Thoughts and advice needed please!

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.

Re: Thoughts and advice needed please!

Postby Susannah27 » Fri Jul 14, 2017 6:28 am

Hi,

I just wanted to provide an update on my situation, and to see if anyone had experienced similar. It's now been six months since I last had any treatment, but I'm doing okay. My pancreas is still affected by the Ipi/Nivo. It is managed okay if I am on around 20+mg prednisolone, but whenever an attempt is made to reduce it further, the enzyme levels become elevated. I don't have any symptoms, though. And the melanoma is stable. I haven't had any new tumours pop up in over a year now. I have three distant lymph nodes affected. Two have responded well to the treatment, but a third one is being more stubborn. It did shrink at one point, but then grew again. However, I had an odd situation last month where I experienced severe abdominal and back pain. Lots of tests were carried out, to see if it was pancreatitis, a stomach ulcer or blocked bowel, etc. It was only when I had a follow-up ct scan, eleven days after a routine one, that it was put down to tumour inflammation (the tumour is in a lymph node at the back of my abdomen). It had grown quite a bit in that period of time, but a large central area appeared to have suddenly become necrotic. The severe pain subsided after a couple of weeks, and has hardly bothered me now for the past month. My team aren't really sure what's going on. It's hoped it may be a response to treatment, but may not be. I'm due another scan in around a month, to see what's happening.

Has anyone else experienced anything like this?

Apart from sometimes quite severe fatigue, I feel very well.

Susannah
Susannah27
 
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Re: Thoughts and advice needed please!

Postby Catherine Poole » Fri Jul 14, 2017 9:19 am

That is an interesting situation. I am thinking your body has been "primed" to deal with these mets as they arise and immune system recognizes them. Sorry to hear about the fatigue and steroids. Hopefully that will get better as time goes on. Thanks for keeping us updated!
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
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Re: Thoughts and advice needed please!

Postby Susannah27 » Thu Oct 12, 2017 7:53 am

Hi, just another update on my situation, which will hopefully give hope to others who don't have 'typical' responses to immunotherapy.

My latest scans show that I remain stable, with all three tumours continuing to reduce in size. The tumour that caused pain and showed signs of necrosis has reduced by forty per cent since June. So all good, considering I've been off treatment for nine months. Stage four for over four years now and I'm feeling pretty well.

Susannah
Susannah27
 
Posts: 11
Joined: Tue Jan 31, 2017 5:04 am

Re: Thoughts and advice needed please!

Postby Catherine Poole » Fri Oct 13, 2017 8:38 am

Thank you so much for sharing your good news! Yes, this does provide an uplift for others here. I hope all continues to go well.
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
Posts: 10775
Joined: Wed Jan 02, 2008 12:09 am

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