Survivors who have used only alternative treatments
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WOM: Part of study 9831 looks at concurrent herceptin with chemo compared to chemo followed by herceptin. The patients who got concurrent chemo and herceptin did better. Note: both arms got chemo, only the timing of herceptin was different. This study was presented at 2009 SABCS; I'll see if I can find a link for you.
I don't think there are any results from clinical trials of Herceptin alone in the adjuvant setting.
One thing to consider if you don't want to do a year of Herceptin: Sign up for the chemo and herceptin: Complete the first part of it (the combo of chemo + herceptin), then stop. No one can make you continue against your will.
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As far as I know, it is because of two studies that it is believed that heceptin works much better with chemo than without it.
1. The fact that the HERA trial did not show as much reduction in risk of recurrence as the Joint Analysis study. In HERA, Herceptin was given after chemo was completed, in the Joint Analysis study, chemo and herceptin were given at the same time. Since this is a comparison between studies, and not within one study, it is not strong evidence.
2. Better evidence is from trial 9831. See arm B vs C
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First-Line Herceptin Monotheraphy
Orange1, it seems this trial is about Herceptin alone -- (trial was conducted in 2001-- I belive it has already been completed)
tested on 114 women who has BC mets
they have proven that survival rates for these women is almost the same.. for those who took Herceptin + chemo combo..
I may be wrong, can you help dissect the trial?
impositive told me she have the same understanding..
my mother is scheduled for Liver Function Tests and Fibroscan this Saturday to rule out the possibility that her liver cannot take the chemo..
for the meantime, I also want to ensure that my understandign that Herceptin first-line monotheraphy is now clinically approved (ferretmom also told me that she was able to get it for herself)-- but here in Singapore it seems oncs are not aware of this new study that approves First-line Herceptin monotheraphy.
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Treating women with mets can hardly be compared to those without.
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suepen,
I know that, but ferretmom told me she was able to get First-line Herceptin monotheraphy-- she does not have mets (at least from what I know about her)
and the reason she was given Herceptin only is because her doctors evaluated her risks and current situation-- and they themselves (oncs) decided that chemo is not for her..
all I need is a starting point to make that conversation with the onc we are going to see next week-- am not looking for conclusions in this forum.. just a starting point..
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Ruth - she may have been given herceptin alone because she had an existing heart problem. There could be other reasons. It is not standard treatment at the moment.
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Ruth - did you see the moderators post on the previous page linking to information about Diets that claim to cure cancer - it's worth reading in my opinion.
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suepen,
I did read that, and I support BCO's stand against Gerson Therapy and Breuss Protocol. I also believe that there is no cure for cancer-- at least not yet and if anyone claims a cure is either a liar, misinformed or is just using the term 'cure' in replacement for NED.
please let us stick to the Herceptin discussion as this is important for me and WOM.
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it may not be standard care (First-Line Herceptin Monotheraphy) but it is permissible-- as was the case for ferretmom (she probably have heart problems) so her onc actually prescribed Herceptin mono for her
actually my mother was also diagnosed with an enlarged heart-- and her original onc also mentioned that it is a risk for her taking Herceptin..
am equally concerned about her liver function-- -- just need to ensure the new onc is taking all these risks into consideration (thus the flurry of diagnostic tests)
bad heart+bad liver+ chemo+Herceptin may be lethal for my mother.. I hope you understand where I am from..
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I found this interesting. I have heard about biotherapy (caled virotherapy - in my country it is done by medicament RIGVIR) that can help to destroy cancer cells wit hout harming the normal ones. But for brest cancer it can only help to immune system when the cancer is treated with chemotherapy.
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Ruth, you said:
it may not be standard care (First-Line Herceptin Monotheraphy) but it is permissible-- as was the case for ferretmom (she have heart problems) so her onc actually prescribed Herceptin mono for her
Ruth, I do not have any heart problems, or any other health issues, that is not why I decided not to do chemo along with the Herceptin.
My onc did recommend the chemo, but also agreed that doing so would not decrease my chances of recurrence a great amount. It was my pathology, age and surgical choice that we based my decision on. Had Herception alone not been offered to me, I would have accepted chemo too.
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hi ferretmom,
sorry for misquoting you-- I think I misunderstood suepen's posts-- about the heart problem.
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bad heart+bad liver+ chemo+Herceptin may be lethal for my mother..
Ruth, cancer is lethal as well....
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Sorry I did get off the question HAS ANYONE tried alternative medicines instead of treatment offered. I would like to stop using Tamoxifen, have been on it now for 8 weeks with usual problems, very dry skin, occasional flushing, no problems re joint pain, but early days yet.
All the best to everyone
Pinkie
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pinkcandy
click here - for discussion regarding Tamoxifen alternatives
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Pink Candy,
My step mother had Stage I, 0 nodes, lumpectomy, one set of chemo, radiation and was put on Tamoxifin over 10 years ago. She did not like the Tamoxifin and only took it for a few months. She has changed her diet (no store bought meat, lots of veggies and fruit, minimal caffeine etc.) and is doing quite well today. She was past menopause at the time - so that may be something to consider.
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We are getting better but did fall and hit my head must be that ferrin level thing. Thank goodness my ND pushed for that so I know what is going on
I have lots to press with my onc. One thing about me you must understand is I have no trust left in my HMO!!! I spent 17 years with different medical insurance and not one problem. Each time I speak to someone at mine they have more mistakes. My path, now they have me listed as adopted. It is crazy I never know if they really know who they are dealing with. I tried to trust after finding out they misdiagnosed me to be left with internal bleeding and had to sit and wait as they had no one else. Not knowing if this could cause me to die since my chest had swolen up. Then 4 days of miscommunications in the hospital even being told I should just try the medicaiton I told them I had reactions to. It is unreal that one place can make so many mistakes. Now my blood pressure rises with each vistit. Even if I consider chemo I FEAR having it done under my HMO's care. To boot they cover themselves and are only liable for $250K no matter how badly they mess up someone. They are exempt from what all other doctors have to hold their standards too and probably why so many mistakes happen. Think it would be cheaper for them to have me dead that is the sad truth since $250K isn't much compared to the years of treatment I could cost them. I had seriously thought of both but truly FEAR my hmo!I don't question herceptin with the chemo since they say it makes the chemo more effective I just question having it after telling me they won't do it alone but turn around and administer it once the chemo is over. Again the 12 month is only standard of care as it was the time period from the trials. That is why I am thinking less time woudn't differ and some new trials seem to be showing that. My family history is quite complicated but I now learned congenitive heart failure also runs on one side and the pill I had been on gave me heart palps. The liver is showing signs and I have to battle that out with my doctor to pursue more tests. Tired of doctors saying I just don't know. I don't go into deep sweats from 1/2 a glass of wine for no reason that has never happened in my life before. This list goes one. Maybe she will allow TH or just H. I have had years of chemical exposure so adding chemials directly in my blood is a concern. My mom has it and both her dogs died from it. All our friends on the block have crazy cancers and pets that died of cancer. Coincidence I highly doublt it. I have no one to help me get to radiation as I can't bring my 3 year old.
Point is PLEASE think about reponses as people dealing with cancer are in a fragile state. Also please remember that family members also have cancer through their loved ones. I would hope my husband would be welcomed on here should he need support and advice and not be told he doesn't have BC becasuse when we get it so does our whole family.Probably why we have had 2 flus now. My DH said last night after I told him about earlier posts that "I have been on many sites and let me tell you in body building we don't agree in forums but I have never seen such meanness on any site, there is something really wrong with that site". This really hit me and saddened me that a dicussion would lead to what it has. I love seeing this be an informative dicussion and hope to see it progress in this manner
I will check the links when kids are in bed. Thanks. I had no idea moderators stepped in with links? Just thought it was for problems.
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wornoutmom - I'm glad you are getting better - hope your head is ok. Your onc might opt for TCH - less damaging to the heart. Personally, there was no way I would have had AC-TH. The Andriamycin can cause permanent heart damage. I researched it before I saw my onc and flat out refused it. He had planned on TCH anyway because I was node neg. The difference in outcome is minor anyway.
(((((((((((HUGS)))))))))))
Sue
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WOM - your husband would be more then welcome. One of the success stories I wrote about much earlier in this thread came from a wonderful loving husband called SunDiego - he's on the HER2+ve thread. His wife is 32 and had a large met on her liver - HER2+ve - that is now gone thanks to herceptin. We have always treated him with the same respect as any other person on here. The problem on this thread seems to stem from "Ruths" wild, almost manic postings and the fact that she copied things that were written here and put them in her blog.
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WOM, have you had a MUGA scan? You may have already posted about this, but it is a good test to see if you are at risk for the cardiac side effects. I can see why you want to proceed cautiously wit your background and I hope your onc is being receptive to your concerns. A good oncologist will be able to thread this needle, offer you the most effective treatments that your body can handle.
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Hello Nerida,
Kimberly here and just so everyone knows I am my own person and not u...
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Hi wom
I live in England I was dx from the start with stage 4. I had all the conventional treatment... After tax and herceptin my cancer was reduced by 90%.. I still hv more herceptin and hormone therapy to go and my onc is very hopefully now. When I walked in that office a year ago I think unless I dramatically responded to treatment the situation was not great!!! which thanks to god I did!!
In the uk herceptin is licensed for early breast cance with chemo and for one year and I think you have to have had 2 types of chemo. For advanced bc it is given ongoingly... Prob the same as the US. I should imagine there is a time line when herceptin is more effective and also when insurance/Nhs will fund it for early breast cancer.
I have to have heart scans every 12 weeks and bloods ever time I hv it and this as a stand alone treatment...hope any of the information is of use to you, as I can imagine by now your not sure what you want to do...
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I am in my 27th month of Herceptin. (I also take Tykerb). These 2 have kept me NED since April 2010. Will continue with them until they stop working according to my Oncologist. (In reference to the "Herceptin for one year".)
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wornoutmom- Oh I wish I could come over there and help you with your kids! I only have one and a very supportive hands-on DH and even so, it was a lot to handle during treatment. Please reach out to some of your friends and family for help. You are such a caring person, I know they would be eager to help. I certainly understand your concern with your HMO given your history. If you do choose to have rads, I will say that at my hospital radiation center, they were great and some women did bring their kids. They had a computer room and the kids played computer games. The initial set ups take a little time, but once you get rolling, the daily treatments take about 15 minutes. I got famously fast getting in, undressed and out! Please check with the social worker at the hospital. At mine they provided transportation and even childcare for some of the ladies. You might be surprised what your HMO contract must provide if you have cancer. I know you are struggling with these very hard decisions. I will keep you in my prayers.
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Scuttllers I am sorry I meant the standard care for my stage and lower I guess. I am so happy you are doing so well
I do find that the stage IV seems to have exceptions/tests that others are not allowed/given. Like tykerb I asked about this one and was said it was only for metastatic patients. Herceptin alone comes up for metastic and also found out CTC test was also for metastic patients. I even called a center to make sure I was getting the right info on the CTC test..lol Feel like I am on a witch hunt with all they tell me after all the mistakes they have made on me. Wish I could just sit back and put my doctors in the drivers seat it would resolove so much stress for me. I am looking for a clinical trial to show that herceptin alone does not work. I was fully prepared to give the go ahead but she told me NO its was not standard of care. I guess I could just refuse more but they won't do without chemo. My friends father just started chemo who lived near us and had a horrible reaction to it and they almost lost him. His was for a rare blood cancer but it makes me more concerned for exposure being an issue for us who lived there. Why we all seem to have there RARE forms are beyond me.
I do need to have the Mugga scan but have to fight to have the other issues taken serriously. Thinking the mugga was approved only because it is a must with herceptin.
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wornoutmom- As I think you are saying you are willing to take Herceptin, but they won't give it without giving chemo, perhaps you would consider taking a less toxic, older chemo? As my BC showed I might not benefit from chemo, but I had one positive node and wanted to cover my bases more, I researched and elected to do CMF. It is a chemo that has been used successfully for something like 20 years. It takes a little longer than some other chemos (every 3 weeks X 6 or 8), but I thought it was worth it. Most women don't lose their hair, no neuropathy. Most women can actually work through chemo. Most people didn't even know I had chemo, I weathered it so well. Now I am busy with nutrition, exercise, iodine and other things to help me get stronger and stay cancer free. There is a thread that has been running for years called "CMF question" if you want to find out more. I don't know if CMF is apropriate for your cancer, but it might be something to consider as a way to get the Herceptin.
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There was a woman in Massachusetts on Medicaid here who asked for Herceptin alone and she got it. I think it was thru Dana Farber Hospital.
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wornoutmom - Please ask your oncologist to consider giving you Navelbine with Herceptin (that's the treatment I had 3 years ago.) A new study shows it's very effective (and a LOT less toxic) for early stage breast cancers (up to Stage 3). Navelbine won't cause total hair loss (just some thinning) and it won't damage your heart. I found this abstract posted at www.her2support.org (a great web site you should visit). Here's the abstract of the new study showing it's effectiveness: (excuse me if someone already posted it - I didn't read all 45 pages of this thread):
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J Chemother. 2011 Mar;23(1):32-5.
Trastuzumab and Vinorelbine in Early Stages of HER2-Positive Breast Cancer.
Ferrario C, Wong A, Gao T, Bouganim N, Aloyz R, Panasci LC.
Abstract
The combination of vinorelbine and trastuzumab (VH) is highly active and well tolerated in patients with metastatic HER2+ breast cancer. We assessed the efficacy and tolerability of VH as an alternative adjuvant treatment for patients with localized breast cancer refusing or ineligible for standard adjuvant trastuzumab-based chemotherapy. Twenty-eight patients with stage I-III breast cancer were treated only with VH as preoperative or postoperative chemotherapy. Fourteen patients received VH as adjuvant treatment for pT1a-b pN0 or eR+ pT1c pN0 cancers. VH was well tolerated, the only grade 3-4 toxicity being neutropenia with 2 cases of febrile neutropenia. At a median follow-up of 39 months, no breast cancer relapses were documented; moreover, overall and disease-free survival was 96.4%. In summary, our results indicate that VH is effective and well tolerated. VH should be prospectively tested as adjuvant treatment for pN0 pT1a-b breast cancer patients for which no standard treatment is well defined.
PMID: 214824920 -
Not saying Navelbine isn't a good treatment, but be careful when you look at the excellent results. These were described for the 14 patients that were node negative and had small tumors. Results for the stage II and stage III patients aren't provided in this abstract. I wonder why.
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"
Is it ok that I leave that entry-- without your nickname and link to this thread?"
that is not ok with me.
period
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