Stage 4 at 30

[jennunicorn21]

Hey, just wanted to introduce myself, I'm Jenn, I have stage 4 melanoma, been on Ipi/Nivo treatment, Nivo maintenance since February this year. Latest scan shows only 1 tumor left and it shrunk in half, so things are going well right now. Definitely put a big pause on my life being diagnosed and having to go through treatment for a year and a half now. Hard watching my friends get married and have children while I have to wait to start my own family until this melanoma crap is over with... which there is no telling how long that will be at this point. Glad this young adult forum was started, we have unique struggles and it's always helpful to have as much support as possible to not feel alone in this.

[KatieC937]

Hi Jenn. It's nice to meet you. My name is Katie. I was diagnosed stage 3 about 2 years ago. I did a year of interferon. Luckily I had no lymphnode involvement - I had 8 removed. The stage 3 was due to local spreading on my skin. I'm 36 years old now. Although my stage and treatment was less, I was in a similar boat. I never had the chance to start a family. Melanoma was the 2nd cancer I faced. I had thyroid cancer a few years before the melanoma diagnosis. After 2 cancers and several different treatments - I didn't know if it would be possible to start a family. But it was... I'm now 10 weeks pregnant. Haven't told many people, it's early, and I'm scared to death due to my medical history. I pray every night I make it through this 9 mos. NED. Melanoma can spread to the baby and I don't think I could ever forgive myself if that happened. But you aren't alone. And I am here to say it is possible. I hope that you eventually get everything you want. You deserve it. Continue to kicks it's butt! Will keep you in my thoughts.

Katie

[jennunicorn21 in reply to KatieC937]

Hi Katie! Thank you for sharing your story. It gives me hope to know that having kids can still be in the cards for me, even if it's a little later than I planned on. Congrats on your pregnancy and I will keep good thoughts for a healthy pregnancy for you.

[wings59 Ambassador]

Hi Jenn,

Thank you for sharing your story. Any cancer diagnosis is devastating, however melanoma can be more challenging to accept due to late metastasis. Your success in treatment is a definitely great news and something to celebrate!

I was diagnosed with Ocular Melanoma June 2015. Ocular Melanoma has no symptoms of metastasis and no proven treatment for metastasis. It's like going from stage 1 to IV overnight. The 5 year survival rate is 50%. I'm thankful to not have metastasis.

I felt like I had to put my life on hold as well due to the diagnosis. I was on a 3 month scan schedule for the first 2 years, I just switched to a 6 month scan schedule. I felt like all I could think about was the next scan and what the results would be. About a year and a half in, February of this year, I was finally able to let go of the cancer and enjoy life.

[jennunicorn21 in reply to wings59]

Wow that is amazing and I hope you can remain NED for many many many years to come. I know how challenging OM is, my heart goes out to you and those dealing with the more rare and hard to treat forms of melanoma. This disease is such an a**hole, but keeping a positive attitude and appreciating every day we're here on Earth is the best thing we can do. I am planning a trip to Mexico in October, it's hard to plan that far ahead, I have a scan in September, but no matter what the scan says, I am going to Mexico and living my life!

[wings59 Ambassador in reply to jennunicorn21]

You've got the right attitude! A lot of people ask "how do you make it through" or they seem dumbfounded that you're still living with cancer.

Well, it sure beats the alternative!

In January of this year I planned a cruise out of Barcelona. Counting down the weeks to the cruise now, instead of the scan!

I had always planned on going on the cruise as well, even if I wasn't happy with the scan results.

I always tell others that there are two things that make the journey tolerable. 1- your own personal outlook. I'm not saying you can't have "bad" days, but if you pity yourself then you're not going to get very far.

2- your support group. You need a strong support group to support you when you have bad days and low thoughts.

[jennunicorn21 in reply to wings59]

100% agree! Enjoy your cruise, sounds like lots of fun!

[blangen09]

Hi Ladies,

I am also in the same boat. I was diagnosed with stage 4 in March last year, just 9 days after my husband and I got married. We had planned to start trying for a family in August but everything is on hold now. I just turned 36 on February 14th and have been NED since October, but my doctor does not recommend getting pregnant for at least a few years. Its VERY hard. I've been watching all my friends get pregnant and/or have babies over the last year and while I am so happy for them, it really hurts. I'm trying to have faith that I will have a family one day, and just be grateful for my health today. I wish you all the best on this journey.

Britta