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April 21, 2013 at 10:11 am #21206DoughdoyleParticipant
Hello all, my name is Doug and this is my first post. I decided to join after reading so many informational posts from forum members.
My best friend (wife) was recently diagnosed on 4/10/13 with stage 4 Metastasized Melanoma. CT scan indicated one spot in her right lung and another lymphnode in her chest. PET scan indicated additional spot on her upper right calf under the skin (very small Onocologist can’t feel it) and another small spot on her right fibula bone. MRI of the brain was clear. Our Onocolgist ruled out any surgery for removing said mets. He has been in contact with colleagues at Beth Israel Deconess Medical Center (BIDMC) in Boston and it appears they’re leaning towards a high dose IL-2 treatment at BIDMC. No date yet but we should be having a formal meeting with them probably next week. Her original tumor is going to be tested for BRAF. I have read so much about the PD-1 clinical trials and was hoping she could get into one of them. Apparently BIDMC is a trial location. The only other treatment she did was the Interferon Alpha 2B for a year, she just completed it three months ago. I don’t know if she is even elligible and if she was, should I push the issue the doctors. I really haven’t read much at all about IL-2 in this forum. Sorry for being so long winded. Sincerely DougDApril 21, 2013 at 12:23 pm #60184Hstevens0072Participant
Hi Doug, I’m sorry you are going thru this. My situation is very similar, mets to lungs in Jan. 2013. Only one spot. I go to Dana Farber. BRAF and NRAS negative. They started me on Ipilimumab (Yervoy). I asked about IL2 but they don’t do it at Dana. They feel it is an outdated treatment which has minimal success, and it is very tough to go thru. Who are you seeing at Beth Israel? DF had Dr Hodi as the leader of their melanoma group. He is on top of the research. You might try DF for a second opinion. I see Dr Ibrahim and I think she takes good care of me. I finish my fourth Ipilimumab infusion next week.
Good luck with whatever you decide.
HollyApril 22, 2013 at 11:41 am #60185Catherine PooleKeymaster
IL2 has about a 6% or less response rate and is an older therapy. PD1 on the other hand has been shown to have more than 30% response rate. The difference in side effects is considerable. IL2 is very toxic and most of the time the patient has to be in the intensive care unit. PD1 however is outpatient and many folks have little or no side effects. Now is a good time to get into a PD1 trial as there are many locations. We can help you find one.April 22, 2013 at 2:26 pm #60186dhdoyle68Participant Hello Catherine,
It’s me Doughdoyle, I messed up my original account
😳so I made a new one. Anyways, I would love to find a PD-1 trial in Boston if there are ones, I would appreciate the help. If there is one how does she go through the process? Does it have to be intiated by a Onocolgist? Any assistance would be great.
How are you doing? I heard Ipi can have some very bad side effects. Are your treatments inpatient at Dana-Farber?April 22, 2013 at 5:02 pm #60187Hstevens0072Participant
I do the ipi on an outpatient basis. I shoot into Boston for labs, meet with onc and then a 90 minute infusion – usually followed by a delicious lunch Tomorrow is my 4th – and final – infusion. So far, so good. No side effects – I feel great. Scans in mid-May. Still working full-time and doing all the normal things you’d expect. It makes me wonder if it’s working. I thought about IL2 but it seems there are so many more effective tools out there and the side effects sound horrible. I am BRAF and NRAS negative. You and your wife will do the research then make the right decision for you. That’s what’s important. Full steam ahead!April 22, 2013 at 6:21 pm #60188dhdoyle68Participant Thanks for your reply Holly, it sounds like you’re handling the side effects well. I really hope it works for out for you. We were told the the side effects are a lot worse than IL-2 and you do it on a “outpatient basis”. I would really like to get my wife into a PD-1 trial. I haven’t heard much about Ipi except for the bad side effects. How often do you go into Boston for your treatment?April 22, 2013 at 8:46 pm #60189Catherine PooleKeymaster All sites in Boston (there are 3 or 4) will be through contacting: 6176325053 firstname.lastname@example.org
some of the trials are IPI refractory (progressed after IPI) and some are IPI naive (never had IPI or Yervoy)April 30, 2013 at 3:43 pm #60190DianapParticipant
Good luck with your last ippi,
I am on number three on 17th May, and wonder like you ‘is it working?’ my last one is in June and then a scan will be carried out. That I am not looking foward to, but I see people have another course of ippi the following year. My husband thought you couldn’t do this and I haven’t gone that far.
Lets do the first round and see what the response is. This drug has a big job on its hands to make me NED, as is the case with other members, but we can wish.April 30, 2013 at 9:49 pm #60191dkmcParticipant
I hope & wish all you IPI receivers will become NED…we are so grateful at Don’s response-we wish we could will it to happen for all. Don had a pretty easy time through his doses of ipi soooo much easier than interferon(he only did 1 month high dose)-no real options at high risk stage 3 where he started after surgery & radiation. Now there are more options. Don is Braf neg. C kit neg & failed to get into vaccine trial. When he became stage 4 with lung mets he immediately started ipi. It has been 18 months & he is still NED since stage 4 diagnosis. 13 months since post Ipi scan showed all clear. He had thought about anti PD1 but at that time decided he wanted to try IPI first(not even sure could have gotten in a trial at that time.) Scan coming up & we still hold our breath every time. I know he is one of the “lucky” ones. Best wishes coming your way as decisions are made. I think it is wise to check into the anti PD1 trials available first before starting any therapy.
KarenApril 30, 2013 at 10:37 pm #60192EricW1Participant
Hi DKMC….that is great about the ipi working…I have a question did your husband have any side effects? My wife gets her third dose next week and really nothing to report…. just trying to see for the people who respond if they have effects or not…based on what i have found it is a mixed bag….
as for the PD-1 Vs IL-2 my two cents is do the pd-1 as the il-2 will still be available if the pd-1 does not work…you may not be able to get into a pd-1 trial down the line for various reasons….Good luckApril 30, 2013 at 11:35 pm #60193NYKarenParticipant
Regarding Yervoy (Ipi) vs. IL-2, I have done both. My first time on Yervoy was not too bad, fatigue, which nearly everyone experiences, skin rash,and diarrhea controlled by Budesonide, a steroid that only works in the gut. My side effects were much less severe than with IL-2. The SECOND time I was on Yervoy, about a year later, I had no rash but developed colitis. So, you really never know. Many people here and on other forums have done Ipi with few side effects. I believe the key is being managed by a melanoma expert who will recognize side-effects and treat them properly/quickly.
IL-2 is pretty rough, but as soon as you get home, you start to feel better.
This past December, I was found to BRAF+ after a false negative test done over 2 years ago and have been doing well on Zelbarof for 4 months. Now the tests used are more accurate.
I’ve tried for a long time to get into a PD-1 trial, but there was always one exclusion or another. Hopefully the Zelbarof will keep me holding for a while.
Please let us know what happens at your meeting with the docs.
KarenMay 1, 2013 at 1:41 am #60194dkmcParticipant
Don had the usual fatigue(NOTHING like interferon fatigue)- no symptoms/side effects until right near the end when after hanging outside Christmas lights one cold day in Dec. he came in & had severe muscle spasms in his hands. He could not straighten them, really painful. I ran some hot/warm water over them & then wrapped them in our heating pad & all was well. That was pretty much the worst of it. We did not do scans during treatment so the waiting was the hardest part!! Karen
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