First Line Treatment Not Working

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Hi There,

I am writing on behalf of my wife, back in May she was diagnosed with Secondary Breast Cancer with metastasis shoulder bone, liver, lymph node (neck) and now lung. The type of cancer is HER2, she was put onto the following treatment plan:-

- Fulvestrant - Monthly 

- Ribociclib - Daily for 3 weeks then a week off 

- Denosumab - Monthly  

She had a CT scan several weeks ago and we received the results from the scan on Friday just gone, the results were not favorable the treatment is not working and the cancer and metastasis's have all progressed, we have now been advised that the next line of treatment will be  weekly dose of Paclitaxel, We are in absolute shock and fearing the unknown, this news has crushed her fighting spirit a lot. 

The question is, is this normal is it unusual? We felt we have not been offered any support from the oncology team, the news yet again was delivered in a very poor manner by the oncologist, it was literally like here's your bad news and a leaflet do you have any questions! 

Obviously we both broke down into tears and had to get away from the hospital with no answers, we are now in a state of fear as the scan was 3 weeks ago, the new plan might take several weeks to start how much further will the cancer progress in this time. Personally I feel like no one cares if she lives or dies at this stage.

Sorry to sound blunt, everyone is on their own journey but we have no where to turn :-( 

Kind Regards

Mikeyc

  • Hi MikeyC

    Thanks for getting in touch and welcome to the online community. My name is Karen and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.  

     

    I’m so sorry to hear of your wife’s recent secondary breast cancer diagnosis and scan results and that the first line treatment hasn’t slowed progression of the cancer. It’s understandable that this news has come as a shock to you both and that you are fearing the unknown. Everything must feel very difficult at the moment and you will be experiencing a range of emotions.

     

    I’m also very sorry to hear that the news was delivered poorly by the oncologist, that you don’t feel supported by the oncology team and weren’t able to get answers to your questions.

     

    You say that the next line of treatment for your wife is Paclitaxel. This is commonly used alone, or in combination with other chemotherapy or anti-cancer drugs, for secondary breast cancer. I hope that your wife has a positive response to this treatment.

     

    It’s understandable that you are fearful that the cancer will progress, and that you don’t know when the new treatment will start. We would always recommend that you contact your breast care nurse. They will be able to answer your questions and give you an indication of when the treatment will start. Macmillan Cancer Support are unable to access NHS services or your wife’s medical records.

     

    In the meantime, if you or your wife want to chat, please don’t hesitate to call us on our support line. We are here for you.

     

    You and your wife may find the following information useful in helping you to cope with how you are currently feeling - living with secondary breast cancer, managing anxiety and supporting your partner with cancer

     

    I can see that you’ve joined 3 forums on our online community and can see you have been active on the carer’s forum. I hope you are finding these helpful and supportive.

     

    If you have any further questions, the Macmillan Support Line offers practical, clinical, financial, and emotional support. Please don’t hesitate to contact us.

     

    Best wishes

     

    Karen, Cancer Information Nurse Specialist 

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

    Ref/AW

  • Hi Karen,

    Thanks for taking the time to reply to my message, still feeling a little lost with it all to be honest. We will be sure to contact the breast care nurse to get an idea of what is going on.

    Warm regards

    MikeyC

  • Hi  Mikey,

    Thanks for replying. My name is Amy and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    It’s only natural to feel lost, when scan results and treatment doesn’t go as we would hope. Please know we are here to help support you both in whatever way feels right for you.

    I wonder if you might benefit from giving our support line a call.

    We often find we can explain our answers in a bit more detail over the phone, giving you the opportunity to ask more questions if needed. It can be very overwhelming waiting and wondering what the outcome of each part may be and how it might affect you both moving forward. And although we can’t tell you exactly what to expect, we can help explain what usually happens for most people in a similar situation.

    I hope this helps.

    Best wishes, 

    Amy C, Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

    Ref: AC/KH