Quitting Chemo

Methusala

Hi Ladies,

I decided last night I cannot do chemo anymore.  Anymore, being a laugh as I've only had ONE tx.  Is there anyone else around who quit chemo? or refused it all together?  Hubby was so adamant about it, but last night he just said, It's your decision.  That's a far cry from his attitude a couple months ago.  Why am I quitting? I can't handle it.  Please don't tell me I can.  I cannot.  I am too sick.  Last night's symptoms were the last straw, so to speak.  I just want to know if there are any people out there who quit, and are still doing OK.  Please feel free to contact me privately.  I am calling my doctor later and telling him. I am still considering radiation.  I'm not sure about it tho', are there women who JUST do radiation and NOT chemo?  I'm sorry my ins. paid 5,000+ for the two shots of neulasta in my fridge, but the health ins. crisis is not my concern at the moment. My life is, and my future as a mother to my my young son.

lazeechic

HI Methusala

I refused to have chemo as well but for different reasons. 

It is a very tough decision to make.  What type of symptoms were you having? 

Lazee

Aka Angela

NativeMainer

Hi, Methusala,

I refused chemo, based on the research reports I read that all stated that chemo benefits are questionable for Stage I and Stage II bc, and the research reports comparing chemo and hormone therapy (for ER+ bc) showed hormone therapy gives as good or perhaps even better results than chemo. I was staged at II.  This thinking may not apply to Stage III, but if you cannot tolerate chemo and the tumor was ER+, have you considered hormone therapy?  That may be an option open to you that gives some protection from recurrence with more tolerable side effects (or perhaps no side effects, some women do not have side effects). 

I, personally, feel that quality of life is more important than quantity, and prefer to live with a higher level of uncertainty without side effects than live longer tied to a chemo schedule and suffering side effects. That, however, is MY opinion and MY choice, and I am not encouraging you or any other woman to refuse or quit chemo.  I am offering my thoughts in the hope that it helps other women feel that they have considered all the aspects of the situation when they make thier own decision.   Any woman who chooses chemo at any Stage has my full support, just as any woman who chooses not to take chemo has my full support. 

Bugs

Methusala,

My first chemo was hell.  I talked to my onc and onc nurses and described my symptoms and they switched some meds for me.  They also slowed down the chemo drip as it can cause bad headaches if done too fast for some people.  Before making a drastic decision (and at Stage IIIB this is a drastic decision) PLEASE talk to your onc and nurses.  I was diagnosed at IIIA and I truly believe that at this stage, chemo WAS NEEDED for me to be around for my son (who was 8 at the time).

I won't tell you that you CAN DO IT...but I will tell you that with just a few changes you may be able to tolerate it better.

Take care,

Bugs

slonedeb

methusala i wasdx sept 2004 at stage 2a i refused chemo instead took tamoxifen nowapril this year i have bone and liver mets and have only a small chance of ;iving 6 months please please see if there are other meds that may help you these txs but the most important thing is pray to the great physican and i still have hope i can see my grandkids grow up im only 52 and i want to be around for a few more years so please re think your decision may god be with you ill keep you in my prayers     love deb from ky

TenderIsOurMight

Methusala, what a lovely name. A woman who lives to be very old.



But today, a woman who is in physical and emotional pain from 'devil drugs', which give but only after they take. Why don't you tell us more about what happened last night? Was it extreme nausea, vomiting, severe headache, retching, deep down bone chilling, nausea this morning too, the idea of this recurring next treatment again, fear of loosing your hair, or overwhelming fear of chemotherapy?



You have every right to say no to chemotherapy. It is solely your choice, and we respect that. Others have posted heart felt reasons why trying to work with chemotherapy may give back, in years.



There are often changes in medications which can be made to accommodate wicked side effects. Do let us know, should you wish to, what the specifics are, and perhaps we might help.



Feeling for you,

Tender

Anonymous

Even if we were to tell you that a certain percentage of those in a situation the same as yours refused chemo and are sailing through life, it wouldn't guarantee that you would be in that percentage. Just as doing chemo won't guarantee successful survivorship. It's a matter of odds and how okay you'll be with your decision if you do get a recurrance. I made some unpopular decisions and feel that I can live with the consequences, no matter what. So if you're checking with your gut and are comfortable and at peace with the decision, then it's the right choice for you. I had a friend who had a very large tumor/ negative nodes and she had a bilateral and quit chemo after 3 ACs. No rads. She's fine 2 years later. And the most famous "quitter" is Melissa Etheridge. Her experience was awful and she quit chemo after several treatments too. It seems that she's doing fine too.

This is your body and your life. You only need to do what's right for you and don't need anyone else's approval.

Stick around. Not doing chemo is no reason to feel ostracized from your community of sisters.

~Marin

Mary-Lou

I felt like I wanted to, but it was the shot that I had such a hard time with...not the chemo.

I told my hubbie I wanted to quit, but I figured a little pain from chemo was not as bad as a slow death from cancer.

So I got my stupid self together and put my big girl painties on....Today is my 2 year anniversary  dancing with NED!

Best of luck!

Paulette531

I did chemo, one at a time. I would finish one round and swear it was the last, I think it was my way of having some control over the situation. Finally, I was through with the a/c and taxol. But believe me when I say I quit after each chemo!

It's hard, no doubt about it. But you have to make the right choice for you, then be comfortable with it and don't look back.

I wish you the best of luck with your choice and please keep us informed.  

Iza

Hello, Methusala! I am just sending a hug and saying that I agree with you and with the other women who say that this is about you, and the decision that works best for you.

Being no expert, and not knowing anything about your particular situation, I cannot really say anything about options or outcomes, but I do remember reading (Dr Love's book) that chemo does not have the huge impact on survival that we might think it has. This is all a matter of statistics, and you may be on the good or on the bad side of the statistics regardless of what course of treatment you follow. Only that you don't know which side you are. But you have every right to decide what you want to do with your life. I am glad to hear that your husband seems to have understood this.

I am sending hugs, love, and hope for a long, healthy life.

Iza

althea

My mom had bc decades ago, and surgery is the only treatment she received.  She'll be celebrating her 80th birthday in a few weeks.  I am grateful for all the treatments available to us, but dang they're hard to get through.  Sometimes I think it's all a crap shoot, who gets it, who doesn't. 

I encourage you to see how you feel as the time for treatment 2 comes around.  Yes it's really tough to get through chemo.  It's harder for some than others, and it sounds like chemo is especially hard on you.  Please talk to your oncologist and get more information so you can weigh your options.  I hate to be blunt or appear anything less than supportive of your decision, but how would you handle the prospect of the cancer continuing if it turns out you need the chemo to get rid of it?  I know for me, part of getting through the treatments was knowing that I'm throwing the book and the whole bench at the dreaded disease.  There are no guarantees of course.  I could get a new primary, or a recurrence, in spite of doing all the treatments available.  I also know that I would be kicking myself around the block if it came back and I hadn't done every treatment available.  But that's just me.  

We're all different.  I encourage you to listen to your instincts.  Make a list of ALL your options -- good, bad, ugly, indifferent.  Scroll through the list mentally.  Your heart will tell you what's best.  You have all my best wishes, no matter what you decide.   

CaliforniaKate

Methusala. I had stage 1 and didn't do chemo, just rads and tamoxifen. But my mom, at age 74, was diagnosed before 3 years before me at stage 3. She had positive nodes, chest wall attachment, and a 6.5cm.tumor. She did chemo, rads,and femara. She is still fine and it's been 7 years. There is so many choices out there for chemo now. Why not give the oncologist a chance to try a different chemo that hopefully won't make you so sick. The choice to quit will always be there, but you may just get lucky the next time out. Good luck, you'll be in my thoughts.      Kate

twink

Hmmm...I've heard of a few women stopping mid-course.  It's your call, clearly, and you're the only one who can determine whether you can cope or not.  I did chemo (and asked for more) for the same reasons you want to quit....for my life and my kids.

Good luck to you.

NKinPA

I have to add my two cents.  Chemo is no party and it is different for everyone.  Actually, we made it a party and had the Tuesday morning chemo club.  Each time for me was different and the first was the worst.  The stress and anxiety made the first a/c the worst and the same with the first taxol and herceptin.  I even had a minor melt down with the first rad, just from anxiety, and I had my tamoxifen for several days before I could make myself take it.  They have a lot of great drugs for side effects and they will be more than happy to keep trying until something works.  In my case I said bring out the big guns and hit me with all you've got.  My daughter is an onco nurse and she said she always tells her patients she wishes she could fast forward them a year so they could see how fast the time goes and they can make it though.  Well, I had left mast, chemo, rads and we all just went kayaking to celebrate one year.  The Tues. morning chemo club is now the Let's Meet for Lunch Bunch.  I say at least give it one more try.  It's kind of like childbirth, you forget the pain because of the life that you get afterwards.  I will now get off my soapbox.  Good luck.  Nancy

gshoemate

I think most of us can say that we have been where you are at.  I have at least twice in the past 3 months said that I can't do this anymore, I can't go through another treatment.  Then I look at my 2 babies and think "how can I not got through treatment".  If it is going to increase my chances of being here to see them grow up....bring it on.  I don't care how much I throw up, how tired I am, how much pain the neulasta shot causes, I can deal with the bald head.....just as long as I am here to see my babies grow up, graduate, get married and have babies of their own.

Like everyone has said, it is your own personal decision that only you can make, I just hope you put alot of thought into it.  Best of luck.

Ginger

rue2u

Methusala,

You did not mention if you were er/pr+ or whether you were able to do the oncotype test.  I only did 4 rounds of AC chemo and turned down the taxol arm.  I've had trouble with the veins in my right arm ever since so it's tough getting blood drawn these days.  I also had rads and about 1 1/2 years of Tamoxifen.  I have had two aunts and one cousin diagnosed and none of them had chemo (two had rads) and none had a recurrence.  Go figure.  I was scared every time I sat in that chair.  Good luck with your decision. 

Rue

Methusala

it's not a matter of fear.  I just want to clear that up.  While I appreciate where some of you are saying, yes it really can be done..  I'm telling you my body can't, can NOT, do this again.  I lost 14 pounds in 5 days.  The meds made me sick there were supposed to help me.  Even the ativan had bad side effects.  Today is the first day I remember anything since LAST Thursday, when I had my chemo.  I couldn't care less about my hair falling out.  I really want to hear from people who refused chemo, I'm sorry, not people who can 'made' it.  NO offense ladies, I'm sure you all mean well, but I'm just not interested in any chemo clubs, etc.  Last night I laid in bed in non stop pain for hours.  My stomach hurt so bad, even hydrocodone didn't touch the pain.  I never want to stand waiting for my son's bus again with crap running down my legs.  From Th. night to Mon. morning, I have no memory but pain and sickness.  I can't even begin to explain how bad it was.  My skin is hanging on me.  Today is the first I left my house.  I can't even walk upstairs without stopping half way to catch my breath.  This typing can't even begin to cover it.  So, again, I"d really like to hear, privately please now, if anyone has truly refused chemo or quit chemo, from you, your story.  Please  no more "you can do it" or "I did it" responses.

rue2u

Methusala,

I apologize since I did not mean to imply you were scared.  No one is judging you here and I don't mean to imply that you should complete the chemo either.  I would say if the side effects are intolerable than why do it?  I lost 12 lbs. in 4 treatments bringing me down to 110 lbs. and I wasn't about to continue on.  I hope you get more responses from those who refused chemo.  Best of luck.

Rue

althea

I am so sorry you're having such a difficult time.  Thank you for providing more details.  While chemo isn't a cakewalk for anyone, you are really having extraordinarily bad side effects.  As if you need me to tell you that.  I think it's important for you to know that you are having much worse side effects than what most people experience.  I also know that interfacing with the doctors during this dreadful disease can be just as stressful as the disease itself. 

Do you have confidence in your oncologist?  Does your onc know of the extreme difficulties you're experiencing?  I'm particularly concerned about your shortness of breath.  Was it communicated to you that chemo can cause heart damage?  I also can't recall of anyone losing bowel control due to chemo.  There should be something available to give you some relief from all your discomfort.  Please let us know how you feel about your relationship with your oncologist.  You need someone exceptional.   

ravdeb

Just have a couple of things to say...

If you are getting very sick on the chemo then it would seem to me that your onc would stop it. Chemo is supposed to save your life..not endanger it. My onc told me that. I was an aggressive pusher to stay on chemo but got deathly ill from it and after my 3rd AC was hospitalized for a month on IV antibiotics. My life was literally in danger.

My onc said NO MORE CHEMO  and I pushed it. I did 12 weekly Taxol after that instead of the dose dense. They told me from the very beginning that if there were ANY bad side effects that could endanger my life they would not continue it. In fact, I had to show them I was strong enough to start the Taxol before they would even begin it. And they were watching me like a hawk.

If you can, talk to your onc about all of this and see if there is an alternative solution. My onc was very clear to me...chemo is not good if it is going to endanger your life. You side effects are extreme as were mine. Sometimes, different chemo have different side effects. I had basically NO side effects while on Taxol and almost died on AC.

I was adamant about getting chemo. But again..if it's going to kill you before the cancer does..then what is the point?

Be well and strong for your kids. That is what really matters.

Methusala

Thank you so much for those last few posts.  Another round of chemo like that, and I physically would die.  Like I said, I cannot put into mere words how horrible it was.  I like Dr. Levine, however, when I keep my next appt. I am adamant about NOT putting those drugs in my body again.  I am not (yet) against radiation.  I told the nurse I would certainly talk to dr. about other chemo drugs.  However, I will NEVER survive another round like that.

I have gotten comfort from your posts.  Thank you. 

Bren-2007

Methusala,

Please let us know how your next dr's appt goes.  You're in my thoughts and prayers.

Brenda

Anonymous

I don't know why I'm repsonding except to support your decision. 

I was 58 years old at diagnoses.  I didn't feel well on chemo, but I never had the side effects you are experiencing.  And thank you for letting us know just how hard you have had it.  This gives us more understanding why you do not want more chemo.  I cannot imagine what you are going through.  However, when you see your onc there may be another alternative. 

Bless your heart.  I know this is hard for you.  I wish you the very best.

Shirley

Lhunhen

I refused Chemo for my own reasons but like others have said..that was MY decission and I respect those that choose and don't choose to do chemo.



I do have one suggestion though to ask your Onc about. What about "low dose chemo"? I know of people who have done it. It's something to ask your Onc about. Research it yourself so you know what it is too. If chemo is something you want to do...then this might be better for your body.

Also if your ER+ then hormone therapy might be the way to go if you really don't want the chemo. Remember that no two people are alike. You have to do what you think is best for you. Do your research on it and be a empowered patient. (smile)



Cathy

Methusala

hi all,

Yesterday was the first day in 10 days I didn't sleep all afternoon.  The diarhea and bowel 'stuff' is still constant.  Everything still tastes like cardboard, except ice tea.  I do feel better, finally.  I just wish that 'hung over' feeling would go away.  I really did think I'd zip through this.  I seriously never get sick.. colds, flu... nada.  My 16 year old dd told me I looked skinny.  I will take that as a compliment.. ha ha.

I go back to Dr. Levine on Th.  

Did anyone read the report on the free floating radicals in the blood stream?  It was something about if you're negative for them after surgery 96% (don't quote me on thtat) women stay negative and if you're positive for them, well..  it has to do with chemo and whether or not you need chemo.  That's all.  If I find a link to the article I"ll post it, just wondered if anyone had heard of it.  I"m also at "Mother's" house for the weekend and incredibly 'bored' so I jumped on her computer.  lol 

nosurrender

Well, 70% of all cancer is cured by surgery alone.

I did chemo six years ago and slept on the bathroom floor for the first three days after every chemo. I swore I would quit every time but I went back. That was for a triple negative tumor that was highly aggressive. The chemo killed it because it has been six years.

I was re-dx'd with an ER/PR + new Primary this feb and started chemo in April. I was terrified. My one put me on sequential chemo which is one agent at a time and is easier to handle.

Such side effects as yours are not normal. You may be missing a certain enzyme in your blood that makes you have such a reaction. I would speak to your doc if I were you about switching agents.

I only know one thing; we have ONE CHANCE to shoot for a cure. And that is the first time. If the tumor is knocked down and killed we can survive this blasted disease. You can't unring the bell. So think long and hard about this. I was where you are now and I chose to continue.

You have to do what is right for you and I support any decision you  make and wish you only the best of luck.

g 

ERS2006

Stage 3b...don't want chemo...why not go see an alternative doctor and get going on some new therapies...wheat grass/digestive enzymes...juicing etc...watch Crazy, Sexy Cancer for inspiration...she didn't have chemo I believe andis still going!

Good Luck

PS...I would do the chemo...try something else...I had taxotere/cytoxin and did fine or try another facility...maybe they aren't giving you the right premeds...

althea

I'm so glad you're feeling better methusala.  I remember being thirsty ALL the time during chemo.  I drank lots of arizona tea, which I've since abandoned due to all the calories from corn syrup, but I really think it got me through chemo a whole lot better than I would've been without it.  but I digress...  Please check with your doctor about keeping hydrated.  Diarhea is so dehydrating. 

Harley44

Methusala,

I don't know what your situation is, and what type of bc ... ER+ or ER-   but...

I am a firm believer that once you make a decision to get chemo, you should try to see if there is a way you can stick with it.  I didn't want to do chemo, but after much debating and thinking...  I decided that I have ONLY ONE LIFE, and I want to do everything I can to make sure the bc doesn't come back.  The places where it comes back are really nasty!  and most of the time, it won't be treated as easily, by surgery, I mean... 

But, this is just my opinion.  You should do what you feel is best for you.  Maybe talking to your dr. will help.  Also, as the others have suggested, maybe he can change something, so you can tolerate it better.

Good Luck!

God Bless,

Harley

suave

I did three chemo and did not do the last one. I am glad I didn't as I am more sick now than before the cancer discovery. I did do the radiation but I wish there were better ways. Now I have acid reflux and always tired etc. However, sometimes it depends of how advance the cancer is.

TenderIsOurMight

Hi Methusala,



I, too, was really glad to see your post saying you finally were feeling some better. You literally went through hell and back!



Methusala, was one of the chemotherapy agents you received a taxane, either Docetaxol or Paclitaxol, by any chance?



The reason I mention this is, looking at your post where you talk of the effects of the chemo, it really appears like you had a colitis reaction: the bowel gets quickly inflamed, swells, this causes fluid to weep into the bowel, you get profuse diarrhea, the inner bowel surface gets pussy, and necrosis or dies, then it sloughs off and it's added to what you pass, you have so much of this going on you can have incontinence and severe abdominal pain. In addition, your body's chemistry or electrolytes like sodium and potassium get all out of whack, you have severe headaches from that and the serious dehydration from the colitis, you have fever from the inflammation in your bowel, your muscles ache and ache and so on.



I ask this because the taxanes, like Docetaxol or Paclitaxol, on rare occasions can cause a severe colitis, and there have even been rare fatalities (due to sepsis or blood infection) associated with it. What you went through, based on your second posting of descriptions, just isn't normal. A call to your oncologist even now, letting him know how sick you were would be great, especially if you in any way are still having gut pain, diarrhea or fever.



All the best to you; so glad you're doing some better.

Tender