Quitting chemo early?

spark

Hey all,

I just started dose dense AC/T. I have so far done 2 rounds and I am miserable. I don't understand why I have to do 2 more rounds of AC, then the 4 T. I have not had surgery yet. Does anyone get done early??? I really want to just quit and do surgery...

diana50

sometimes they want to get going with the chemo to attack the cancer cells before surgery.

talk with your chenio nurses or onc about how you are feeling; maybe they can make you more comfortable.

it is just so hard. my opinion is that chemo is really important to kill those cancer cells that are in your body. let the people who take care of you know how you are feeling....

ruthbru

I imagine they want to shrink the tumor down so that you can have a more successful surgery. Ask questions, take notes, ask more questions. I think you will feel better if you become an active member of the treatment team. It's YOU and the doctors who are using the chemo as one of your weapons against the enemy (cancer). Best of Luck! Ruth

ruthbru

Opps, I just noticed this was a Stage III site....sorry if I shouldn't have posted. Still, best of luck. Ruth

Claire_in_Seattle

Hi Spark.....

Either way, you have to do the AC + T therapy.  So why not just get it over with.  I suspect that your oncology team thinks you will need less invasive surgery if you do neoadjuvant chemo (that's what it's called).  This is a good thing.

You can get through this.  I did SIX of each.  I found Taxol less difficult than Adriamycin/Cytoxan.  I also found that trying to eat a balanced diet plus exercise helped.  So I sucked it up and went throught it as I knew that "miserable" was part of the deal if I wanted to live.

Hopefully, you will see that your tumors are starting to shrink with the chemo.  If so, this is great news.  You have aggressive cancer cells (I did too).  So you need to strike while the iron is hot. 

Reminder that you will be DONE with AC + T in just over a couple of months.  You really can do this.  Good luck.

sharonkw

Hi Spark,

Looks like we are in the same boat with the Stage lll, triple negative.  My doctor told me that it would require a radical Mastectomy all the way to the breast bone and that even then he may not be able to get it all. He said that it was to aggressive.  He therefore recommended  AC/T chemo prior to the surgery.

I am on day 5 of the first round.   I too feel miserable all of the time but fortunately so far no nausea.  The meds I take for the nausea is Emend and Dexamethosone.

One of the options he gave me is half the chemo, then surgery,then the other half.  His recommendation was to do it all now.

If there is an upside, it would be that if all is successful and the chemo shrinks the tumor he will do a lumpectomy instead of the mastectomy.

Let's keep in touch.

Sharonkw

spark

what if i choose the whole bi lateral mastectomy deal? do you guys think that could mean less chemo??

krcll

I'm so sorry to hear that you are having such a tough time. I think that the vast majority of stage III women are glad to get as much treatment as possible, since the risk of recurrence is substantial. The different chemo regimes are very standardized and many trials and studies have been done to try to find the most effective combinations, doses and lengths of treatment. I think that you should really try to do the whole chemo treatment offered you, if at all possible. Also, having 2 different kinds of chemo is a big advantage- you have the chance of zapping the cancer in 2 completely different ways. If you can get through the A/C, you may find the SE's of T to be much easier to manage.

I don't think bi lateral mastectomy would make any difference as to chemo treatment. In the decision mastectomy or lumpectomy (unilateral or bi-lateral), their only concern is to get out all the cancer and above all to get clear margins. I think chemo before surgery is mostly done to ensure clear margins. But it is anyway necessary  to do the whole chemo regime to zap any cancer cells floating around looking to set up home. 

You've already managed to get through 2 A/Cs and you only have 2 more! Hang in there because you will get through it! 

amlg1

I had DD AC,but I did do well on it,the Emend and decadron really helped with nausea.I then did DD taxol and herceptin,and belive it or not taxol was a little harder on me,but doable.Everyone is different.You are half way through,you can do it!!

BrandonMom

Spark, getting a preventative mastectomy on the other side will not change the recommendation for chemo. 

I don't mean to sound harsh here, but you have Stage 3, grade 3, triple negative breast cancer.  It is very agressive.  You need to do the most agressive treatment.  Yes, AC sucks.  I had it too.  I did have surgery after the AC and then finished up with Taxol.  I liked knowing that there would be more chemo after surgery.  Statistically, whether you do chemo before or after surgery doesn't matter, but by doing it before, you learn how well your cancer responded to chemo.  They will be able to see cell death when they do the mastectomy.  AC is hard, but you are halfway through. Yes the next two will be harder than the previous two treatments.  Talk to your docs about why you are thinking of quitting.  There may be additional meds that can help you feel better.

spark

it is really scary to read how many of you have had recurrence... am supposed to get the gene testing soon as well, and am terrified of finding out the results..

diana50

spark

many of us haven't had recurrance....doing aggressive treatment isn't easy..but is something you can do. the initial treatment is REALLY important because none of the cells have had a chance to mutate to survive the chemo.

you are scared...and overwhelmed....and would like this to all go away.  please hang in there...do one day at a time....try to not get so far ahead of yourself and into the future with "what ifs" you kinda have to train your brain to stop that stuff.

talk with your medical team; let them know how you are feeling...check into support groups..and keep us all posted. use the boards for help and information**

hugs

diana

AnacortesGirl

Please don't quit!  I'm echoing that you should be very open and honest with your feelings and the side effects that you are experiencing with your medical team.  Everyone is so different with how chemo affects them and there might be drugs or exercise or something that will help you get through this.  Anti-drepessants can be a big help.  Not only did it improve my attitude but it helped with my sleeping.

Triple negative is very aggressive.  But studies have also shown that many triple neg cancers respond very well to chemo.  You have a higher chance of getting a complete response from chemo than ER/PR positive cancers.  A complete response means that once the chemo regimens are complete they cannot see any cancer in the body.  It makes the long term prognosis very good for no future recurrences. 

This treatment that you are going through now is your best chance of ridding your body of the cancer.  The goal of this horrible treatment is to get all the cancer out of your body and out of your life.  Having a mass develop elsewhere in your body that is large enough to detect on scans means that you move to stage IV.  Then it's no longer considered curable and the goal of treatment is just to manage it.  During this part it is so important to make decisions that you won't regret later.

During my chemo my goal was to make it through the week.  In the darkest part, when I was feeling the worst, my goal was to make it through the day.  And I'm happy to say that I got through 26 weeks of infusions.  At times it seemed like forever but if I didn't try to look too far ahead it really helped.

You might want to check out the American Cancer Society website.  I know they have a number that you can call and talk with a person who has gone through treatment.  I managed to connect with some local women and it made me feel so much better when I could talk for a few hours with another person who understood what I was feeling emotionally and physically.  It was so wonderful to know that I wasn't alone and to see someone who made it through this rough time.

Keep coming back and let us know how you are doing.    

kdrez

Chemo ain't easy and I didn't think I was going to finish.  I remember when I would be so sick to get out of bed for two days and I told my kids "one more day like this and I quit", but the next day came and it was better.  I was able to finish and you can too.  It is amazing how strong we are.  Keep asking questions on the website, cause I wish I did back then.  We are all here for you and you can make it through this transitional time.  It really helped me when I read that cancer is manageable like diabetes and heart disease, I thought "no way comparable", but it is so true....your a fighter and you can do it!

blondie45

Yes, please talk it over with your onc and/or chemo nurses. You have to trust in your onc or to feel better maybe go get 2nd and 3rd opinions. I think we need to take all that they can offer us at this point. My philosophy through this whole thing has been I want to make sure that I did or am doing all that I can to prevent recurrence. If I do get something back, I personally will feel less guilty is my thinking. My chemo nurses and this site were some of my top saviors throughout this whole thing and still are.

spark

hey all. how is everyone doing? i have done round 3 of AC. and I have sore in MY NOSE! it sucks. I am realizing it takes me a full week and half to recover from each round. how do we keep going on?

AnacortesGirl

That is great to hear you're stilling hanging in there and moving on!  You go!  You only have 1 more AC to go and when you get there it's like being on the finish line.

I had sores in my nose also but they were fairly small so it was just irritating.  I did use a saline nose spray just to keep things moist and that helped some.

amlg1

We do what we have to,in order to kick this demons butt.Keep going your more than half way there.It seems so long ago to me but only last aug I finished AC.

BrandonMom

Only one more AC!  There's the finish line,  you can do it!  OK, it is tough, and I knew that there was no more I could take, but that was somehow reassuring.  I got an infection in my eye as well.  In addition to killing hair cells and cancer cells, chemo also destroys mucus membranes, so sore throats, dry/watery eyes, noses, etc, are all par for the course unfortuantely.  But, hey, you only have ONE more!  You can do it!

 I remember watching this show where they sent spoiled teens away for a week to help them gain an appreciation for all they had. I remember saying to my son, "they just send them there for a week??  I could put up with anything for a week!".  Those words later haunted me.  When I was crying over going to my last AC, I didn't want to feel awful for a whole week.  My son looked at me and said, "you said you could do anything for a week".  Sigh, he was right...and you know what, for him I could.  I want to be his Mom for a long time, so I can drive him crazy

kdrez

Alright!!!  You are almost done, that is good news to read.  I used to remind myself - "Women all over the world are out there going through this right now and who have done this, I am not alone".  You will feel so relieved....when chemo is done!  So - glad your pulling through this!  We are cheering you on!

CrystalM

i am stage 2a had surgery and removed cancer and am going to quit chemo. Cannot stand this, I will do radiation but I am done with chemo, Nuelasta kills me!

TWills

This thread is quite old but maybe we can get it going again, maybe you could ask for more meds to help with the side effects. How many treatments do you have left?

CrystalM

I too am about to quit. Completed 3 of 4 A/C, then they want me to do 4 TX. It was 10 fold this time. I am telling Onc tomorrow. I believe it is more the Nuelasta. I am to also have rads and hormone therapy.

Meow13

spark hasn't been here since October of 2012. I have a bad feeling she isn't with us anymore.

eric95us

Crystal, has your oncologist mentioned Clairitin for the Neulasta bone aches?

BCO has write-up on this here.

http://www.breastcancer.org/treatment/druglist/neulasta

The Clairitin helped my wife a lot.

Eric

Tewks

Is anyone still posting here? I had such terrible side effects from DD AC that my MO stopped after the third. We skipped the fourth and then went on to Taxol which is supposed to be the lesser of two evils but for me it was worse than the AC. I realize this is nearly 8 years after the initial post, but no one in my entire team was overly concerned that they had to cancel me. I had the surgery last June, plus flap reconstruction, with the flattest stomach ever 😊, all before I started chemo. And I'm now almost halfway through Proton radiation. when I've finished 27 total rads I'll go back on Femara for five years minimum.

I still don't have enough hair back to ditch the wig; regrowth is taking an eternity. I'll probably lose a couple toenails, but I've also lost the desired 15 lbs and aside from the every third day bitchiness I pretty much feel fine. Still working even though I'm fatigued all the time. Some days the radiation treatment is much more painful than others and that does concern me, but my doctor says it's par for the course.

My question is that after reading through a million posts on the various topics here, I seem to be the only one who's had such bad side effects that they were advised to stop chemo. Has anyone else had to cancel? Is this normal, common, unheard of??? Should I be concerned about this, even though it was my MOs idea and she's not terribly worried?

Thanks for sharing your stories and comments

Spookiesmom

Yes, me. I did 4 a/c, and while it was rough, I finished. Then started taxotere. MO said it would be easier. HA! Immediately after the first, I had a severe allergic reaction to it. So bad he stoped any further chemo. My skin peeled from my bald head to the soles of my feet. I lost every finger and toe nail. 5 years later my hair is not thick like it was.

Then on to surgery and rads. As of today I’m NED.

SpecialK

My very good friend had neoadjuvent AC-T for a BRCA1+, TN breast cancer.She had to stop AC after the third because her SNB and port incisions were opening up. She waited a month, had a BMX, then healed from surgery and picked up the Taxol, but also stopped short. She has done well and is going into year 3 of NED.

Amelia01

Although my mind and spirits have been good after 3 ECs my body is not liking it too much. After the 1st I had such a horrid first night of violent vomiting that the dose was lowered by 25% for rounds 2 and 3 (by day 4 after the 1st I was up and about and feeling good). Between rounds 2 and 3 I suffered from febrile neutropenia which may had been exacerbated by a tooth ache (or was it the other way around...) and with 2 shots of filgrastim (and a round of antibiotics) my counts were above and beyond normal and now between rounds 3 and 4 I have a wicked upper respiratory infection but really who doesn't? No fever, nothing more than a horrific cough which has kept me from sleeping for the past week. It is finally going away, but not even antibs did anything because it is viral!

I'm supposed to go for round 4 tomorrow but MO is thinking of scrapping it and going right to Taxol (having read some of your stories here about Taxol being worse, I'd rather stick with the known EC for the moment).

My clinic does not use Neulasta and will only use filgrastim if bloods warrant it.

Of course I have a million misgivings about skipping any part of treatment.

Other than my immune system being close to zero on EC, I can't say that I have any side effects whatsoever aside from dragging around for the first few days following. And even though I would love to shorten the treatment by a few weeks, I realize that if I am going through it now, I want the full effect of coverage ....

Jaybird627

Hey Tewks

Hey Spookiesmon

My 2nd go 'round, 2nd time caller... (lol - not!)

1st BC, 4 A/C (totally tolerated), then 4 Taxol. 1st taxol awful, extreme

neuropathy. Onco gave we 1 extra week (2 weeks was TX) and then

next taxol did me in. She let me stop. Thank gawd! I couldn't touch

anything without extreme pain. Lost all my toenails. They barely grew back...

Now, I'm stage 3A, rads after chemo. Protocol is now 6 taxane what the fuck ever.

I'm super scared of the pain. I cried and cried and cried from the pain before. How

the hell do I tolerate 6 e=when I couldn't even tolerate 1 from 13 years ago???

My onco says my hart is fine, may start with 4 A/C then go from there. Either

protocol I am risking my heart or my nerves. Is there nothing better for us?

Why the fuck such debilitating protocols?????

And now I'm on my 2nd BC! I guess the A/C and Taxol didn't 'work' or what???

Maybe I do no chemo - because why suffer? I'm already 57.......

Amelia01

Jaybird, what about weekly Taxol? That’s why they do it - to not saturate the body too much. I’m on week 7 coming up (skipped 6 for low neutrofils). I haven’t any complaints (so far!).