Hi all hope you are well as can be. Just update you my scans back still NED been on treatment nearly 3 years. Oncologist said I can choose to stop but able to re start if returns. Keydruda is treatment I been having. Part of me nervouse but also be nice to have a break. .
- June 18, 2020 at 6:46 pm
MelMelParticipantI cannot make statements one way or another since I am not in your shoes. I go in for my CT scan tomorrow and I call it my judgement day. After 18 months and a terrific initial response, I was derailed and now moving along like a snail. Feeling like the shoe can drop at any time since my luck will run out sooner or later and it is just a matter of time. I am in no way trying to be negative but instead actually trying to point out just how happy and relieved you should be at your progress. Congratulations! Keep thinking positive thoughts and enjoying every minute of your NED status. The rest can only dream of having to deal with your dilemma.
- June 18, 2020 at 9:00 pm
Best wishes and may you remain NED for years to come.
- June 19, 2020 at 4:48 pm
I hope your results will be good for you. For me was a long dark time getting to NED. Started my journey 2011 , over the years I have had melanoma in liver, lungs, other areas in body, brain tumour, plus was very poorly in 2018 with a stomach tumour. Had 9 bags blood over 3 weeks very weak. I will do my best to keep fighting and dont know what will be next.
Keep your strength up, positive thoughts.
Pray for good scans for you.
- June 19, 2020 at 12:48 am
I was taken off Keytruda and TVEC 18 months ago – the TVEC had made a huge difference and I started to respond, but after the tumour shrank to 1cm on the MRI I was taken off treatment because of side effects and the doctor injecting the TVEC could not really find any tumour on the ultrasound to inject. So I was pretty depressed to be taken off.
Fortunately on my first scan post treatment they could not find any melanoma. Since then I have stayed off treatment but have been more or less NED with each scan. So Lynda I think it can be done, especially if you are being scanned so you can swing back into treatment quickly if needed.
Melanie, I hope that your scan tomorrow will be good, I have CT scan Friday too 🙁 and then the scanxiety waiting for results. I am not quite sure how you are doing but if you have stable disease that can also be good, but I hope that you will have even better scan results.
Good luck Mark
BubblesParticipantWay to go, Lynda!!! That’s wonderful. Enjoy! You can see my comment to Maryb-z on this topic below your post, if you like. Best, celeste
- June 19, 2020 at 1:09 am
jbronickiParticipantThat is wonderful news Lynda! I understand the anxiety, but so glad to hear this news!
- June 19, 2020 at 1:17 pm
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