Possible recurrence Please help??

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Possible recurrence Please help??

This topic has 4 replies, 3 voices, and was last updated 4 years, 11 months ago by sami210.

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- May 28, 2019 at 10:50 am
- Quote
sami210
Participant
Hi All,
I’m a long time lurker but love this forum so much. The amount of information and support you all give is amazing!

I was first diagnosed in 2010 mole on my left arm.
2013 found lump under left arm. Melanoma confirmed. Lymph nodes removed.
2017 routine CT scan found melanoma in lymph nodes in my chest. Not operable. Began IPI/Nivo.
Lymph nodes flared up then went back down stable for over 2 years.
May 2019 CT scan shows original lymph nodes stable. Inflammation on my chest that the radiographer is sure isn’t melanoma however the lymph nodes next to the inflammation are slightly enlarged.
I’m Braf positive. My oncologist has decided to repeat the scan in 8 weeks!! She has also started talking about moving to Braf drugs if the the scan comes back with progression! I can’t believe this I really though over 2 years stable I might have a chance of staying with my girls.
She asked me if I’d been feeling unwell, but I haven’t. Ive just started exercising after 20 years and i sometimes feel a bit wheezy afterwards but haven’t been unwell. Since starting Immunotherapy and getting over the initial problems i’ve been in good health.

Any advise would be greatly welcomed.

Thank you all

Sam xx

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Replies

- - May 28, 2019 at 11:21 am
  - Quote
  Tracyyy
  Participant
  Hi Sam! Fingers crossed for good results on your next scan! My mother has similar problem with inflamed lymph nodes. She is stage 3C and on a trial Dab/Tram + spartalizumab for a year now with good results. However, she got enlarged lymph nodes in her chest, which are different on each scan – bigger, than smaller, then bigger again, now they are smaller. Could it be caused by immunotherapy? Initial nodes in her pelvis disappeared and that is why we think it might be inflammation.
  - May 31, 2019 at 8:21 am
    
    Quote
    sami210
    Participant
    
    Hi Tracyyy,
    
    I hope your Mother is doing well?. Melanoma is such a horrible disease. I hope it’s just inflammation but I don’t hold out much hope. I’ve been stable with no inflammation of over 2 years. I did initially have inflammation in my first scan which then settled back down but is it likely after 2 years stable it’s just inflammation?
    
    Thank you for your reply
    
    Sam x
- - May 30, 2019 at 9:55 am
  - Quote
  obtu.bt
  Participant
  Hi Sam,
  I just wonder if you had only 4 combo of IPI/NIVO then stop it? or you continue with nivo for 2 years as well?
  - May 31, 2019 at 8:18 am
    
    Quote
    sami210
    Participant
    
    Hi, I’ve just finished my last Nivo treatment after being on it for 2 years the day before the scan was carried out.
    
    Thank you for your reply I really appreciate it x

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