Survivors who have used only alternative treatments
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Interesting that they find excercise has an effect. Given that I was on birth control for over a year while having breast cancer the whole time it makes me think this may have some reason to do with me not being worse off. That combo and her2 I can't help but think that this might have played a role for me as I am an runner.
Swimming might also be a good option for those who have joint/bone aches. My friend has a non moving knee joint and it is the only excercise she can do that is why it comes to mind. You aren't putting the weight on your bones
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I just found this post today, and obviously couldn't read every post. I skipped most of it and tried to look for your posts only WOM. I actually found this post by doing a search for "chemosensitivity". I hope you are doing well. I just thought I would share my experience for what it is worth.
I was diagnosed with Stage IIIC, Grade 3 HER2+ BC in March 2010. It had spread to inoperable lymph nodes so I opted to do chemo before surgery. At my stage, I felt I had no choice, and had no time to research it. I have since become a research nut (although I don't keep sources since it has been for my own knowledge). I did 4 rounds of A/C and 4 rounds of Taxotere with Herceptin, and have been on Herceptin ever since. During chemo my onc would palpate my tumor and tell me she could tell it was shrinking. Same with my axillary nodes. I finished August 18, 2010. I had a second PET/CT after chemo, and it showed all cancer gone except for a little bit of uptake to the original tumor area that they suspected was inflamation. I had a bilateral mastectomy just 3 weeks later, and my path report said that my original tumor was still 3cm and I had 18/51 positive nodes with extracapsular invasion. The PET/CT showed none of this. I decided to start getting second opinions because I was convinced there was still cancer in my body. I had to wait 7-8 weeks to start radiation anyway. I went to Stanford, UCSF, UCLA and Cancer Treatment Centers of America. I got 5 different opinions. I was hoping to just get 3 if 2 agreed. That didn't happen. It was so frustrating. Cancer Treatment Centers did a CT scan in October, and it showed nodules in my lungs and 1 on my liver. CT's don't tell you if lesions or nodules are cancer, so they suggested I wait 3 months and do a PET. In the meantime I did 5 1/2 weeks of radiation. Jan 7th, I did my follow up PET/CT at UCSF and lo and behold, the lung nodules were cancer. Bam, I was Stage IV. I progressed very quickly (from my PET/CT in late August to my CT in early October showing the lung nodules) on Herceptin only. Herceptin does not work for everyone. Chemo does not work for everyone. Every cancer is different. I did alot of research, and even met with Dr. Dennis Slamon at UCLA (he discovered the HER2 gene, and fought to get Herceptin on the market). I felt he was the expert on HER2, so when he suggested I add Tykerb to Herceptin if I recurred, I did. I have tolerated this combo very well, and it kept me stable for almost 4 months. At the time of my confirmed recurrence, I also had cancer in my supraclavicular lymph node on the opposite side from my original cancer. The Tykerb resolved that after 2 months and that has not come back. The lungs, however, progressed. I am getting PET/CT's every 2 months right now. At that point I was looking at more chemo. I had a horrible time with my first round of chemo, so the idea didn't excite me. The reason I am posting is because in my experience, all oncologists are just guessing when choosing which treatments to give a patient. I decided to go outside the box and have some of my lung tumors removed and tested for chemosensitivity in Long Beach, CA. It was not a fun surgery, and I am still recovering, but we got a really good sample (3.7 grams). They were able to test almost every drug/drug combo out there (chemo and targeted agents like Herceptin). This testing is still considered experimental, but it made so much more sense to me than just guessing which treatment I should do based what what worked for the majority of women in trials. That method sure hasn't worked for me so far! I did everything I was supposed to and it still spread. I just got my test results on Friday (which is why I was searching this forum for chemosensitivity to see if anyone else had done the testing), and the results were surprising. My cancer showed resistance to Xeloda/Herceptin (the next treatment that was being suggested by my local onc and my UCSF onc). I believe if I had taken this drug, I would have gotten 100% of the toxicity with no benefit. Instead, my cancer was highly sensitive to Navelbine/Herceptin. Obviously Herceptin works better with some chemos and not others (and that is different for every person and every cancer). I also showed sensitivity to many other drugs (some in clinical trials and some are targeted agents with few side effects). I was also resistant to Gemzar/Carboplatin. This is the combiniation that Canter Treatment Centers of America wanted me to do in October even before my lung mets were confirmed. That would have been a huge mistake! It just goes to show that all oncologists are guessing. Time will tell if the testing proves to be accurate. I start my treatment this week. I still think I made the best choice for me because I couldn't wrap my brain around throwing drugs at my cancer and hoping they stick. I feel like I am at least making an educated guess.
Sorry that got so long! In skimming this thread, I didn't see anyone else who had a story quite like mine, so I thought I'd share. I wish I had known about this testing before my mastecomy because they could have taken the sample from my breast instead of my lung!
Also, do you by chance also live in CA? If so, I have a feeling I know which HMO you have, and I totally understand why you don't trust them. I have a friend who is with the big HMO here in CA, and I have gone with her to her appts to act as an advocate to help her get the testing she needed because they refused to think outside the box. The surgeon was offended by my presence. She wanted a PET scan and they were refusing to give her one. We came armed with 2 articles showing how PET scans are more accurate for detecting recurrent BC than CT scans. PET scans are expensive, which is why they don't like to do them. The surgeon reluctantly agreed, but he put in her patient notes that she had demanded it, and even mentioned my name and my BC stage in his notes to cover is A$$ for ordering the PET. The system is ridiculous, and I have such strong feelings about it that I told my husband before I married him that I wouldn't marry him unless he promised me we would never carry that HMO insurance. Not all HMO's are bad, but I hate this one. Just my opinion based on family experiences with them. If you haven't had a PET, I would highly recommend demanding one. CT scans do show more detail, but they cannot tell you if there is cancer elsewhere in your body like a PET can. I usually get PET and CT at the same time, but this HMO doesn't have the latest equipment so they have to be done seperately. Which is why they don't like to do PET scans.
Good luck to you, and I will be frequenting the alternative threads because I am going to do a better job at protecting my healthy tissues and immune system this time around with chemo. I had no idea about any of this a year ago, and I wish I had.
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deenah,
I am surprised that no one has replied to your post. Well, maybe not. You are showing things up for what a crap shoot they can be and many are too frightened to contemplate such a fact. I am sorry to hear about what you have gone through. That lung test sounds like an excellent decision on your part. Should I ever metastasize, I would definitely go for something like that. I do hope they find something that works for you. There have been what I suspect are other cases like yours in this forum - women who are stage IV and seem to progress despite a series of chemo combos and even radiation. If they could make chemosensitivity tests standard, it would likely save some heartbreak and false hope; more importantly, it could also save lives in the process.
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No one ever said that chemo works 100% for everyone. My onc told me straight out that we won't know for sure if it works. It's just the statistics show that it helps significantly more people than not doing chemo in my situation. Herceptin I believe is about 50% effective maybe more but not 100%. The test Deehan had I expect will be the wave of the future just like oncotype is.
It does appear that cancer mutates and becomes resistant to many treatments (including Herceptin) over time.
Onc don't want to give chemo is there is a better solution. This is the best they have. Herceptin was so exciting because it doesn't seem to have the SE that chemo has for most people.
Deenah I'm so glad you had the test so they could individualize your treatment. The problem with scans is they are only as good as the people reading them. Even reading these scans, mammos, US are not a perfect science. Frustrating to get 5 different opinions.
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Dennah so glad you had the test and thanks for sharing your experience as i did not even know that they could test your tumor for sensitivities. If I ever have mets I will defiantly check into this.
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It is important if you do look into chemosensitivity testing in the future, that you find the correct type of testing. Many out there are doing the testing on very tiny biopsied samples. Some are doing the testing after the tissue sample has been put into a slide, parafin added to it, and it partially or mostly dies. If you ask most oncologists about accuracy about this testing, this is what they are talking about when they say it isn't accurate. The testing I had done is very different. They have to have at least 1 gram (or 1 solid cm) of tumor. They don't do anything to the sample, and the testing begins within 24 hours of it coming out of your body. In essence, the drugs are tested on it while it is still attached to it's blood supply (the good tissue around the cancer), and before the cancer "wakes up and realizes it is outside your body". This is how it was described to me by the Dr. who did the testing. It makes alot of sense that this would be the most accurate way to find out how a drug will effect your cancer while it is still inside your body. I hope you never have to be tested Sherryc! Hoping for NO METS in your future!
You are so fortunate that you caught your cancer early. I know I wish I had.Lago - It was very frustrating to get so many different opinions.
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deenah it does sound like you are in good hands now.0
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Lago - I definitely am now. My doctor locally is amazing and very open minded. She is also very warm and easy to talk to. How are you doing? It's been a while since I have been on this forum. Are you done with treatment?
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I'm doing well. I'm still doing Herceptin… tomorrow is #13. I've been on Anastrozole since March 1st. I might finally be getting some stiff fingers & toes in the morning. My exchange surgery was postponed from May 24th to June 27th because I got the evil shingles. So far I think the shingles were the most anoying part of this. Guess I'm glad I got them now when I am young(er). I can't imagine a 70 or 80 YO dealing with shingles.
Anyway I'm looking forward to the exchange. Herceptin ends in September.
It's so important to have the right doctors. I'm so glad you are now with the right one. At times I shudder when I read some of things other women on this board have had to tolerate.
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I wonder why they dont test or explore our tumors while they are still "alive." Once they are killed, stained and placed into the paraffin, they could be losing some very vital information.
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Dennah so glad you got answers you were looking for. Unfortunately, I am in Canada where oncotype is not a norm yet so chemosensitivity is even further in future. It should be norm and available to everybody.
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Lago, that's too funny. I wasn't expecting that video when I clicked on your link. I agree, it's all about the cost.
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My first job I learned all about the element of surprise. Glad I could make you laugh/smile.
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Lago is right. You made me laugh too! I needed that today. It's all about money. I can't quote sources or post studies on this, so it may not be entirely accurate, but something like 80% of chemos don't work (not sure if that is first or second line). If this type of test became the norm and was accurate, that 80% would not be used or sold. Did you know that in the US, oncologists are the only doctors who make a profit off the drugs they sell? I didn't know that until my support group doctor made that point. Every other doctor writes a prescription and the pharmacy makes the profit. If a chemo doesn't work, the oncologist and the pharm company still makes money off of it. Also, in acedemia, universities are paid huge money for human trials. They need patients in order to conduct their trials. Why would someone subject themselves to a drug they knew wouldn't work (based on an assay test)? Follow the money...sad, but true. I don't think oncologists would intentionally prevent patients from getting well, but this way of thinking is so engrained in them. It is a conflict of interest for sure in my opinion. I don't know if any of this information is completely accurate, but it makes sense.
Something else I found interesting (I can't remember where I read it, but I decided to test the theory when I progressed)...somewhere I read that at universities, they most often prescribe drugs that can be taken orally. They don't make a profit from the drugs like private oncologists do. On the other hand, a high percentage of private oncologists prescribe infused drugs even if an oral equivilant is available. This held true in my case, although I'm sure it's just a theory. When I progressed, my UCSF onc recommened my next treatment be Xeloda with either Herceptin or Tykerb. She said it was a toss up between Herceptin and Tykerb and she would recommend either one equally. When I went to my local (private) onc, I told her what my UCSF onc recommended and asked her what her opinion was on which one to go with. Guess which one she chose? Herceptin. It is infused while Tykerb is oral. I don't for a minute think she did that intentionally, but why not make more money if it's a toss up? Just found that interesting...
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deenah you misunderstood me. The test is expensive so insurance doesn't want to pay for it. It has nothing to do with selling more chemo. As I mentioned before insurance won't pay for treatments that don't work. If chemo didn't work they would refuse to pay for it.
I don't know what you mean that 80% of chemo doesn't work. Taken out of context that means nothing to me.
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You can't credibly make the statement that insurance only pays for treatments that "work."
Insurance companies covered chemotherapy for years to people who would never be prescribed chemo today. Those were the guidelines at the time so the insurance company paid. Only after the fact, after twenty years of chemo, did the official treatment guidelines shift to hormonal control instead of chemo for a large set of patients.
Also, "works" (meaning FDA approved) is often defined by the FDA as extending life by four months. See the proceedings of the ASCO conference or the documentation of the San Antonio Breast Cancer Symposium.
Dr. Susan Love has said chemotherapy extends the life of 3% of the people it is prescribed to but there is no way of knowing who in the population falls into that 3%.
I don't know what the status of Herceptin is now. Some insurance companies were balking because it had been demonstrated to decrease recurrence but not improve survival. But recently, I think the statistics moved to show to some survival advantage. I can't recall the numbers. Anybody have the overall survival stats?
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Do you have the reference where Dr. Love says that? I would like to read this in context. 3% of which people?
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Dr. Susan Love says, in the most recent edition of her book (Dr. Susan Love's Breast Book, 5th Edition):
"Chemotherapy has had a lot of bad press, and it's a pity, because it's one of the most powerful weapons against cancer that we have." ..."A woman treated with chemotherapy may now live for many years..."
When talking specifically about people with metastatic breast cancer, she says: "Between 20 and 59 percent of patients respond at least partially to the commonly used single-drug chemotherapy treatments, and about 10-15 percent have a complete response: their tumors vanish on X ray examination for 6-12 months. . . .So chemotherapy, like hormonal therapy, can help you live with symptom improvement for anywhere between one and four years, and there's a small chance it can give you 10 or more years of quality life."
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To the question of why our tumors aren't tested for chemosensitivity though: one issue may be that what works on a tumor in a petri dish may not work in the human body... and vice versa. The drug is delivered differently in the bloodstream than it is through a dropper. That's why doctors rely on real world studies on patients. They look to see what happens when a cohort of patients is treated with a drug regimen. The human body is so incredibly complex and we really don't understand, nor are able to directly observe what goes on in there.
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Lago - I know what you mean about the insurance companies, but some are starting to pay for this testing. I am still waiting to hear if mine was covered. The suspected reason why it hasn't become more mainstream is money driven for the reasons I stated. It is still mostly about money. I actually got an email from my onc today and she is changing her recommendation of which chemo I should do based on my test results and was going to call the doctor who did the testing to learn more. If she didn't believe it had some merrit, she would be pushing for Xeloda instead of changing her mind and going with the Navelbine. I am sure you are right about insurance companies though. Until it is proven to be accurate they can refuse to pay. I will definitely post here to let you all know if mine did or not. The woman in the testing doc's office did say more insurance companies are paying. It makes sense for the insurance companies to pay for it if it is proven to be accurate because they then only pay for treatments that have a better chance of working. The test is $4k. One chemo treatment can be more than that! I am not sure about the 80% number. I am not sure how to answer your question about the 80%(again, I could be wrong in my memory of the exact data), but I know my support group doctor has that info. I go tomorrow and will ask him for a reference on that info. Now that I am revisiting this, I am curious too.
Beeb - Very true about the human body. It is so complex, and nothing tested outside the body will ever be an exact science. But, by testing the tumor while still alive and still attached to it's blood supply, it is the best shot we have short of testing inside our bodies. I know what I am doing is still a guess, but I feel it is more educated than just throwing drugs at it and hoping I am in the percentage of women it works for. I guess I am a bit of an experament! I'll be sure to let you all know what my next scan says. We are doing a quick scan (6 weeks), so I won't be wasting alot of time if it doesn't work. I'm being watched very closely.
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It's not just the cost of the chemo but the cost of meds and treatment of SE too.
Can you tell I hate health insurance companies. Blue Cross & Blue Shitshield has been pissing me off with refusing to pay initially. The initially turned down paying my PS for placing the TEs even though it is a law that they have to pay for reconstruction.
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I guess I'm lucky - over here in Australia we have private health insurance but most doctors charge way above the recommended fee. The centre where I had my treatment, admitted me for the day (insurance only pays on in-hospital procedures) and then only charged the recommended fee so insurance paid all of it and no cost to me. So for 6 x TCH and 18 herceptin (that is paid for by the government) I never had to pay one cent - not the same situation for surgeons, anaesthetists etc though.
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There may be a profit motive in chemo for some "private" oncologists, though one could say the same thing for every appointment they make, and every in-office test they perform. They do have to charge more than "cost" so they can cover their office expenses, malpractice insurance premiums, nurses, staff, equipment, and their own salary, of course.
But my oncologist works for a major academic medical center. She's on salary with them, she's not getting kickbacks for every treatment she prescribes. In fact, after I had an allergic reaction to a chemo, she begged me to stop doing the chemo and go straight to anti-hormonals. But I insisted that I wanted to continue and try a different chemo. (It went fine and I completed the regimen.)
Also, I don't think most oncologists go into the field for the money. They could choose a different specialty, earn more money, and not be around suffering and dying cancer patients all day long. I think most oncologists are motivated by the desire to try to save the lives and ease the suffering of cancer patients. I know a few who went into the specialty because they had watched a beloved family member battle cancer.
I think it's true that the cost of healthcare is sooo inflated. And everyone who works in it is a bit overpaid. I mean, I'm glad that the people who work at my doctors/hospital make a decent living, but I just think the flow of money into healthcare is too great, at the expense of a lot of other fields that could use the money, too.
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I think the drug companies are all but bandits to be sure, but suggesting oncologists get into such a life-or-death line of work purely to make profits is just a little too conspiracy theory for me. My young, smart oncologist clearly wants to save lives. I think part of the reason we all get so angry is because there are very few time tested, sure fire treatments in this game. Chemo sucks. It is hit or miss. I don't, however, understand how anyone gets an overall number of 3% for efficacy. The statistics (I know, arguable, but you can argue anything holistic or allopathic if you'd like) show that in Stage 2 and higher, chemotherapy plays a big role in disease free survival.
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I went through chemo with a private oncologist, who did profit form my treatment, and switched afterwards to an oncologist at a university hospital who does not, and who said he would have prescribed precisely the same treatment as my original oncologist. While I disliked my original oncologist, I do not believe his treatment recommendations were motivated by profit. Nonetheless, if that is your concern, finding an oncologist associated with a university hospital can be done in most places.
The 3% figure doesn't make any sense to me and I don't believe Susan Love wrote it or said it.
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I can't believe Susan Love would say something like 3% as a blanket statement. I was told 2-3% in my case with the size of my tumor and the grade 1. As many others have said I can't believe an Onc. would proscribe chemo just for the money. With my intermediate score of 24% I was not told to do chemo, it was totally left up to me.
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According to the Journal of Clinical Oncology oncologists obtain two thirds of their income from their chemotherapy "concessions."
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Could you provide a link to that information, Mollyann? Thanks.
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Beeb - well said. We have known our onc for 8 years (he treated my DH twice) and he REALLY cares. It was great for me to be able to go to someone who we knew so well already. I keep meeting others who go to him and one lady I know at work says he is her hero because he saved her husband's life 10 years ago.0
