Mom wants to give up on chemo after first treatment

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jerzygirl
jerzygirl Member Posts: 2

My mom has Stage 2b breast cancer grade 3 with lymph node involvement. She had lumpectomy and started first round chemo AC treatment last week. Also got neulasta shot 3 days after. She needs 3 more rounds then mastectomy, then more chemo and/or radiation. This first round hit her hard. She has diverticulitis pain, diarrhea, vomiting - all started day after neulasta shot - day three or so and she is getting worse. She has been hospitalized for the past three days for low white cell count, to manage pain and burning in colon. Her counts went up but still so miserable. Before this she has had other issues -  fibromyalgia, ibs, 2 back surgeries ect. so I think chemo is also making these alignments worse.

Is this all normal or  should we talk to onco to change cocktail? She has already made up her mind to quit but she is also very depressed from this right now.

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  • debiann
    debiann Member Posts: 1,200
    edited April 2016

    Definitely talk to her MO. They may reduce or change her cocktail or they may have other meds to offer to counter the se's she is experiencing. I wanted to give up after each round, but hopefully she will start to feel better soon and will have enough strength to get through the next treatment. Prayers for your mom, I hope she feels well soon.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2016

    jerzygirl, Just wanted to send you some encouragement and thoughts. First of all, I am so sorry your mom is going through this. I didn't do AC, but with other health issues, I'm sure she is struggling. I would contact her MO asap and see if another chemo might be easier on her, if that's an option...or, maybe a second opinion is in order. There are a lot of meds to counter-act her SE's, so ask her MO for them at the first sign. 24 hr Claritin may help with bone pain she has from the Neulasta shot. Take a day or two before and after. Maybe they could reduce the chemo dose slightly, if nothing else. Make sure she stays hydrated also. Small bland, snack type meals, often. MO can also prescribe anti-depressants, but they can take a couple to weeks to start working. Best of wishes to you both. She is very lucky to have you!

  • Scwilly
    Scwilly Member Posts: 489
    edited April 2016

    I would also strongly recommend the side effect drugs. Did her docs not prescribe any? I didnt have any nausea on AC, until I stop taking Zofran (Ondansetron) early (after 2 days) I didnt do that again. I also had Emend. I would not have liked to have taken Chemo without these drugs to help me.


  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2016

    I don't have anything to add, really. I agree with all of the above. Definitely let the MO know what's going on. It sounds like your mother is just miserable.

    My first chemo was awful. I ended up in the hospital for 4 days with sepsis. I was so weak I could hardly walk from the bed to the bathroom. And the pain in my lower back, OMG! I thought I would die from pain. Thankfully, the rest of my chemos weren't nearly as bad. I did have to go to the ER a couple of times with fever and low white counts, but was able to receive antibiotics and sent home.

    Perhaps, the MO can change up the chemo or give your mother some meds to counteract the SEs. Nobody should have to go through what your mother is experiencing.

  • muska
    muska Member Posts: 1,195
    edited April 2016

    Please talk to her MO. It seems like Neulasta shots might be adding to her troubles. Neulasta is usually given with dose dense protocol, i.e. AC infusions every two weeks. Ask why she needs to be on dose dense protocol. Maybe they can switch her to 'regular' protocol, i.e. AC infusions every three weeks that usually do not require Neulasta.

    As others have said they can put her on a different chemo regimen altogether if AC is particularly harmful to her GI tract.

  • herb
    herb Member Posts: 51
    edited April 2016

    I had a lot of side effects, but I would not want to just give up. they gave me steroid step down packs , Pepcid and a drug for nausea to take just in case. The steroids really helped get me thru. No Neulasta shots they have their own side effects and pain. so I was glad my doc did not put me on that.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2016

    The Neulasta shot is given for low neutrophil counts. The MO will do blood work before each chemo. I had Neulasta each time and it took me several months after chemo was completed, for them to be in the normal range. That's why we have to be extra-cautious during the NADIR period of chemo. Some of us just have lower counts than others, I guess, but I did have bone pain and seems like the Claritin and hot showers helped:).

  • ksusan
    ksusan Member Posts: 4,505
    edited April 2016

    Where I went, Neulasta was given 24 hours after every chemo (TC), not just dose-dense and not just for AC.

  • muska
    muska Member Posts: 1,195
    edited April 2016
    I did AC + T protocol with 3 weeks between AC cycles, followed by 12 taxols. Neulasta was not part of this protocol and this was the main reason I chose it over dose dense ACT, I did not want Neulasta shots.
  • Mommato3
    Mommato3 Member Posts: 633
    edited April 2016

    Your mom should contact her MO. She shouldn't have to suffer like that. It's possible they could lower the dose or switch her to something else. There's also different drugs that can be given to reduce the side effects. She needs to weigh the risks vs the benefits.

    I did AC every three weeks and was automatically given neulasta the day after treatment. Every MO is different.

  • Beatmon
    Beatmon Member Posts: 1,562
    edited April 2016

    I said I wouldn't continue with chemo after nuelasta.....was switched to Neupogen and did fine

  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited April 2016

    Oh my goodness, please have your mom private message me and I will talk with her. I will even give her my phone number. She cannot stop chemo! No, it is not easy, but it is doable. I am 67 years old. I had many side effects but just kept going. I had the Neulasta shot the day after chemo, 24 hours later. It helps with low white blood cell counts. Have mom take Clariton for bone pain that can be a side effect of Neulasta. I will be happy to share what I did for side effects, and I sure had them.

    Yes, her other issues might add to the discomfort of chemo, but chemo is going to save her life. She can do this with support. I had a bilateral mastectomy with reconstruction and chemo last year. I am doing great now......walked 4 miles today. I am painting my house and do not have any lingering side effects. I did have neuropothy for awhile, but it went away. During chemo, especially during the last 2 treatments, I was very weak and cound hardly make it from the bedroom to the kitchen. BUT, it does go away and there is so much for your mom to live for.


  • jerzygirl
    jerzygirl Member Posts: 2
    edited April 2016

    Thank you all for the great tips. She is finally feeling better and eating again and will be released tomorrow from hospital. She had a rough three nights and even coded the other night after a reaction to a blood pressure medication. I was almost on her side about stopping because it was so scary. Her onco dr. said he will lower the dose and possibly change the cocktail but she is still not trusting them so much. I will ask about the Neupogen - I did not know there was an alternate to Neulasta and I think that is what did her in this time.

  • Evie999
    Evie999 Member Posts: 1
    edited July 2018

    Hi Jerzygirl,

    I know this post is very old and I hope you're mum is doing well.

    Ive just seen your post while searching on behalf of my mum and your situation sounds exactly the same as ours. My mums just had her first chemo for breast cancer (she also has fibromyalgia) and will need 4 rounds of chemo before a mastectomy and nodes removed and then more radiation/chemo.


    She ended up in hospital this morning after fainting, being sick, migraine which I know can all be normal side effects but she now doesn't know whether she should be taking the injections prescribed (filgrastim/zarzsio) because she feels its making her worse. Did your mum stick with the neulasta? This is also putting her off having anymore chemo.

    Thanks

  • WC3
    WC3 Member Posts: 1,540
    edited July 2018

    Evie:

    Sorry your mom had a rough time. My oncologist uses a strong anti nausea protocol so I'm not sure if it's that working or just me, but here is what they give me for nausea for comparison.

    1. I take dexamethasone pills the day before and the day after infusion, 8mg twice each day.

    2. The day of the infusion, to prevent nausea I am given IV dexamethasone and IV Aloxi.

    3. At home I have Zofran pills to take, and compazine pills to take if the Zofran doesn't work. I normally need a Zofran in the morning on days 2 and 3 and sometimes in the evening but have not needed to take the compazine. I take the Zofran at the first hint nausea.

    Eating a light, easy to digest diet starting a few days before the infusion might also help. Some people do a fast or partial fast of sorts, but that is something that she would need to discuss with her doctor, as fasting or calorie restriction can be dangerous for some people or if not done in the right manner.

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