Why Im Not Doing Chemo
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Zometa is a drug that helps protect your bones if you are on a hormone drug - also used for bone mets.
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Eve..At diagnosis I was 53 and pre-menopausal, so my protocol includes Zometa, Tamoxifen and shots of Lupron EVERY month in the tush!
Have you read the INFUSION ROOM ETIQUETTE thread yet? I just can't wait for my next visit in three weeks. I go there armed with a book! And I do mean ARMED! Thankfully, I haven't had any of the more memorable experiences that some of the other women have had that posted. I'm thinking of writing a book about some of these women's experiences. You have to read the thread!!! What I learned was you can never be too armed when you enter the infusion room!
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voraciousreader,
Here's one more for your book:
I have worked with the individuals who administer the chemotherapy in the "infusion room", and one day when I was in my chair receiving my Adriamycin cocktail IV, the nurse who happened to be administering mine was a woman in her 40's whom I knew well. She and her family maintained particularly rigorous diet and exercise as a lifestyle, which I believe in as well. As she was administering my treatment we talked. I explained that like her, I had never in my life ever put anything toxic in my body before, so it was very difficult for me to do chemotherapy. This woman with many years of experience in administering chemotherapy looked at me wide-eyed and said, "I've never reallly thought of it that way before...."
Obviously, she believed that while I might have lived exactly as rigorously as she had, she would never have to personally do treatment herself....
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Whenever I hear a discussion about the merits of a "good attitude", I think of the late columnist Molly Ivins, who died of IBC:
I suspect that cancer doesn't give a rat's ass whether you have a positive mental attitude. It just sits in there multiplying away, whether you are admirably stoic or weeping and wailing. The only reason to have a positive mental attitude is that it makes life better. It doesn't cure cancer.
Read more: http://www.time.com/time/magazine/article/0,9171,201917,00.html#ixzz1faTM3cagOne's "good attitude" makes the people around us feel better, that's for sure.
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AlaskaAngel: I think everyone believes in their heart they will never have to go through this kind of challenge in their lifetime....I know I did. I watched my friends suffer greatly during chemo treatments...some made it...some didn't, but they all had poor quality of life. Some came through it fine, and went right back to their old habits...not changing one thing about their diets or lifestyle.
I shake my head in wonder. I would do almost anything short of chemo and hormones to prevent a recurrance, so if it means I adjust my diet and lifestyle to one of anti cancer, so be it. It is difficult to do that as I'm finding out, but it's a preferable choice for me.
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Nobody said a "positive attitude" cures cancer. At least I have not read anyone here say that. However, there is evidence that it can reduce stress (and "positive attitude" is a simplistic term used for the effort of maintaining positive psychic energy which often takes a HUGE effort), and a reduction of stress has been shown to have beneficial effects on one's physiology and specifically the immune system and the ability of the body to fight injury and disease. But nobody has ever said it "cures" cancer.
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AlaskaAngel....I regret that you had that experience. However, while I wasn't there, I read what you wrote and re-read it several times and wonder if she meant something like...she didn't think chemo was toxic, but rather something that was good instead? Maybe from her perspective, she has seen many women do well with chemo and gone on to enjoy good health after completion of therapy? Nonetheless, you did have those feelings, and I'm sorry you felt rebuffed by her.
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voraciousreader,
I'm sure she has been thoroughly immersed in medical bias favoring chemo so I do think she sees chemotherapy as a plus for those with cancer or she wouldn't administer it. My feelings at the time were, "Uhhhhh.... you give this stuff daily without really thinking about it to the point where you have actually never once had the thought in mind, 'What is doing this toxic stuff like for someone like me?'
That reminds me of a presentation I went to by my own oncologist, for both patients and members of the general medical community. The presentation was really the only one they would be receiving that was so entirely focused on his specialty and the treatments available. He thoroughly covered the technical staging, variations of the cancers, and the treatments available. He totally avoided any teaching for the medical community about possible side effects, possible sources for referral for couple counseling in support of doing treatment, etc. There was no indication he was aware that those too are part of his job.
So, that is what the chemo nurse has as her basis for helping her to help patients.
BIAS.
A.A.
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So, did NOT having a positive attiude allow our cancers to grow? Was it negativity that changed our DNA to allow stray cancer cells to conglomerate into tumors rather than just die off?
Our attitudes did not cause our cancers, any more than our attitudes will cure our cancers. Good attitudes generally make us feel better, and if we feel better, then we think we're healthier.
I'm not convinced my cancers were caused by a breech in my immune system, either. But it's fine if others feel that way.
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This thread is about why I not doing chemo, perhaps a good discussion about chemo. I appreciated both the pro's and con' stories. For me, I just wanted to be understood to why I am reluctant to do chemo. Down the line I could change my mind...especially if they come up with a targeted, low dose chemo without the present side effects. We all have to count our risks and make the choice that we can live with.
Today, I visited the chemo thread to find the 'infusion chemo room' protocol. I learned that on the chemo board there is a pro-chemo thread in reaction to the chemo threads on the alternative board. I didn't read it all, but enough to see that it's a place where our pro-chemo friends vent about women who are "anti chemo" and alternative medicine for chemo treatment. I'm not going there again. I prefer to stay away from those who find it fun to talk down about their fellow bc sisters who don't share their opinion. If that thread was on the alternative forum, I of course would feel a need to stand for what the alternative forum is all about.
This thread is not about attiutde causing cancer. No one knows for sure what causes our cancer or apparently how to cure it. If some of you feel the need to begin a thread about attiutde/cancer then please start a thread addressing attitude & Cancer Connection. It would be an interesting discussion.
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Hi eve, hope you are going ok
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I think if one is doing chemo, they must absolutely believe in their hearts that this will help them; otherwise, why would anyone put themselves through the hell on earth that it does to them. I made a bad mistake of telling a friend who had undergone chemo for colon cancer that studies revealed it was not effective for her type of cancer. She hung up the phone on me and hasn't spoken to me since. I learned my lesson. This is why I speak of not doing chemo only from the perspective that it is not an option for me personally.
If we are confident in our decision, we should not have to justify it to anyone. If someone comes on this thread to challenge decisions we have made, unless they have made an incorrect statement, it is best to just ignore their rants. If someone is looking for a fight, they can't start one in an empty room.
Have a great day everyone!
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Well said Kaara.
thatslife...I'm good. I'm off in a few minutes to see my bs ... pre-op appointment...and a echo for the heart. The oncologist I saw doesn't like to do muga because of over exposure of radiation. I have a pet scan Wednesday morning and a pre-op appointment p.s. early Friday morning. Besides work and a art exhibit and a few parties this is a busy week.
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Kaara - Hope and reality doesn't always mix very well does it. Gotta be a middle ground somewhere with the two edge sword BC presents. BC has often made me feel as if I'm in a pool suddenly finding myself drowning and all I know how to do is dog-paddle, or back float. I keep hoping someone can teach me everything I missed in swimming class, before it's too late. The reality is, I've figured out floating on my back and being still is sometimes the best solution. Age can teach a lot but I'm guessing sometimes grabbing that life perserver because you haven't learned to float yet, just seems the right thing to do. It may be pulling you towards a waterfall or something worse but there's a sense of safety with it and it must seem to some it's the only way. I guess pointing out the waterfall is unacceptable to most dog paddlers but please if you see me heading towards that Fall give me a shoutout! LOL
Anne - I'll be careful not to share my positive attitude with you girl. LOL. I got the sense from your post I'm just a Big Red Tomatoe with a Big Black Spot and with or without a positive attitude there I sit. LOL A tomatoe grower can cut out the bad spot but I'm going to disintegrate into compost anyway. LOL. On top of that the tomatoe grower is going to infuse me with pesticide. Geez....Enjoyed your rant though I can't see where a positive attitude has much to do with what evebarry is sharing. LOL
Caryn- I would never make light of what anyone with BC at any stage is going through. We're all just listening and learning.
Evebarry- I'm hoping all is good this week and you enjoy the hey out of those parties and the art show. How wonderful you have something good to look forward to through this roller coaster ride. I have made an appointment for tomorrow with a new Onc and need to discuss many things with him. Good Luck to me. Dr. Rowen does the C infusions and I have a conversation with him scheduled for Thursday. I just think we're lucky to have options these days. I remember when there weren't any. Am still reading and putting up Christmas lights and years gone by ornaments we love. Hoping all goes well with the echo and PET. I still think the Biopsies are worse than the rest of it. God Bless girlfriend.
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It's been a long day! Jazz, I love your illustrations. I'm a visual person so I' really see what you are saying
I had the echo heart thing done this morning. The tech lady, who works at the same center as my oncologist, was very nice. I asked her if women ever took herceptin without chemo. She said just a few, and one was an associate, who tried chemo once and decided it wasn't for her. The idea that they allowed even a few to take hercepin without chemo was encouraging.
I walked through the infusion chemo room today to the echo room. There must had been 20 or 30 people getting some kind of infusion. A few people were chatting, but mostly people were quiet. I didn't feel quite as scared as I did the other day when walking by the room. It felt surreal.
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jazz3000.. you are one entertaining writer. I love stumbling across those who have a way with words.
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evebarry,
Over time I've seen a couple of stage 1's who were HR+ and HER2+++ who did trastuzumab alone (with aromatase inhibitors later for a while), none of whom have recurred yet to my knowledge. Many are overseas, where medicine is much less influenced by Big Pharma's pitch for chemotherapy, and much kinder to humans and other inhabitants of the planet.
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AA...my plan is to boost my immune system so the killer cells will do their job. The hercepin job is to stop the her 2+++ . Great to hear about women who took hercepin without chemo still doing well. Encouraging.
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Help me out here girls. Tonight, I've been reading a little about tamoxifen. I also read side effects & newbies on the bco tamoxifen threads. Don't know if I can do it now.
Ok, my oncologist persuaded me to take tamoxifen for a month, in order to do hercepin without chemo. I've been doing a little more research on tamoxifen. Is it chemo? I thought mostly it was just a estrogen blocker. So...for a month, perhaps I could do without a little estrogen and if the side effects are bad, I would stop. But, the idea that tamoxifen is chemo alarms me. What is it really doing to my body? or will do?
These are the side effects...
Vaginal bleeding, dryness or itching, nausea, and vomiting, loss of appetite, irregular menstrual periods, hot flashes, endometriosis, bone and tumor pain, visual changes skin rash and itchiness, dizziness, loss of hair, depression, light-headedness, confusion, fluid retention, headache, anemia, swelling of legs, loss of appetite, blood clots, increased risk of uterine cancer.
There are similiar side effects as chemo...such as hair loss! also, I read somewhere else eye problems... vomiting...I read somewhere else it also causes softing of the liver?
Sounds like similiar side effects as chemo???
If tamoxifen is a form of chemo then I'm popping a chemo pill for 30 days.
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Eve,
Walking out your front door has side effects.
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Eve, tamoxifen is not chemo, , but a hormone antagonist..my GP classes it as a chemotherapy, becuase its a systemic medication..
I did see that you said you would consider it for a month. And i thought to myself, its not likely that you will avoid side effects, though if you have alreadfy gone through menopause, im not sure of the severity. For me there were hot flushes from the next day, muscle and joint pain. I did have tumour flare too, when my tumours were responding to the antagonist (tamox)...but thats a good thing, as it means its kicking in.
Vaginal bleeding, endometriosis, uterine cancer (2% chance) are usually more of a problem after a few years on tamox, according to my onc. Also according to my onc, Uterine cancer is quite slow growing, and usually, easy to remove (hysterectomy)
The rest of the side effects you mentioned, well, i have them all (except hopefully clotting issues), and that is why i had a brain MRI, as some of those can be symptoms of brain mets. Seems maybe everything my body is going through at the moment, could be as a direct result of tamoxifen......I am 100%ER+ and 60%PR+ so to me, the benefits outweigh the risks. I am also stage IV, so again, different issues.
Hair thinning has been mentioned by some, but i havent noticed that. The side effects are tolerable, i just feel old.
Our cancer cells think Tamoxifen is Estrogen, they 'suck' it into their receptors, and the tamoxifen blocks their ability to 'feed' . It is not poisoning the cancer cells.
On an up note, both my onc and myself cannot find one of my tumours (in my breast) and the other breast tumour is so tiny, it could be just scar tissue/calcification. So something has worked.
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(on the breast at least)
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digger, yes, walking out the front door...to get more vitamin D and hopefully exercise.
There are risk...like driving. But, hopefully, I'm not going to do anything stupid to cause an accident. I am not going to do anything to make it happen. I am not going to purposely put myself in harms way. In leu of that example, I feel like popping a pill, I am putting my body at risk for more injury. I need to understand this drug better before swallowing it. Is that fair enough?
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http://www.chemocare.com/bio/tamoxifen.asp
This site and everyone I've read has it listed under chemo but apparently it's a hormone that targets certain receptors of the cancer cells. I think it's considered a chemo because it's given to shrink tumors as well as attack cancer. It's certainly not a hormone we would take for monthly cycles so must be a chemical based hormone created for the purposes listed.
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LOL, eve...good to see you still have your sense of humor during this stressful time. If walking out the front door gave us all those side effects you highlighted in regards to tamoxifen, I think I will stay home.
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thatslife...:) Thank you for making me feel a little better about it. This is what I needed...someone to make sense of it for me. Do you think a month would even help?
I am so sorry that you have all the side effects. I hurt for you. I hate that you feel so old. There's got to be something to make you feel better and give you more energy. I am glad to hear your cancer disappeared from your breast. Amazing. Have they done a recent mri of your breast to make sure there are no more tumors?
My breast surgeon said there is no way I can think about keeping either breast. Is it because earlier stage cancers surgery is enough? Do most stage IV women keep their breast and use drugs like tamoxifen to kill the cancer? Are there different doses of tamoxifen?
more study....more thinking...
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Jazz...thanks for the link
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Eve, here's the list of side effects of Aspirin:
nausea, vomiting, stomach pain, heartburn, hives, rash, swelling of the eyes, face, lips, tongue, or throat, wheezing or difficulty breathing, hoarseness, fast heartbeat, fast breathing, cold, clammy skin, ringing in the ears, loss of hearing, bloody vomit, vomit that looks like coffee grounds, bright red blood in stools, black or tarry stools
I'm not suggesting that it's not important to consider the possible side effects of Tamoxifen, but I'm just trying to make the point that every drug has a long list of potential side effects and most people don't experience most of the those side effects.
If you had a low recurrence risk, it might be fair to look at the list of potential side effects from Tamoxifen and simply decide that the risks are not worth the benefits. I did that. But your situation is very different. You don't have a low recurrence risk - your risk is rather significant - and the risk you face is more than just the risk of a local recurrence. So don't allow yourself to be scared off by a list that you read on a website; make your decision based on how you do with the drug. As others have said on this website many times before, try it and see. Some women tolerate Tamoxifen easily with few if any problems; other women have a terrible experience. You may find that you tolerate Tamoxifen well. If that's the case, you might decide that it is a treatment that is acceptable to you as a way to reduce your recurrence risk. Maybe that's not how it will turn out but you won't know unless you try.
To your comment about your BS saying that there is no way that you can keep either breast, what did your oncologist say? That's the opinion that I would put a lot more weight on.
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What an aweful experience. You might consider writing a letter to the head of this facility and a cc to the CEO! I would also suggest contacting the patient advocate. So very sad!
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evebarry,
I was on it for 1 3/4 yrs... like you, not sure at the time... feeling uneasy....
But...
By studies, those with a high AIB1 who are HER2 positive are likely to develop resistance to tamoxifen. So naturally I thought, well then, why not look and see if someone has a high AIB1 before giving them tamoxifen? But apparently there is no test available for doing that for patients. (Maybe it is a test that has only been used in non-living breast cells in the lab?) I no longer see any onc so I can't ask, and since my onc put me on tamoxifen without ever telling me about the risk of developing resistance to tamoxifen as a HER2 positive, I can't trust his information anyway. When I provided the documentation of this question, both my PCP and the onc more or less patted me on the head and said, "Well, you are probably menopausal by now anyway, so we will put you on Arimidex." I had asked a very intelligent, documented question but you see, they were convinced I couldn't possibly know what I was talking about.
The other comment I have is that I was premenopausal or perimenopausal and then went thru chemo and apparently at age 52 still was not fully postmenopausal so I was put on tamoxifen. Within 3 months, the breasts went from dense on mammography to very clear on mammography, which indicates that there was little estrogen available to maintain the "support" structures" in the breast tissue. It also meant that my breasts changed from being upstanding to being more saggy. Depriving the breasts of estrogen was the goal and it achieved that within 3 months, to more closely answer your question.
But if you have a high AIB1, you could develop resistance instead to the tamoxifen. So that is the unknown, and I don't know if oncs just toss the coin and recommend the tamoxifen because they have no other treatment that deals with the breast estrogen for premenopausal women, or what their thinking is. As far as I know my onc was just putting me at risk and not telling me, and I just happened not to have a high AIB1 level, and got good results.
I hope that explanation doesn't just confuse things further.
If you are postmenopausal I wonder why you would be prescribed tamoxifen, unless it was because they don't think you are willing to do an aromatase inhibitor like Femara or Arimidex, which is what they give postmenopausal patients.
A.A.
P.S. Had my PCP and onc made the effort to answer my question instead of being so rude, perhaps I would have taken the Arimidex. But since they refused to explain how the risk for resistance had been evaluated for my case, I ditched out on the Arimidex entirely. No explanation meant to me that they felt taking the risk wasn't an important issue for them.
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