Mixed emotions about stopping treatment early

Options
Flynn
Flynn Member Posts: 307
edited November 2017 in Chemotherapy - Before, During, and After

Yesterday, I went in expecting to see MO then have carboplatin #4 and taxol #10. In the last couple weeks, my neuropathy has gotten worse, I'm having trouble catching my breath and gained several pounds/started swelling. I've also had 3 transfusions since Taxol started. My dr said she thinks it's time to stop and proceed to surgery. I started crying but she believes that I've gotten enough chemo and my side effects are becoming more serious. I started with a large TNBC tumor and it seems to have responded well.

I'm torn between relief and apprehension. Having serious neuropathy when this is done, worried me. If I have a recurrence, I think I might blame myself for not fighting for more treatment. My dh is very stressed out. He's sympathetic to side effects but is very worried that I didn't get enough.

Anybody else stop early? Did you come to peace with the decision?

· Share on FacebookShare on Twitter

Comments

  • pupmom
    pupmom Member Posts: 5,068
    edited November 2017

    I have no experience with chemo or neuropathy, but if your doc says it's ok to quit, why are you concerned? Best wishes and HUGS!

    · Share on FacebookShare on Twitter
  • Flynn
    Flynn Member Posts: 307
    edited November 2017

    Good point! I do trust my MO a lot but since we started with a plan for 12 weeks, I feel like I came up short. Of course, she has trained to deal with this scenario so rationally I should just go with it.

    · Share on FacebookShare on Twitter
  • Brightness456
    Brightness456 Member Posts: 340
    edited November 2017

    I understand your emotions. I only had a small tumor to the point that I’m pretty sure some of my doctors didn’t think I should even do chemo and I’m still feeling similar emotions because I stopped after 6 taxol treatments. All my doctors were in agreement that the benefit I’d gotten from the first 6 was more than I’d get from the last and all agreed that the neuropathy was of more concern than the recurrence at this point, but I worry too. I think it’s a natural and normal concern, particularly given that many people complete the whole regimen and still fear a recurrence. I’m also relieved to be done and I fearful because I stopped early. I think it’s all part of being human. BC is just a bunch of difficult emotions.

    I’m working with a counselor on trying to move forward as if this will just be a part of my past and I’m safe to be my old self again. I let myself give in to fear for short periods. I’m also worried about guilt if it comes back.

    · Share on FacebookShare on Twitter
  • TWills
    TWills Member Posts: 679
    edited November 2017

    Well I understand your concern, Dr's give vague advice and leave it up to us to decide. I didn't do my 12th taxol. I also had to have the treatments reduced by 20% before that. Of course it's concerning, itstinks and you have to go with your gut unfortunately. I asked every Dr I had and also the pharmacist at the infusion center, took their vague advice and made my decision. I did one more treatment and then stopped. I stopped when I knew I didn't want my neuropathy to get any worse and what I thought I could live with. I work with my hands though. Sorry you have to make this decision.

    · Share on FacebookShare on Twitter
  • Leatherette
    Leatherette Member Posts: 448
    edited November 2017

    Flynn, you didn't fail the plan. The plan failed you! And these things are so different person to person. Be glad you have an MO who took your side effects seriously, and you will adjust to your new plan.

    Best,

    Leatherette



    · Share on FacebookShare on Twitter
  • pupmom
    pupmom Member Posts: 5,068
    edited November 2017

    My doctors told me explicitly what I should do. All docs are not created equal. Just saying.

    · Share on FacebookShare on Twitter
  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited November 2017

    I didn’t have that choice, it was made for me. I had 4 a/c, was supposed to have 4 taxotere. After the first taxotere I had such a severe allergic reaction to it my MO took one look at me and said he was stopping all chemo.

    After I recovered from that and the rest of tx, it sunk in. I was not happy, but figured I’d done all I could. And I moved on.

    I’m 5 years out, still have my port, and NED.

    It’s a tough choice, we are all different. You do you😄.

    · Share on FacebookShare on Twitter
  • Flynn
    Flynn Member Posts: 307
    edited November 2017

    Brightness, you’re right bc is a hard set of circumstances & emotions to deal with. My sister had it 3 years ago and I can attest that making decisions looked much easier from my spot on the sidelines. I hope you are successful working through things with your counselor. So far I’m just relying on my group of friends but we’ll see how I feel after surgery when it’s really time to move on.

    Twills, I hope your symptoms improved after you stopped. I have 7 yo twins and I do worry about surviving but not being able to use my hands & feet properly. I so wish there was a way to know that you killed the cells and you are done for good but obviously that’s not the way it works.

    Thanks for your thoughts Leatherette.

    Pupmom, true, I’ve met several drs that I wouldn’t entrust with my life. My MO was clear that she thought it was time to stop. We have a couple friends in oncology and my dr has been pretty open to considering input that I’ve gathered from them. I’m not sure what she would have said if I had forcefully disagreed on this issue


    · Share on FacebookShare on Twitter
  • VL22
    VL22 Member Posts: 851
    edited November 2017

    Flynn - I get your apprehension and stress because you are TN - we are told from the beginning "chemo is all you have". We read about our "poorer prognosis " and that our cancer is "tricky". But your MO obviously has your best interests at heart and appears confident in her decision. I will not tell you not to worry because you still will, as most would! But you really hung in there and made it so close to the end. Brightness' counseling suggestion is a good one.

    Also, there are definitely some long term TN survivors on here who stopped Chemo early - one I believe had no AC because of an allergic reaction.

    Stay strong and take it one day at a time. Hugs to you

    · Share on FacebookShare on Twitter
  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2017

    Keep in mind that all of these protocols for chemo treatments are based on studies and they can't really study every possible combination of drugs, rounds, dosages, etc. They had to reduce my dosages by 25% after the first round because of extreme SE's and a hospitalization. My MO explained it as the dosages are based on the maximum amount that the majority of patients can tolerate. The majority may only be 51%! That's a lot of people that potentially cannot tolerate it!

    I almost quit chemo after the 3rd or 4th round, feeling that I was worried about lasting SE's. Of course, I also worried about how I would feel if I had a recurrence. But my SE's weren't severe and it wasn't my doc's telling me to quit.

    You can only ask so much of your body.


    · Share on FacebookShare on Twitter
  • Flynn
    Flynn Member Posts: 307
    edited November 2017

    Spookiesmom, I’m so glad that you are doing well! That must have been really scary for you. Thanks for chiming in.

    VL22 thanks to you, too. My MO did mention that if I don’t get PCR, there are some promising immunotherapy trials at my cancer center that we could look into. You’re right, I’d feel better if I had a targeted treatment. I guess everybody has doubts tho. I think the suddenness of the decision to stop really threw me.

    Notverybrave, that’s a good thought about reduced dosage. We had lowered my dosage when i started having a lot of issues with my blood counts. I do feel like my body ran out of steam. I got my pre-surgery mri today and I’m trying not to get too worked up about results. At this point, I need to see how pathology comes in after surgery.


    · Share on FacebookShare on Twitter
  • IntegraGirl
    IntegraGirl Member Posts: 147
    edited November 2017

    Flynn, have you discussed Xeloda with your MO? I finished my chemo but the docetaxol did SFA for me. If I knew that it wasn't going to work, I clearly wouldn't have gone that route because it's a tough chemo. Anyway, my MO has me on Xeloda for 8 rounds because it has been successful for TN that was not fully responsive to initial chemo

    · Share on FacebookShare on Twitter
  • Flynn
    Flynn Member Posts: 307
    edited November 2017

    Hi, Integra, I saw the post about xeloda in the TN section. It looks interesting. It didn’t come up when we spoke to the MO. If I don’t get pcr, I plan to bring Xelodaup when I see her again. I hope that you’re not encountering too many side effects!

    · Share on FacebookShare on Twitter

Categories