Melanoma During Pregnancy (Stage IIIB)

Hi Bri,

I am also new to this community and have yet to post anything, even though I’ve been reading through all of the posts and information at a furutive pace over these past few weeks.

I don’t have an specific information to share on what you’re asking but I thought it would be nice to know someone in a similar-ish situation.

I live in Columbus and my onc is Dr. Shah at the James. I was diagnosed Stage IV two weeks after my daughter was born February 13, 2018. The team at OSU mobilized quickly to save my life and remove the one large brain tumor I had. I followed that up with SRS  and a few weeks ago did my first Opdivo infusion to treat the two smal remaining spots in my lungs. 

I’ll let other knowledgeable people chime in with their thoughts since I’m so new to this.

Sending you love, light and wishes for a happy, healthy pregnancy and post-melanoma life!

Amanda

Hi Bri,

Melanoma is never fun, but when combined with all the lovely aspects of bringing another life into yours, it has got to be even more difficult.  I am probably the poster-child for part of the question you pose.  I was diagnosed as IIIB in 2003, after a cutaneous melanoma was found to my right upper back, along with a positive node to my right axilla.  I removed all of that…but there was no treatment for melanoma at that time other than interferon, which I opted not to do as it has been proven to make one quite ill and provides little to no benefit.  In 2007, another primary to my left arm, nodes negative.  No other treatment…as there still was none.  2009…start watching "something" in my lung.  April 2010 a biopsy done via a bronchoscopy determined that it was melanoma and I was now Stage IV.  Scans of the rest of the body were clear, but MRI of the brain showed a met.  Right upper lobe of lung removed. Stereotactic radiation to the brain met.  Tried desperately to find treatment. Ipi was in trials for which I did not qualify because after those procedures, I had no measureable disease.  In October 2010, melanoma to my tonsil.  Surgical removal again.  In December, I finally found a nivo (Opdivo) trial that allowed NED folks in.  I participated in that trial for 2 1/2 years.  I was given nivo every 2 weeks for 6 months, then every 3 months for 2 additional years.  It was not fun.  I had fatigue, rashes, joint pain, wheezing episodes, and mouth ulcers.  Still, I continued to run (not as far or as fast as I had been…but still!!!), work, and take care of my then 10 and 12 year olds, even though I had to travel from Chattanooga to Tampa for my care.  Melanoma and its treatment miseries are not things I would wish on anyone.  BUT…it can be done!!!  I missed only 3 days of work during those years.  My last treatment was in June of 2013.  I remain NED.  And as if the diagnosis and treatment were not bad enough…melanoma doesn't play nice or by any rules.  It tends to play even less well in young women and with pregnancy.  Treatment decisions are very personal.  However, were I in your shoes, I would seek treatment as soon as your new little person has popped out!!!  I would want to make sure I did everything I possibly could to keep me around to see all of his/her amazing smiles and crazy adventures.

Here is a primer re melanoma care that may be helpful: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

There is a great deal of additional info on my blog if you are interested…just use the search bubble in the left upper corner.  Ask more questions as you need, the peeps here are incredibly wise and supportive.  I wish you my best.  celeste

I'm with Celeste… I'd want that treatment to start as soon as my new little life popped into this world. That will most likely mean bottle feeding… but hey… small price to pay. I'm curious why the docs would think that waiting 6 months to treat makes things "strongly diminished". There are many patients whom have had to wait for any kind of systemic treatment post stage III diagnosis, and what of those of us for whom there was no option to begin Keytruda or Opdivo until after its FDA approval? I had brain and lung mets… began Yervoy right away, but because the brain mets wouldn't cut me some slack and stop cropping up at an "uncontrolled" rate, I couldn't get into trials. Sooooooo… wait I did. I wasn't on Keytruda until nearly 18 months after completing a "useless" 4 rounds of Yervoy. I quote "useless", because it did nothing to halt my personal melanoma… not that the drug itself is "useless", as I know a couple of patients who are alive over 5 years out from successful treatment with that drug only. But I digress…… almost 18 months of "waiting" for Keytruda immuno treatment to begin, and it was indeed, very effective for me. A six month wait seems as though it would have little to no effect. I'd have to question their exact concerns and wonder what they're basing this opinion on. 

As for real life side effect experiences with Opdivo or Keytruda…. that is a WIDE OPEN field which would be completely unpredictable for you personally. You may soar through like Wonder Woman and not miss a beat in midnight feedings….. or you may have a pile of issues of your own and rely on a strong support system of friends and family for help with both yourself and baby to be! On the bright side… after baby is born, you'll be able to get a full compliment of scans, which should make the "go or wait" question about the start of Opdivo somewhat more clear.  You're in a pickle of a situation, with no easy answers. Continued strength to you for the ups and downs of the mental ride you've been unwillingly sent upon. 

Hi Bri,

We have very similar stories. You can read mine fully by looking at my profile. Long story short, I was 20 weeks pregnant when diagnosed with metastatic melanoma. It was so tough to know what to do. Here’s what I chose (much was against the advice of my docs at Mayo):

No PET….only MRIs w/o contrast. 

Bi-monthly ultrasounds. 

Induction at 36 weeks. 

Full PET after my son was born. I wasn’t sure if I’d advanced to Stage IV, but I had. Mets = lung, subcutaneous, spine, and all over my liver. 

My doctors put my on traditional chemotherapy 3 weeks after my son was born, which I failed miserably. I switched my care to MD Anderson and went on Ipi/Nivo. I made it through 3/4 rounds. I followed up with 2 years of Opdivo monotheraphy. I have been NED since November 2015. 

My son is 3 and my daughter is now 5. My husband and I will celebrate 10 years together this summer. Last spring I received my MEd. Life is good. 

You can get through this! Please feel free to email me!

[email protected]

Best wishes,

Ashley

P.S. Hope for Two is an amazing resource! Check it out!

I would not regard this as a primary. Your baby needs to not just when it is born, but in 5 years, 10 years, 15 years, 20 years. I would deliver the baby at 35-36 weeks, then start Nivolumab +/- Ipilimumab (or +/- one of the IDO inhibitors) with minimal delay. Out of curiosity, what is your BRAF mutation status? I would request that they send your tissue for Tumor Mutational Burden and PD-L1 expression, so that you have the maximum amount of information to make an informed decision with. Have your baby, but play long-ball and start immunotherapy ASAP. That would be my humble recommendation.