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Hang in there, it is overwhelming, I can certainly understand. My melanoma returned 12 years after my WLE and I have little ones at home as well. It is terrifying!

It sounds like you are under the care of a good team and getting into a trial at stage three is a great idea!

The best advice I can give you is to just keep looking forward, whatever happened to get you here happened and nothing can change that.

You can do this!

I am sorry you had to join this group but everyone seems very compassionate and offer lots of good advice.

First I wonder are you seeing a melanoma specialist as they have the most up to date information on things concerning melanoma.  Second if you can post a copy of the pathology report it would help us give you better information.  I would get copies of all pathology reports, surgery reports, scans and keep a copy in a file just for you in case you ever need to change physicians you would have the information readily available to you.

Also many people on here have been through many treatments and can help and as you will see many have lived for many years with this.  Be vigilant and check your skin and moles for changes.  I think most panic when they hear the C word and think this is the end.

My husband started at Stage 3B and after 2 years and 10 months advanced to Stage IV.  He started a clinical trial and became NED (no evidence of disease) after.  He became NED after 15 months and has just had his 5th Anniversary of NED.  He became Stage IV when their were not many choices of medications to use.

Try not to stress out to much as stress is not good.  I know it is hard especially with a young family.  Think positive.  The best of luck to you.

Judy (loving wife of Gene – Stage IV Clinical Trial of IPI 10 mg/kg and GMCSF and NED for 5 years)

P.S. If you would like to read more about his journey check out his profile.

Gosh, what an odd presentation of melanoma… even your doctors could not pick this, so there's really no way you could have done anything sooner… it's a shame it's taken you so long to get into the treatment stream as this could have meant the difference between a thin and a thick melanoma, but I don't see what you could have done differently. It's just one of those sucky unfortunate things. The main thing is you are now in pretty gold-standard care for stage 3. As someone else said, more details of your path report would be needed e.g. what type of melanoma was it? It doesn't sound like superficial spreading melanoma, more like nodular or amelanotic. Anyway, that's neither here nor there, as a person/patient/parent you have done your very best to get this thing checked out and finally, luckily, you are in treatment. And the treatment sounds pretty great. Now onto the real story here-  the often overlooked mental aspect of melanoma, with all its uncertainty and hope and nightmare stories and miracle stories. Pardon my French, but melanoma is a total mind f*ck, perhaps even more so for parents of young kids. It's time to get on the phone to your local cancer support line and talk to them about anxiety – they can't help you with the melanoma side – you are in the best care for that – but the mental side is often ignored by the medical fraternity and in many ways its the harder battle. The battle to learn to live with uncertainty and defend against anxiety. In Australia this is the Cancer Council, I'm sure there is a similar local service. Their counsellors can give you some support in the mental health area – believe me, it's just as important as the physical side. I think this is the case with all types of cancer but it's not something that your mainstream oncologists etc can deal with or want to deal with. This board is a great start – keep reaching out and go into what I would call 'extreme self care' mode – really look after your precious self at this difficult time. That's the best thing for you, and your family.

Hi Tania,

I'm sorry you've had to start down this road.  It took me a while to come to terms with the fact that I had been diagnosed.  This can be an emotional roller coaster.  It takes time to process what's going on and sometimes things move so quickly that it seems hard to keep up.  Take each day as it comes and try not to get completely stressed out.  Don't focus on the past or feel guilty.  Use your time to focus on the now.  I won't say welcome to you but rather best wishes.  This board is so wonderful.  The support is beyond amazing.

Best wishes,

Jennifer

Hi, 

Sorry you are in this situation, but welcome. Your presentation sounds similar to mine. (What I thought was a bug bite that never went away, busy with teens and parents with Alzheimer's and I forgot about it, primary MD said it was a fibroma and nothing to be concerned about… got tired of looking at it and decided to have it removed for cosmetic reasons, Got the call a few days after removal from derm, then WLE – depth was 8mm, mitotic rate of 10, but lymph nodes clear, Onc recommended interferon, I declined .. now on aggressive watch and wait, so far at 1year and and all clear) 

No guilt, the amelanotic Mel is just tricky and rare and fools us and our docs. Now we are watching and being watched, and if it comes back, we will get treatment right away. And lots of people are getting good responses with new meds coming out. Don't get shook by stats & stuff you read online- it is very out of date. 

I saw an "integrative oncologist" who went over some dietary, lifestyle, stress reduction suggestions that helped me feel less panicked and like I am doing what I can for now. 

I imagine you will get great care at Dana Farber. Love those babies, hope for the best, keep your appointments,  and live it up. Life is really uncertain for all of us but we just don't think about it. 

Blessings, 

Joyce

First big hugs to you. Praying you get on the pembro arm of the trial. It is an emotional rollercoaster. I cried through my entire first infusion. (I don't suggest you do this. it isn't helpful) Just glad you are getting treated now. Focus on little things at a time. The bad thoughts sneak in all the time. When I have something I really want to do I just think "okay God, can you take this for 10min. because I really want to focus on working in the garden and not my health!" And there are times I can actually let it go and think about other things.

Whatever you do, don't give up. You have lots of things to fight for, fight hard! Put all that "anxiety" into determination!

Hi Tania,

It does feel like a bad dream at first.  You should have no guilt – you did have it looked at and it presented in an odd way.  Now that you've been diagnosed, it's time to look at your options and select the treatment plan that best fits you, your pathology, family, etc.  You are receiving care at a GREAT institution which gives you the best shot at finding the right therapy delivered by an extremely competent staff.  

Take it step ata time and keep us updated.  Good luck and hang in there!