Zelda_Scotland

/Users/LesleySmith/Pictures/Photos Library.photoslibrary/resources/proxies/derivatives/8e/00/8e74/UNADJUSTEDNONRAW_thumb_8e74.jpg
This appeared on my hip within a day. I saw my dermatologist in the morning and it wasn’t there as I had a full body check. When I went for a bath a night I spotted it and pointed it out to my husband who agreed that it definitely hadn’t been there earlier in the day. The doc said watch and wait but within 4 weeks it was 3mm wide and 0.5mm deep. It turned out to be my 4th Melanoma within 9 months.

Hi Ted,
I’ve been on Nivo since January and my last CT scan showed enlarged lymph nodes in my chest and several lug nodules. I’ve to have an Endobronchial Ultrasound (EBUS) on Tuesday where they put a camera down your windpipe and take samples. This should determine whether it’s inflammation caused by the treatment or whether the melanoma has spread. Hope yours turned out to be ok.
Zelda

Hi Don,
I’ve had 10 bi-weekly infusions now with 16 still to go. My fatigue is worse on treatment day and the 2 days afterwards. I need to give in to it then and just sleep or rest. If i’m having a good day I might get by with a ‘light’ day and an afternoon nap. If I look after myself and take it easy I pick up again and have more energy. On my ‘good’ week I try and do some exercise, get outside and go for a fair walk. I’m trying to study as well as work part-time and I find the fatigue (and headaches) worse when i have really had to concentrate hard or read a lot. I’m also hypothyroid now which I think makes the fatigue worse. Really I just try to manage it by saving my energy for things I really need to do and pacing myself with naps/rest times.

Hi, 

Sorry to hear all this. My very first Nivolumab treatment caused me to become hyperthyroid. I had extreme fatigue and palpitations. One minute I would be ok and the next was like someone turned a furnace on and I would be melting hot and sweating through my clothes. I had no concentration and was very forgetful ( worse than usual!). 

I took Prednisone daily and this helped with the heart rate but not much else. They couldn’t give me more as I already had low blood pressure and they didn’t want to lower it any further.

Within 4 weeks I had crashed and am now hypothyroid. The consultant has said this will be permanent. I now take levothyroxine daily; initially 50mg for 5 weeks and now 75mg while they try to find an appropriate level that works for me. 

Hope this helps. 

Hi, 

I have just had my 8th treatment of Nivolumab (Opdivo) and have 18 more to go. I go every week; one week for treatment, the next for blood tests and to speak to my consultant. I get 170mg over an hour with saline either side so it takes about an hour and a half all in. 

I do have side effects but it’s entirely manageable.

The evening of treatment and the following few days I am extremely fatigued but I recognise the pattern now and can manage my life round it. I have constipation and take a daily laxative. The treatment affected my thyroid and I initially became hyperthyroid but am now hypothyroid. I take levothyroxine and that controls the symptoms. I also have Pruritis (extreme itching) and take antihistamines. 

I’ve been on this since January and so far all my scans have been clear so I would recommend it as an option. 

Good luck 

I hope you went to the appointment. I had a spot that started out looking like a freckle appear 2/3 months after my WLE, right in the middle of my scar. Nobody was concerned until my next check up by which time it was a 0.5mm Malignant Melanoma. It’s always worth getting checked no matter how important the meeting is. 

I had my first treatment on the same day as you Mike. Good luck!

Hi Mike, 

Just wondered how you were doing on the Nivolumab. 

8 done, 18 still to go!