Thinking about quitting chemo after 4th round

Dogmom1

Hello, I'm new to this forum, and this is my first post. I'm HER2+, grade 3 tumor, stage 1, single lump in left breast. On TCH plus Perjeta. Recommendation is 6 rounds of chemo, 1 year of Herceptin, scheduled every 3 weeks. After chemo lumpectomy, followed by radiation treatment.

The chemo has been really hard on me, but I've managed to get by with a lot of meds to counteract the side effects. After the last treatment, I'm doubting my ability to do anymore. I usually start feeling better 7-10 days after chemo, but now I'm more than 2 weeks past, and in some ways I'm feeling worse.

The shakiness, especially in my hands, is not going away. I have severe muscle aches whenever I move my arms and legs, and I become fatigued after doing the simplest things. Today I needed to sit down after emptying the dishwasher. Of course this is in addition to the regular SEs like lack of appetite, though the nausea is almost gone.

After chemo #3, the onco said my tumor, which was about 2" to start, was hard to feel and about the size of pea. Since I'm responding so well, I'm betting that when I go in next week that she won't be able to find it.

I'm depressed, and really torn about what to do. Of course I want to do everything I can to beat this, but I think my body is trying to tell me it can't keep taking a beating from all of these toxins.

Sorry this is so long, I'm just really feeling lost right now. Thank you for taking the time to read this.

Moderators

Hi there, Dogmom-

We absolutely understand how you're feeling! This isn't easy, and the side effects from treatment can be so hard to deal with. Other members will chime in with their experiences and guidance, but we just wanted to let you know what we're here for you, and you have the support of this community to get you through this!

The Mods

WC3

Dogmom1:

You might need your dose adjusted. You should speak with your MO about it.

I'm on TCHP as well and have infusion 5 next week. My dose was lowered for infusion 4 and I am able to eat much better than I could previously and have fewer GI symptoms but I am anemic and fatigued and my muscles ache...they burn when I walk even up the slightest incline, and there are things I normally do that I just can't do right now, but it will pass.

When they were figuring out the protocol for TCHP, I believe they initially did 4 cycles but it was upped to 6 and I imagine there was a good reason for that.

Meow13

Also I have heard to make sure you are drinking alot of water to flush chemicals out. Some people also do fasting. Hope you get some relief, definitely take WC3 advice about asking for a dose adjustmemt.

Kat22

Dogmom1: I'm in the exact same spot, same treatment, same timing. And feeling much the same way. I just had #5 a couple days ago. Yep, had to really force myself to go. I don't know that I have a lot to offer, but sometimes it's enough just to know you're not alone. Just trying to keep my eye on the end result and convince myself that I'm strong enough to get there.....we can do this, together.

Sjacobs146

unfortunately you feel worse after each treatment, it's a cumulative effect. Some things got better for me as I went along because I learned how to better manage my SEs. Talk to your MO. Mine told me that they don't handcuff you to the chair, if I decided to stop, I did do all of my treatments (only 4) because I knew that if the cancer came back and I didn't do all the treatments, I'd blame myself. Now in case of recurrence, my concience is clear. One thing I do regret is not taking more time off from work to rest after treatments. I had treatments on Friday and back to work Monday

NotVeryBrave

I, too, considered quitting after round three. I was expecting to feel good about getting to the halfway point but instead felt very down. I worried a lot about the cumulative effects and whether the cancer was being taken care of at the detriment to the rest of my body and life.

I talked to my MO. I was expecting a fight - or at least a guilt trip. They were very understanding and we discussed options. I ended up completing the rest, mostly because I knew I'd be mad at myself if I didn't and had a recurrence. The one thing that I did was switching from Neulasta to Neupogen. For me - that helped with a number of SE's.

Any chemo required is better than none and you know yourself better than anyone. Discuss your concerns and see what options you have. Congrats on getting this far along!

Dogmom1

Thank you all for your thoughtful responses. I neglected to say she did reduce meds for round 4. I will definitely be having a long conversation with her before round 5, I just want to make sure I'm making the right decision for me. I also need to say that they don't believe there is any lymph node involvement, so that is also influencing my thinking.

My thought process is that if there is one isolated tumor, and it's shrunk down to nothing, and I'm still going to undergo surgery and radiation treatment, is more chemo worth the collateral damage? I want to make my decisions based on logic, not fear, which of course is not an easy thing to do. I will bring all of this up to my doctor, but it's good to talk it through with others in the same situation. :-)

hapa

Dogmom - I believe people had better outcomes with six rounds vs. four. Some MOs will do things like cut out the carboplatin and/or perjeta if you're having bad side effects. But the bloating and muscle aches are from the taxotere. I had them too. I dealt with it by cutting out salt from my diet as much as possible, drinking water like it was my job (this may make the bloating a little worse at first but once the sodium starts to flush out of your system it will make it better) and finally had to get some compression hose so I could keep working - I work on my feet and after a day at work my legs were super bloated, and the more they got bloated the more they ached. I would try to finish out at least the TH part of your protocol if at all possible, or maybe ask about switching to taxol. If not, then just continue on to herceptin only, it will still have benefit and a lot less side effects.

Alicethecat2

Hello Dogmom

Sorry you're going through this. In case this helps you...

I had a HER2+ grade 3 tumour with no lymph node involvement in 2012. Stage 2. Eight rounds of chemo, radiation, Herceptin. Mastectomy. Doing well and trying to do good.

Chemo was very difficult - l developed lots of lumps and bumps that appeared to be another cancer but weren't - and it led to lots of extra tests, which was nerve-wracking.

However, my onc put my dose down to 80% of what I should have had for my body weight. No side-effects.

Sometimes I wonder if I could have got away with less aggressive treatment...but I don't have a crystal ball or rely on prediction cards.

In the end, we can only make decisions that seem right for us at the time.

Good luck with your decision - and have hope!

Alice

KCMC

I feel for you, I did this regimen last year from July 28 to November 8th last year. I was doing good even managed to fit in a vacation to Jamaica between cycles 3 and 4. Cycles 4 and 5 were the worst. Surprisingly enough 6 wasn't too bad. I had panic attacks before going in for cycles 5 and 6. I am finished all treatment now. Continued on with Herceptin and Perjeta for the year and finished on August 8th. I was bedridden at the end of TCHP only had a few good days but bounced back pretty quickly after cycle 6. I guess what I am trying to say is that I was able to complete it, I was lucky though I was not working and I have a supportive hubby and my kids were in middle school so they were pretty self sufficient. I have to admit that I smoked pot for the first time in over 25 years. I am not suggesting that you do this but it really got me through the end and I was able to have a good nights sleep which made a world of difference. Also helped tremendously with bone pain.

Good Luck in whatever decision you make. Gentle hugs to you (( )), In case this helps I was stage 2A multifocal 4 tumors in same quadrant. Grade 3 no lymph node involvement.

One thing that got me through was that I kept repeating to myself that this too shall pass.