WHY would I put myself through this?
Comments
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Alaskaangel I have heard Dr. Slamon speak about chemo as "slash and burn" treatment that kills far too many good cells along with the bad and discuss that he is hopeful that targeted treatments like Herceptin can be combined with other targeted treatments i.e. new drugs that are in clinical trials so that chemo can be avoided. I guess that gives me hope. We have a very long way to go and the drug approval process isn't helping matters.
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AA ... go back not so far in history and read about how much worse treatment used to be. They will continue to make progress for the same reason that progress has been made in the past ... because there are a whole lot of good, caring people researching and looking for better treatments and a cure for cancer every day.
It sounds like you had a bad onc ... but that does not mean that the whole medical establishment is a bunch of money grubbing, uncaring, unethical jerks. I was never made to feel like part of a 'herd of cattle' and I'm sorry if you were. Nor did I make my treatment decisions without doing research and thinking about what I needed to do so I'm not real fond of the implication that anybody who goes along with standard treatment must not be too bright.
Research has already made it pretty clear that the size of a tumor is not nearly as important as its aggressiveness. Being Stage 1 does not make an aggressive tumor not dangerous.
That being said ... I do agree that medicine is becoming more and more of a business and we do need to practice some 'buyer beware'. I personally think they go way overboard with referring everything to 'specialists' and wanting to run expensive tests for every little thing. Not everybody would agree with that either though. So we make our choices based on the best information we have and hope they are good ones.
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Dragonfly-I think the cranky people are the ones that seem to do the best and live to be 100, so maybe we are on the right track.
I too think the research and treatment has come a long way and continues to. I agree that the targeted drugs that are under research, the vaccines for her2 that are currently being testing, etc, all show that they are trying to find a way to address the real problem, not use chemo as an overall treatment. And I don't feel I am blind to all the options. I have read about customary treatments and also the alternative and natural therapies. Quite honestly, the natural therapies don't have any more science and validity than the medical treatments do. During chemo, I stuck with the medical plan. Now, I am trying to help myself by using some natural therapies, as well as some medical ones. I'm also keeping records of what I use in case it all goes to hell in a handbasket, they can send it to my doctor for his research. There are plenty of drugs out there to keep the medical establishment in business for decades. And many of the doctors don't like the business end of it either. I would complain way more about the insurance establishment than the doctors, and we have great insurance.
I feel that if they were all in it just for the money, I would be able to get more of the followup tests I want to have that none of my doctors will do or feel is necessary. So annoying. However, since I just read on this site that unnecessary testing like ct scans should be avoided due to contributing to bc recurrence risk, I guess I should appreciate their refusal.
Gimme a B...Gimme a C...oops...sorry
Bahahahaha!!!
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Whiterabbit,
We are all wanting better for each other and ourselves, but especially for generations to come. It would be interesting for those of us who went through the chemotherapy to meet here in 10 more years, to see how many more stage I's that follow us have done the same thing we did, and see just how long it actually takes for the dedicated, conscientious, intelligent researchers to get around to verifying that chemotherapy is essential as part of the cocktail given to stage 1's who get herceptin, based on the impression that "Research has already made it pretty clear that the size of a tumor is not nearly as important as its aggressiveness. Being Stage 1 does not make an aggressive tumor not dangerous."
In the meantime, researchers continue to accept and assume (but not prove) that trastuzumab is unable to handle an aggressive stage 1 cancer without the chemotherapy.
As you say, we need to be intelligent enough to question the recommendations made to us. I am intelligent enough to question why, without any proof whatsoever, the dedicated medical providers have made it so difficult for intelligent early stage 1 patients to obtain trastuzumab alone as a matter of choice, when it is known that chemotherapy is carcinogenic.
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AA - they have already shown that Herceptin given at the same time as the chemo is more effective than when given after. So, that could indicate having them together is better than herceptin alone.
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Hi susieq58,
Each sequential chemotherapy treatment lessens the ability of the immune system to fight diseases like cancer. So it would make sense to question a bias favoring chemotherapy as being superior, because any treatment offered only AFTER chemotherapy concluded would have little help from the immune system. Hopefully someday we might know the answer to those possibilities.
A.A.
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I understand that chemo decreases leukosites and the effects of chemo are cumulative but white blood cells are replaced by the body every 3 to 4 days and in between chemo cycles (my sisters white count would start to recover on their own. Later she needed neulasta to boost her white counts. ) but the immune system is so dynamic that it recovers very quickly and then can get on with its job?
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My counts never slipped out of normal. They came close at the end, but I squeaked in. So I did not get any shots as he only gives them if you drop too low. I did end up with a tissue expander infection that I think I might have been able to fight off had it not been for the immune system being suppressed somewhat.
I just had an annual physical with my primary doc, who did a full blood work up, hormone panel, etc. All my counts are really good now, exactly six months post chemo. My onc does blood work before every treatment, but this one was really detailed. Made me feel somewhat reassured to know.
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I never needed neulasta shots and my counts are fine now too.
Merry Christmas girls!!
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Merry christmas to you too suzeieq58! Good to hear that your bodies are getting back to normal fluffqueen01 that must have been really reassuring. Xx
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No moral superiority here. Just love & support to a sister in need.
A neighbor died yesterday. Two houses down - lovely man - early 60's, prime of life, retired, traveling. Felt funny on a trip (to India, maybe?) and thought it was the food. Found out that no, it was stomach cancer. Six months later (and after lots of chemo and stuff) he is gone.
It's almost 3 years since I was dx, and I am strong, happy, healthy and loving life. The dark days of surgery/chemo/herceptin/rads are behind me.
I KNOW there's no comparison between him and me. Different cancer, found at different time, etc. BUT I feel lucky to be here.
And maybe one thing that helps to get through this is to make your decision and not exert the energy second-guessing and regretting and rethinking. I dont know if we have enough strength to expend some on that and still have enough left to endure. Just a thought.....
PS - if you won't do the tamox, consider DIM as an alternative.
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I'm losing a fingernail. The middle one on my right hand. It became painful and swollen for several days for no good reason then filled with blood. I took the acrylic nail off to see what was happening - sore and filled with blood . So then I took all the acrylic nails off and the rest are fine.
Debating whether to put all the acrylic nails back on on Monday. May depend on how sore the bad finger is. Has anyone else kept acrylic nails through chemo? The oncologist didn't say anything about
it so i assumed it was ok.
The sore finger is less sore so maybe acrylics will be ok.
If I don't have the acrylics I bite my nails to the quick and chew the cuticles to bloody pulp. Right now is not a good situation. LOTS of biting and chewing opportunities. -
TLG - I used to bite my fingernails until I had chemo. I grew them so I could paint them black (suggested by the onc). Made a big mess of it but I have not bitten them since.
Merry Christmas!!!
Sue
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One thing about nails.... the natural nails provide an easy quick way for health care providers to determine what your circulation quality/quantity is, and covering them up with polish or false nails doesn't allow them to do that. Most people are healthy enough as a rule that it is no big deal, but as a cancer patient, your health is fluctuating more extremely for a long period of time. I don't think your providers will set the rules for nail coloring and false nails for you. It is up to you to decide whether you want them to have that additional method of watching how you are doing in caring for you as you go along.
A.A.
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TLG-I did the new shellac all through chemo and have continued while on herceptin. I did the french manicure so I cold see any changes. Right now, I dont have anything on until next week as I thought I needed to give my nails a break, but with nothing on they are really thin. I don't know about acrylics, but I would definately keep something on them. I can be a nail biter myself!
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I also used the black nail polish during chemo as advised by my nurse who said that it would help them "stay strong" during treatment. I did not have any nail problems but I do not know if that was why...
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Had my third treatment on Tuesday which was uneventful. Threw up all night that night but was able to eat the next day which I consider a win. My oncologist gave me a new drug that helps for the heartburn/indigestion which has plagued me. I now have so many drugs I can't keep up with what is for what and it makes me feel about 80 years old.
Still wishing I could get that twilight drug until this is all over.
I went to get my nails done the day after the treatment and almost passed out in the salon. I sat there for at least ten minutes trying to convince myself I was going to be OK before I had to go lay down in the back. I had to call someone to pick me up. It was awful. I have no idea what happened -- maybe the odors although nothing hit me on a cognitive level. Went back the next day to complete the job - I had to go one way or the other -- so I have covered up whatever nail problems exist. I'm good with that. Icing my nails with the acrylics freshly removed gave a new definition to unbearable.
I haven't driven since that incident. Not sure when I'm going to feel OK with driving -- the dizziness, etc. just came on so FAST. I'm meeting with the cardiologist next Wednesday so maybe he will have some thoughts, although I doubt it.
I vacillate wildly between thinking I totally got sold a bill of goods and am being ridiculously overtreated to certainty that that HER2 thing is going to get me in the end for being so cavelier about its power. I don't even think about the ER+PR+HER2- part of the cancer -- beneath my notice and unworthy of consideration, and certainly unworthy of the SE's of Tamoxifin and whatever my oncologist has planned for me next. Not a chance.
Low grade fever and I sleep, sleep, and sleep some more. Dreading next week with the Herceptin/post steriod double whammy.
This too will pass.
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TLG - Hang in there! I felt like I was 80 years old too during chemo. Especially when I would get up after sitting for a while. I had to make a chart for myself to keep track of all the meds and make sure I took them on time.
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Quick update.
I had my 4th of four TCH about three weeks ago. I used the Penguin Cold Caps and kept 98 percent of my hair.
I am vigilant about exercise and what I eat.
I was meant to start the every three week Herceptin on Tuesday.
I have decided to terminate all treatment and have my port removed at the exchange surgery at the end of the month because I am unwilling to endure any more side effects.
The fatigue is unrelenting, I am always nauseated and hungry at the same time, two days before my second treatment I jogged five miles - slowly, but still I did it, and today I couldn't jog a mile if you put a gun to my head.
But the worst - the WORST - is that I have gained over ten pounds.
I eat to keep from feeling like I'm about to faint - just enough to do that- I exercise, if that is what you can call the pathetic time I spend moving, I drink a ridiculous amount of water - and I'm putting on pounds like something out of a cartoon.
That is simply not tolerable. I would, truly, rather be dead than fat. And before you go all judgemental on me, I come from a family with morbid obesity as does my husband. Being fat is miserable - MISERABLE.
My brother in law pointed out tonight that I have "filled out". My feet and legs are so swollen I fear the skin will split.
Enough. I quit.
I QUIT. -
((((Hugs Ladygrey)))))
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I had not seen this thread for quite awhile and saw it in the active topics tonight so decided to check it out. Wow, rather be dead than fat.....good thing I don't feel that way. Have been up in weight at various times during the last 14 years since my cancer recurred and depending on the treatments. Am up right now and was considering going back to WW, but figure I have bigger fish to fry at this point..... I need to concentrate on living. Everyone is entitled to their own opinion and choice and I hope yours is what is best for you.
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LadyGrey, Don't let your brother in law's comment get to you. Anyone who jogs 5 miles during chemo will lose that weight in no time once you get your stamina back.
On the other hand, do get the swelling in your feet and legs checked because that and the fatigue can both be signs of cardiac issues starting up.
((((gentle hugs)))))
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Lady Grey,
It it clear that you've had a miserable time of it. I have never been fat but then again, I've never been dead either. Being a bit closer to death than I'd like ( though not too close), fat doesn't sound too bad. No judgement but those who are overweight might have a bone to pick with your statement. We all make choices and I wish you the best.
Caryn -
Lady Grey - herceptin by itself will be 100% less of an issue for you - please don't give up just when you've made it through the horrible part!!!
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BTW - The swollen feet/legs thing goes away in a couple of weeks - it's the taxotere.
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I do not mean to offend anyone.
We all have to decide what is tolerable for us. Everyone's line will be different.
Perhaps if is was just being fat I could deal with it ..... maybe.....MAYBE. But being fat and not being able to exercise in a meaningful way such that i will remain fat and, in fact, get fatter and fatter, is, for me, more than I am willing to tolerate.
I have clinical depression. Treatment exacerbates it. Being fat exacerbates it. Being sedentary exacerbates it. Understanding that I don't even have control over my own body exacerbates it the most.
Thank God I have my hair. Being bald would have exacerbated my depression beyond reaching. Well, actually, that's not true as I would have refused treatment altogether.
So, yea, I'll take the risk of recurrence over the certainty of being fat any day. For me, that is not even a decision. What's the point of being alive if you loathe yourself?
I was a good girll and did what I was told with the chemo, but now reading the Herceptin side effects thread, forget it. And after reading up here on Tamoxifin there is not a chance I will take that either.
I have enough misery in my life without have it infused every few weeks and swallowing it every day. -
tlg...good luck
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Oh Lady Grey~
I know we are all different but really my only side effect with Herceptin only was a runny nose.
Hugs to you.
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Lady Grey - why not try a couple of herceptin treatments? You can quit after that. They really are a breeze - don't think you will have the SE's others list. You've got this far, a couple more wouldn't kill you - please give it a go. The herceptin is the MOST important part of the treatment.
Sue
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Every one of us has different risks, different circumstances, different tolerances, and different opinions.
When I went through treatment, the bland reassurances about treatment, SE's, and weight gain to get me to do it turned out so often to be false down the road. Some just refused to understand that "easy weight loss" for them after chemo could be true because they were younger when they finished treatment, and yet not true for someone who is older.
What is the hurry? Give TLG some time to recover. After all, when trastuzumab was approved, it was authorized to be given to those who were 6 months out from completion of treatment. Then it was authorized to be given to those who were up to a year out from completion of treatment.
In the situation of extremely small tumors, just what is overkill when it comes to treatment, if the treatment with chemo and trastuzumab is identical for all HER2's no matter what size or Ki67, etc.?
What a slippery slope.
If we still have never bothered to figure out whether trastuzumab used alone would be adequate without chemotherapy, then maybe we should be a little more genuinely factually careful when insisting that people who have such small tumors go through the nightmare of chemotherapy first, just so that we can push them to do "more" after they are done with chemo. Maybe we should be a little more willing to provide them with more support for doing trastuzumab alone if it is so essential that they have it.If it isn't chemo, it is trastuzumab. If it isn't trastuzumab, it is 5 years of an AI or tamoxifen.Tiny tumors always suddenly have huge shadows. One can live in terror, always throwing the book at it on the basis that "at least I won't have any regrets".... until one has done it all.... and then is terrified because there is nothing left to throw at it.AlaskaAngel
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