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June 27, 2014 at 1:39 pm #22060msue5Participant
Hi Anne. I just wanted to tell you that I have Lupus and did Ipi after many opinions. One Oncologist was dead set against it. My rheumatologist was fine with it. I was followed very closely with weekly blood work and exams. My Oncologist consulted Bristol Myers and they were in contact with my Dr. and me weekly. They were very interested because Ipi was never tested with autoimmune disease and as far as they knew I was the 1st autoimmune pt using Ipi. I had no lupus problems and all my side effects were neuro related. I had numbness in hands and feet, poor fine motor skills in my hands, memory issues etc. the Ipi doses were delayed at times for high dose Prednisone but I managed to get all 4 doses in the required 16 weeks. My biggest problem was extensive swelling of my neck nodes that were threatning my airway and esophagus. This required 4 weeks of radiation. My Rheumatologist whose opinion I valued the most did extensive research on Ipi before giving the go ahead pointed out the Melanoma will kill me if not treated and all we could do was try and treat any Lupus related symptoms with steroids. I responded very well to Ipi and it’s been a year since I finished and I have some active disease returning. I have a PET Scan coming up and will repeat Yervoy since I can’t get Anti Pd1. My Oncologist is very hopeful about Yervoy working again. I just wanted to let you know that you shouldn’t rule Ipi out.
Mary SueJune 28, 2014 at 11:47 am #64800
Thank you so much for this information MarySue. Automimmune disease and the immunotherapies is being looked at by some institutions carefully, Sloan Kettering for one. For some it has worked out find, but it is a careful road to traverse. Again, thanks for sharing your story.June 28, 2014 at 9:02 pm #64801SoSoCalParticipant Mary Sue & Annie,
As a 1b person who also deals with autoimmune issues, I have been following your stories closely. Mary Sue, I really appreciate your detailed update. For the most part, my Rheumatoid Arthritis and Sjogren’s Syndrome are quiet right now, yet they do not seem to ever truly go away. The fact that the melanoma may return never truly goes away either.
The idea that the best treatments out there amp out your immune system is rather scary when your immune system is already in overdrive.
Please know that you are truly pioneers and your struggles hold value for many people. I know that sounds strange, so I do hope you understand it in the loving way I offer it.
CathyJune 29, 2014 at 9:47 pm #64802AnnieoParticipant
Thank you so much Mary Sue for your message and also for thinking of me.
I had a long and heartfelt message typed to you the other night but lost it
In summary, I was really delighted to hear of your ‘lack of’ inflammatory side effects. Both my oncologist and dermatologist have been talking about ipi/r.a. almost as if i’m doomed to react badly to it!
I will let them know what you have reported. I understand that it is very early days for ipi & its side effects, in relation to patients with autoimmune diseases . My oncologist told me on my last visit that I am his most challenging patient. At the time I presumed he was referring to the fact that I have other medical issues, including r.a., but now I realise he is most likely referring to the big question of when to start me on ipi. He said that that is ‘the big question’. I am techinically Stage IV, having had 3 recurrences in my leg since December. Follow-up PET scans have not shown melanoma. I have what they are calling ‘low volume disease’, in that it is not being picked up on the scans. I understand that they are confident that the melanoma is lurking in my body. (They seem to understand how mine is behaving) however, PET scans will only pick up tumours of a certain size, they say. I can’t remember the exact measurement mentioned. Does anyone know?
I had more PET scans two days ago. I will receive the results on the 7th of July, when further plans will be discussed … I want to push for IPI at this stage. I’d rather start it than not. I saw my dermatologist last week and she said that a decision has to be made on starting ipi and she will be pushing for it. She says it’s all well and good to have positive PET scans from which to track the progress of Ipi, but if my latest scans show no sign of melanoma I think she is saying that she will be pushing to start it anyway, considering how active it has been since December ….
I feel more hopeful now, that I may not be as unwell on Ipi as they are hinting, thanks to your message Mary Sue. Though, I know everyone is different, it gives me a little hope
I am so sorry that your disease is making an appearance again Mary. It is very disappointing I’m sure. Fingers crossed for you that you will have another positive experience with ipi. I hope you will keep us posted.
Best of luck with your up-coming scans and thanks again for sharing your experience with me. It is very much appreciated
AnneJune 29, 2014 at 10:04 pm #64803AnnieoParticipant
Thanks for your message. It is lovely to be patted on the back. It doesn’t happen very often!
You are living with the unknown too and it is difficult. The autoimmune stuff is never far away and it truly is difficult to live with pain. You might look great but your body certainly doesn’t feel that way! People don’t see or understand the pain, so you don’t bother talking about it … I don’t mean to moan or sound negative but I am just stating a fact and reminding you that I probably know how you feel … I have great admiration for you already!
I get the feeling that this thread might open new avenues for information on melanoma patients with autoimmune disease on immunotherapy treatment. Everything has a beginning and without doubt, time will paint a clearer picture for us. For me, it was great to hear from Mary Sue alone. Sharing personal experiences is a fantastic way to keep informed. I will keep ye posted on my experience.
AnneJune 29, 2014 at 11:41 pm #64804
I think the PD1 will be safer bet for autoimmune disease folks. I have a conference call tomorrow with Merck and plan to ask about it. It seems to me that if you do have autoimmune disease than you should not do IPI and get out of that requirement to get Pd1. Pd1 has fewer side effects overall so I think would be safer for you than IPI. By the way my grandson has an autoimmune disorder Juvenile Dermatomyositis. It is rare and started for him at 14 months, he just turned two and has 12 hour infusions monthly with ivIG. He is now off prednisone which was very difficult but still gets small does of methotrexate and plaquenil. So I know what you mean when you say it is hard to imagine that you have something when you look pretty normal otherwise.
Anyway, my heart goes out to all of you dealing with these complications and I hope to get some answers for you tomorrow.June 30, 2014 at 4:19 am #64805msue5Participant
Thanks everyone for responding to this thread so we can all learn from each other. I know everyone might respond differently but as my Rheumatologist pointed out I was Stage 4 and would most certainly die from Melanoma so what choice did I have? I had weekly Sed rates, blood counts and ANA while on Ipi and for an extra month after completing it. It could be that the other issues that required High dose Prednisone saved me from having Lupus issues. That was going to be the plan anyway if my Lupus became an issue. I am BRAF + and was started on Zelboraf against my better judgement because I had low tumor load and I did not want to use it until I had no other options. I had excruciating joint pains on Zelboraf that were far worse than my Lupus and I developed 3 SCC literalLy overnight that had to be excised and that was when it was decided I needed to start Ipi. I will have scans soon and will see what is up with a pelvic node that has persisted to have a SUV of 16 but stable in size. Catherine maybe I will get a free pass for PD 1! I hope that these conversations will help others realize that Immunotherapy isn’t necessarily an automatic no. I went off Methotrexate and Prednisone when it was evident that my melanoma was progressing but remain on Plaquenil. Catherine I hope your grandsons condition will be manageable with his regimen. Autoimmune diseases are certainly mysterious as is Melanoma.
Mary SueJune 30, 2014 at 11:58 am #64806
It certainly seems to me that if IPI is a problem for those with automimmune disease then you should be able to bypass that criteria. Of course when it is approved (which should be very soon) the IPI requirement should be waived. Let me reach to those I know who could influence this. It would really help for all of you to call your senators/congressman (or are they on vacation) to urge the FDA to approve PD1 as first line treatment!!
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