RHG77

I had a similar reaction to the combo. I had three doses of ipi/nivo. After the first, I experienced high fevers with night sweats. I ended up in the hospital because my fevers came on quickly and they wanted to test me for other infections. It turned out my thyroid basically “exploded” and became non-functional. (My endocrinologist believes it actually may have been a rare post-partum reaction, as my baby was less than 3 months old at the time, but was probably exasperated by the treatment.)  Not a big deal to be on Synthroid. My mom and sister are on it, so I may have been heading in the direction anyway. 

After my second infusion, I had very few side effects, which was a nice reprieve.  After the third, I went back to fevers, pains, chills, night sweats for almost three weeks.  I was worried they would not subside in time for my planned surgery to remove my lymph nodes.  But it did, and the good news was the largest lymph node was essentially free of cancer when it was removed.  That was almost two years ago, and as of my last scans, I am still NED.  

Hang in there.  It is rough.  I literally laid on the sofa, couldn’t really read or watch TV much, let alone take care of a baby, but it did get better.  

What you do depends on your personal risk tolerance.  I will share some of my story and my family's decision. When my husband and I decided to have children, we initially thought we'd have two. At the time, I was 6+ years post-Stage 1 melanoma, WLE and SLNB clear.  I was an early stage at diagnosis and being years earlier, melanoma didn't even cross my mind. My dermatologist, who I was seeing every six months, mentioned skin changes during pregnancy, so I watched my skin but didn't really consider that my prior cancer could spread. My child was born in May 2016, over 7 years since diagnosis. There were some complications, but long story short, I found out the day after that lymph node was very enlarged and needed to be biopsied. It was very deep and could not be felt superficially. It wouldn't have been discovered but for having a CT scan. I was officially diagnosed with Stage 3c two months later. No other primary was found, so we assume it was a metastases of my 2009 tumor. I'm not sure if the pregnancy and the metastasis are related, but it's too much of a coincidence for me to ignore. My good friend, who is an oncologist, said that studies are inconclusive so he would not have advised against pregnancy necessarily.

I started immunotherapy when my baby was less than three months old. I had some negative reactions, so we relocated for a few months to be closer to my oncologist at MD Anderson.  It was smoother than I expected but still rough to do with an infant. It's still difficult traveling back every 3 months for scans because you can't be within 3 feet of the baby for 8-24 hours after the scans. I've had a few scares of progressing further, but so far am doing well. My husband and I decided against the risk of another pregnancy. If we decide to expand our family, we will look into adopting. 

My situation is rare, and I don't want to scare you by it. I met a woman in Houston who was Stage 2 at diagnosis and went on to have two children without any issues. So you never know … just not worth the risk for us. 

MD Anderson has fertility oncologists. You might see if your local doctor has one who can give you more statistics and information to consider before you take the next step. I'm also happy to provide more information if you need anything. Good luck with your journey. 

Oops, I meant today. 

P.S.  Good luck tomorrow!

You must have caught Dr. Diab on an off day. He is my oncologist. While he seems rushed at times, he has always been caring and taken the time to answer all our questions no matter how long it took. One of my main concerns was what happens if ipi/nivo fails. He assured me that he had plans B, C, D, and E in his pocket but did not want to go into details for my sake, which frustrated me, but when we thought we needed it, he pulled out plan B in an instant and was very receptive to my getting a second opinions from MSK (who agreed with him).  Plus, he was all over the news for walking three miles in the flood to meet with patients. When I mentioned that, he was very humble about it.  I’m not doubting your experience, but I wanted to comment that doctors are human, and have bad days, and how I find it interesting that certain doctors are better fits for certain patients.  For example, Dr. Wong filled in a few times for Diab, and we did not like him, whereas some people on these boards love him. 

Sorry for the late reply. My fevers got to around 103 every day. I’m sure your nurse probably told you this, but just in case – you might want to alternate between Tylenol and Motrin if you are taking it around the clock. When I stuck to Tylenol only to control the fevers, my liver levels got out of whack. My doctors were worried about them getting too high for my next infusion, so I added in Motrin. Tylenol worked a lot better for me, but I had to balance fevers against liver. Liver levels stayed in normal-ish range for the rest of my treatments, so alternating worked. Hope you are getting some relief. 

This message is for Anne. For some reason, the site won’t let me reply to Anne, so I’m replying to Tex, but the message is for her. Like Tex, I’m an MDA patient but live hours away, so I don’t know doctors outside of MDA. But I did want to let you know that MDA has dermatologists in addition to oncologists. I see one there named Dr. Huen and would recommend her.  The dermatologists are at the melanoma clinic (entering to the left of the sign-in desk) on the 9th floor of the main building. I see Dr. Huen every 3 months as well as a local dermatologist every 3 months. Yes, I know I effectively see someone every 1.5 months, but for now, I feel better being double checked. If you prefer a doctor closer your home and work, I’d ask your oncologist for a recommendation. Send a note to him/her or her PA or NP. They should have several good options. 

I know I'm late to this board, but I'm happy to participate as well. Brief background: I was diagnosed with Stage 1 melanoma in 2009, had an in situ mole in 2010, and reached Stage 3c two months after my first (and only) child was born in 2016 (found out it was a likely possibility the day after he was born but the first biopsy was a false negative). I also wonder if fertility treatments impact the causal connection between melanoma and pregnancy. Like your wife, we used IUI and I was on fertility medication.