Increase in tumour size after Chemo

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Hello I have just joined the group in the hope that someone is having a similar experience/or already been through the same as me and can offer some encouragement.  I was diagnosed with Triple Negative Breast cancer end October 2020.  My treatment plan is two phases of Chemo, followed by a removal of the tumour and then breast saving operation followed by 21 days of radiotherapy.  I finished my 1st phase of Chemo which was 4 x ACdd (Doxorubicine and Cyclosfosamide). I had the MRI scan once this treatment was finished but unfortunately the tumour hasn't shrunk in fact it has doubled in size!  This has really given me a knock as I just didn't expect to hear the bad news I just assumed the chemo would work.  Has anyone else had the same case.  I have now been told the breast will be removed ( possibly both depending on the results of the genetic testing).  I have started the second phase of chemo treatment which is 12 weeks of Paclitaxel.  Of course all my hopes are pinned on this working but its a waiting game and I am finding it hard to handle the not knowing.  

Would love to hear from anyone going through the same ordeal.

  • Hello Cheesewell, also everything crossed for the next treatment.  Wishing you all the very best x

  • Hi and Himalaya I hope you are both well.  I haven't been here for a while, all the chemotherapy drugs that have been tried so far have not worked and the cancer has progressed.  I am now waiting to have a biopsy in the hope that I start a clinical trial.  I continue to keep fighting, praying that something will work to stabilise the progression.  I really hope you all are keeping well and everything is going in the right direction for you.

    Take care X

  • Hi there, 

    Lovely to see your name back on here! I saw a different post from you asking about Trodlevy. I’m sure I read on another Breast Cancer forum about an NHS Early Access Scheme but I may be wrong…..Perhaps the staff on here could help you?

    You must be so tired and fed up with all of this. Do keep in touch and let me know how you are getting on. Perhaps PM? Don’t know how you do that on this site. 

    As I said, nice to see your name again because your last post was from hospital and I often wondered how you got on.

    Himalaya

  • Thank you so much Himalaya.   I read an article about Trodlevy and it seemed promising, I don't know how or if I would be eligible to access the scheme but I am definitely tired of trying different drugs that do not work and continues to progress the cancer.  I don't know if it is possible for me to ring around different hospitals just to get other opinions and to see what treatment has worked for other patients which I have not tried.  I might give it a go to see if there is any other help out there.  

    I hope you are ok and thank you again

  • The lady on the forum had accessed it with the help of the other Breast Cancer forum….might save you time phoning around. Are you near a specialist hospital?

    It must be so disheartening to get negative results and I can appreciate how that must feel. You keep digging deep though don’t you?

    Take care

    Himalaya

  • Thank you Himalaya, I will have a look at the Breast Cancer Forum.  It is so hard to hear the results but I'll keep fighting on.        

    Take care                                                                                    

  • Hello FaithDe, I often wondered how you were getting on as heard nothing after your last message.  It is terrible ordeal , my heart goes out to you.  It is so scary, are you talking to a professional about your feelings.  I know it is natural to break down when you are alone I really hope you get the support you need.  I have heard nothing about Trodelvy before, I hope this is an option for you.  Can you not get some info from your nurse/doctor on the subject?  I await to hear your news after the biopsy and are eligible for a clinical trial.  Keep me posted, take care.

  • Thank you so much , I have a community nurse who is so supportive, she has been great in putting me in touch with a counsellor for emotional support and has also helped with arranging sessions for complementary therapy which has been great in regards to relaxation. I'm still waiting to hear about the trial and will continue to look at treatments that have worked for others to see if there is anything I can suggest to my oncologist.  Take care and I will keep you posted.

  • Hi FaithDe,

    When I was diagnosed, I was given Macmillan forum info and another specifically for Breast Cancer. Not sure if i can mention it here. Hopefully you’re on that forum too which discusses the Early Access Scheme for Trodelvy by a lady.

  • Just had a look Himalaya, thank you so much. I've signed the petition to allow Trodelvy to be provided free of charge.  

    Each day the waiting to hear about whether I'm suitable for the clinical trial treatment is becoming more and more stressful.  Praying I will hear some positive news this week, will keep you posted.

    Happy Monday to you and everyone, we will continue to fight on Hugging