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July 14, 2012 at 4:37 am #20474Jason43Participant
Hello all, my name is Jason. I am 34 years old and my wife and I have a 5 month old little girl. I found out on May 3rd of this year 2012 that the little black mole that came up on my right ear was in fact melanoma. Once they removed it and said it was a level 4 they said a bigger surgery called a wedge would need to be done along with the sentinel node removal. This surgery was done on the 25th of May. The ear was almost completely removed but was reconstructed and the margins come back clear, but the lymph node came back positive. They told me this moved me to a stage IIIA Melanoma. They scheduled a PET scan for me after this as well as a brain MRI, I did both of these and all came back good except they said the PET scan showed it in my Parotid gland which is a salivary gland. I then had to have another surgery done called a right radical neck dissection, which they removed 28 lymph nodes from my neck, the main neck muscle on the right side of my neck, and some tissue all around the nodes as well as the Parotid gland. This surgery was just done on July 3rd. Since then we have found that everything has come back negative including the Parotid gland that showed positive on the PET scan, the power of prayer is an amazing thing.
Now they are telling me though I need to have some radiation and some chemotherapy to ensure there’s no more in my body and to ensure it won’t return. I met with the radiology doctor and he wants to do 5 treatments on my neck and ear area once I’ve recovered from this neck surgery, 2 one week, 2 the next week and 1 the following week after that. As far as the chemo all there offering me is 1 year of interferon which they say is really, really hard to handle or 5 years of sylatron, which they tell me is much easier on the body.
Here’s my question and my concerns:
My wife and I had a plan before all this madness happened to have 2 children, we have a 5 month old beautiful little girl but we really wanted 2 so our plan was in the next year or so to start trying again for our 2nd child but we won’t be able to if I’m on 5 years of Sylatron. This makes me want to try and do the best I can and suffer through the “what I’ve heard is impossible” 1 year of interferon. But my doctor is really leaning me toward the Sylatron, and I’m just not sure what to do, or what the right decision is. I don’t even know if I’m even thinking right anymore by still wanting another child since Melanoma is a part of me now, and we wouldn’t want to bring another child in the world if I wasn’t gonna be able to be around to help raise it. Any Advice would be appreciated, we didn’t expect any of this like I know no one does, but since May it seems its just destroyed my life and my dreams.
Also for those on interferon or sylatron, how bad is it really. I am a Plumber. I have been for 15 years, its all I’ve ever done. I’ve been told if I did the 1 year of interferon work would be out of the question for that year, but what about the Sylatron? Will it make me where I can’t work with it either? Also I’ve been told by some my plumbing days could be over for good, due to the germs I’m forced to be around in this line of work, and my immune system won’t be prepared for this any longer, is this true too? I’m sorry for such a long post it just seems I have so many questions and so much left I want to do with my wife and my little girl and I’m afraid life as I knew it is gone and may never be the same. Any information or advice would be appreciated and Thank You so much in advance.July 14, 2012 at 11:20 am #55459
I’m sorry to hear all that you have been through. Where are you going for treatment? Interferon/and the new 5 year Peg Interferon (Sylatron) have not been proven to extend overall survival (according to the American Society of Clinical Oncology” the largest oncology association in the world. Overall survival is what we all are looking for. The 5 year Sylatron is said to be more toxic in fact than the one year, so that is incorrect information as far as I have seen. Immunotherapy, such as Yervoy would be a much better option and I believe that is an option for you. It was just approved last year. Again, a center of melanoma excellence would be the place to get an opinion. I would ask your doctor about Yervoy. It is currently in clinical trial up against interferon for stage 3.
Any medication may affect your sperm/DNA etc. so another option is to watch and wait and aggressively approach with surgery/radiation any recurring disease. Or you can sperm bank for later inception. I would be happy to discuss on our helpline or help you find another opinion.
I’m sorry you have to go on this journey, but we are here to help you.July 14, 2012 at 2:43 pm #55460Jason43Participant
I’m in Wilmington, North Carolina. They have told me I’d have to be a stage IIIB to be eligible for the Yervoy, and that would be a clinical trial they’re doing now and that’s the only way it being offered. For a Stage IIIA which is what I am they said there’s only Interferon and the Sylatron, which for some reason my doctor is really wanting me to do the Sylatron. They’ve told me I can expect with which ever I choose to do, I can expect it to help my chances by 3% to 5% and at my age they said they know that’s not much but I should give myself every chance, no matter how small.
JasonJuly 14, 2012 at 3:11 pm #55461
I would highly recommend a melanoma specialist. The cost for the 5 year treatment is huge, although your insurance would cover it possibly? There is a financial incentive unfortunately to some therapies to both doctors and industry. There hasn’t been any scientific validation for this five year therapy and in fact, failed the first time they tried to get it through the FDA. The patient is not always at the center of their concern. Some of the best centers include Johns Hopkins, UPENN, Sloan Kettering, Sarah Cannon, and we do have a list of a few in North Carolina. I would happy to speak with you on our helpline to discuss nearby centers and therapy options. Our helpline is tollfree: 866-463-6663. We always return calls if we don’t answer them right away.July 14, 2012 at 10:07 pm #55462judgar2012Participant My husband was on interferon for 1 year. He made it through. Yes it was rough. He works for G.M. and he went to work everyday. some days I do not know how he did it but he did. He is glad he chose interferon. He has nodular melanoma. His was 7.5mm deep. It was in 1 node. He felt if he didn’t try interferon he wasn’t going to have a chance. In fact when he came off of it after the year he was scared. He said it was like he felt safe on it.
But this is up to you what you feel you need to do. I just wanted you to see a better side of interferon. We know people do not like this at all. He made it through and is doing fine now. hope this helps you. and question just ask.July 15, 2012 at 12:29 am #55463washoegalParticipant
I would certainly suggest you at least speak with another Melanoma specialist before starting either one of those drugs. Both would likely be a financial burden on you and as Catherine explained they really have very limited benefit. If you do decide to go the route of either one, have your sperm frozen first. Good luck with whatever you decide.
P.S. I am stage 3a; 2 years plus cancer free and chose to just “wait and watch”.July 31, 2012 at 7:39 pm #55464jimjoebParticipant
Catherine, does this latest study change anything for folks like Jason?
Jason, I’m so sorry about your diagnosis. I’m also IIIa but only had the two surgeries for the original WLE and SNLB and the lymph removal. I declined interferon over a year ago, syralon was not offered to me by my cancer centre here in Ottawa, Canada. I’m proud to say that I am over one year NED.February 13, 2013 at 11:57 pm #55465andreab12Participant
Hello. My name is Andrea. You story sounds so incredibly similar to my husbands and I was wondering what treatment you decided going with and if you would share your experience. My husband was just diagnosed in the past few weeks with stage III. He is 32 years old and we have a little girl who just turned 3 years old. We also want more children and right now we are both feeling a lot like you described. The weight of the world has come crashing down. Our oncologist is trying to get us on a clinical trial with Yervoy (if we can get it), but we have also discussed the Sylatron. I am concerned about my husband being on the Sylatron for 5 years and praying we get Yervoy. Also, did you discuss wanting to have more children with your doctor? I wish you all the best. Prayers to you and your family. Thanks!
AndreaFebruary 14, 2013 at 1:01 am #55466
There are a few other therapies for stage III. One is MageA3, and another is a vaccine trial. A location I know currently enrolling is University of Virginia. Otherwise, we had a list here I will repost. I am not convinced these old therapies of intron and now the new 5 year version of an old therapy, will be promising. The last study showed the potential of 8% of those taking these drugs as extending their recurrence time by one year. Of course, a year or more may be lost to bad side effects. So that is a wash. The bottom line is neither Sylatron nor interferon for one year increase overall survival or prevent recurrence and that is what we are seeking. The new therapies, Yervoy, PD1, Zelboraf and the BRAf/MEK combos are all going to be in adjuvant settings soon. These will make a difference I’m certain! I will repost that other list. DO NOT consider either interferon regimen if you have any history of depression. This can have a long lasting effect.February 14, 2013 at 1:04 am #55467 Here is a good list of stage III trials: http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=6204939&vers=2February 14, 2013 at 4:05 am #55468andreab12Participant Thank you so much Catherine for all of the information. We are very stressed about the chance that we might not get the Yervoy and then the only option being Interferon. My husband and I both feel like we want to be doing something as he is so young with a future ahead of him, but we feel like all we are hearing is that the Interferon really doesn’t work. And now the possibility of him being on it for 5 years sounds daunting. I feel like we are on the brink of a huge breakthrough in melanoma treatments but unfortunatly none are available off trial yet. Very frustrating. Thank you again. I know that this is in God’s hands and we are trusting that he will see us through. Thanks!February 14, 2013 at 7:51 pm #55469lunchladyParticipant My husband was diagnosed stage III in April 2010 and did one month of the interferon. It kicked his butt! He lost 30 lbs and was in bed most of the time for the last 2 weeks of treatment. Everyone is different though. He has since had 4 local recurrences. If he had it to do over, he is not sure he would have done the interferon.
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