Why Im Not Doing Chemo
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Blackcat, I do not recall what chemo my oncologist suggested. I just said there was no way I would consider chemo. She did say there was a low grade type of chemo that you took more often with less side effects. The only way I would consider chemo is that it was targeted to cancer cells only and didn't suppress the immune system. She was very respectful of my choice. She strongly does suggest herceptin.
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One of the things about the forums that is vague but real is that the vast majority of people here are either just finding out about their cancer and working their way into understanding what they can about it, or are going through treatment, or are within the first couple of years past it.
Many are posting with what they have learned, to try to help others decide what to do and not do. But because most haven't been dealing with cancer for a long time, most of the posts are limited to being from a short-term perspective.
For that reason, posting from an honest longer-term perspective is often unfortunately considered "bad form" or "unacceptable" simply because someone who has been around longer and has had more time to experience first-hand such things as long-term SE's, disabilities, mets, and the truer costs of treatment choices is sometimes considered to be "frightening" and "discouraging" to newbies.
There are some who feel the newbies are simply not adult enough, capable enough, or strong enough at time of diagnosis to read anything other than motherly supportive comments here about cold caps and the "do-ability" of getting through treatment. We each come from a different place of the heart, and those who are being honest about unpleasant truths are coming from no less a place of the heart than those who favor the more suppressive motherly approach. The intentions are to help.
However -- This is a forum specifically in behalf of those who are interested primarily in treatments other than standard treatments, sometimes also considering standard treatment such as hormonal treatment or monocolonal antibodies. They are saying as politely as possible that they prefer independence over dependence, and would like to have that courtesy and respect extended to them in their discussions.
A.A.
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evebarry, to answer your question "Did I miss this but have there been studies done with herceptin/chemo for women 60 + ?" : There is a current study going that is for patients 60 and over to receive trastuzumab without chemotherapy.
A.A.
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Anandagram,
I share your point of view regarding chemotherapy for my diagnosis.
A.A.
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Thanks AA ... perhaps this is why my oncologist is allowing me to do herceptin without chemo. I was told by a few others I would not find an oncologist who would allow me to do herceptin without chemo. My oncologist had no problem with me refusing chemo. I said I would consider it as long as there were no side effects.
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Today is the first day I have posted on the Alternative thread. I do not understand why so many people read and comment on the thread when they do not support the alternative way? It would be like me going to the religious threads and disagreeing with many of their ideas that I do not understand or share. I just do not bother frustrating myself by participating in the threads that do not support my beliefs or that I am not interested in learning more about.
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Anadagram,
People post on this Alternative thread even if they don't support the Alternative way because they are seeking verification. Verification, because they chose the non-Alternataive way; and they have to discredit, the Alternative way. It is the only way that makes what they chose, viable.
I know all about it.
After my 2006 2cm IDC, when the docs wanted me to do the whole breast radiation, I kept going back to the radiation docs, with study after study showing that my really low risk cancer did not need the radiation. I wanted them to say that; I want their reassurance that I didn't need it. I wanted verification; but I never got it. They all just kept parroting the "standard of care" party line. They have to promote the radiation so they won't get sued.
In the end, I literally walked out, at the final stage of the whole breast radiation. I had had the CT scan, "fitted" for the whole breast radiation deal, and they gave me the consent form.
I refused to sign that consent form and walked out. I finally just stood up and acted for myself. One of the most liberating days, of my life.
Which is what we all have to do, in the end.
These women that come to the Alternative thread and try to trash us that do follow it are just insecure. They are trying to find verification for their toxic choices. By trashing the alternatives.
I know how hard it is to fight the doctors and this business that they have got going on. Yet, it can be done.
You just have to do it.
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It is difficult to choose to do conventional treatment, and it is difficult to choose to do alternative treatment.
The difference between dependence and independence isn't related to the choice that is being made for treatment. Those who come here introducing the topic of standard therapy and then insisting that their personal choice for standard treatment is best rather than informing others on the topic of this forum, are seeking to create a dependency.
It is adult to recognize the right of others to believe differently and to choose differently.
Saying that "most" of the people on these forums have at best a few years of personally experiencing the effects of treatment is different than saying "all" others. Secondhand knowledge is meaningful too.
AlaskaAngel
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I only viewed this thread because it was in the active topics and caught my interest. This is such a touchy topic with so many people. Right now I am stage IV and any and all tx options, conventional and alternative are on my radar. Anything that will give me more quality time with my family is worth the world to me. Problem is we all are at different ages and stages of health. Hearing one person say she has RSD would definitely make me think twice about conventional tx. My brother has that and seeing how much he suffers already, I just don't think the possible side effects of chemo both short & long term are worth it for him to try. Is it really worth it to just be alive no matter what the cost? That is a personal question we all must ask ourself. We can only answer it for ourselves. What I can tolerate tx wise others just cannot.
I have sadly had to help dear friends wither away and die from this disease because the tx options made them so drastically ill that they had no quality. At least they could participate somewhat in their daily lives by taking rads and possibly fluids and steriods to make life bearable. Chemo had them so ill they were hospitalized and couldn't enjoy any comfort life has to offer.
I don't thnk I want to be alive in a bed hooked to fluids and meds only to be awake for short peiords of time. The pain I would have to see in my childrens eyes would be too much to bear. I want the to remember ME, the happy me, the one that could do things with them even if it is as simple as eating dinner together and laughing. But that is just my choice. I still don't know when I will say quit and give in to this beast. At the moment that day is not here.
I may choose to die sooner if I were to know I would have some illness free time with my family to make some wonderful lasting memories. To tell them the things I want them to hold onto after I'm gone, to really celebrate the wonderful life we had instead of them remembering a hospice nurse adminstering more pain meds or a dull hospital room with that nasty hospital smell. It's just personal.
In early stages of cancer it still is that same personal choice. There is no guanartee that taking all the chemo, rads & sugery suggested will increase your odds. Some people still have a recurrance and die even from the early stages bc even if they did every possible tx. They don't know what causes this disease, why it grows in some and not others and most importantly they don't know how to irradicate this disease. Considering they have been struggling for over 20 years and really aren't much further than they were before... pretty sad state.
I have done alot of reading and research over the last 5 years and have found some pretty interesting theories and alternative tx that make sense and are much less harmful to our bodies. I don't know why money isn't put into studying the obvious. Some theories are so simple yet seem so possible. It's just not studied that way. Big pharmaceuticals couldn't make their outrageous profits if taking something as simple as a vitamin or plant concoction would help us battle this beast.
I have now gone way off topic, I just don't understand what the disagreement is about. I personally want the knowlefge to detemine if the alternative is worth considering so to me this forum is as valuable as any.
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LuAnn, what you wrote was beautifully said. I appreciate you sharing from the heart point of view. In the end, it's quality of life for me. It's good that someone understands RSD. We all are different and what and why we choose what we do factors in the decision we make.
We can't assume our treatment plan is what is best for someone else. I do not oppose all conventional medicine, or do I aggree with all alternative medicine. But this is a thread looking for alternative to chemo and to why I chose not to do chemo. Also to discuss herceptin without chemo.
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LuAnn - Your posts have truly left me enlightened. They are the most empowering posts I have ever read. Thank you so very much.
Sher
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I never planned on doing chemo...just praying that my onco score will reflect and reinforce that for me. It should be coming back next week at the latest. If it comes back with a higher score, it means that I must be extra vigilant on my diet and supplementation plan.
I'm still on the fence with rads. I have app'ts with oncos this week to go over that and see what I can do to prevent any heart damage if I do them. If that can't be guaranteed, then I will forego them in favor of keeping my heart healthy, because what good will it do to do the rad treatments and then die from heart complications. I already have a valve problem and recurring PVC's that I don't want to worsen.
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Yes, the Alt Forum often devolves into a fight, mostly because it has the strongest opinions on the board. I mean, imagine if someone posted on the Chemo Board "Why ACT is the Most Effective Chemo." People would be seriously pissed and, before you know it, someone would be defending TAC or FEC. This kind of disagreement just doesn't happen on the other forums.
And the strong opinions are from both sides, obviously - you have people who think conv treatment is the only sane choice and you have folks who think that conv treatment is poison. I can tell you that they both have their merits - everybody here knows I did it all and am fine now. Best shape of my life, in fact. But I give a lot of credit to the CAM and alt treatments that I do for getting me through the conv treatment so well.
I think it all boils down to the fact that this is a pretty tricky disease and everyone is trying to pick the treatment that will help them beat it. We all want to feel like we made the right choice because we all want to live, so when someone comes along and implies that we chose poorly, our hackles go up.
Me, I come to this forum to gather as much information as I can. I think there is a lot of validity in alt treatments and I'm glad that I incorporate many of them into my survivorship plan. And I hope that we all make it, no matter what route we chose.
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I posted a similar message to this thread a few weeks ago but I feel it bears repeating. I am at a loss to understand why this subject is polarizing to the point where it devolves into nastiness. Yes, I realize everyone is passionate about what they regard as "the right" treatment choices. What I don't understand is why they feel they must urge others to follow the same path, especially in a forum that is for those who choose alternate over conventional treatments. Choose is the operative word because as adults, we can choose what we do to treat bc. I think that despite whatever beliefs or evidence one may have, women should be able to make choices without being berated or belittled
( and it goes both ways!).
I hope everyone finds peace in their treatments decisions and respects the decisions of others.
Caryn0 -
Very well said, Caryn - thanks!
Sher
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....yes, this forum does become very heated - I thought the "Anyone else with bc and atheist" site would be a very volatile site, but it usually is not....go figure.....
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....duh - sorry for typo - meant to type, "Anyone Else with BC An Atheist" thread.
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Yorkiemom question for you as you did not have chemo and it wasn't recommended. Our diagnosis is similiar but I have 2 more positive nodes. My onc recommended chemo and radiation and hormone therapy. Can you tell me what was the supporting discussion with your oncologist was like? I am just curious as everyone seems to say something different. Had they ordered the onc score? I asked and they said with nodes they don't in Canada.
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Most of us who come here are open to alternative and conventional. Most of us aren't here to push anything on anyone. Those of us who come here are looking for alternative treatments...for me I am searching for alternatives to chemo and cancer prevention.
Some feel that a lot of alternative treatments are nothing more than money making scans and quackery. The same can be said by the pharmaceutical companies and etc. I know of real people who have gone to a few of these alternative cancer centers and have been helped. And, too, there are people who have been helped by chemo.
If someone feels 100% alternative, I respect their choice. They are brave. If someone chooses only to go conventional following doctor orders then they too are brave. No matter what choice we make, we must do it because WE feel it is the right treatment for us. Personally, if I did something against my conscience or doubt a treatment plan, I would regret it for the rest of my life. I have.
I followed doctor's orders several years ago that changed my life forever. After breaking my wrist a doctor put 4 pins in my wrist, which caused extreme nerve pain. In my gut, I didn't think putting the pins in was right for me. I shared that I was allergic to metal, but he thought six weeks wouldn't be a problem. Besides the extreme pain, my fingers turned purple and swelled and the doctor still wouldn't take out the pins. It ended up that the pins caused me to have a forever dx of RSD. I asked to have the pins out and he wouldn't take them out for six weeks. As an artist, I now have a stiff right hand that burns, and when stress the hand turns purple and hurts like crazy. So, I try the best as I can to keep away from stress and do the therapy for it to keep it from burning. The RSD can spread throughout your body and for some people the disease destroys their life. Any treatment that involves the nerves can cause the RSD to flare up and spread if possible I will try to avoid. From that experience, I made the decision that I would never again go against my intuitive or gut intelligence. In the end it's our life...and we live with the consequences.
I hope that no matter what choice you all make that it works for you. It's time we all embrace one another and accept us for who we are and our choices. We need to get on the same side...and fight for one another no matter what choice we make. Remember we aren't the doctors... and not all doctors agree. Nobody has the cancer cure. When you are dx with cancer, no matter what stage, you have to make tough decisions...either way.
Again, this thread is alternative to chemo.
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Eve, rest up, hope you are feeling stronger, love n.
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Eve: after reading your story, I can totally understand why you'd hesitate to do chemo! I personally didn't think too deeply on the subject. I had a highly aggressive, Her2 positive, stage III cancer, 2 masses, the largest one was 3.5cm, and four nodes were positive. I didn't feel I had a choice. After a mastectomy, I did 4 rounds of A/C, which was tough to go through, blurry eyes, jitteriness, loss of appetite, and then Taxol/Herceptin for 12 weeks, which went fine. I just had some peripheral neuropathy, which is resolving nicely with neurontin. Then I had 28 proton beam rads, which was a worse experience than the chemo! As for any lasting side effects, damage to immune system, etc., I just don't know. I never had a problem with my blood counts, never had to reschedule a treatment, didn't get sick. I'm pretty healthy, which likely helped. I'd do the chemo again in a heartbeat if I had to. But of course, I'm hoping I'm done now, ha ha.
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I just discovered what may be a lump in my other breast. It was tiny a couple of months ago - now it has grown. If it is a recurrence, I will not do the preadjuvant chemo - lumpectomy and rads that I was persuaded to do - no, this time I will take charge and demand a bilateral mx. I should have done that in the first place, but no, I listened to the med profs. who are so hell-bent on "breast-conserving surgery". To hell with it - I am 57 - I don't care about preserving breasts - I want to save my life.
Sorry for the rant - very scared at the moment.
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Anandagram, so sorry to hear of your worries. I'll cross everything that it's nothing to worry about.
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Granualle - thanks so much.
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thatslife...I missed you! How are you?
Anandagram, I understand your desire for a blmx. As much as it hurts, it is easier than long term treatment. Get it out before it gets beyond the breast. Get it checked out asap and let us know how you are doing. We're here for you. (((hugs)))
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Thanks so much evebarry, Will do! Hugs back to you.
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....I have checked and rechecked the possible lump this eve. I have very fibrocystic breasts - My hope is that is the case. Staying positive - that's the plan!
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Anandgram,
Oh, so sorry to hear abou this - keep us posted. I was scheduled to have a UMX and went for the BMX for this exact reason. I have fibrocystic breasts and I didn't want to freak out over every lump. Hoping it's nothing!
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Anandgram: Keep the faith and assume this is a fibrocystic mass. The main thing is, you are getting it checked early on! Keeping you in my prayers!
I have an app't with my PCP today to check out heart issues that they found on my pre op screening. This will determine if I do radiation or not, at least in my mind it will. I don't want to have radiation to kill something that may not be there, only to have a worse outcome with my heart! That just doesn't seem reasonable to me, when I was dx with clear margins and nodes after surgery. I have been having some major heart palpitations which are probably caused from going off the BHRT, and I'm hoping something can be done for them. They can be unnerving at times.
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Thanks, Kaara - Best wishes for good news about your heart!
Sher
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