KellyH

Hi mike!!!!
I’m so glad to see you back!! I had taken a little break from the board but checked back in to see how everyone was doing and was so glad to see you posting!!!!
It is great you have a plan and a plAn you are comfortable with!!!
I will tell you my son sees an oncologist locally that has experience with melanoma…..but it is a head and neck oncology clinic….his melanoma was on his scalp and we went there to see the best surgeon locally for his initial surgeries. That’s how we ended up there. Because they were not true melanoma speciAlists or a true melanoma clinic, I had plenty of reservations staying there for his care. He was only 17 at the time, they did not specialize in pediatric patients, and I was petrified of making a poor choice. The PA we see for the most part at the oncology clinic is amazing. I know I could never have survived any of this without him. He took my son on as if he was his own child. He made us appointments for second opinions in Boston with Dr. Flaherty, who has experience with pediatric melanoma. Dr. Flaherty was also amazing and the 2 of them correspond about my sons care regularly and because of that we are lucky enough to stay here in Buffalo and not make frequent trips to Boston…in fact we have been lucky enough to never need to go back to Boston. Sometimes the doctors you are most comfortable with are the best choice and the best option. They will get you into the treatments you need to fight off this
uninvited guest in our lives!!!
I am happy we stayed where we did. My son is in the best hands possible for him right now. And I think you will find you are too!!!
I wish you all the best as you continue on in your fight!!! I know this is a lifelong battle for so many of us and we will win the war!!!! I know it!!!
Keep us updated!!!!
Stay strong!!

Kelly 🙂

Ias a melanoma mom myself, think of Kerri and Jake often. I hope we hear from them soon!!

Kelly 🙂

Welcome back Mike!!!! We definitely missed you!!!!

There is strength in numbers, whether it be a support group, or this forum…it makes the journey a little more bearable somedays to just vent to someone who really gets it!!!

So glad you are back!!!

Kelly 🙂

Nick you are an inspiration. Your strength, courage and determination is a lesson to us all!!! 

Praying for you and your family as you continue your fight!!! 

Kelly 

Get it checked!!!!  My son was diagnosed at age 17 with Stage 3 melanoma from a mole that looked like nothing to everyone that looked at it.  We were completely shocked when the pathology came back melanoma.  Better safe than sorry is what I say. 

Good luck!!! 

Kelly 

Beautiful Celeste!!!! 

Thank you for sharing!!!! 

Kelly 🙂

Hi Raco. 

My son was also Stage 3…positive sentinel node, no other positive nodes. He will be finishing his year of Opdivo treatment the end of May, only 3 more to go!!! I agree it will be very weird to not be going for treatment every other Thursday….bittersweet. We saw the PA with every treatment, it was a little sense of comfort for me knowing someone from his medical team was looking at him every 2 weeks….

On diagnosis my son had a PET scan. And then halfway through his treatments he had CT scans of his brain, his neck, and his chest, all negative.  His primary tumor was on his scalp. We are scheduled for the same scans following treatment. We just discussed a follow up plan at last treatment. Looks like we will be doing CT scans every 4 months for the first year.  I have read people who went every 3 months and I have read people have done every 6 months. My son is only 18 and the doctors are concerned about the radiation exposure every 3 months, so we are thinking about compromising on every 4 months…3 scans instead of  only 2 with the every 6 month plan or 4 with the every 3 month plan for  the first year. 

I think that every doctor has their preference…but I have read a lot of  folks say their follow up is just CT scans. My son prefers the CT scans as well, less preparation but unfortunately you do what you gotta do to keep this monster away!!! 

Good luck to you!!!  Best wishes always!! 

Kelly 🙂 

 

Hi Shannon!!! 

My son was 3b when diagnosed last year in February…he is 3 treatments away from completing his year of adjuvant therapy of Opdivo.  

My son has had very little in the way of side effects from the Opdivo. He had stomach cramps intermittently, which he said he hasn’t had any in the last 8 weeks or so. But the cramps were nothing that kept him from doing his normal activity. 

He does say he is more tired for a few days after infusion day ..but he is also 18 years old so some of it is teenage tired, maybe not necessarily treatment tired. 

I hope this helps!!! Good luck!!! 

Kelly 🙂 

 

I think that’s a great idea Celeste!!!! I would definitely be there!!!! Would love to meet the people that have helped me through some of my toughest days!!!!!  

Kelly 

Hope he is well…been wondering about him as well. 

I hope we hear from him soon!!!!!

Kelly 

I also have Blue Cross and Blue Shield…and my son’s Nivo treatments were approved 6 months at a time. He completes his one year of adjuvant treatment this May. 

I think the doctors should be able to work it out with the insurance company based on what is the standard of care for Stage 3c. 

Good luck and best wishes for a successful course of treatment!!!! 

Kelly 🙂 

You know this disease just sucks….you get up one morning healthy and the very next thing you know you are told you have melanoma and your whole world is turned upside down….I wish I had some great advice for you…but Celeste is the one with the great advice and the immense knowledge,  not me.  All I know is there is strength in numbers and that everyone on here is praying for you and sending you all the love and support possible. Hang in there and keep fighting!!! And know you are not alone!!!! 

Kelly 

Hi Amanda!!! 

When my son was diagnosed last year I was so scared and so overwhelmed….I found this forum and little by little I got up enough nerve to read everyone’s stories and to find the hope and knowledge I needed to make the right decisions for my son. 

Someone at work told me…”you are the strongest person I know”  and my response was “I wasn’t given a choice”…..this was an uninvited adventure in our lives but we are taking one day at a time and we are living our new “normal” life. 

I am like you so thankful for each and every day. This changed our lives forever but I think I now appreciate the little things that much more. 

I am happy to hear that you are feeling well and enjoying your life and your baby girl!!! !  That’s the best any of us can hope for with or without a melanoma diagnosis!!!!!! 

Best wishes always!!! 

Kelly 🙂 

 

Hi Mike!!! 

I replied to your previous post as well…my son is the patient and to answer your question would we do it again???  

Yes!!! A thousand times yes!!!! 

I felt doing something was better than doing nothing and he has done extremely well with treatments!!!!! Very little side effects. 

I researched and researched and used this forum to answer questions I had from actual patients…and I do not regret my decision at all. My son is NED and I pray every day he stays that way!!!! 

Good luck to you!!! 

Kelly 🙂 

Hi Mike!!! 

My son was Stage 3 when he was diagnosed last February…he started a years treatment with Opdivo last May…we have 6 more treatments to go and I am actually more nervous for him to stop!!!  He has had very little if any side effects, a little tired I think after treatments but he is a teenager so sometimes it’s hard to tell the difference!!! 

He was considered NED after surgery and half way through his treatment, his 6 months scans remained clear. So still NED!!! 

I think it is a great option as adjuvant therapy…better to do something than nothing is what I thought when we made the decision to move forward with the treatments!!!! Good luck with your treatments!!! 

Kelly 🙂