Path report

Sorry, here goes… My son was diagnosed late Sept last year. Primary was dark pink,deep and ulcerated in his fore arm.Had an excision and slnb- stage 3b. He had a clnd in November and began yervoy in a trial in January. He developed severe headaches that responded to steroids( the dr dismissed the headaches as viral and treatment continued). Next developed cellulitis in his leg with a large lump -took him to the local er as the oncology nurse practitioner said was unrelated.  This cleared up with intravenous and follow up antibiotics. At the same time he had redness in his eyes.  The oncologist said (through a phone call by the nurse) that it was allergies and to use over the counter eye drops. Treatments continued and his eyes got worse. The nurse said she'd get in touch with an ophthalmologist and have them call us, but after waiting a week and a half, we made an appointment with an opthamologist on our own and he had acute anterior uveitis in both eyes. The nurse then said that oh yes that does rarely happen with yervoy. He responded to steroidal eyedrops, but the uveitis returned when he completed the eye drops. He started a second course of steroidal eyedrops. Yervoy treatment continued. 4th yervoy dose and ct in April. 3 growing nodules found in chest, thyroid and area of clnd but were negative at PET. Uveitis returned and he began third round of steroidal eye drops. His next appt with the onc was in the end of July and he was supposed to start the maintenance treatment with yervoy, but the dr decided to hold off until Oct. to see what happens with the uveitis. My son pointed out a large dark freckle that had suddenly appeared in the scar from the primary excision. Dr said it was nothing.  He had a screening the next day which found everything was fine. A week later he mentioned that he had been having pain his arm for a while, but figured it wasn't anything until he felt a lump.  It was the size of an egg in his elbow crease. We went to the er and a Doppler ultrasound found a large solid hypoechoic mass. This was August 5.  We called the oncologist on call, who asked me to text him a photo of the report so he could forward it to my son's oncologist. A week later my son got a call about setting up a PET from the testing department.  Then he got an email from the nurse setting up ct and MRI. The tests were completed on August 15 and 16. He found the results out through the patient portal while at work. Positive PET for the lump and the MRI found a growing nodule in the left suboccipital lobe . No word from the dr.  Got an email saying he had an appointment with the surgeon. Surgery to remove lump on September 11.  Path reports results posted to patient portal on September 18. Again, no call from the oncologist. Metastatic melanoma in epitrochlear lymph node measuring 4.9 x4 x 3.3 cm. Extracapsular extension is present.  The dark freckle in the scar is an early formation lentigo and not a concern (as explained by you.) Still no contact from the oncologist. However, my son did receive a letter from his insurance company giving approval for opdivo. So we guess that's what's next???  He does have an appointment this week with the surgeon (a follow up) and the oncologist's nurse practitioner. He is experiencing severe swelling, numbness and pain in his arm, but can move his hand. So the advice I'm seeking is: is it bad to have a recurrence in less than a year while on treatment?  I have found very little info on line about tumors in the epitrochlear lymphnodes , has anyone here experienced them? Bristol Myers Squibb says opdivo is just as likely to cause uveitis- too risky? Any other suggestions? And, finally, is the lack of communication we have experienced with the oncologist typical?  Sorry this is so long .

It is in the brain. The surgeon said that "well it didn't light up in the PET".  However, we only found out in the patient portal in the surgeons report that apparently the epitrochlear node had shown signs of growing in an older ct, but did not light up in the April PET so it was never even mentioned to my son.  My son just turned 30 and is not a complainer . He doesn't like to "bother " the drs. I think that the lack of communication has been shocking, but I thought I was over reacting and maybe this is normal. Maybe a second opinion would be justified? I am very worried about the sub occipital growth. My son thinks if it was an issue they would have said so. We just don't know a lot since we have only had 1 pre surgical appointment (not even a follow up yet) and have heard nothing at all from the oncologist since noticing the lump back in the beginning of August. 

Thank you for your help.