Im considering quitting treatment

By Coach mom Saturday, September 10, 2011

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In July I was diagnosed with breast cancer. I have a 10x6 xcm tuner and it has been confirmed in one lymph node. The cells have estrogen and progesterone receptors and is also HER2 poitive. I started 8 weeks of treatment on August 15th. Taxotere and carboplatin once every three weeks and Herceptin every week. My hair fell out a week after my first treatment so it must be working. But I had me second cycle of chemo Wednesday September 7th and by last night is was pretty sure I was going to die. I wasnt just weak and tired like last time, I was faint, couldn't catch my breath, heart palpitations, clammy,shivering, slightly disoriented and shaking. I understand that chemo has a cumulative effect and that side effects will get progressively worse with each treatment. I can't handle anything worse! Sound familiar to anyone? Any help is appreciated.

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Michigoose

9/10/11 12:50pm

I have to say that it depends. The most important thing is to tell your oncologist and your oncology nurses about this last series of reactions as they might signal a reaction which can be controlled or is more severe than usual.

I can also tell you that in my previous treatments (I've had chemo in 1994 (CAF) 1998 (Taxol) and Nov. 2010-July 2011 (Abraxane) that only with Abraxane did it seem like it got progressively worse...but...even that is qualified. In the beginning of June, I had a treatment which laid me low, but since my markers weren't where I wanted them to be (they were 59) I told my oncologist that I'd rather have one more treatment (based on the curve of my markers falling). He was going to pull me from treatment because this last one was really hard and my eyesight was very poor and the numbness in my feet and hands was so bad (both side effects of Abraxane). He agreed to let me have one more treatment.

I kept on asking myself if I were nuts...I mean if I was having one more treatment and the reactions got stronger on this one...then how could I handle that last treatment? Well, the last treatment, although it was full strength and a normal delivery WASN'T as bad. It was very doable.

I also have to say that the side effects often varied with whatever treatment I was getting. When I was on Taxol, the first treatment I had diarrhea...so I went out and bought a bunch of immodium--enough to take me through the whole six months..only I never had diarrhea again, in fact, I was constipated. With this 9 months course of Abraxane, the first several treatments I had chemo-induced fibromyalgia....my sides hurt so much it was hard to turn over and the cancer site in my ribs hurt so bad it felt like a 2 x 4 had gone through my chest....But this went away...sometimes the joint pain would be bad, and sometimes it wouldn't.

Since I was stage IV in 1998, and in 2010 it recurred in many locations, I decided that I would just do what I could to handle the side effects with things I talked to my oncologist about ...as I felt that NOT doing chemo would surely mean that I wouldn't make it, but doing it and saying to myself that the side effects were only temporary, at least I had a strong chance. Pain is only temporary and often the side effects are temporary, or at least not as severe when you finish (I had numbness in my feet after taxol, so I'm not sure that the more severe numbness I have now will go away completely).

Each of us has different tolerances and each of us has different reactions. You have to discuss this with your oncologist and also look at it yourself and see what you are willing or able to do.

I hope this helps. Lisa Quintana

http://michigoose-longtermbcsurvivor.blogspot.com/

Michigoose

9/10/11 3:57pm

I should also say that some of the "side effects" you are describing might be other issues which can be very easily handled....my best to you...

Lisa

Coach mom

9/11/11 2:02pm

I think you're correct. My fingertips are numb & my ears are ringing, too. I think I'm having some neurotoxic issues. Thank you.

Coach mom

9/11/11 2:05pm

I think I have something more than the common side effects going on here. I'll call my oncologist tomorrow. Thanks!

Phyllis Johnson, Health Guide

9/11/11 7:16am

Please call your doctor because heart palpitations and shortness of breath are not typical chemo symptoms. Your doctor may want to change your chemo and/or add some medications to help with the side effects. It is not true that chemo is always cumulative. More typically there is a pattern of side effects that repeats with each cycle. The first few days there may be aching, nausea, or other symptoms as the body absorbs and responds to the chemo. Then as blood counts go down there is a gradual loss of energy with the low point being halfway between treatments. Then people gradually feel better as blood counts come back to normal. Just when you are starting to feel OK, it's time for the next treatment. Although some people breeze through chemo with few side effects other than baldness, most people find it tough to get through.

I notice your screen name is coachmom, so I assume you have children to live for. You can get through chemo. Get your support team in place so you can go to bed if necessary to get through the first hard days after each treatment. Try to do something each day that makes you glad to be alive--listen to a favorite song, have a cup of tea on the patio, read an inspirational book, watch a funny video, laugh with a baby. There were days when I didn't have energy to walk to the mailbox, but on the days when I felt a little better, I went to our town square for an ice cream cone or took a walk in a park.

I had eight chemo treatments--four Adriamycin/Cytoxan, four Taxol--three weeks apart. My pattern was three or four bad days after each treatment, severe fatigue for a few days in the middle week, and gradual increase in energy the last half of the cycle. I learned to schedule my life around that cycle. Although sometimes I needed to attend something for my son when I would rather have been in bed, for the most part, I was able to schedule extra and fun things for the week before the next treatment. The Adriamycin/Cytoxan left me too fatigued to work, but I taught school through the Taxol. Of course, I didn't do anything else, just went home after school and collapsed. My husband kept the house going.

So please don't give up. Talk to the doctor about what can be done to manage your side effects. Your cancer sounds highly treatable but too aggressive to skip the chemo part. Keep in touch and let us know how you are doing.

Annie

9/11/11 8:34am

Hi PJ, can I ask you what type of cancer you had, I know it was breast cancer but can you tell me how big your tumor was and if nodes were involved? I just had surgery to remove my cancer and your treatment you describe here is what has been suggested to me along with Hercep., to complete a full year. My tumor was 1.5-1.7 on mammg, and utralsou, but came to be measured at 2.2 in the patholog, report w/at least 1 node involved. Now that the cancer is out, I am affaid to get the chemo because of the bad side affects associated with it.

Annie

PJ Hamel, Health Guide

9/11/11 9:56am

Annie, with lymph node involvement, there's a chance you're not cancer free; the cancer could have traveled anywhere in your body, which is what chemo is used for - to take care of any of those "stray" cells that may have traveled. Also, since Herceptin is recommended, it means your cancer is a more aggressive variety - so you really should go ahead and follow the course of treatment your oncologist recommends.

I didn't have ACT - but this post on ACT should give you a good idea of what to expect in the way of side effects. Also, please read our post about Herceptin; again, that'll describe how it works, and what to expect in the way of side effects. And, our chemo series is an excellent overall view of the experience.

It's OK to be scared; all of us who've done chemo have been terrified going in. Once you start, however, and you get the process going - you have some of the side effects, your hair falls out, etc. - then you just kind of pick yourself up and move forward. You'll find out you're stronger than you think. YOU CAN DO THIS. I know you can. And we'll be here for you, every step of the way. Take care - PJH

(P.S., I've posted this same response to the personal message you sent me, Annie...)

Coach mom

9/11/11 2:08pm

I'm going to talk to my oncologist tomorrow. This is more than the usual side effects, so there's something else going on, I suspect. I have 2 kids and I coach a college women's rugby team; I have 20 kids to live for. Thanks!

Michigoose

9/11/11 7:41pm

Yay! I hope it comes out with some answers for you.

I also had some issues with breathlessness (Abraxane)...but the cold and clammy isn't common....

We're pulling for you. Lisa

Phyllis Johnson, Health Guide

9/11/11 8:08pm

Annie, I had inflammatory breast cancer (IBC), which is considered Stage IIIB. Most people with IBC have no lump, but we found out after surgery that I had two tumors on the chest wall (between 1.5-2 centimeters). I had 16 positive lymph nodes and a similar tumor profile to yours. If Herceptin had been approved at the time of my treatment for Stage III cancers, I would have been an excellent candidate for it. With a Her2positive tumor and some lymph node involvement (even though it was only one), chemo is an important part of getting rid of your cancer and keeping you well. I know that it is scary, but you can do it.

Phyllis Johnson, Health Guide

9/11/11 8:16pm

The tingling in your fingertips is a common Taxol side effect. Some of the others don't sound familiar to me, but side effects do vary quite a bit from person to person. The important thing is to let your doctor know about all of them, so that you can get treatment for the ones that can be helped. And if some of the side effects are too severe, then your doctor might decide to switch you to a different drug. Never just suffer in silence about side effects. You can get through this, really! Anyone who coaches rugby is tougher than chemo!

Peglove

10/ 6/11 7:02pm

Hi Coach Mom,

It is not October and you are probably into your third infusion...or you quit. If you didn't quit, bravo to you!

It seems I had every rare side effect listed and some that were not! I had some heart palps too! And when I told my onco, he tweaked the meds he was giving me. I also had to stay and my infusion was a little longer, they pushed it slower. This gave them more time to watch me.

No joke, I wanted to quit so many times. I thought i could never do it, and my body hurt so much. But I got the rhythm of the chemo, and after the third one, I just rested when I had to, and took the zofran when I got nausea. I could only eat pizza, and cottage cheese...for months. It was the only thing that tasted good to me.

If you did quit, I know how hard it was and how tough that decision is for you. But it isn't to late to get back in the saddle again, and give it another go, for futures' sake.

Hang in there, and please keep us posted.

Hugs, Peg.

Coach mom

10/ 6/11 8:26pm

I talked to my doc & they gave me some anti-seizure medication & cut back the carboplatin and I trepidatiously continued treatment. I had my third cycle a week ago, and (knock on wood), so far I haven't been knocked down near as hard. Thanks for all your support, everyone! @peg yeah it seems like I've rung up the meter on unlikely possible side effects, too! It's tough because once they put it into ya, they can't just take it back out! You're just stuck with it! I had anemia and a neulasta shot after the second cycle so I don't know if that (and the pain meds associated with that) exacerbated my condition, too. And veggie pizza and cottage cheese have been my favorites, too. They still taste the same to me with the 'metal mouth'. I've been pounding the spinach, cereal & peanut butter too to try to keep the anemia (& neulasta) away! Again, thanks everyone!

Im considering quitting treatment

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