Home Forums Melanoma Diagnosis: Stage IV Amy Going to Start IL2 – any Feedback & Experience??

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  • #20892
    zephyr66
    Participant

    Amy got bad news today at the doc’s. Her 2nd IPI reinduction is not working and what we thought was a small hernia around the area of her gall bladder is a subcutaneous tumor says her doctor. She finished her 4th IPI infuision 3 weeks ago today. She was on Zelboraf in the past. She got a full CT scan today but she is having trouble urinating and is generally feeling bad. She has a spinal tumor on the cuada equinus and the trouble urinating and difficulty walking suggest enlargement of tumor. Our melanoma said while PD1 is looking very promising, the closest one to us in Los Angeles gives us only a 50% chance of even getting the PD1 while the other 50% get some other treatment. He said it can also take a while to get into the trials and if it were his family member he would opt for IL2 first. So, she should start next week. We have been warned what it entails… “You have to want to get sick… really sick…. until you say uncle”. As many rounds as she can tolerate each 5 days stint the better. I know the odds are only about 10% that it will work but he says when it does work, it’s usually good. We will get Ct results Wednesday morning whether melanoma has spread to other places. This is really scary.

    Can anyone let me know if they have gone through IL2 and what their experience was?

    Thanks and happy new year.

    Sylvia

    #58288
    Catherine Poole
    Keymaster

    What your doctor says about the PD1 trial is not correct for the Merck trial, which Dr. Ribas has at UCLA, you will know up front what she is getting and if she progresses can crossover to the PD1. here is his contact: http://www.cancer.ucla.edu/index.aspx?page=645&recordid=214

    The Angeles Clinic also has a number of trials that may be of interest. They have the BMS Pd1 which is as your doctor says, with no crossover. They are listed under our Resources above in BLUE

    IL2 has a response rate of only 6%. It is terribly depleting and toxic.

    Another option might be a reinduction of the Zelboraf.

    I know this is very difficult to decide, but I would discuss it further with your doctor and if you can, get a second opinion from Dr. Ribas. He is very accessible and kind. Let us know if we can help you further.

    #58289
    zephyr66
    Participant

    Catherine,

    Thank you for the suggestion. This is so difficult to decide and we are so pressured for time. Can you tell me usually how often you have to travel for PD1 and how long the studies generally last? I work full time and she cannot travel alone and I need to know ahead of time roughly how much time would be required from me. Unfortunately, I can’t get off with pay cause I’m self employed as a mental health therapist so there is no time off and nobody can stand in for me.

    Sylvia

    #58290
    zephyr66
    Participant

    Catherine – I’m sorry to ask you this but I’m having trouble finding the study you are referring to on the UCSD site you gave me. I found a list of trials there but didn’t see anything for PD1. Can you point me to the study so I can read about it? Also, I have another question. I have read that unless you have the PD1 receptor, that you don’t respond to the PD1 medication. Is this true? Do they test you for the receptor like they test for BRAF mutation before giving Zelboraf? Thank you. We are going to contact Dr. Ribas and get as much info as quickly as we can as time is not on our side right now I don’t think. I emailed Dr. Ribas but his out of office reply said he doesn’t get back in till the 3rd. Hopefully there will be someone else there that can give us some information also. Thank you for your help.

    Sylvia

    #58291
    Catherine Poole
    Keymaster

    Sylvia,

    Try going here: http://www.clinicaltrials.gov/ct2/show/NCT01295827?term=pd1+melanoma&rank=4

    There is also a new one that opened up that I posted recently, I will see if I can find it. I believe you have to travel there every three weeks. Also, the Angeles Clinic has a lot of open trials with PD1 and other agents. You could try there as well. You do not have to be PD1or L positive. They are not finding a strong correlation, so no worry there.

    Try also: Omid Hamid, M.D.

    The Angeles Clinic and Research Institute

    Suite #200

    11818 Wilshire Blvd

    Los Angeles, California 90025

    #58292
    jamesa
    Participant

    Hi Sylvia,

    I think that the Merck PD1 trial that Catherine is referring to that patients can “cross over” is at this link:

    http://clinicaltrials.gov/ct2/show/NCT01704287

    Study of MK-3475 Versus Chemotherapy in Participants With Advanced Melanoma (P08719/MK-3475-002)

    The good news is that it states that the trial is currrently recruiting. The only site location listed in CA. is at the Beverly Hills Cancer Center. It appears that Dr. Ribas does NOT have this trial.

    At the BH Cancer Center, Dr. Steven O’day is the Melanoma Director.He was one of the Research Doctor involved with IPI. Dr. O’day is as famous and well respected as Dr. Ribas. Dr. O’day was the Melanoma Director at The Angeles Clinic thru 5/2011. Maybe you could email Dr. O’day & telling him about Amy’s situation..time is of the essence! SODay@BHCancerCenter.com

    Here is some contact information for BH Cancer Center:

    http://www.bhcancercenter.com

    Dr. O’day email: SODay@BHCancerCenter.com

    8900 Wilshire Boulevard

    Beverly Hills, California 90211

    Phone: (800) TO-HEALTH

    Phone: (310) 432-8900

    The another PD1 trial is BMS which only gives you a 50-50 chance to get the PD1 drug:

    http://www.clinicaltrials.gov/ct2/show/study/NCT01721746?term=bms-936558&cond=melanoma&phase=2&rank=2&show_locs=Y#locn

    Bad news is it states it is not recruiting yet…But when it opens you could pick from many sites in California , UCLA-Ribas,UCSD LaJolla-Dr. Daniels, etc.

    I hope this information helps you.

    Good Luck & please keep us posted. Our prayers are with you during this difficult time.

    James

    #58293
    Catherine Poole
    Keymaster

    Thanks James! I also found out recently that 2/3 will get the PD1 in the BMS trial vs. 1/3 the chemo. So that’s a little better than 50/50. It does have about a 30% response rate (IPI has 15-20%, IL2 6%) let us know how you make out. I have been getting updates on the PD1 BMS accrual and it is available at the Angeles Clinic.

    #58294
    zephyr66
    Participant

    Hi..okay, i’m a little more confused than before now. catherine – the first link you sent me – is that the study with dr. ribas? i just don’t know how to really precede and what questions to ask and what looks like the “better” study. traveling to LA every two or three weeks is no issue at all. but, she is getting worse and we have to do something fast and i’m afraid the IL2 might do her in and she’ll be too weak to try anything else if it doesn’t work. and , i don’t like the IL2 odds.

    sylvia

    #58295
    Catherine Poole
    Keymaster

    I would place a phone call to Dr. Ribas, as far as I know he has openings in the Merck PD1 trial that is dosage based. His research nurse can fill you in if he isn’t there or tied up.

    I think a second opinion overall with him is in your best interest. He is an excellent specialist and a kind human being to get an opinion of what is best for her. You could also call the Angeles Clinic (Santa Monica) that has many trials running or Dr. ODay who has the new clinic in Hollywood. But I would start with Dr. Ribas and he could even advise you on their trials. I agree that IL2 could be to toxic for her and take away her quality of life. There is also a reinduction of Zelboraf perhaps or other BRAF agent, since they work quickly.

    #58296
    jamesa
    Participant

    Hi Sylvia,

    I agree with Catherine to get a second opinion. Hopefully, Dr. Ribas or his study nurse can respond to you quickly & give you information about the trials that are available at UCLA .

    I noticed that you live near San Diego area. Have you contacted UCSD in LaJolla. UCSD in La Jolla is one of the site available for the BMS PD1 trial is at La Jolla:

    http://www.clinicaltrials.gov/ct2/show/ … ocs=Y#locn

    Here is some contact info for UCSD. Dr Daniels is the Melanoma Specialists over BMS PD1 trial. Maybe you can contact Dr. Daniels to see when his BMS PD1 trial will be opening:

    phone: 858 534-3804 or 858 822-6267

    email: gdaniels@ucsd.edu

    Merck PD1 trial:

    http://clinicaltrials.gov/ct2/show/NCT01704287

    http://www.bhcancercenter.com

    Dr. O’day email: SODay@BHCancerCenter.com

    Phone: (800) TO-HEALTH

    Phone: (310) 432-8900

    As Catherine stated: You could also call the Angeles Clinic (Santa Monica) that has many trials running or Dr. ODay. I agree with Catherine try to start with Dr. Ribas. Then, perhaps simultaneously send emails/ or call the other doctors, identified in our posts. You could tell them about Amy’s condition & ask them about availlable PD1 trials. Based on your description of Amy’s condition, you need information quickly so you can make decisions, emails or calling the doctor’s might expedite your process of finding out PD1 trials available.

    I know that this is overwhelming so I hope that our posting Doctor contact information helps you. Please keep us posted …good luck!

    James

    #58297
    jamesa
    Participant

    Sorry, wrong link for BMS PD1 trial: UCSD in La Jolla contact Dr. Daniels :

    phone: 858 534-3804 or 858 822-6267

    email: gdaniels@ucsd.edu

    http://www.clinicaltrials.gov/ct2/show/study/NCT01721746?term=bms-936558&cond=melanoma&phase=2&rank=2&show_locs=Y#locn

    **************************

    Original Post:

    I noticed that you live near San Diego area. Have you contacted UCSD in LaJolla. UCSD in La Jolla is one of the site available for the BMS PD1 trial is at La Jolla:

    http://www.clinicaltrials.gov/ct2/show/study/NCT01721746?term=bms-936558&cond=melanoma&phase=2&rank=2&show_locs=Y#locn

    Here is some contact info for UCSD. Dr Daniels is the Melanoma Specialists over BMS PD1 trial. Maybe you can contact Dr. Daniels to see when his BMS PD1 trial will be opening:

    phone: 858 534-3804 or 858 822-6267

    email: gdaniels@ucsd.edu

    #58298
    zephyr66
    Participant

    james,

    dr. daniels is amy’s doctor in san diego and he has been little help about finding a trial. he is the one who suggested IL2 and said there was only one trial in LA with PD1.

    subsequently, i have taken your advice. it turns out dr. ribas does have a pd1 trial where everyone gets PD1 (to the best of my knowledge) and hey also have BRAF/MEK trial under dr. ribas! he got back to me by email on new year’s day and i couldn’t believe it. yesterday the clinic contacted her and we have an appt. next wednesday at ucla and will be bringing her records. it looks like she will qualify for both. her last scan on the 31st just came out and she has over 30% tumor progression since going through IPI and that is the criteria for one of the studies. she also needs a brain scan and we have appt. a week from today on thursday. they said they will get her started ASAP on the trial we choose assuming she qualifies for both and that the brain scan comes back ok. but, she only needs a brain scan for one.

    i don’t really know which would be a better study and which would most benefit her but at least there are most likely going to be more options than IL2.

    thank you guys for steering me away from IL2 at this point. we are hopeful.

    sylvia

    #58299
    Catherine Poole
    Keymaster

    I’m so happy to read this Sylvia. Dr. Ribas is the best! We are honoring him as our Doctor of the Year! I think if there is concern about how quickly the disease is spreading, then the dual (mek/braf) might be the better choice. But I’m sure the doctor will advise you best. Let us know how things go. The facilities at UCLA are really terrific too!

    #58300
    jamesa
    Participant

    Sylvia,

    I am so happy that Dr. Ribas got back to you so quickly. I agree with Catherine. Dr. Ribas is the BEST of the BEST Melanoma specialist. He deserves Doctor of the Year!!

    You must have a sense of relief the Amy is now in good hands.

    It appears from other posts that anti-pd1 drugs takes some time for the immune sysyem to respond to the drug, so I agree with Catherine the BRAF/MEK study might be the way to go!

    Good luck with Amy’s brain scan & please keep us posted.

    James

    #58301
    zephyr66
    Participant

    Thank you James & Catherine. Is there a place I can get the latest rundown on the PD1 and BRAF/MEK therapies? It’s hard for me to watch the webinars because I live rurally and video doesn’t work well.

    Also, as I find out more and hear more and more peoples’ feedback, I can’t help but be a little upset with Dr. Daniels as I feel he dropped the ball on us. Why would he suggest IL2 as his choice of therapy? He said he was only aware of one PD1 study in LA and said it was Bristol Myers and was a blind study. He never even mentioned BRAF/MEK study. Never said let’s try zelboraf again to get her feeling better and strength back. Why would you suggest something so toxic and debilitating with such a low response rate? And, when I called him yesterday and told him we had an appt. with Dr. Ribas for both studies he was flat. I told him we needed an MRI and he said “it’s ordered and have Amy call and set it up”. It’s impossible to even get THROUGH on the phone to schedule with them and they say they will call back within 48 hours. I had to call our palliative Dr. at the hospital and he got Amy an expedited appt. for the brain scan. I hope it’s not against the ethics to speak this way about a doctor on the forum, but I’m just really starting to wonder… was this good care?

    Sylvia

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