step of this journey, along with my daughter, son in law, and three grandkids. That is so important. In addition, I have personally met 10 other women and two men (in the last year alone) who also have SEVERE and LONG TERM side effects from taking Taxotere. NOT EVERYONE escapes permanant damage from this drug or from one of the others now given.

It would be WRONG to mislead people into believing if they suffer the way I do that they are alone having this happen to them. It is also WRONG to suggest that everyone goes on as if taking a toxic, sometimes deadly chemo drug is not without its POSSIBLE long term problems. The secret is to read about all the possible side effects and be watchful as you take the drug, any drug. IF Taxotere,or any of the other chemo drugs start being too toxic to your body, there are other drugs they can switch you to before it damages your body before it is too late. Some of us are slow to empty these drugs from our bodies and some of our bodies can't tolerate a particular drug. Don't let near 100% rosey messages lull you into believing nothing but great outcome happen from taking Taxotere or any of the other chemo drugs. Don't be afraid either, but don't be an "unthinking" chemo patient. I actually met people while taking chemo who didn't know what drugs they were taking or any of their possible side effects. They said they were too afraid and just didn't want to know. I knew, but still ended up in the shape I am in. My severe side effects didn't show up until the end of my treatment. Thanks for letting me voice my concern at only reading rosey, no long term side effects from taking chemo, at this website. It just isn't so in many cases. Mar

[Andrea Barnett Budin]

I was on Taxotere from Sept '98 through to the end of May '99 (when my BC metastasized to the liver). Initially I had a radical mastectomy and 4 Adriamycin and 8 CMF. I felt more and more fluish, weak and wobbly, shaky and sapped with each treatment, but fared well overall. I was told I'd be back to normal in a few months. I wondered what was wrong with me, when I continued to feel the side effects after finishing my protocol. I friend with leukemia told me not to listen to the doc. That it could take years. Convinced I was sane and not an oddball, it did indeed take years. Then came my recurrance. HER-2 was in clinical trials in '98. I asked to be tested, after I asked for the liver (abdomenal) sono, which called for a CT and then a liver biopsy. My liver enzymes were very slightly elevated w/every 3 month blood tests. The docs kept saying not to worry. I questioned the #s all the same. And finally I asked for the sono. Taxotere was the most aggressive tool in the med prof arsenal, my favorite onc told me. He said I had a highly aggressive form of BC (4th stage invasive lobular, not ductal, carcinoma w/ 2 out of 18 lymph nodes involved from the outset). I chose the harder road, knowing it was my best shot. I got shingles after the first 2 treatments. Icaught it the moment the first itchy bug-bite-looking raised red blotch appeared on my belly, went to the doc, got put right on the drug to counter it. I spent 10 days in hell, w/calamine lotion, the pills and some additional herbal supplements I read about in my Nutritional Healing book, and then was good to go. No chemo when you've got shingles. I was determined to get back on the chemo. I expected the "freight train" drug to be tough, read all the side effects and tried not to allow the fear of them to predict my course. Still, I had almost every side effect listed X 10. I went into remission, getting 3 different radiologists to read my scans and finding that the concensus was that what they were looking at was no longer multiple tumors in my liver, but the dead remains of tumors, cyst-like, filled w/fluid. I was in cautious remission. I remain so. AND YES, I still have the neuropathy thing going and the deep pain in my legs and sometimes in my arms on bad days. I have an oncological nutritional expert in Manhattan who recommends mega doses of a batch of immune boosters, healthy heart boosters, anti cancer herbs and energy boosters. I don't know where I'd be without Dr. Mitchell Gaynor and my crazy huge list of vitamins+ that I live on. I believe they keep me pretty straight. I have stopped my pain meds, finally. I have developed a bit of a swallowing problem and an IBS (Irritable Bowel) since Taxotere. Dr. G. gives me stuff for that that has been a Godsend. Mar, tell me what your experience has been, long term side effects and all. I am delighted to have found a cohort who really gets it. I am sending you, and all who read this, love and healing energy. Stay strong.

ANDI

[Andrea Barnett Budin]

I've lost your email address but think of you. I pray you are doing well and your mom is STABLE and happy. Please let me hear from you.

ANDREA

[Miriam]

I have been taking Herceptin for nine months now. With three more months to go. Started on it about a year after Chemo and radiation treatment. I take it every week. Takes about an hours from start to finish. Very easy treatment. Once a week works better in my opinion than a larger dosage every three weeks. No sinus problems either. The Famera give me more trouble than the Herceptin. One big recommendation for any cancer treatments. Get a port.
I wish I had one when I started chemo treatment. Doctors should insist on it.
I was give a choice. Made the wrong choice. Have learned a lot since then.
Herceptin is no brainer. Take it.

Miriam