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November 2, 2012 at 8:22 pm #20742
I had my first infusion of Ipi at the University of Michigan two days ago. Feeling great. No side effects. I guess those come later. I’ll keep you abreast. Decision was made to go for two infusions and almost till the third, December 5, for the STS procedure on my two “very small” brain tumors. That’s the protocol here, shared by my clinical oncologist, the radiation oncologist, and the neurosurgical oncologist, the latter two those involved in the SRS. My forum friend Jeff could do a much better job explaining the rationale behind that than I. But I at least have a “passive” understanding of it.
I intended to get in touch with Dr. Chapman, whom I saw at Sloan, to get his take on this, but this was not exactly the week to get in touch with anyone in New York. I’ll give him a try next week.
I’ve joined a research study that will mean very frequent brain MRIs, every three weeks or so through my treatment, so they will be keeping an eye (or should I say ear) on things cerebral.November 7, 2012 at 8:30 pm #57360
Did get a chance to talk with Dr. Chapman through his office early this week. He felt the approach of starting the ipi for five weeks before SRS was a reasonable one. Caveats, of course, because he did not personally see my brain MRI.
No side effects now one week in. I presume that is par for the course. It’s a bit unnerving to see the list of potentially fatal side effects that is on every other page of the literature that Yervoy publishes. Hope, of course, that I do not have serious side effects, but I confess I do have an interest in when side effects in general begin for those on Yervoy. Maybe I shouldn’t be so curious. But still am.November 7, 2012 at 10:03 pm #57361KerriParticipant
I hope you keep updating because I will hopefully start ipi in a week or so. I, too, was a bit leery of the side affects but a 3 month total treatment sounded better to me than a 6 month or more one. Last visit my doc did mention il-2 but I’m hoping I don’t have to have that one.
I was trying to find out if there was a way to be proactive on some of the side affects. For instance, is there food we should avoid to lessen the chance of colitis? Should we spend a certain amount of time in the sun each day to stave off the jaundice? When my son was born he had a high billirubin count and they told me to put his bassinet in a sunbeam while he napped. I haven’t been able to find any info on these things but if I do I’ll be sure and let you know.
Keeping you in my thoughts and prayers,
KerriNovember 8, 2012 at 12:49 am #57362Shirley ZParticipant
Happy to hear things are going well for you so far. Keeping my fingers crossed for you that all goes well.
Shirley ZNovember 8, 2012 at 10:18 am #57363
Thanks Shirley and Kerry. I will keep posting about how the treatment unfolds and keep open eyes and ears about ways to mitigage the harsher effects as Kerry is looking for. I, too, have nothing on that right now nor ever seen anything. The other thing I am wondering about is exercise. Through the last six years, I have been almost constantly training for masters swimming. Since my lung surgery, I have cut back to a more moderate approach, but I am wondering if it would be in my best interest, as long as I can handle it, to keep the rigorous training regimen up, even if it wears me out, or that moderation in exercise is the best course now. In practice that amounts to the difference between an easy mile in the pool three or four times a week as opposed to a mile and a half or two mile workout with a fair number of fast intervals and sprints thrown in. I have noticed that with the cutback I’ve started gaining back some of the weight that I lost through the years.November 8, 2012 at 2:08 pm #57364Catherine PooleKeymaster The written warnings about drugs go overboard a bit, but it is to protect the pharmaceuticals from legal problems. I have had few patients have serious side effects from IPI. I hope all continues to go well and absolutely keep posting your progress. We’re here to help!November 8, 2012 at 6:21 pm #57365DadZGirlParticipant A little ipi experience,
My Dad successfully completed a full round of 4 ipi infusions earlier this year. I also read the Yervoy.com website and it is really scary. We didn’t notice any side effects until after Infusion # 3 – Dad was reallly really fatigued. But I think if you are younger and in pretty good shape now if you can exercise you should. You should keep your life as normal as you can. As far as colitis goes, we didn’t experience that at all but we did keep a bland, high protein diet going. We didn’t eat anything considered spicy, limited red meat to once per week and had chicken for all the other meals. I think that really helped keep Dad’s tummy settled.
There were only two other side effects Dad experienced, after the 4th infusion the bottom of his feet peeled like crazy and he had a rash on his legs, this lasted for a week. And then 2 months after completing ipi his adrenal glad shut down so he had to do steroids for a week to get it going again but the adrenal gland shut down could also have been related to a surgery he had on May 1. I personally think ipi is a great option to have.
I don’t think my Dad would be here now if he hadn’t done it. Good luck to y’all!!!
LauraNovember 9, 2012 at 7:47 pm #57366KerriParticipant
Thank you so much for posting your dad’s experience. It’s good to know that being a bit proactive with diet may help and certainly won’t hurt.
KerriNovember 15, 2012 at 2:59 am #57367mom4boysParticipant
I was diagnosed with Unknown Primary Melanoma last year June 2011. I am 45 and have a 4 teenage boys and a great husband. I had found a lump in by breast and it turned out to be Melanoma. I had a masectomy no lymph nodes. I was NED for a year and did not have any other treatment at the time- just close observation and scans etc. I had a Pet Scan in June 2012, was clear– but a couple weeks later starting having abdominal pain…so many tests and could not find anything until I ended up in ER…they found a tumor in my small Intestine…melanoma is back again..had the tumor and several inches of small intestine removed. All lymph nodes in the abdomin were clear.
Decided to go ahead now and do ipi…starting in 2 weeks after Thanksgiving. I too am leary about all I read about the drug’s side effects…but, feel it is the best option to do something vs. just waiting for it to come back again.
Does anyone suggest any other options for me? I am Braf negative.
JulieNovember 15, 2012 at 3:32 am #57368AnonymousGuest
Sorry to hear about your disease but you came to the right place for guidance, support, facts and opinions all based upon hard experience.
IPI is a great place to start. If you are currently NED and can get the IPI, do it! It’s side effects are typically not that bad. Don’t let the BMS literature scare you too much but you do need to immediately report anything odd to your doctors as they should watch you like hawks. The side effects are certainly less severe than those of Interferon and HD IL-2…plus it works better.
As many here will tell you, be agressive because this disease can be as well and it’s always best to stay way ahead of it and you’re in a great position to do that.
Enjoy your Thanksgiving and pray and give thanks for your most precious asset in this battle, your family.
JeffNovember 22, 2012 at 10:45 am #57369lak1Participant
Just to say I did have side effects on ippi.
Just over a month before starting ipi I ran a sub 2 hour half marathon. Then 2 days later a liver resection for a metastases from my ocular melanoma. Then 4 weeks later ipi. By 2 weeks i had loose motions and fatigue. I was still running . After the third infusion I got hepatitis and was walking rather than running and sleeping when not outside.
I progressed first on ipi about a year after my first dose my liver lesions had all responded to selective internal radiation and then I started with parital hypopitutary symptoms. Was unable to get off steroids( been trying since the hepatitis) Finally got off 15 mths after starting ipi. I was very fatigued and joint pains when stopping steroids. But that was in Nov/Dec 2011 and here Nov 2012 I am disease free. I am running but my pace is about 2 min per miles slower. I lost a lot of stamina and fitness on ipi but well worth it.
My liver enzymes did go up a fair bit so some of the fatigue may have been from the auto immune hepatitis.
Still like the response though ( At week 24 I progressed from no lesions to 20 in my liver!)
lesleyNovember 23, 2012 at 4:46 pm #57370
I found your response very interesting and hopeful but also a bit confusing. Maybe you can clear the latter up for me. You mention at the end of your post going from no liver lesions to 20 as being a good thing. I can’t believe that would be good
Did you go on steroids before ipi? Did you consider ipi responsible for taking you off steroids or originally putting you on them? When did the hypopituarity symptoms start in your ipi course? How many infusions of ipi did you have? What dosage were you on? I’m still very new at this, and the problem may be I don’t know the lingo all that well. Thanks.
FrankNovember 24, 2012 at 1:19 pm #57371lak1Participant
Sorry very confusing .
I started ipi having had my recurrence removed surgically from my liver 4 weeks before. It was my second recurence coming 10 months after a first liver resection for 3 mets.
My resection margin was less than 1 mm.
I had growth of liver lesions on ipi. from none to 1 at 14 weeks to 20 at week 24. Luckily I was able to get SIRT- internal radiatioin to liver to treat those lesions. At the time they were thought to be progression and not progression before a response. One would have expected me to go on and get more lesions however I did not and it seems I mounted a late response to my tumour. I have developed no new lesions since those at week 24. That must be Ipi- not proven. I went on steroids because of the diarrohoea caused by ipi and the hepatitis . The hypo pituitary wasnt shown till more than a year after ipi but that was probably making it harder for me to reduce and stop the steroids once the diarrhoea and heptitis settled.
I had 3mg per kg. I had the 4 doses the 4th dose week 16. It was a prolonged dose because I was so ill.
So on paper I progressed but then after ipi my disease changed and I am in complete remission. I have ocular melanoma this has not been recorded in ocular melanoma . People can have slower progressing disease but not the change. The only treatment I have had systemically is ipilimumab.
Is that clearer?
LesleyNovember 25, 2012 at 11:29 am #57372
Very clear!!! So much was going on in your course of treatments that writing an account is bound to be difficult. Thank you for taking the time to describe what must have been a horrific few months but has paid off in your current terrific situation! One of the lessons I am learning from your story is not to get discouraged if there are initial setbacks involved with the ipi treatment, whether side effects or seeming progression, since it ain’t over till the fat lady sings. And it sounds like in your case the fat lady is locked down. So far for me, now a few days away from the second infusion, the only side effect is fatigue, and that is not crippling, just leading me to sleep a whole lot more and exercise less but still try to hit the pool every other day or so.November 25, 2012 at 1:36 pm #57373Catherine PooleKeymaster Frank, you have the right attitude! It all can be discouraging, especially when you have fatigue from the drug. But keep up that exercise as it helps your immune system and your state of mind as you know well. I will look for the study that showed this and post it. Keep in touch!
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