Long overdue introduction

Posted By
5/16/2018 12:35am
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Replies: 6

Hi everyone!

Ive been reading here on a regular basis for almost a year now and I guess I finally feel ready to jump in and join this amazing community. I’ve learned so much from all of you since my diagnosis and I’ll be forever grateful to you all. 

I’m a 44 yr old female who was diagnosed with stage 4 metastatic melanoma (unknown primary) one year ago. Initially I thought I was coming down with pneumonia and went to my local urgent care office. Rather quickly I was rushed by ambulance to a major hospital where they thought I was either having a heart attack or had a collapsed lung. Soon after it was discovered I had dozens of pulmonary embolisms. After a lot of tests being run, it was determined that I probably had cancer and I had surgery on a swollen lymph node in my groin (I thought the swollen lymph node was an exercise injury). Anyway, a week later I was diagnosed with melanoma (small met in my groin lymph node and a larger met (3cm) in my pelvis) and of course my life hasn’t been the same since. 

I’m BRAF positive and started with Taf/Mek. I was on that treatment for 8 months before my scan showed a tiny uptick in cancer growth near my groin lymph nodes. Since I’m on a clinical trial it dictated that I make the switch to ipi/nivo at that point (the trial is to determine whether it is better to start w/ taf/mek or ipi/nivo and the computer randomization chose taf/mek for me first).  

So, now I’m on the ipi/nivo portion of the trial and I just finished my fourth combo infusion one week ago  I have had some rough side effects (folliculitis- all of my hair fell out, dermatitis, dry mouth), but my last does was the real kicker.  I developed a severe headache last Thursday and this mornings MRI confirmed our suspicions that I now have Hypophystisis (inflamed and enlarged pituitary gland).  I started a round of prednisone this morning (which immediately took away the headache!) but also will delay my getting to the just nivo portion of my treatment.  Fortunately for me I have felt pretty good during this entire year and have been able to fold the treatments and side effects into my daily life with a certain amount of ease.  I live in the Portland Or area and am receiving amazing care. (My mel specialist is Dr Brendan Curti, plus I see Dr Nicholas Barber for regular appointments)  

Once again, thank you all so much for your encouragement and wisdom. It truly is a lifeline to me and, I’m sure, many others.







Anonymous - (5/16/2018 - 7:01am)

Hi Stephanie

Thank you for sharing your story, it all sounds a bit of a nightmare but you sound like a strong person who is taking it all in their stride. Melanoma is such a sneaky disease, the most important thing is getting that diagnosis and jumping into treatment as you have done. I too have found this board to be such a supportive and informative place for people at all stages - and none (what I call the 'worried well' - of this disease. I wish you all the best!

Hi Stephanie, welcome to the little mouse club, I thought I would get that in before Celeste tries to sell you on that Rattie group she runs!!!! Your trial is super important to answering a big question in melanoma, that of starting with targeted thereapy or Immunotherapy. Here is hoping that you don't have to wait to long to start Nivo, and that the scans start showing improvement. Best Wishes!!!Ed

Bubbles - (5/16/2018 - 10:34am)

Have to echo (most) of Ed's words, Stephanie!  Every bit we learn makes life better (and longer) for all of us!!  Thanks for sharing and for being part of those answers.  Ratties Rock!!!  (But, you can be a mouse like Ed if you wish!  They are awesome too!!)  Have a great day.  Celeste

BillB - (5/16/2018 - 12:06pm)

Hi Stephanie, thanks for the update and good luck. Sorry to hear of the side effects and hopefully you can get back to treatment soon. Please keep us posted as many have vested interest in the everyone’s progress but especially the progress in the  mice/rats.


KAF - (5/16/2018 - 12:25pm)

HI Stephanie

Same story for me (although I only did IPI/NIVO and only made it through 3 cycles before hypophisitis.

I also lost my hair and it came back in all white - pure white - but i found an amazing colorist who has added blonde lowlights so now I'm a blonde!

I was on steroids until i got down to 8mg and then started seeing double and diagnosed with hypophisitis again.  Took 3 months until I was able to start on Nivo.  I've now been on Nivo almost 17 months and I'm NED.

Have you had scans done since your hypophisitis?

My doctor told me that my hair may come back in totally white which I’m ok w as long as it comes back. I’m a natural blond so it won’t be a huge shift for me. As far as scans go I have one next week. Fingers crossed that it will be good news. I’m feeling very optimistic about it. 


Can an I ask, did you fully get off prednisone before starting back on nivo, or just a very low dose?