Chemotherapy has stopped working

I was diagnosed last year with NSCLC and completed 12, 3 weekly cycles of intravenous Pemetrexed, Carboplatin & Avastin chemotherapy. This proved very successful and stopped the tumour from progressing further. Due the success I was then placed on a maintenance programme using just Avastin and Pemetrexed intravenously, again on a 3 weekly cycle.

Just before Christmas my lung filled with fluid, which was drained. Unfortunately it filled with fluid again so we were advised to have a pleural effusion. The pleurodesis operation went ahead and seemed to be a success, my breathing improved and my cough stopped.

At the beginning of last week I began to feel slightly unwell and was admitted to hospital where it was discovered I had an infection. This was treated over the course of a week with intravenous antibiotics. Whilst in hospital an Xray and scan were taken which showed my lung was once again full of fluid, therefore the pleurodesis has not been a success. My tumour also showed signs of growth.

My husband and I are obviously devastated with this news. It was a terribly shock that we were not remotely prepared for. We were led to believe by the oncologist that as my body was responding so well to the maintenance programme and original chemotherapy I would be able to remain on this treatment indefinitely.

I am now back where I stated, I have lost my drive, positivity and motivation and am terribly afraid. We have a young teenage daughter still at school and I cannot find the right words to tell her yet.

I was released from hospital today and have an appointment with the oncologist tomorrow. He wants to talk about the possibility of putting me on Tarceva. I do not know very much about this treatment.

Is there any advice anyone could possibly give me, or is there anyone in a similar situation to me. Any help would be greatly appreciated.

Regards, Tallulah x

12 Replies

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  • Hi Tallulah

    So sorry to hear you're going though this again, when everything seemed to be going so well. It's easy to be positive when things are going well, but a different story when you get a set back like this. I really hope they can get things sorted out for you sooner rather than later.

    I'll keep you in my prayers. Bill x

  • Thank you so much Bill, I hate posting things on this site that aren't happy, positive or encouraging. I'm just terribly afraid and on the rollercoaster ride of emotions again. I desperately want to get off x

  • Hello Lulla

    I am sorry to hear your news but this site is definitely here for the down days as well as the good ones. Whatever emotions you are experiencing please don't bottle them up. You will get support from the people here, from your nurse specialist and any of the helplines or Cancer centres that are near you. I have attached a link to our tarceva factsheet and we can send other information that might be of use, if you want to message or call us.

    sending you our best wishes

    Lorraine

    Information & Support team

  • sorry here is the link

    roycastle.org/lung-cancer/T...

    Lorraine

  • I have some doubts about the triplet: as first line chemo I would have avoided Avastin. It was a second alone option but now we've gambled it.

    Tarceva is the Roche erlotinib brand name. It was proven to be very effective in presence of EGFR mutation, about 15% of western people, while the remaining 85% is wild type. Many attempts to give Tarceva with no EGFR mutation gave good results on 27 % (higher in non smoking). Did your oncologist make the tests for others, i.e., ALK. KRAS, NRAS, cMET, ROS1? Crizotinib is very effective on ALK positive group and Onartuzumab (still in trial) shown highly positive effect on subjects showing cMet expression in excess of 5o% (FISH test). Other options: Bristol Myers Squibb BMS-936558, known as an anti-PD-1 treatment, showed it was relatively safe and shrank lung cancer tumors (plus melanoma and kidney cancer). If you are prepared to face a relative risk, because of possible side effects, interleukin 24, still on test in animal models, has shown potent stimulation of imuno system to drive an attack against cancer cells but this is the future, unless you...have very good relations with a research centre. Ther are many other options, like vaccines, MAB, etc but all these options are limited to research cancer centres. For further info please do not hesitate to get in touch. My best wishes

  • Hello Lulla

    You are bound to be in a sea of emotion as this isn't a place you wanted to ever find yourself. I hope today goes well for you; everyone here will be right behind you. It isn't an easy time I understand but bear in mind you have some other options to consider. Get as much support as you can and please keep posting. Thinking of you today.

    Joanna x

  • Hello Lulla, so sorry to here your news, however you know this site is here for the not so good news as well as the good! Hope you will not bottle up whatever emotions your going through. There are people on here that will help you. Has Bill says it is Easy to be strong and Positive well things are going well. It's a different story when you get setbacks like yesterday! I wish you luck with your oncologist today! You will be in my prayers as well. Georgie xx

  • Hi Lullia,

    My best wishes go out to you. As you have NSCLC have you been tested for compatibility with taking Iressa, which generally gas good results and milder side effects?

    Here's hoping there's good news just roind the bend XX

  • Lulla,

    I am very sorry to hear your news,

    I know I can't do anything to help but you and your family are in my thoughts

    and prayers.

    Mags.

  • so sorry my prayers are with you sending you a big hug carolxx

  • So sorry to hear this Tallulah, I am very familiar with events you describe from my own family. You still have options so try to be brave. Take care x

  • Really sorry to hear this news, but as everyone says we're all here for each other. I hope you get some helpful advice & more options from your oncologist. Love to you and your family xx

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