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March 19, 2014 at 7:16 pm #21882
Trying to get my head around what to expect with Ipi treatment. My dad just started Ipi a week ago. I’ve read about the typical side effects hand have a pretty good understanding of some of it, but with still no firsthand experience I have a bunch of questions, thought maybe some of you might have some ideas:
– I’m wondering how long it typically takes before there is some response with the cancer? His is pretty bad, and his oncologist said basically if he doesn’t respond to the Ipi, he may only have a few weeks. So obviously I don’t just want to wait around for a few weeks to find out the Ipi isn’t working, if possible…
– Do things typically get worse before they get better?
– He has developed a skin rash in the past few days, mostly on his face and his stomach. I’m assuming this is from the Ipi since that’s listed as a common side effect. But I wondered if the face part could possibly have resulted from his 2 weeks of whole brain radiation that he just completed the day before starting the Ipi? He was tapering off a steroid right then and is now fully off it. The stomach is where we inject the GM-CSF, and I read somewhere that this could be a possible side effect of that. But overall Ipi seems like the more likely candidate. What should I expect here? My mom is taking him into the oncologist today to check it out, and I’m assuming they might prescribe a steroid. So far he doesn’t have any of the other typical Ipi reactions (no nausea/vomiting/diarrhea). He is very worn down though… but they said to expect that after the radiation as well.
Thanks for any ideas.March 19, 2014 at 7:47 pm #63892Catherine PooleKeymaster
Jim: whole brain radiation can be quite depleting, so that may be a good deal of what he is experiencing. IPI affects people differently, but usually slow acting, a few weeks to get a response. There are many different side effects that he can experience, or very few. Be sure to speak with the doctor thoroughly about what is going on.March 19, 2014 at 8:02 pm #63893rochelleParticipant Hi Jim,
I’m sorry to hear your dad isn’t feeling well and it sounds like he’s had some tough treatment…
I wanted to share my experience with Ipi…I had three courses of it over three years and handled it pretty well. My first round was tougher than the other two…totally lost my appetite and I had the dreaded ipi rash…covered most of my body. No steroids other than some topical to help with the insane urge to scratch. (steroid use can diminish the effectiveness of ipi, so if there are no serious side effects, i.e.. diarrhea, I don’t think he will be prescribed oral steroids for the rash). There is a phenomenon that can occur while receiving ipi…sometimes the lesions will get bigger before they diminish…I have had this response countless times and they are tough to get through but they do pass…my team called them “ipi flares”. The lesions get swollen, red and painful and then disappear. But everyone who has had ipi most likely will have had different experiences. I will say, according to my team…a rash is a good sign of response.
As far as when he can expect a response..I think it’s about 12-16 weeks post treatment….though it could be sooner. The fact that your father has had some radiation may increase the response to Ipi..not a proven fact but there’s seems to be some synergy with having both ipi and radiation.
I am wishing the best for your dad and your family. Please keep us posted…and I hope you find some helpful support here.
MarthaMarch 20, 2014 at 12:49 am #63894AnonymousGuest
Sorry to see you all going through this. This disease just sucks out loud.
I assume he tested Braf negative right?
Here are some of my understandings concerning IPI side effects and response indicators.
IPI works by surpressing, or “putting the brakes on” the “T regulatory cells” that keep portions of the the immune system in check. This allows the “Killer T cells” the guys that actually invade the cancer tumor and kill cancer cells to multiply in numbers over what they normally would. You’re allowing the immune system to supercharge itself, so to speak. This expansion of the killer cells is the major reason why you get the some times odd side effects from IPI. Your immune system is a bit out of balance and the killer cells can also attack other healthy cells as well. There appears to be several things that indicate the immune system is responding to the IPI:
1. Some of the side effects mentioned in the literature and here on this forum.
2. Changes in hair color, specifically new hair coming in white or basically clear or free of pigment.
3. White blotches on the skin.
4. A rise in the Absolute Lymphocyte Count (ALC) as shown in the blood tests after the second or third infusion.
I’m sure there are more but these indicate the body is at least reacting and it seems if you have some of these symptoms there may be a good chance you can get a disease response as well.
As I understand it, some of the tumor inflammation is actually the killer T cells physically invading the tumors. Then comes the resulting inflammation as the tumors die back. This is good as the antigens produced by the dying cancer cells and the inflammation spurs the immune system to produce even more killer cells that are attracted to the antigens and inflammation, which kills more cancer. Cool.
The killer cells are normal immune system cells so they can, and do, readily cross the blood brain barrier and attack any brain tumors as well. Double cool.
But it does take time and you have to be very careful concerning side effects as the killer T cells can also go crazy against good tissue as well (which is why your immune system has the brakes installed in the first place.).
So your Dad’s reaction is cause for a bit of hope. And you need that with this crappy disease.
You and his other loved ones also need to care for yourselves too. I constantly say that even though you may not have the disease yourself, you ARE having symptoms from it as well and you need to be treated for those just like any other illness. There is an excellent caregivers forum here and it’s a great place to vent and seek companionship during this journey.
I hope this helps.
JeffMarch 28, 2014 at 8:12 am #63895
Thanks everyone for the super informative replies! Sounds like many things could be going on here. Jeffb – I forgot to mention but yes he is unfortunately BRAF neg. Your post confirmed my limited understanding of how Ipi works, but with lots of extra nuggets I didn’t know about… like the T cells crossing the blood-brain barrier!
Unfortunately, my dad has really gone downhill in the past week and things have been a whirlwind here, so only now getting back to posting here. Was hoping to get some input on his current condition.
So to summarize where he’s at: stage 4 with mets pretty much everywhere, including brain. Had 2 weeks of whole brain radiation which ended 2 weeks ago, whereupon he got his first Ipi infusion. He’s also getting
injections to go with the Ipi. The rash on his face appears to have been due to the radiation, and is healing (like a sunburn). The other rash seems to have been due to the Ipi, wasn’t too bad and is under control via topical steroid cream. GM-CSF
Things were going OK until about 5 days ago, when we took him into the ER due to him being even more run down and having very labored breathing. Turned out he had a very low sodium level. Doc suspects it may be due to brain mets affecting the regulation of sodium levels causing
. After correcting the sodium level, they put him on restricted fluids and gave him 10 mg Dexamethazone (steroid). He seemed to be doing well after that. Then they tapered the steroid down to zero over 2 days, and those 2 days he was terrible. Zero energy, unable to sit up in bed, loss of appetite, not sleeping well, etc. SIADH
The oncologist wanted him off the steroid ASAP because his next Ipi date is in a week. But if he continues on this path, there’s no way he’s going to be in shape to receive it. So today the discussion turned to how do we make him comfortable and hopefully get him out of the hospital and back home, even if it means we can’t continue the Ipi, and this becomes a Hospice situation. So the plan now is to put him back on the steroid, and hope that he gets well enough to come home, and go from there. The oncologist would be open to delaying the next Ipi infusion for a bit, to see if he gets better with the steroid, then taper him off it once he’s doing better. But she’s concerned that with the progression of the disease, that a) delaying the Ipi at all might give the disease enough time to grow to the point where Ipi won’t help, and b) adding the steroid now is counteracting any of the good that first Ipi dose is doing.
Another tricky part is that the doc says it *seems* that he’s responding to the Ipi. His LDH and liver function numbers have actually improved a sizable amount in the past couple weeks, and she was encouraged by him not having huge side effects (for example the rash was pretty minimal). But the doc says she may not be able to tell if he’s responding by looking at tumor size, since they can grow initially as the T cells invade the tumors (like jeffb mentioned), hence the “you get worse before you get better” pattern… or the cancer itself could be growing.
So… a few questions:
– I know a number of things could be contributing to his complete lack of energy (aftermath of radiation, cancer itself, tapering off steroid, etc), but I’m wondering if there are specific organ functions or hormones or something that Ipi might be affecting which could be causing this? Are there any particular levels etc. I should ask the doc to check specifically? For example I saw one post about Ipi possibly affecting pituitary/thyroid function, which could be treatable if they knew to check it.
– Does being on a systemic steroid like Dexamethazone *completely* undo the positive effects of Ipi (what the doc says), or just somewhat (what I’m hoping)? I know steroids and Ipi are a bad mix, as steroids reduce inflammation and suppress the immune system, and Ipi does just the opposite. But is it a complete no-go to do Ipi while on some level of steroid? The feel I get from the doc is that if my dad goes onto the steroid, it’s pretty likely that the Ipi treatment will stop and we’re talking about Hospice. As opposed to him getting on the steroid for say a week or so and coming home, getting a bit stronger, eating more, etc… and then at *that* point trying to taper off the steroid and do the next Ipi infusion. Maybe I’m having unrealistic hopes here?
– Are there any reliable/specific tests/markers to indicate whether Ipi is actually working at this early stage in the treatment (2 weeks since his first Ipi infusion)? I know jeffb mentioned some stuff above… The doc was going to refer to her sources to find out what the best indicators might be; figured I would ask again here too.
– He has developed a large bruise on his abdomen, right above the pant line. I just noticed this 2 days ago, and today it was defnitely worse. I totally forgot to mention it to the docs. He doesn’t think it’s from hitting anything as he’s been in bed most of the time. The only thing that might have caused it is the belt that the nurses use to help lift him out of bed and stabilize him when walking w/walker to the bathroom, or during PT sessions. I’m wondering if it could be the cancer growing there internally and causing bleeding?
Thanks for any ideas, and thanks for listening.March 28, 2014 at 8:13 am #63896
P.S. He had his first 4mg steroid dose this afternoon, and tonight he was noticeable better IMO. That’s encouraging, as that gives me hope that we can get him home from the hospital soon. Also the doc said that if his lack of energy etc were actually due to the cancer growing, then steroids wouldn’t help at all, so this is a good sign…March 28, 2014 at 12:35 pm #63897PatWParticipant Jim, your father’s case sounds very like my brother’s. He was diagnosed Stage IV from “out of the blue” with mets all over his body, including the brain. My brother was treated with ipi immediately after it was FDA approved (he was his oncologist’s first ipi patient).
Five days after his first infusion he went into a neurological crisis with mental confusion, speech aphasia, and an inability to walk due to brain mets. His oncologist suspected that ipi-activated T-cells had invaded his brain causing the tumors to swell which triggered the symptoms. Steroids (dexamethazone) reversed the problems immediately. However, since his doctor believed that steroids counteracted the ipi, he stopped any further ipi treatments. There were no other treatments available at that time and my brother passed away.
Now, 18 months later, I have read posts from other patients on ipi who do take steroids to control symptoms and side-effects. I don’t know the particulars of which steroid or what dose. However, I get the impression that, with experience, some oncologists think that SOME steroid use will not interfere with ipi. You don’t say where your father is being treated or who his doctor is, but it wouldn’t hurt to get a second opinion (perhaps from Jeffery Weber at Moffitt) about whether or not there is some “safe” amount of steroids that one can use with ipi.March 28, 2014 at 2:08 pm #63898NanParticipant
Jim, I have had two courses of Ipi/Yervoy. Just a little rash and slight diaharrea controlled with Imodium. Second course I had severe diaharrea and was given Predinisone. I started with 100 mg and tappered down. I was able to finish the course. I have ocular melanoma. I had my first course in 2010 and have been relatively stable since early 2011. I have liver mets and abdominal mets. My suggestion would be to call BMS (drug company) and discuss with them. I don’t think steriods necessarily diminishes Yervoy’s effect. Good Luck.March 28, 2014 at 9:33 pm #63899Celeste MorrisParticipant Hi Jim,
I am so sorry for all the difficulties your dad is facing just now. Here is a link to an article written by Weber et al that specifically addresses the management of immune related adverse events specifically with ipi.
Hope it helps and hopefully your dad will be feeling much better very soon.
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