If not a cure...why not a controller?
I have been so frustrated lately in all of the research I have been doing. I can't seem to grasp why they don't have treatments that are able to control this beast better. So many diseases we are not able to cure but we control them and allow people to live a normal life...why not this beast. I think they are on to things with the Her2 but what about everyone else. I just read the research posted on this sight that taxol only works on about 50% of the breast cancers and then only about 25% of those. Now I wonder if it was worth me getting the taxol. They have identified who this works on....why now...why not before they pumped it into all of us...just because we are stage 3 and need something ....they just throw this stuff at us....I also can't seem to grasp why they can't better identify who will benifit from the estrogen blockers. There must be a way to narrow that done to who really needs this. They hand that stuff out like it is a sugar pill. Doesn't seem that they worry about the damage it can do. I am glad they are starting to use the onco type to check the stage 1 and stage 2 people. I am sure they will eventually develop this for stage 3. Not only do we need to know what treatments work for who but also we need a better grasp on what our recurrance chance is. Right now we just get a really big guess at what our chances are. I guess my biggest issue is why is this taking so long to get there....so much money being spent.....heck you can't walk down an aisle at the grocery store without seeing a pink ribbon on something....
Comments
-
I hear ya. I remember telling my boyfriend during chemo that, 100 years from now, medical students will gape in horror when their instructors describe how they use to treat cancer. They'll look at it with the same disbelief as we do when we read how physicians in the Middle Ages used trepanation to cure headaches. Too bad we can't fast-forward to better treatments and a cure.
-
I think in the future they will do away with stages....it will all become the biology of your cancer and then treatment and outcome will depend on this....my biggest complaint is the time it is taking......I see people commenting that the statistics have improved so much and that they are out of date because of the new treatments... to my knowledge in the last ten years most of the change has been the taxol (which they know now is only helpful on a small percentage), herceptin ( which is great but only a small percentage of cancers are her2) and the inhibitors (and they say that helps with recurrance but so far they haven't said it decreases the number of deaths). From what I read the 2% decrease they have been seeing in deaths is mainly only happening because of the increase of people being dx in stage 1. Stage 1 has a 98%+ survival for five years and it makes up over 60% of the cancers. Other than the herceptin they really haven't seen any significant survival increases for the other stages. Stage 3 probably still only has about a 70% 5 year survival....and that doubles for 10 years...so only about a third of us make it....Stage 4 still only has a 25% 5 year survival....that is really sad.
-
I have been told by someone who works with some of the leading researchers in the field of bc and actually funds research with some of her familys oown money- that the odds don't make up people who actually don't seek agressive treament, post masectomy radiation, and doesn't seperate her neg and her plus patiens. It also doesn't include zometa-which I know is just now in it's final round of trials but the buzz is they are really excited about the promise zometa holds. The new calculator with the "new odds" is hoping to come out in December/January timeframe but still wont include zometa.
Her positive cancer is agressive-the creation of Herception is AMAZING-as it cuts the risk by 50%. Thats a pretty good stat. I am not her pos but if I were I would be pretty thankful for the creation.
I am stage 3 and yes look forward to continued research and a "cure" but I will say I am thankful I am receiving 4th generation chemo, I am thankful that they can give me a test to see if I can metabolize tamoxifin and if I can't they no to give me a different drug, I am thankful for Zometa. I could care less about an actual test that will tell me what my reoccurence will be-what good will that do me? I just want the best treatment they can offer me and the rest is just not in my hands.
-
PureE....I think something you should keep in mind is that they feel treatments work better in younger people....you usually get more benefit from cutting out the estrogen and also chemo works better on the faster cancers which is usually found in young people....so you have some real benefits there. I have my hope for zometa. My onc was turned down by my insurance company and I offered to personally pay for the zometa but he won't do it. I think he is following the rules and won't go out of the current recommendations. Once they approve the zometa I will be the first in line to get it..
-
What I wanted to stress in this thread is I think we are a ways from a cure but why can't they get something to control this better? They have drugs to control diabetes, blood pressure, cholesterol,and so many other things....why aren't they getting something to control this? Where are they spending the money?
-
Well, isn't that what the AI's and tamoxifen do...??
-
keep in mind that our treatments are part of the solution finding process. what works is recorded.
we are very important.
My onc said that even if we are not participating in clinical trials, that we 'are' statistics.. i am not exactly sure how that works.
i like the notion that we are in '4th generation treatment'
i feel like an ipod.
-
I have to add my perspective. I am glad Tamoxifen works for many, as well as the Al's, but for the women in my chemo room, they didn't work more than 3 years, so I would like to see something that really kicks this beast to the curb, maybe it won't be a cure, but how about stoppage. Maryiz
-
It seems that a lot of research is getting down to the molecular and DNA level -- finding those cancer genes and switching them off. It's slow going, but I see the genetic research leading to a cure, the creation of individually customized treatments. It will replace those hard chemos that blast cancer and good cells. It might not be ready for some of us, I sure hope it is there for our daughters, granddaughters...
-
I know tamoxifen and the AI's are controllers but they say they reduce recurrence by 50% and deaths by about 32%. We need things that give us a better chance. My onc gave me a 50% chance of beating this....well with the AI I am on I still have over a 30% chance of not beating this....to me that is really really scary..... I want things to be developed that will give us better outcomes...and I want them soon....by the way I am having one of those bad days...rainy cold here in Wisconsin and I am so down and frightened so thanks for bearing with me....
-
JudyO, hang in there, you just might need a big, fat piece of cheese to go with Konokats' cake. Let's hope these newer therapies will emerge for us, too. I feel confident they will be here for our daughters and granddaughters, but it is possible for us too. The expert at Johns Hopkins says she plans to see this disease listed under polio for cured diseases and she is planning on it in her lifetime. Hope that helps. Maryiz
-
Thanks Maryiz....hope the expert isn't to young...I want something done to save me....I agree with you that my nieces (sons, no daughters) and granddaughters will not have to face this...I have to say though that my aunt died about 25 years ago from breast cancer and at that time we talked how when we were old enough to get it we would have treatments to save us....oh...I am so negative today!
-
I'm sorry you're down Judy. Fall rain gets me down. Spring rain cheers me. Crappy weather does not help with everything else we have to deal with. We don't know what's around the corner. Perhaps some scientists are cheering this very minute that they have found a new drug that will help us. Who knows what we'll have next month, next year... I'm impatient for something new too. I do hope it comes quickly.
-
Athena
-
Let me preface this by saying that I'd like nothing more than a cure or a vaccine against breast cancer. However, my bc trip actually starts back around 1966 when my mother was diagnosed. All that was available to her was mastectomy and very clumsy radiation. By that I mean, they blasted her whole chest until it was raw and oozing. Had she survived breast cancer, she probably would have died young from a heart or lung condition, because I'm sure those organs were fried. As it was, she died at age 44 in 1969 from breast cancer.
I feel very fortunate to have chemotherapy. That wasn't available for my mother. They were only beginning to test it on people with Hodgkin's at that time. I feel fortunate that the radiation I had is more targeted and less damaging to surrounding tissue and organs. I elected to have a mastectomy, but I could have had a lumpectomy. That also wasn't available in the '60s. Back then, they also scraped you down to the bone when you had a mastectomy. And tamoxifen and the AI's...also not around for bc patients in the 1960s. Had these treatments been available 40 years ago, maybe my mother would have lived. Maybe not. While I think it would be great to have more, I'm grateful for the advances that have taken place in the last 40 years. Women back then hardly had a chance. I don't believe they even had mammography in 1966.
It seems that a lot of research right now is focusing on the cellular structure of cancer and genes. I think they are trying to understand it better...why it grows, how it grows, why it spreads, etc. Think how difficult it would be to fix your car's engine if you first don't understand how it works. I've heard several oncologists say that they feel this understanding, and thus a cure, is just around the corner. I certainly hope they're right.
-
I heard that there is some hope that Zometa might be used as an actual preventitve-that they are looking at it as a possibility that it might replace chemo for stage 1 and 2 patients and serve as a preventive. Researchers are very excited about zometa. They are also doing a study on having it at the same time of chemo as it might increase your response to chemo. There was only one study to date done but I am getting it at the same time of chemo.
If you can't get zometa and your doctor wont fight for you I would switch:) Let me also say I am very agressvie with my doctors and take part in every step they do. ( I am sure they think I am a pita) but I learned when my husband got colon cancer-that being agressive and choosing a doc that will be agressvie for you is so important.
-
Well, I wish they (the oncology world) would all get on the same page as far as Zometa. I'm stage 3 and my onc is still of the opinion that the side effects outweight the benefits for prevention of bone mets. And I know my onc isn't the only one with this opinion. Then WHY do I read that stage 1 ladies are getting it?
-
That is really strange...I think after asco this year that hopefully more oncologists will come on board. They are in the final stages of another study.
-
My onc was really up beat about zometa when I was first dx May 2008. When I completed chemo I brought it up to him. He said I will submit to your insurance. It came back with a no. I said no problem I will privately pay for it....he said no...don't waste your money. He said he isn't so sold on it. I was surprised since it seems to be the direction everyone is going. I saw the research that PureE mentioned about taking it while you are on chemo and that is even better. Well, he said this is one of those things where the director of a major clinic likes something and they push it...he wasn't going to go for it until more came out. He also felt it may be a better thing for the early stages, not us stage 3. My onc is young and pretty current. We are tied to the University of Wisconsin breast cancer research clinic and I know they are well known. I take fosemax for osteoporosis so felt the zometa could replace that. My husband is a dentist so I am aware of the jaw issues. He made sure all of my work was current before I started the fosemax. They do see some issues with it....but I could live with jaw issues if the cancer didn't return.
-
yeah give me locl jaw over bone mets any day:)
-
My Onc thinks there is no downside to it. She is not promising any benefit re:mets, but absolutely doesn't think it will do me any harm. At the very least I will have strong bones! I feel very fortunate to be getting it.
From what I have read, they think Zometa might get inside the bone marrow, and have an anti-tumor effect. There is thought that that is where the cancer cells "go" before they metastasize, and Zometa may prevent this from happening.
I agree with what Celtic says - we are certainly more fortunate that women in the 60's and 70's. Breast cancer is one of the most high profile and highly funded cancers out there - in that way we are far luckier than someone who gets Pancreatic, for example.
Knowing what I now know about Breast Cancer, it is such a complex disease - and as Athena points out, what works in mice or in a petri dish doesn't always translate to real life.
-
When I sit in the chemo room-and I see people with rare or tough tough cancers I can't help but be grateful I atleast got a cancer with so much research behind it....I am a basketcase as it is-had they told me I had a brian tumour and had to have brain surgery-I would have had to been committed for sure.
-
Hi Ladies, When I graduated from Nursing school in 1979, I went straight into Oncology. My Grandmother had passed away from BC. @ 2 yrs into Oncology, my mom was my pt and dxed with BC. Trust me we have come along way since that.
Breast cancer as vicious as it is is not ONE disease; we all have different genetic markers. and we all carry around 40,000 genes, and only a fraction of them are identified and their mechanism of action is known. that is why " targeted or molecular txs which have the abilility to " turn off "the identified abnormal genetic mutations, and kick back on the tumor suppressor genes. Prior to all this we used cytoxics ( which kill cells good and bad) and Hormone suppressors (Tamoxifen and AIs) only.
I am in no way saying that it hasn't been ridiculously slow . one woman dying from this disease is one too many.
-
I'm with you all that something that is 100% effective in stopping the spread would make me just as happy as a cure! I was dx'ed with mets from the start and did hormonals/zometa up until last September. In the last year, I have been on 6 different chemos, faslodex, and zometa. It wasn't until my most recent chemo (gemzar) that we seemed to see any real response. I haven't had scans since starting gemzar, but the pain I was having in a known mets site has gone from "holy-cow-I-don't-think-I -can-handle-this-even-with-the-oxycodone!" to "huh-that-sorta-smarts" in less than two months. My side effects with this tx are also quite minimal (no hair loss, no vomiting, slight fatigue, only moderate problems with blood counts). Sure would have been nice to have had some sort of test or way to know that THIS chemo would do better for me than the others that I took with horrible side effects. I developed horrible neuropathy with them that has literally crippled me. I am now in a wheelchair and cannot walk unaided.
Damned cancer!
((((HUGS)))
Diane -
Oh, Diane, I am so sorry to hear that. Yes, it would be great if they could give us a blood test that would indicate what would work for our particular needs. I feel like they just throw everything at us in the hopes that something might work.
-
I actually had a conversation where my oncologist was excited about a new drug that works similar to herceptin, he actually said "YES" and made a motion with his hand. Now him to do that, and see him excited was very cool.
Its coming...I believe it is coming.
-
I believe too!
-
Wow, Fitz, that is sooooo neat. Hang in sweetie. Let us know if you get more information. I would love a drug that really works, not something that adds three months. You know the routine. Take care. Maryiz
-
Thanks, KerryMac! But the GOOD NEWS is that the GEMZAR seems to be doing the job for now and the s/e's aren't too bad! Still, sure would be nice if there was more data to support the validity of "chemosensitivity testing" or another way of determining the right treatment for each person.
-
I love this thread and have to say all the stellar ladies that have shown up with some very compelling thoughts.
JudyO, the expert at Johns Hopkins is in her late fifties. Her additional comment was that her daughter would have a cure or preventative before she had to face this issue. I figure her daughter, I Believe, is about 30, and the expert was diagnosed with BC in her thirties, so I think she is phrasing it relative to herself being diagnosed in her late 30's and her daughter being 30, so I see that as pretty optimistic. Thanks for posting. Maryiz
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team