TRIPLE POSITIVE GROUP
Comments
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My exact same sentiments, jennt28!
Doctors and pharma companies are here to help us navigate through this. If they profit from this, as they expectedly should, good for them. It's up to us to take it or leave it.0 -
Thank you for your eour ideas are well worth thinking about. Janette's areas of research were qualatative whereas so much cancer research is number crunching so it maybe worth exploring your idea from a qualative perspective.
Thanks for pointing out that am not in the correct forum; typical of me not to pay attention
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jenn - excellent post.
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bravo Jenn
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Jenny, very informative post, thank you. Everyone has to make their own risk/benefit judgements. And it sure ain't easy!
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Thanks, Jen! Well said!
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Wonderful post Jenn! Thanks.
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Totally agre Jenn. Very well said.
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I'm glad to see people make the effort to present points of view here politely and honestly when they differ (including my own), so that we all have a better understanding of the complex issues involved in treatment.
I particularly agree with kayb's assessment of where things stand. I do agree that the medical hierarchy is inclined to see such investigation as being questionable ethically, from the point of view of a heirarchy that has bought into chemo as being the standard regardless of whether something potentially better than chemo when used alone can never be investigated to see whether it can stand alone.
Therein lies an ethical question that they do not address, since the vast majority of them do not personally do chemotherapy themselves (and may avoid it for their own family members). If chemotherapies were understood thoroughly enough that it was certain which patients would get which results, then perhaps their rationale for what is ethical and what is not might make more sense to me.
Failing to fully investigate whether a newer type of drug was able to stand alone, while also failing to acknowledge openly that it is possible for chemotherapy to cause some additional breast cancer is not ethical, IMHO, in the stampede to convince patients that chemotherapy, while imperfect, is "the best we've got to offer".
To Jenn:
I'm glad so many are supportive of the research you are being paid to do and respect it, in that there are many dedicated people working in that field. It is an organized way to approach the problem. However, I also do not make excuses for it's failure to investigate less toxic solutions as eagerly as it seems to support more and more toxic ones. Trastuzumab is one example of that.
Research and development has its huge blind spots:
Unlike many of you (who so far appear to be all within the limited time frame of 3 years since your diagnosis), I have a much longer perspective as a patient. This is but one example, and these poor practices continue. It is "nice" for patients to have strong beliefs in their health care system, but those are also somewhat convenient, lazy beliefs that "all is as it should be", so "we like the way things are".
I particularly support the women who are willing to debate and question their providers and their treatment thoroughly.
AlaskaAngel
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AA when they were initially working with Herceptin they did try it alone. That was the goal for Herceptin. A drug that wouldn't do all the damage chemo does. The problem is some women responded, some didn't and overall responded better with certain chemo agents.
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Lago,
Originally they applied it to patients who were metastatic, and along with that goes the history of having had prior chemotherapies, as well as a larger tumor burden than non-metastatic patients. Whether the immune system is strong enough in metastatic patients to work with trastuzumab alone is questionable; yet as you say, even so it did help some metastatic patients -- perhaps those who never injured their immune systems by smoking or other toxic exposures during their lifetime.
The largest population of breast cancer patients are those who are not known to be metastatic, and their immune system has a much better chance than the immune system of metastatic patients in supporting the use of a drug such as trastuzumab when used alone, without the attack upon the immune system by chemotherapy.
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AA, I really take offense at your statement that "those are also somewhat convenient, lazy beliefs". Nothing convenient OR lazy about my decision/decisions about chemo or BMX surgery. I took in a lot of different viewpoints, information, research and personal experience to reach those decisions. I am a naturally contrary person, and I demand a lot when I do my research. I am not a "sheeple" not knowing what I put into my body. I may not be perfect, may make wrong decisions, but they are my decisions made after careful review of my particular circumstances. I would never presume to know more about someone else's circumstances than they do. I am glad you are clear on what you need and expect, please allow that same respect to the rest of us. Thank you.
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AA I'm not getting into this immune system/toxic enviroment debate with you.
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Moonflwr912,
I encourage those like yourself and your conclusion in favor of the treatment you are chosing, and in no way was my comment targeted at anyone personally such as yourself. At the same time, I do the same for those who are in the process of making other choices. Thus the use by me of the word "somewhat" in the comment that you took so personally. Not all people, or even perhaps the majority, are lazy about making their choices. But buying into treatment on the basis that the medical system "knows what is best" doesn't require much effort or intellect.
Lago, I respect your wish not to personally enter into further debate about those issues.
A.A.
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From a research perspective getting a large scale Phase II/III study, of herceptin alone in a non-metastatic cohort of patients, to "fly" would be a miracle. There's not enough research dollars to go around and the dollars tend to go to studies on new innovative drugs and not drugs that have already been proven in some way.
I'm not saying that is right, just that is the way it is in research. Research dollars are hard to get.
And many here are correct. Even if the research dollars were there, there are ethical problems since you would be asking patients to accept less than standard of care. This means that the reality is that such a study would likely be very hard to recruit to because patients on the whole don't want to be potentially under treated.
There are a lot of sheeple out there. I would guess they tend not to be on these boards though. They dont need them because they are happy to do everything their doctor says and they dont go searching for other information. Being a sheeple In 2012 would be better than being one in 1912. Things have come a long way and we have so many options.
Jenn0 -
Back to traditional treatments......and for those who don't believe in them.. I discussed this at length with a dear female friend who happens to be a world renowned researcher and medical school prof....no big bucks pharma ties....who has devoted her entire life to female reproductive research and hormone expression issues ans she agrees with this traditional treatment. In fact she is a 12 year bc survivor who did the same.
My new mo would prefer me on an AI as I start my hormone thera py. He also wants me on some bone strenthening meds down the line because of my Osteopenia and the effect of AI's on the bone. It's Anastrozole for me and he wants to see how it works for me.
I told him a lot of my friends had joint pain issues with it . He said let's see.0 -
ashla, do you think you'll give it a try, then?
Jenn, the Aussies are especially independent-minded and more conscious of wasteful practices than some other places, so if there is any likelihood for such a study it might come from there first. Originally when I participated in the low-dose testosterone use for breast cancer patients who had not recurred, there was the same impression that the risk was too high and it was felt that not enough patients would accrue because so many breast cancer patients were leery about recurrence. I was surprised to find that recruitment was strong for the trial. I think the same is true about trastuzumab, especially those who are in the very earliest stages of bc. While it would take more of the earliest stage patients to "prove" the outcome (because most wouldn't recur at all or wouldn't recur anyway for a long time), I think it could fly. Right now we do not have any cutoff point for those at lowest risk, which is resulting instead in instituting chemotherapy at earlier and earlier stages with an even vaster number of people receiving chemo that get no benefit from chemo while still bringing out proportionately the same number of people who have complications from it.
A.A.
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Rescheduled my surgery for Aug 8...pre op on Wednesday. I am going on a trip July 30 with my daughter who is going to college in the fall. I do not intend to see an oncologist or get the traditional cancer treatment, but as everyone says "take it one day at a time". My family wants me to do something so I am going under the knife. I long for an alternative.
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ashla - I started on Femara (Letrozole) and had a lot of joint aching with it. My MO just switched me to Arimidex (Anastrazole) and I actually have less pain. I am also osteopenic due to a hyst/ooph at 45 but have been relatively stable for the last 10 years. I have additional bone loss since treatment and now get a Prolia injection every six months to protect and rebuild.
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I got results of tumor marker 15-3 and 27-29. 15-3 is 40 and 27-29 is 36.1. I know these are not considered by many to be credible, but any input you have to these results would be helpful. Thanks.
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Alaska Angel,
Yes I will. As I said i disussed this with my PHD friend and she had severe joint pain with Arimedex so switched to Femara and stayed on it for 12 years! It's controversial to stay on that long but she was well aware of the risks.
The bone strengthening stuff I'm not so sure of yet. Think I'd like to wait. Everyone I know who has one even done just the extended calcium supplements has run ino SE's. Kidney stones and the only friend who actually was able to tay on Fosamax for etended treatment had two broken legs in the past 3 years. That troubles me.0 -
nancedawg,
That is the first page for you, in getting to the rest of them. There are no ideal choices yet. I'm glad you are building some rewards into your plan, though!
As for the tumor markers, it will take a while to see whether your markers hold steady over time or bounce around or rise or fall. Cancer involves some inflammation to begin with, which is basically what tumor markers measure. Chemotherapy itself causes some inflammation. At completion of chemo mine was around 29, and it dropped during the first year afterward and for me has remained low and stable thus far, without trastuzumab, a taxane, or an AI. Markers are not reliable for all, though, and inflammation can result from poor practices like smoking or other concurrent illnesses. So try to get or stay as healthy as possible to get the most accurate readings.
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Special K,
Thx so much. It seems that's true of most women. One or the other seems to work . Hope that true for me too!
Do you have any other SE's?0 -
Ashla I too am no fan of those bone strengthening drugs. Granted I am on increased calcium 1200 in addition to the 200 in multivitamin). If I did need the bone strengtheners I would not stay on it indefinitely. I would give my body a break from it every few years so my bones don't forget how to make themselves strong.
nancedawg my onc is one of those who feels tumor markers are unreliable and does not do them for at least early stage. My BS feels the same way. I have no idea what they mean.
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nancdawg - you could Google "tumor marker XXXX normal range" and that should give you some sites to visit that will tell you what the normal range is for that particular tumor marker. Our MOs down here in Australia don't use them much for breast cancer because they don't seem to be very reliable. They definitely use the tumor markers for prostate and ovarian cancer though because those tumor markers are more reliable (they are different genetic markers than the breast ones).
Alaskaangel - I hope you are right about the research. I know there's a new trial just started at a number of hospitals here in Australia using subcut (subcutaneous) Herceptin. I just missed out on qualifying because the sites weren't up and ready to start recruiting until a couple of months after I started Herceptin. I would have had to do an awful lot of research before entering the trial anyway (as I always do) to find out what studies had already been done to prove that the subcut dosing would provide the same serum/body levels of Herceptin as iv dosing.
I, of course, signed up for a couple of trials. Since my MO knew what I do for a living she was pretty quick to roll out all my trial options. I donated some of my blood at the beginning for a tumor marker project (which I will probably never see the results of and won't know what my results were). I also signed up for the international D-Care trial which is testing the bisphosphanate Denosumab in women with early stage breast cancer. It's already been proven to slow progression of bone mets in Stage IV women.
Well, I'm sitting at my desk so had better get on with some actual work. My two current research trials are in patients with renal cell carcinoma so very different to breast cancer thank goodness.
Jenn
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Here's an old post of mine re CTC's but unfortunately the rest of the article is not available any longer. THere might be enough info to delve further if you're interested.
Fairly consistent data suggest that simply counting CTCs represents a useful prognostic tool for certain cancers. One of the first published papers in the field, by renowned breast cancer researcher Massimo Cristofanilli, MD, now at Fox Chase Cancer Center in Philadelphia, found that between 60% and 70% of patients with metastatic breast cancer (MBC) have at least two CTCs per 7.5 mL of blood, while such cells could rarely be found in healthy controls. A minimum of just five CTCs per 7.5 mL of blood predicted poorer progression-free survival (PFS) and overall survival (OS) compared with those who had fewer.
With varying thresholds, researchers have found CTC levels to provide similar prognostic value in prostate and colorectal cancers—hence the expanded approval for the Veridex assay.
But simply being able to predict who will do better and who will do worse is of little value to the patient, other than knowing who needs to get their affairs in order more quickly. Clinical utility depends on actually being able to shape treatment choices based on the information provided in an assay.
Can CTCs do that? Maybe. It seems clear that they can accurately measure response to treatment in the cancer types for which they’ve been validated—again, breast, colorectal and prostate. Studies by Dr. Cristofanilli’s team and others have found that in patients with nonmeasurable disease, a decrease in CTC levels two to five weeks after starting systemic therapy correlates with improved PFS and OS. In the recent Phase III CAIRO (Capecitabine, Irinotecan, and Oxaliplatin in Advanced Colorectal Cancer) study, patients with three or more CTCs per 7.5 mL at baseline had a 1.5-fold increased risk for progression (P=0.0003) and a 2.2-fold increased risk for death (P<0.0001) compared with those with low counts.
There are other ways of monitoring response to treatment, of course, but some studies have found that CTC analysis may be more accurate than these existing options, such as imaging in breast cancer"
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Ok - I couldn't resist... Here is information about those breast tumor markers. Keep in mind that as these pages indicate these tests are usually used for tracking of response to treatment in women and when you have just had the one test prior to any treatment it is considered as a "baseline". Subsequent tests may then provide indication of change from baseline which is what these can be useful for.
If I was a person who had decided to forgo some elements of treatment for my cancer I am not sure that I would do these tests as they would then be of no value to me. Other tests like a yearly mammogram, ultrasound, CT scan or MRI would probably be more useful for tracking potential recurrance or spread of the disease. But that's just me...
http://www.labtestsonline.org.au/understanding/analytes/ca15-3/tab/test for ca 15-3
http://www.mgh.org/lab/CATALOG/TESTS/4324.HTM - for ca 15-3 (ref range (normal) < 53)
http://www.oncolink.org/experts/article.cfm?id=2455 - for ca 27-29
http://www.mgh.org/lab/CATALOG/TESTS/1699.HTM - for ca 27-29 (ref range (normal) < 38)
Jenn (please note that I am NOT a medical practitioner and these links were found by using Google. The best official source for information about anyone's disease and testing is always your own qualified medical practitioner)
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Agree about the CTCs. They are useful at this point only as a prognostic indicator or long term survival (OS) and the machines are few and far between. We have only one CTC machine here in Australia currently and while at a conference last week I spoke with the woman who runs this machine. She confirmed that they have no plans to offer CTC testing on a commercial basis and their machine is currently very busy being used for CTC testing in clinical trials.
For one of my trials we utilise the CTC detection machine and send a sample to the lab at baseline for each patient - I've was originally so tempted to see if I could sneakily pull 10ml of my own blood and somehow get it to them ;-) Would never do it though because it could only give me good news (more likely to live longer) or bad news (more likely to die sooner) and not news that I could actually do anything about...
Jenn (who really must get back to work)
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I took Arimidex and then switched to Aromasin - my onc also got me 4 lots of Zometa to protect my bones even though my density was OK.
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Susieq58
Curious..Did you take arimedex or the generic anastrozole?0
