› Forums › Cutaneous Melanoma Community › IPI NIVO combination
- This topic has 10 replies, 4 voices, and was last updated 7 years, 3 months ago by
rhodri.
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- April 17, 2016 at 7:23 pm
Firstly i have been following this board for over two years but have not posted as there has not been much to say to this point! This is a really incredible resource with respectful knowledgeable wise group of people Almost happy to be here
Diagnosed Stage 2A July 2013 nodular type 3 5mm WLE completed Neck Location Sentinel Nodes clear One year on interferonwhich stopped October 2014
In January i had palpable lymph nodes in my armpit confirmed melanoma mets by biopsy
CT scan showed further mets right adrenal 5cm both lungs 1 5 and 1 0
Started IPI NIVO combo on March 17 Uneventful apart from some d and v and a chest infection I thought coincdental
This week after the second infusion and i have had diarrhoea and vominting since day 3 Have been back into see the team a few times and they are very pleased with the results LDH is dropping from 500plus to around 300 chest xray is showing positive changes Very happy with their care but wondering if anyone with first hand experiene has any thoughts?
Taking Imodium 16mg daily
Ondasseton 8mg three times a day
All the best
Rhodri
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- April 18, 2016 at 2:23 pm
Hi Rhodri,
Although it stinks that you progressed, I'm glad you're seeing results with the combo.
I was on these meds last March when the were still in the trial phase. After my first infusion, my subcutaneous mets swelled up and I developed a rash around what I call my "melanoma areas" – my primary, lymph nodes, above my liver, and above any subcutaneous tumors. After my third infusion, I had the same side effects as you. I was put on major steroids and was taken off the trial. I was super upset. HOWEVER, my scans in May 2015 showed 95% tumor reduction. I followed up with a single dose of ipi in May 2015 and have been on nivo since June of 2015. In November 2015 I was declared NED (no evidence of disease). I didn't see a reduction in my LDH until this February.
Be sure to report your side effects to your doc. If they decide to stop the combo, don't take it too hard. There are many of us on this board who didn't get all 4 infusions but are doing well.
Best of luck,
Ashley
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- April 18, 2016 at 2:23 pm
Hi Rhodri,
Although it stinks that you progressed, I'm glad you're seeing results with the combo.
I was on these meds last March when the were still in the trial phase. After my first infusion, my subcutaneous mets swelled up and I developed a rash around what I call my "melanoma areas" – my primary, lymph nodes, above my liver, and above any subcutaneous tumors. After my third infusion, I had the same side effects as you. I was put on major steroids and was taken off the trial. I was super upset. HOWEVER, my scans in May 2015 showed 95% tumor reduction. I followed up with a single dose of ipi in May 2015 and have been on nivo since June of 2015. In November 2015 I was declared NED (no evidence of disease). I didn't see a reduction in my LDH until this February.
Be sure to report your side effects to your doc. If they decide to stop the combo, don't take it too hard. There are many of us on this board who didn't get all 4 infusions but are doing well.
Best of luck,
Ashley
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- April 18, 2016 at 2:23 pm
Hi Rhodri,
Although it stinks that you progressed, I'm glad you're seeing results with the combo.
I was on these meds last March when the were still in the trial phase. After my first infusion, my subcutaneous mets swelled up and I developed a rash around what I call my "melanoma areas" – my primary, lymph nodes, above my liver, and above any subcutaneous tumors. After my third infusion, I had the same side effects as you. I was put on major steroids and was taken off the trial. I was super upset. HOWEVER, my scans in May 2015 showed 95% tumor reduction. I followed up with a single dose of ipi in May 2015 and have been on nivo since June of 2015. In November 2015 I was declared NED (no evidence of disease). I didn't see a reduction in my LDH until this February.
Be sure to report your side effects to your doc. If they decide to stop the combo, don't take it too hard. There are many of us on this board who didn't get all 4 infusions but are doing well.
Best of luck,
Ashley
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- April 18, 2016 at 11:54 pm
Hi Rhodri,
Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.
Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.
Not to spook you for my side effects were more severe than what my onc. has seen before and what I have read for the broader people doing the same thing. Some have next to none!
Sorry, tried to make it short.
Good luck and stay posted.
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- April 18, 2016 at 11:54 pm
Hi Rhodri,
Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.
Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.
Not to spook you for my side effects were more severe than what my onc. has seen before and what I have read for the broader people doing the same thing. Some have next to none!
Sorry, tried to make it short.
Good luck and stay posted.
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- January 28, 2018 at 2:05 am
Firstly sincere apologies for having disappeared for nearly 2 years. When I’ve seen this on Melanoma boards historically I’ve suspected the worst.
I was pulled off the trial after the second infusion because of toxicity and admitted to hospital with grade 4 symptoms. After two months of steroid treatment my first scan showed a marked improvement.
my second scan at 6 months showed some minor progression and I was started on Pembrolizumab. I stayed on this for another 5 months and stopped because of multiple immune related adverse effects particularly arthritis. I have now been off immunotherapy for a year and have had surgery to clear my axilla, radiotherapy to prevent local recurrence and most recently surgery to remove my one remaining lung met.
To anyone considering immunotherapy I can only be encouraging despite the trials of the past year. I feel very fortunate to have developed this terrible disease at this time.
I will continue to update.
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- April 18, 2016 at 11:54 pm
Hi Rhodri,
Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.
Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.
Not to spook you for my side effects were more severe than what my onc. has seen before and what I have read for the broader people doing the same thing. Some have next to none!
Sorry, tried to make it short.
Good luck and stay posted.
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Tagged: cutaneous melanoma
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