Thoughts and advice needed please!

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Re: Thoughts and advice needed please!

Postby Sara252 » Tue Mar 14, 2017 5:21 am

Hi Susannah

I've been reading all your posts. I too, have been referred to as unusual/unique - I'd much rather be boring & normal when it comes to my medical history! I also don't feel like I've had cancer & haven't been unwell/had symptoms from any of my tumours (also came across clear cell renal carcinoma along the way & had a radical nephrectomy)!

Anyway, I'm British but now live in Australia however when we were back in England in 2015 we saw a Dr Corrie in Cambridge. She seemed to know her stuff & at that time said she wouldn't have treated me any differently than what I was getting here (surgical excision & scans to monitor).

This time last year when the metastasis were unresectable & I was looking at Ipi/Nivo combo she said she wouldn't do if I was there but my oncologist here was confident so we went ahead.

After just 2 double treatments I was hospitalised with what turned out to be d.k.a. - I now have type 1 diabetes because my pancreas packed up. (this is the only time on my 2 year journey I've actually felt unwell)

Week or so later opted for Nivo only & hospitalised again with autoimmune hepatitis. Had steroids for that for 4 months all up (which screwed with the diabetes which I was only just trying to get my head around!). For around a month I was on between 100 & 150 mg/day & I felt quite tired (I understand that's an "impressive" dose!).

Been back on the Nivo since October. Scans all clear "complete metabolic response" however I'm BRAF positive (primary melanoma was nodular) & traces are still showing up in my blood so still having fortnightly infusions.

The back up plan if this had failed or I had been unable to continue due to side effects was Dabrafenib &/or Trametinib which are tablets, I don't know if you've heard of those?

From the start my various doctors have all said the best treatment is surgery & because the last 2 were unresectable, that's why I started the immunotherapy.

Not much of a plan b for you, but yes, I have had pancreas problems.

Good luck.

Sara
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Re: Thoughts and advice needed please!

Postby buffcody » Wed Mar 15, 2017 12:43 pm

I've experienced them often since starting Opdivo proceeded by one double duty treatment with Ipi first time around till side effects aplenty set in. I have been at times on what seems like a roller coaster with high pancreatic enzyme values. When they are present the days of treatment, it is no treatment for that week. I have read research literature that both speaks of the unpredictability of the roller coaster for folks like us on Opdivo and the lack of symptoms at times when the high numbers would seem to indicate you should be really in distress. I can't know for sure the cause of my recurrent and too frequent pain, sometimes tolerable sometimes not, during the last 9 months plus of my infusions. Is it the cancer, which is in my abdominal area, is it the Opdivo affecting the pancreas? When I am not getting my blood numbers tested, is it the pancreatitis or is it hepatitis, which has also been indicated by the sometimes high and varying liver enzyme numbers? The good news right now is that for the first week during close to 9 months I am off the opioids that have been constants for me. No pain for a couple of months and the roller coaster numbers have subsided, though I am not always in the normal range for all 5 indicators. All I have is my story, unfortunately. No advice. But hope!!!!


Frank
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Re: Thoughts and advice needed please!

Postby JBunyan » Mon Mar 20, 2017 12:05 pm

Susanna

Hi. I am also in UK; 3 years into remission from BRAF neg Grade4 , M1(c) malignant melanoma. My oncologist is Prof Ottensmeier at Southampton. I was referred to Dr Larkin at the Marsden - he was, then doing the Ipi/Nivo trial, but was not accepted due to other issues of earlier TCC of kidney. Anyway, I am one of the 20% of responders to Vervoy / Ipi (Plus gamma knife for 2 brain mets in Dec 2013).
Having MRI brain and CT on 28 Mar for next check but hopefully still NED.
I am sure your Oncologist will know Dr larkin and Prof Ottensmeier. The latter is working with a US team on targeted immunotherapy, where one's tumour is tissue typed in great detail , and your T cells are modified to attack only the "bad" melanoma molecules. This is in the early stages but could be much more effective than Ipi, Nivo etc, where the "shotgun" principle of boosting T cells - maybe a bit too fiercely - can be a bit uncertain and have , for some , severe side effects.
I am not sure how candidates for this trial are recruited (it includes other cancers such as lung). I am seeing Prof Ottensmeier on 6 April and will find out more, but it may be worth you talking to your Oncologist about it.
Peter
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Re: Thoughts and advice needed please!

Postby Susannah27 » Tue Mar 21, 2017 2:29 pm

Thanks to you all for your responses. Things have been really busy for me, so I apologise for only just replying now.

I am still off treatment, but there's a chance I may get Nivo again in time, if my pancreatic enzyme levels are good.

I was given a high dose of steroids and it brought my enzyme levels to within normal range within four days. They have remained fine for a week now, and the slight to moderate pancreatic symptoms I was experiencing have eased. (When the levels were highest, I felt fine!) Things will now be monitored for a few weeks to see how it goes, with my steroids already being tapered down.

So I've now had no treatment since January 13th, and a scan on that date showed two out of three lymph node tumours had grown slightly. Another scan ten days ago - which had me very nervous! - has offered some reassurance. Things are classed as stable, with it being deemed a mixed response so far. One tumour halved in size in eight weeks, another remains small, at 5mm (has been this size since November), but a third tumour has grown by 8mm. It could've been a lot worse, as this is all without treatment, (and it means I have no new tumours in ten months). The view is that Nivo is still doing something, so we're hoping I might be able to try it again, in time.

Thank you for your help. I will probably be back with further comments as I've only just seen the replies!

Susannah
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Re: Thoughts and advice needed please!

Postby Susannah27 » Tue Mar 21, 2017 2:38 pm

Sara, thanks for your input. I'm not suitable for targeted therapy as my tumours don't have the mutations needed.

Buffcody - that's interesting and helpful! My pain has been worse when my levels are less worrying, and when they were alarmingly high, my oncologist was surprised I had no symptoms! I'm glad your pain levels are more manageable. Pain is horrible. Fingers crossed for you!

Peter - I would be very interested to know more about that, if you wouldn't mind sharing, when you know more. Very best of luck to you!

Thanks again,
Susannah
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Re: Thoughts and advice needed please!

Postby Susannah27 » Tue Mar 21, 2017 2:47 pm

I apologise for posting several times, but I'm sometimes getting logged out halfway through!

Sara, I'm sorry you've had such a tough time, but it's great to hear you're doing okay. Was it thought that it was the Ipi that caused the issues? I'm slightly surprised they permitted you to get Nivo again after such a reaction. Have your pancreatic enzyme levels remained okay on Nivo alone? I was on 100mg Pred, but it's now down to 60mg, thankfully!

Susannah
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Re: Thoughts and advice needed please!

Postby JBunyan » Wed Mar 22, 2017 6:53 am

Susannah

Will do. Just a thought about UK. I found that brain mets can occur in up to 40% of melanoma patients, but brain MRI's are not routinely suggested with NHS. My2 small brain mrts were found by a full CT / MRI for a potential drug trial sponsored by a drug company. When found they were successfully treated by Gamma Knife, at the same time (late 2013)as I had the 4 Yervoy treatments, also with NHS . I emphatically don't want to worry you but have you had a brain MRI, just to eliminate that area?
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Re: Thoughts and advice needed please!

Postby Susannah27 » Wed Mar 22, 2017 7:27 am

Thanks for your reply. I'm also aware of the high risk of brain mets - so glad yours have been successfully treated! As part of my clinical trial, I'm getting a CT, not MRI, brain scan, every eight weeks. I know MRI is better for picking up smaller mets, but that's all I'm having for now. I'm likely to be off the trial soon, I think, because of the grade four adverse event, so I will ask then if I can get MRIs. I don't think they are done as routinely here, but it does seem to vary.

Thank you,
Susannah
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Re: Thoughts and advice needed please!

Postby Sara252 » Thu Mar 23, 2017 6:21 am

Hi Susannah

Yes, general feeling seemed to be that the Ipi had messed with my pancreas & then my liver. Only continued with the Nivo alone because the melanoma had been detected in the liquid biopsy. Frequent (every other day at one point!) blood tests to keep an eye on things but all settled down now & only monthly blood tests.

It's also thought that the pred is what's caused the adrenal insufficiency.

Sorry to hear one of your tumours has grown. Hope things settle down for you too, so you can go back to treatment.

Sara
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Re: Thoughts and advice needed please!

Postby Susannah27 » Thu Mar 23, 2017 1:51 pm

Thanks, Sara. I appreciate your advice. Hope you continue to do well.
Susannah
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