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October 29, 2013 at 2:36 pm #21646worriedmomParticipant
My 11 year old daughter has been diagnosed with Stage III Melanoma. Microscopic melanoma was found in one SLN and the remainder of the lymph nodes in that area have been removed with no futher nodes positive. Her oncologist now wants to start her on interferon, so I am looking for any information on pediatric melanoma and studies associated with its use. We are in the process of scheduling with 2 different hospitals for 2nd opinions, but am finding the information on pediatric melanoma to be very limited.
Any help/suggestions are greatly appreciated!October 29, 2013 at 2:49 pm #62866
The first thing I would ponder is the pathology reports. I would have her slides sent to an expert to make sure she has melanoma. It is rare in children, there can be much discrepancy in pathologists, you need an expert dematopathologist at a teaching institution. Your insurance will cover this and there is plenty of time to sort out any adjuvant therapy.
There is a pediatric clinical trial for Yervoy that I will find out more about for you. The worrisome thing about going ahead with interferon is: we don’t know long term effects on children, but we
do know that is does not prolong overall survival, it may delay recurrence only and that is in a small subset of patients. Please write to me privately, and I can help you with the trials and other areas personally. email@example.com
(here’s the clinical trial info but doubt she would qualify due to age/disease staging:
http://www.bms.com/studyconnect/Pages/ProtocolPage.aspx?govid=CA184-178,NCT01696045November 30, 2013 at 5:31 pm #62867 Hi worriedmom,
Our family is going through this same nightmare with our 8 year old daughter Amelia. I have sent you a direct message with my contact info. I would love to correspond with you so we might share with each other what we have learned, what course of action we are taking and why. I have talked to around 4 pediatric melanoma parents so I might be able to help some. Treatment and results for kids does seem to be different than for adults.
This disease is so rare in kids there are only a handful of us out there, so we need to stick together.
Thanks and good luck to you.
Dave NovakDecember 1, 2013 at 1:16 pm #62868
I think it is great you are reaching out Dave. I hope both of you are only going to experts in the field of pediatric melanoma. Thankfully it is rare, and often the pathology may be reviewed since it can be confused with a SPitz nevus. I would consider doctors such as Albert Yan at Children’s Hospital of Philadelphia or Dr. Dunkle at Sloan Kettering. Of course you want to be very sure on this diagnosis. Dave, what is Amelia doing for treatment? Where is she being seen? We’d like to know more and be of assistance.January 22, 2014 at 9:02 pm #62869 Hi Catherine,
I apologize for the long delay in my response. We took my daughter to MD Anderson under Dr Dennis Hughes. From what I could discover MDA and St Jude’s seem to treat the most pediatric melanomas in the US.
Amelia had a WLE which returned 2 of 8 nodes positive. She then had 68 more nodes removed during a neck dissection which all came back negative. She completed her high dose interferon in December and is presently getting a once a week peg-interferon maintenance shot which is scheduled for 48 weeks.
I have noted the opposition from you and others on here with regard to interferon. While the statistics on the adult population are not convincing enough for many to use it, there seems to be a quite different result with children. I know it is the standard protocol for stage III kids at both MDA and st Jude’s. What I am curious about though is whether there are any major cancer centers that you know of who are not giving Interferon to stage III kids. IE the results of pediatric melanoma treated with interferon are good, but would they be as good under a wait and see approach?
I appreciate your insight.
Dave NovakJanuary 22, 2014 at 11:20 pm #62870
Sorry to hear all that your daughter is going through. I do not know of any other melanoma centers of excellence that are prescribing intron or peg interferon for children or adults for that matter. Of course that is a short list. I don’t know why MDA continues with this as well as biochemo which is also outdated and ineffective.
Is there research showing that children have better overall survival from melanoma when they do this treatment. I would like to see it. For adults there is no improved overall survival statistic.
Have they tested your daughter for the BRAF mutation? that would be good to know since we’ve developed so many new drugs for that and also immunotherapies that don’t have toxic side effects in the past two years. I know you are being as aggressive as possible for your daughter in treatment choice and that is understandable. I wish her and you well as this journey goes on.January 23, 2014 at 1:42 am #62871
Catherine, Please list these centers of excellence who you say are not prescribing interferon to pediatric melanoma patients, because in my research I cannot find any that are NOT. MD Anderson’s PM program has not had a child relapse on this protocol for 9 years now. Not one single child. I am also certain that interferon is the standard protocol at St Jude’s, Duke, Denver Children’s, Chapel Hill Cancer Center, Gunderson Lutheran in WI, Children’s Hospital of Orange County, CA, Etc, etc.
Please tell me who is not doing this protocol because I will contact them and find out how their patients are doing long term. Amelia is only 3 weeks into the maintenance phase and we could certainly stop early if the data indicate that there is no benefit from continuing, however with the majority of children’s cancer centers following this protocol it would have to be pretty compelling evidence.
Thanks for your help.January 23, 2014 at 2:34 am #62872
To answer your second question- Amelia, like most pediatric melanoma patients I’ve come across is braf negative. I don’t know why most kids are but of the dozen or so PMs I have come into contact with only 1 is braf positive.
Here’s the latest info I have been able to find on prognosis study. I can email you the complete journal article if you like.
DaveJanuary 23, 2014 at 3:23 pm #62873
Interesting article, but that is not about the use of interferon or peg interferon. I don’t know of any pediatric studies showing improved overall survival, nor adult studies using peg interferon or interferon. My concern is that the long term side effects don’t match the overall survival. I feel awful when anyone has to go through such rough side effects, especially a child. I do understand the need “to do something” when you are unsure. This article makes it easy to see that frequently kids are misdiagnosed in the first place. I also can see why they would be BRAF negative since it couldn’t be from overexposure to the sun at such a young age. I do hope all goes well for your daughter.January 23, 2014 at 6:18 pm #62874 I agree the article does not mention interferon, but that IS the standard treatment for pediatric melanoma so it stands to reason that the patients in that study received that treatment. Therefore it is useful as a rough guide for prognosis.
I cannot tell you how difficult the decision was for us to make for our own daughter, given what we know of the side effects. However, this decision was made somewhat easier by the knowledge that this is the standard at every hospital I researched.
You can imagine my shock when I read your post that you don’t know of ANY centers that are prescribing interferon to children OR to adults. This goes against everything I have researched, and leaves me with a great deal of concern. I will ask you again if you will tell me the names of these centers so I may contact them and find out for myself what they are giving to kids with stage II and III melanoma and why.
Thanks again for your help.January 23, 2014 at 8:20 pm #62875
I’m not sure if a center will simply give out this information over the phone, that their standard of care for pediatric melanoma is interferon or Peg-interferon, but my list (which I though I had listed) is: Mayo Clinic, Johns Hopkins, Sloan Kettering, and UPENN to name a few. These are by far the top centers in the U.S. Why is she getting Peg-interferon on top of this? Is this the 5 year therapy? I’ve seen that this is even more toxic yet not shown any great overall survival statistics. I will look over that article again. Dr. Coit of Sloan mentioned that the statistics in this article were skewed by the often misdiagnosis of melanoma in children. I find that to be true also. It is a rare disease in children so I can’t imagine there is any robust data on treatment. I do know that IPI has a pediatric trial and might have far better results than interferon for overall survival with less toxicity. Here is the link to that trial: http://www.bms.com/studyconnect/Pages/ProtocolPage.aspx?govid=CA184-178,NCT01696045&zip=19340January 23, 2014 at 10:02 pm #62876 Thanks for that list. I agree they might not give out their standard to anyone who phones them up, but I cannot sit on this information and do nothing. I have to try and find out, for my own sanity. Any Drs. names or e-mail addresses you could provide would also be very appreciated. I’m assuming Dr. Coit of Sloan would be a good one to start with?
She is on PEG because it is a once a week shot compared to alpha-2b which is 3 times a week. You have to remember that this is an 8 year old girl and getting poked with a needle is a big deal. We were told that PEG is ‘virtually’ no different from alpha-2b except 2 less pokes. You disagree? Could you private message me any article you might have which shows peg to be more toxic?
Also the trial you linked is for unresectable melanoma for children 12 – 18. Amelia’s was a primary and therefore resectable and she is 8. I found there to not be many trials for kids under 10. St. Jude’s did have one IPI trial for kids her age but it was also for unresectable tumors.
Having said all this, she’s already done with high dose (and did great). The only question relevant at this juncture of her treatment is ‘is it worth it to do 46 more weeks of PEG interferon or to stop now.’ That is the reason I want to contact these other centers. Perhaps they have protocols whereby they do surgery and then take a wait and see approach. They may not tell me but I’d like to know what the results are for young kids if this ‘wait and see’ methodology does exist.
Thank you again. DaveJanuary 24, 2014 at 4:30 pm #62877
Please email me: firstname.lastname@example.orgI have an article/study by Paul Chapman, who heads the melanoma program at Sloan Kettering for you to read. Please note articles by Kirkwood, Eggermont et al about interferon/peg-interferon will always have a positive slant since they have been promoting its use for several years. Now that even Hepatitis C is not longer finding these drugs useful they are concentrating on melanoma again. But we have better therapies now that are less toxic. The toxicity can remain after discontinuing these drugs too.January 24, 2014 at 7:40 pm #62878katie1Participant Hi Dave,
I just wanted to say that this must be so hard for a parent to go through. My husband is IIIC (resected) and even in adults there aren’t many options. He was given the option of Interferon or a clinical trial (one with Interferon as the control). He is also BRAF negative. I’m not sure what therapies Catherine is referring to that are less toxic options. I observe that many on the lists assume someone is stage IV and there do seem to be more options in that case. It seems you have researched this quite thoroughly and made the best decision you could for your daughter. Obviously, it can’t hurt to talk to as many experts as you can about going forward but you’ve made the best decision with the information and advice you had available.
My husband ended up in the 3mg/kg arm of the Ipi vs Interferon trial for which we are truly thankful. However, Ipilimumab is not without toxicity (and long term side effects) and that is in the adult adjuvant setting. He (and I) would do it again but he has had multiple side effects including hypophysitis which in his case seems to have lead to permanent adrenal insufficiency which put him at risk for adrenal crisis (for which he was hospitalized once) and that is life threatening. We hope in time his body will recover but in the meantime no maintenance Ipilimumab. In young pediatric patients, I’m assuming they will be hesitant to use Ipilimumab in the adjuvant setting until they see how older children do with the drug.
KateJanuary 24, 2014 at 10:07 pm #62879
I guess with IPI at least you have seen the scientific data that shows it has a 20 percent response rate and some very durable responses. This is not true with interferon. Studies found it to extend the time for recurrence by 1 year in 8% of the population. IPI can have side effects for some that are tough, but many have a fairly easy time of it. I understand about the injections and feel sad that your daughter is going through them. My 18 month old grandson has a rare disorder that requires weekly injections of methotrexate. I helped my daughter find a better injector that was mentioned on a diabetes children’s site, it is called injection ease, or something like that. It has made life a bit easier. The choices are lousy for stage 3, no doubt about it.
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