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July 4, 2012 at 12:56 pm #20439
Greetings from Ireland!
I have been reading these forums for a while. Some of the stories I find unbelievably sad and others give so much inspiration and above all hope. My husband was diagnosed with Stage 3 last March 2011. I haven’t exactly had a sheltered life up to this point but this diagnosis just left me completely shattered. I still find it so traumatic and have no one I can talk to. He had a mole removed from his left cheek which came back as a Melanoma. Then in April they did a wider excision on the left side of his face for which he needed skin grafts. Tumor was 3.1mm Breslow depth with ulceration. At this time they were happy that all the melanoma had been removed from the site but the SNB showed that 2 out of 5 lymph nodes were positive.
Back in again during May 2011 to have a full clearance on the left side – 36 nodes in total – all came back clear. His CT scan also clear. They reckon they “caught it in time”.
Here in Ireland there are no real specialists in Skin Cancer (or none that we have found). There is plenty of screening available but very little information and support if you find yourself newly diagnosed. He was referred to a standard Oncologist who suggested Interferon. We have 2 children not even in school yet so if there was even a chance that a drug would improve his chances by 2% then my husband would have done it and so he did and has just completed 12 months of Interferon. He has been fantastic the whole way through, I couldn’t have done it!
He has been discharged now to out-patient status and will see the doctor every couple of months. His recent CT showed all clear BUT (and I wish to God there wasn’t a but) one doctor thought his glands on the other side looked a bit swollen on the neck and under-arm. His Oncologist disagreed and said they look fine, plus glands can be a little swollen for a number of reasons (besides cancer) and they will keep a close eye on him. He’s happy enough with this. I am not. I have no idea how to watch out for the signs that something is wrong. He won’t have another scan for a year and how will they tell from blood tests and a feel of his neck for the next 12 months if any of the nodes are infected? I’m probably over –reacting but can anyone offer advice on how to even move on after this sort of thing. I’m finding the fear overwhelming while everyone around us is celebrating his NED. I am truly grateful that I have him as he is right now and I thank God and everyone else I can think of each day as I know his situation is ok right now but is there anything I can be doing to keep any eye on this?
Sorry for the long post!
EllieJuly 4, 2012 at 2:22 pm #55288
I can understand your fear and anxiety about this situation. Since they have interferon there is there any chance your husband could get on a trial of Yervoy? I would inquire. I believe he could in England. Otherwise it is a matter of watch and wait. I would just make sure he is paying attention to anything out of the ordinary and bring it to the doctor’s attention when he feels it. Try to live in the moment, for today and don’t concentrate on the future too far, that can help alleviate some of the anxiety. Let us know how things are going..July 4, 2012 at 7:01 pm #55289washoegalParticipant Your fears are understandable, especially with your children. I think it is always harder on the spouse. My tumor was 3.7mm deep and I also had 2 out of 5 lymph nodes positive for cancer. I chose not to do Interferon. Good news is that I am still here and well after 2 plus years. I hope that this gives gives you a little bit of peace. I think we all worry about any changes: new moles, a swollen lymph node, etc. But over time you learn to watch for a few weeks and if you still don’t like whatever it is, then you go to the doctor.
MaryJuly 5, 2012 at 7:35 pm #55290
I did find out that Yervoy is available in Ireland. I would ask your doctor about possibly getting access to that.July 6, 2012 at 8:51 am #55291 Thank you Catherine and Mary for your replies.
It is great to hear that you are still in the clear 2 years later Mary and I hope your good health continues.
I did not know Yervoy was available here in Ireland and I have just seen now that it was only approved in May (we were abroad so I did not see the news!). They say it is not for “general” use through our National Health System (the HSE) as it is too expensive. Around 85k for the 4 dose treatment. However 60 patients have been approved for it just recently. He did mention to his doc in the past about a trial of ipilimumab should he be facing round 2 with this, but his doc said “right now you’re definitely not a candidate and I hope we will never even have to have that conversation”.
Now I know it will be my only line of enquiry should the need arise.
I will keep reading these forums, they are without a doubt the best source of information available to us over here. Thank you Catherine!
Ellie RJuly 7, 2012 at 10:41 pm #55292Shirley ZParticipant
Just wanted to offer some encouragement from a stage IIIC survivor. I will hit my 6yr mark from diagnosis this month. My prognosis was not good. Almost 12 mm primary, matted palpable cluster in the groin, vascular invasion. I had surgery to remove my big toe and a groin LND. Had one recur in the shin at my 3 yr mark. That was also surgically removed.
Its not easy, especially in early diagnosis and with a young family. Its best to just take one day at a time. Its so overwhelming if you think too far ahead.
I’m living proof that the odds can be beat.
Stay aware and keep up with all appointments and skin checks. Vigilence is key in this disease.
Best of Luck to you!
Shirley ZJuly 8, 2012 at 6:04 am #55293
Yervoy and Ipi are the same thing. I have no idea why your doctor was discouraging about its use. It is far more effective than interferon and is in trial for stage III disease. It is an immunotherapy. I realize it may be difficult and costly right now for you to get. The restrictions may ease up as time goes by and we have other agents in the works now too. Keep in touch. As you can see we have some special people here with positive stories to share.July 11, 2012 at 10:29 am #55294 Thanks Shirley Z for your reply. It is so great to hear good stories. You are right about not thinking too far ahead. I’m old and wise enough to know that we have no idea what the future holds (regardless of how we imagine it, good or bad) but yet somedays my head goes to places that are unbearable. It’s uplifting to read stories like yours. I hope your good health continues a long long way into the future.
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