Stopping Chemo?

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bibliozona
bibliozona Member Posts: 4
edited December 2016 in Chemotherapy - Before, During, and After

Hi all, I've been lurking here and am finally to the point where I need to ask a few questions to those who might have some experience.

The new puppy jumped on me and bruised my left breast in February. By August, there was a lump that would come and go with my cycles and felt like a bruise. I went and had a look-see with ultrasound, the doc said it was a suspicious mass of about 1cm; she recommend we biopsy it right away. I was already there, so I agreed.

Came back as IDC, ER/PR neg, HER2 pos.

My breast was sore and swollen for weeks after biopsy. By the time I had a mammo and MRI two weeks later, they said the tumor was 6cm. Because I did things "out of order" with US first - I suspected they were seeing inflammation caused by biopsy.

I found a nearby treatment center and met with MO and BS. Had lymph node biopsied in left armpit, came back clear. PET scan came back clear - no mets. Because of the size of tumor, they recommended chemo first, then lumpectomy, followed by a year of Herceptin. Had port placed on Sept 8, 2016. Started on TCHP on Sept 15, 2016.

Had an MRI just before my 4th round, last Wednesday. The MRI is clear. No malignancy, no sign of tumor.

The side effects from this protocol have been rather severe for me. I could deal with hair loss and fatigue. It's the tummy effects and the fact that I believe I've developed an anal fissure - my whole undercarriage hurts, it hurts to breathe, it hurts to pee, it hurts to bend over to pick up a sock, and most of all, it hurts like hell to poop. It bleeds like crazy, I sit on ice packs and slather on Prep-H and Emla cream to numb it, but it's inside of me where I can't get to it.

So, at this point, the tumor is gone and I'm suffering. I've got numbness up both arms, my face, lips and throat are numb, and my knees buckle when I stand for too long. My heart rate is all over the place. I went in to get fluids and electrolytes and the nurses had never seen a heart rate behave like mine.

My MO is very stubborn and insists that I complete all 6 rounds.

I am willing to continue with Herceptin and Perjeta, but at this point, I am feeling like the chemo drugs are not necessary any longer. I believe they are causing more harm than good. When the tumor is gone, it's not medicine anymore, it's poison, at least in my mind. I've looked for studies about the effectiveness of 4 vs. 6 rounds of TCHP and there isn't much out there. An old study using older drugs from 2010 seems to indicate that 4 is just as effective, and 6 just produces more long-term side effects.

Can anyone give me their experiences/thoughts? Had good results with similar diagnosis? Walked away from chemo? Found a new MO?

My next infusion is scheduled for Dec 8th.

Thank you for your insights, whatever you can offer.


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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    I am so sorry that you've had an anal fissure and that you've suffered from gastrointestinal distress. That is not unusual; Taxotere is well-known for causing gastrointestinal distress. By the way, if your heart rate is crazy, it might be due to the Herceptin, not the chemo. You aren't on Adriamycin, which can impact the heart. Herceptin has effects on the heart, too; hopefully your doctors are monitoring your heart very carefully. I know that I had heart scans every four months while I was receiving Herceptin.

    Hmm.... While MRIs are pretty good about picking up cancer, the only definitive proof that your tumor is gone for good is the pathology report after surgery. After chemo, my MRI and PET scan showed that I didn't have active cancer after chemo, which was true. But, after surgery, it did come out that I had a small pocket of DCIS. So, MRI's don't pick up everything.....

    One thing about cancer: neoadjuvant chemo is not just about treating the existing lump. It is about killing the cancer cells that are circulating through your bloodstream, and/or lymph system. Cancer cells may have broken off from the lump, and are travelling through your bloodstream, looking for a new home.

    That is not to say that you shouldn't talk to your doctor about the awful side-effects you have experienced. If your doctor is serious about you completing six treatments as opposed to four, he/she needs to take your concerns seriously. If he/she doesn't, it may be time to look for a new medical oncologist.

    Best wishes!

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2016

    Hi biblio, welcome to Breastcancer.org, and thank you for posting!

    We're so sorry you're dealing with these terrible side effects -- for sure, there's something to be said about maintaining a good quality of life while on treatment. Definitely speak with your doctor about the effects you're experiencing -- perhaps they have some other options for you or can help in another way to ease the most uncomfortable effects.

    Others are sure to be by soon with their thoughts, advice, and experiences that will help. It's a little quiet around here on the weekends, so hang tight and check back in -- we're all here for you and wishing you the best!

    --The Mods


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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2016

    Have you seen a Cardiologist yet? Possible/potential heart issues should be checked out sooner rather than later. Possible heart issues are not to be 'messed' around with. Chemo can cause all sorts of problems. "The nurses had never seen a heart rate behave like mine" when being given IV fluids and electrolytes - strange that a Dr was not notified ASAP.

    " It bleeds like crazy". Have you seen a Gastroenteritist? Is this why you needed IVs?

    As both neoadjuvant and adjuvant Chemo are systemic (blood borne), they both attack cancer cells throughout the entire body - before or after surgery.

    My DX was different and my TX was also - I did neoadjuvant A/C and adjuvant Taxol. I would definitely have been demanding answers IF I had experienced what you are.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited November 2016

    I had side effects very similar to yours - I had 4 AC and 12 Taxol. I had anal bleeding which is not uncommon. I had crazy heart rates. They kept a close eye on my heart, but was discovered after I finished chemo that I had a heart attack then I had permanent heart valve damage from Herceptin and had to quit after 3 months.. I've been on heart meds and see a Cardiologist for 4 years now. It took 2 years for my heart rate to come down even with meds!!

    I begged my Oncologist to let me stop chemo. He would not let me but helped me deal with them and make sure I improved. So it is very important to make sure your Oncologist knows how severe you feel and how severe the side effects are.

    Now that I am 5 years out, I thank God every day that my Oncologist did not let me quit. But when you are in the midst of it, it is beyond terrible. Sending my best to you!

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  • Myraclaire
    Myraclaire Member Posts: 20
    edited November 2016

    hi bibliozona

    I'm so sorry you're suffering. I have been there with the anal issues and I know how painful it is. It isn't the Taxol, bc I had it from AC.

    I had the fissure, the thrombosed hemorrhoid and the bleeding. The pain, as you know, is indescribable It reached the point where I blacked out from the pain while on the toilet! I went to 2 gastric who both told me my only option is surgery. That's all I need during chemo!

    I have finally found some relief through acupuncture (with Moxibustion). I've been going religiously twice a week. No more pain and only minimal occasional bleeding

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  • bibliozona
    bibliozona Member Posts: 4
    edited November 2016

    Thanks for the support, everyone. It's been a long, tough weekend. I broke down and openly sobbed at Thanksgiving. My favorite meal of the year, and I couldn't eat but a bite or two.

    My face is completely numb, as are my lips and tongue. It is tough to communicate clearly with my kids and husband. I can hardly open my mouth to swallow, let alone chew food. When I do get something down my throat, I end up choking half the time because I can't feel anything. The numbness in my feet is now into my thighs, both hands are numb, and my left arm is numb to the shoulder. I'm a writer, so having my hands not work correctly is a real bother. I have cuts all over my hands because I can't feel anything, and I still have to cook dinner for everyone. That sends me to bed for a three hour nap.

    Haven't had solid food in 5 days.

    And nosebleeds galore. A couple of times a day.

    The butt issue is still awful. Not bleeding as much, but still sore and hurts to move. The D seems completely immune to Immodium. Hydrocodone seems to be the thing that stops the pain and gives me a breather between episodes.

    The heart rate is still varying between 49-90 beats, all over the place. One minute fine, the next, I feel like passing out.

    And I just read up on the lawsuits against the maker of Taxotere regarding permanent hair loss. I never thought I was vain about it until I lost it - but my hair was magnificent. The thought of not being able to grow it out again really breaks my heart. More so than even losing a breast at this point.

    Not that I am going to, because, again, the tumor is GONE according to MRI. No mets. No nodes. That was the entire goal of the the treatment, to shrink the tumor for surgical excision. We have observable proof that the treatment worked after 3 rounds. I took a 4th. I'm willing to keep on with Herceptin and Perjeta. But the chemo drugs, I think at this point, are overkill.

    I am growing more comfortable with this as I continue to battle the effects of the chemo.

    Anyone else have any experience with a decision like this? I'm gearing up to contact the MO a week or so ahead of time to tell her how I'd like to proceed.

    Blessings to you. Thanks for your support.

    AMO


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  • bibliozona
    bibliozona Member Posts: 4
    edited November 2016

    Hi all, for those that took the time to respond - I spoke with my MO today and - Hurrah! - she agrees that stopping the chemo at 4 cycles is the best thing to do, given my side effects and the clear MRI. The timetable for my surgery has been stepped up a bit, and I'll continue on with Herceptin every 3 weeks - but the worst is over! Chemo is done! Thank you!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    Good news, bibliozona! You've suffered enough. Hopefully, your heart will hold up, and you can continue on the Herceptin for as long as you can. I'm glad to hear that your MO took your side effects seriously. Hope your side effects go away soon and that you can feel more normal.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    Thank goodness. I hope your recovery is quick. Will you need radiation? So happy the tumor is gone.

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  • bibliozona
    bibliozona Member Posts: 4
    edited December 2016

    I don't think I'll need radiation, but that's just a hunch. I guess it depends on if they find any node involvement in surgery. I am scheduled for another MRI and PET scan to make sure I'm all clear everywhere, then surgery will be scheduled soon after. Thank you for your kind wishes! I'm eating a few bites of real food, and feeling stronger every day.


    AMO

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  • FightingTheFight
    FightingTheFight Member Posts: 75
    edited December 2016

    I'm glad to hear your MO agreed about stopping chemo and that you can start to heal. You've definitely been undergoing some major suffering and I'm praying for you.

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