› Forums › General Melanoma Community › Ipi/ Nivo and Type 1 Diabetes.
- This topic has 13 replies, 6 voices, and was last updated 6 years, 2 months ago by
Raeofsonshine.
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- February 28, 2018 at 1:40 am
As a stage 3 warrior I wanted to share my experience with the ipi/ nivo combo. I had two rounds of scheduled 4. I lost my thyroid and got immunotherapy induced hepatitis. I also got the rash. I haven’t had treatment since the very end of December due to these issues and working to resolve them. AKA steroids. In the last few weeks the blood glucose has been up. And up and up. And finally UP. Went in today with the hopes of getting back to treatment, Opdivo only and was told nope, we’re stopping. I now have Type 1 Diabetes. I can handle the diagnosis. I’m scared to death about the end of treatment. Like I’m not fighting anymore. I hope the combo did enough.
Thanks for letting me share. I wish you all the best of luck. Keep fighting!!
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- February 28, 2018 at 2:32 pm
First, sorry about the double post above. Not sure why that happened. Second, thanks for posting this. Good reminder that the secondary effects can be serious. I was thinking about that earlier, that most of the people posting here are probably ones that have had good success with treatments, so – while it's good to hear success stories for many reasons – we need to remember that the feedback is probably skewed to the postive. I hope you're able to get back on treatment.
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- March 1, 2018 at 3:50 am
Hi Gopher,
As to your comment: "we need to remember that the feedback is probably skewed to the [positive]". Do we???? Hmmm….as a member for 1 month, I'm not sure you really have enough experience here to judge us in that way. Some of us here have done very well. Far too many will live in our hearts forever for their bravery, their willingness to share their difficulties, and their ultimate loss. There are many of us who (no matter our personal response or lack thereof to therapy) have dedicated innumerable hours to keeping up on the latest melanoma data in order to share it with others. Positive? Yes, I AM!!!!!!!!!!!!! Skewed???? Not in the least. celeste
PS….if you really want to hear all about side effects from immunotherapy….here are a few posts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/do-melanoma-peeps-with-side-effects-to.html
Yep. You read that right. #10. And I didn't really count all of them. I've been reporting on side effects to immunotherapy since I was a canary in the coal mine back in 2010.
I wish you well. c
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- March 2, 2018 at 5:10 pm
Thank you for your post! I see that you are extremely educated on the topic and have been dealing with and helping others understand this monster for some time. I see Dr. Rene Gonzalez at the University of Colorado, Melanoma Clinic. He and Dr. Karl Lewis I know have been on the forefront of a lot of the research and trials for these drugs. I do feel like I am with the best for this part of the country- I live in Denver. I truly think if he thought I should be doing alternative treatment he would suggest it. I hope so anyway. It is really hard to place your life in someone else's hands and hope they have your best interests at heart. I am not yet 2 years out of initial diagnosis and I am not NED. I have lost my thyroid, damaged my liver and likely am now insulin dependent. IF the beast is contained I am ok with that. Not complaining at all. Really what I need to understand is HOW LONG does the system continue to fight/ attack the melanoma after your last dose. This is what I don't understand.
Thanks again for your posts!
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- March 2, 2018 at 6:49 pm
I have a link for you to a speech given by the research dr that was part of the team who created Ipi, a CTLA-4 checkpoint inhibitor. He now works and does research at MD. Anderson in Texas. Hope it explains the immune system and the interaction of immunotherapy drugs to you, if you still have questions ask away. Best Wishes!!!Ed https://www.youtube.com/watch?v=CoBkuTOPJqg
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- February 28, 2018 at 5:47 pm
Hi Rae – I'm so sorry to learn of your side effects and the necessity to remove you from treatment but it sounds like you had a tremendous response, given the reactions. There was a similar post last fall from a Stage 3 member who also developed diabetes. Celeste had info for him and this is the link to her blog post that discusses it:
Right now though, since you are NED and given what you've endured with side effects, stopping treatment would make alot of sense!! Here's hoping NED is a permanent state for you!!!
To Gopher – Unfortunately, there's nothing sugar-coated here!! Stick around long enough and you will see that. I've only been a member here for 2 years now but last year was tough with the reports of those who lost their battles. The good news reports are vital for those who are struggling – it gives us something to hang our hopes on.
I wish you both the best possible outcomes as you move forward!!!
Barb
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- February 28, 2018 at 6:07 pm
Thank you for your input and for sharing the link! I wish I were NED. That is not the case. I am blessed that the disease has not progressed to my trunk area and head BUT I have a leg with about 6 or 7 mets so lets hope the treatment worked to keep them from becoming hazardous.
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- February 28, 2018 at 6:26 pm
Oh gosh – I'm sooo sorry Rae to mistake that. Are you still deemed only stage 3 though or did you actually progress to 4?? Also, if there are no mets other than on your leg, maybe some radiation is in order now.
I think if I was in your place right now I would be seeking 2nd opinions!!!! Please consider doing this!! Perhaps post your location and let others respond as to what treatment centres are the best, in their opinion, for your neck of the woods.
Wishing you the best!!!
Barb
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- March 1, 2018 at 4:11 am
Hi Rae,
So sorry for all that you are dealing with. I hope you are being treated by a melanoma specialist. It is certainly possible that once you get your diabetes under control that you could successfully continue nivo as a single agent. That said, if you look at the several links at the bottom of this post, many folks with only a few doses do incredibly well in regard to their melanoma:
On the other hand…if it is true that your lesions are localized in only one limb…you may be an excellent candidate for several treatments. I'll start with a review of basic melanoma therapy:
See more below…..
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- March 1, 2018 at 4:17 am
It may be that intralesional therapy (meds that are injected directly into subcutaneous lesions) could be a treatment option for you. Here's a link to a zillion posts, sometimes they are combined with immunotherapy…but that is not required:
Additionally, you might want to speak with your docs about limb perfusion therapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/chemo-via-isolated-limb-perfusion.html
Don't know that any of this will help you much. But, I wish you my best. Celeste
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- March 1, 2018 at 6:46 pm
I was diagnosed Stage for in January of 2015, with mets throughout both lungs, and I took two course of the ipi/nivo combo therapy, which caused meningitis, hepatitis, and insulin-dependent diabetes. I was hospitalized for two weeks.
NED by October of 2015.
I continue to deal with the insulin-dependent diabetes, but I’ll take the trade!
Praying for you. Keep up the good fight!
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- March 7, 2018 at 9:43 pm
Thank you for your post. Are you still insulin dependent? How is your liver?
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