› Forums › General Melanoma Community › when to start steriods on ipi/nivo
- This topic has 5 replies, 5 voices, and was last updated 6 years, 11 months ago by
JaneD.
- Post
-
- May 20, 2017 at 10:05 pm
Hey Everyone,
First, thanks to everyone who posts here. It is so comforting to read everyone's experiences and has kept me sane for the first part of my treatment. I had melanoma I guess 20 years ago. Thats what the first pathologist siad. After removing a large section of my leg the second pathologist said no it was spitz nevus. The surgeon said sorry and I jumped for joy and never thought about it again. 20 years later my inguinal lymph node got big and hard fast. Long story short I find out I have stage 4 melanoma with a few other smallish tumors throughout my body-crazy cause I felt normal. Lucky to have started on ipi/nivo as soon as possible. Combined with a special diet and a bunch of probiotics which are emerging as somehing that really helps the immunotherapy work better (I would be happy to share if anyone is interested).
Just had my second infusion last week and ever since I have been struggling with a constant cycle of nausea, chills and fever that reaches 103F. Tylenol gives me a few hours of relief but I am really struggling-messaged my doctor today-but it's saturday so I don't expect much until monday. Just by reading these message boards I know these flu like symptoms has happened with others too. How long do I suffer through this and how do people feel when taking steriods?
I am feeling horrible but I am happy to feel this way beacuse I know my immune system is taking care of buisness. The lymph node in my leg was originally 2cm and it doubled in size and was super painful after the first infusion. It then got much smaller and softer measureing under 2cm. It has just gotten a little bigger and painful again as well as another lymph node in my neck. At first I was worried my cancer was growing like crazy but logically the growth and pain is more more likely immune cells getting into my tumor and killing the cancer cells. When I get a fever I know my immune system just can't stop itself-the brakes are gone and the cancer cells are now a foreigner. So I am keeping positive.
- Replies
-
-
- May 20, 2017 at 11:26 pm
My husband is on ipi/nivo as well. He has been on steroids since October due to different reasons . You can find his medical history in his profile. The dosage was different at different times – from 2 mg per day to 8-10 mg per day – depending on the circumstances and symptoms.
His second infusion is on May 25. He is on 6-8 mg of decadron per day now.
A low dosage of steroids should not diminish the immunotherapy effectiveness.
Consult with your doctors as well .
-
- May 21, 2017 at 1:42 am
Hi,
My experience was similar. I had a mole removed 10 years ago and they told me all was well. Then suddenly I had stage IV melanoma. I had a stroke waiting for the biopsy results so I didn't go on Ipi/Nivo until a month later. About 6 days after the second round of infusions I got fevers and then chills in a cycle. Tylenol would bring down the fever to about 102 then it would go up to 104. I was only getting about two hours of relief from the Tylenol. My oncologist had me go into the ER that night. I ended up with hepatitis (which is one of the possible side effects of the treatment) but it didn't show in the bloodwork until I few days later. I did also have nausea. Once the bloodwork indicated hepatitis they put me on IV steriods and I felt instantly better. I ended up on prednisone which made me feel very energized and tremendously hungry. I ate everything in site. I was responding well, multiple tumors (lungs, adrenal glands, lymph nodes, even two small brain mets) had all shrunk in size or disappeared. Tumors continued to shrink even after I was off of the treatment for 4 months. Then suddenly I ended up with an aggressive brain met which needed surgery and then radiation and I'm on Nivo only and waiting for scans.
My oncologist is at Dana Farber and they are wonderul about answering calls on off hours. Not sure where you are getting treatment but I hope they have someone on call with whom you can speak. It stinks waiting when you are not feeling well. I hope you are feeling better soon.
Take care,
Jennifer
-
- May 22, 2017 at 9:49 pm
Around my 3rd combo dose I started running fever, lasted non stop for 6 weeks. The worst chills and sweats I have ever had. Around the end of the second week I figured out how to self medicate, motrin every 2 hours, and kept it under control every other day I would go past the 2 hour window and sure enough the fever would flare up and I would have to go through the cycle of chiils and sweats. After it finnaly stopped it came back a couple of times for a day or 2 but it has been about 4 months now. I still get nivo every other week.
-
- May 23, 2017 at 3:44 pm
Not sure whether prednisone is the appropriate treatment, but if it is–don't worry about a high dosage. The interaction between prednisone and treatment effect has been studied and there is little-to-no treatment effect. Important to address side effects before they mushroom into bigger problems.
-
- June 16, 2017 at 11:01 am
Hey All, thanks for your replies-so helpful to know other people are experienceing the same stuff! Its been a bit of a rollar coaster with the side effects these past few weeks. After I posted I was admitted to the hospital for the fevers-my doc called it a mini cytokine storm and my pituitary was inflammed-so then put on 20mg prednisone. Felt great!! Then tapered off to get my next treatment and my liver enzymes shot way up and fevers came back. Now on 50mg prednisone. That makes me feel wacko but I need my liver function back to a safe zone to get my next treatment. So my 3rd ipi/nivo treatment is postponed. This is so disappointing but my doc said its not a race, the treatments will work better if my body is working well and he said you are responding too well-that we are "poking the bear". This makes me laugh so I had to share. My immune system is on overdrive and attacking the rest of my body is what he meant. I am trying to stay positive but I am so worried that I will be taken off the dual treatment which I know is working. The tumor in my inguinal lymph node is way smaller-doc measured it and it is less than half the size.
-
- You must be logged in to reply to this topic.