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Immunotherapy Response

Juliebri
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Hi 

i am a 62 year old lady diagnosed with metastatic stage 4 lung cancer (Andinocarcinoma) in July 2017, I have been fortunate enough to receive Immunatherapy (Pembrolizumab) as my first and only line of treatment every 3 weeks since October 2017, the results have been amazing for me, after the very first scan 12 weeks after the first treatment the infected lymph glands in my neck ( I had 4 ) had almost disappeared and the tumour in my right lung which measured 5.4 cms had shrunk to 3.4 cms !  The diagnosis showed a possible 2cm tumour above my adrenal gland and since having Pembrolizumab this is now not visible ! I have had regular 3 monthly ct scans and right now my cancer appears to be inactive, I never dreamed that this was possible, the side effects have been minimal and I have been able to carry on living a fairly normal life.

i am in search of anyone else that has had the same diagnosis as me, that has been having the same treatment, unfortunately the Pembrolizumab has only been funded for two years and mine is due to stop this September, as you can imagine I am apprehensive, nervous, scared all rolled into one and am keen to talk with other people that may feel the same, or who have had the two year treatment and now stopped, the Consultant has said that they know our immune systems have memory, so therefore when the treatment stops our own bodies carry on preventing the cancer from growing ?

if you can relate to this and have had the same diagnosis and treatment as me, please be so kind to let me know by return email, Immunatherapy still seems so new and I believe has only been treating lung cancer since 2016 so therefore not enough evidence of it being effective after the two years, however you can purchase the drug at £4,000 for one treatment ! I was also told, if and when my cancer becomes active again I cannot go back on to the Pembrolizumab and would only be offered Chemotherapy as a second line treatment. If this applies to you in any way please be in touch.

Look forward to hearing from you.

 

  • Offline in reply to MauriceS

    By the way, I had  > 50% PD L1 but have since learnt that patients with none or a very low level can respond and some patients with high levels don't respond. The NHS only consider patients with > 50% for NSCLC and my clinical trial was > 1%, personally I believe it should be offered as a first line treatment for everbody.

     Like you, my side effects were minimal and I also had a significant reduction  within 6 weeks of the first infusion. As you realise now, for those of us fortunate enough to get a significant response, this drug is a game changer.

  • Offline in reply to MauriceS

    Hi Maurice

    Thank you so much for all this info it is very helpful & reassuring that there is someone else out there in the same position! 

    My cancer is stage 4 Metastatic so the condition slightly different from yours, however have you been treated here in Britain ? With regards to follow up treatment have you contrast ct scans or x rays ? They have only promised 3 monthly x rays and not scans because of toxicity do you feel this is true or government money issues  ? Like you I have responded so well and I have lost 70% of my tumour also. So pleased for you that you have continued to be stable.

  • Offline in reply to Juliebri

    My follow ups are ct scans with the contrasting agent every 3 months. Whilst too much radiation is not recommended, the alternative is not an attractive proposition. Yes, I am now consulting a doctor on the NHS but he is constrained by the guidelines from NICE. He points out the potential benefits from discontinuing treatment, toxicity etc. but does not disagree that the whole thing is about money.

  • Offline in reply to Juliebri

    I do not continue follow ups with the clinical trial clinic on the advice of my attorney. The lead investigator at the clinic considers it in my best interests to discontinue treatment yet I have never even met him. My onclogy professor who I consulted privately considers that his opinion is scientifically incorrect. I am disputing the decision by the trial clinic to not offer me further access, as if they believe that more than 35 cycles will not be beneficial then they are flying in the face of the clinical experts at NICE.

  • Offline in reply to Juliebri

    A nurse at the clinic told me that if in the case of disease progression the NHS would probably offer further treatment with immunotherapy on compassionate grounds. To my mind it makes no sense to try chemo after a result like this with immunotherapy. Whilst constrained by the guidelines from NICE a NHS doctor has the liberty to continue with immunotherapy if he believes it is in the patient's best interest.

    All in all, in my opinion,  treatment is akin to using a cream to clear up a rash and then assuming that that after 70% of the rash has been cleared up the cream is no longer necessary as the immune system takes over. No more than an assumption.

    I am very happy that you have had such a positive result and I will keep you posted on my experiences.

  • Offline

    hi Juliebri, after reading your post over and over again I was keen to hear how you are doing? If you are still having good quality life? My mum is starting immunotherapy today also and like yourself has metastatic lung cancer, this is her only line of treatment offered to her also and I found it really inspiring to read you had minimal side effects and I hope and pray this happens for my mum. 

    Kind regards 

    Patsy 

  • Offline in reply to Trisha1985

    Hi Patsy

    So sorry not to have replied earlier as I have been locked out of my account until now !

    I am sorry to hear about your mum being diagnosed with metastatic lung cancer, but happy to hear she has been offered Immunatherapy (Pembroluzimab) as her first line of treatment ! My treatment has been very successful for me and reduced my tumour to 2 cms fro 5cms and reduced all other in lymph nodes etc and now my cancer is inactive I am happy to say.

    Is your mum only receiving the treatment for 2 years ? And where do you live ? It’s interesting to find out these things as to whether it varies all over the country .

    i am just about to have my last treatment which is a bit daunting and feel like I’ve been given an extra 2 years and am not sure about the future but will try to maintain a positive attitude moving forward.

    i hope mum is feeling ok after her first treatment ? And wish her all the best for the future.

    Look forward to hearing from you.

     

    Julie is 

     

     

     

  • Offline in reply to Juliebri

    I have my last Keytruda tomorrow 

    it has sent my terminal peritoneal mesothelioma 

    into remission this drug appears to be amazing 

    given to the right people by the right people.

     

  • Offline

    Hi Juliebri, hope you're doing ok, have just seen your post. My partner is in a similar position to yourself, I have sent you a friend request as I have a couple of things I would like to ask you.

    Look forward to hearing from you.

    Regards 

    Daniel 

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