Hi, Everyone! It has been a few years since I have posted here. I have a few questions that I am hoping some of you may be able to help me with. I will give you some background first.
My son, Jason, who is now 28 was diagnosed with ichthyosis at birth and more specifically CIE some years later. Other than ichthyosis he has always been healthy. Things have gone pretty well for him and he moved to California to work his dream job about 4 years ago. Sometime in October of last year he started to feel run down and had a cold that he could not shake. He was working a lot and would not slow down his pace and took his time going to see the doctor. When he finally went to the doctor, he was diagnosed with some type of respiratory infection and given an antibiotic. He felt a little better for a bit, but still could not shake it. By December, he was in bad shape. Having trouble breathing, face swelling and flu like symptoms. Was having trouble functioning. To make a long story short, after going to the hospital, it was discovered that he had a large mass in his chest as well as carrying around 1 1/2 liters of fluid on his one lung. Two weeks before Christmas, I received a call from a doctor in CA that my son had some type of cancer and the mass was large, they were not sure what it was at that point. Unhappy with the care Jason was receiving in CA(that is a long unbelievable story in itself), we decided it would be best to bring him back to Pennsylvania for complete diagnosis and care. He flew in a day later and we took him to the emergency room the next morning. He spent 10 days in the hospital and was diagnosed with Hodgkin's Lymphoma. They started his chemo in the hospital immediately. Jason had the best team of oncologists and surgeons that anyone could ever ask for. One of them told me on the day we were bringing him home, that had we left him in CA, he would have not survived to make his next appointment there, which they did not have set up until 3 months later! Well, Jason stayed with us and did aggressive Chemo for the next 6 months. Handled it like a champ and is now in total remission!!! His last chemo treatment was late June. He still needed to stay to remove his medi port and get some scans etc...but he was feeling pretty darn good and ready to get back to his life in California.
He is still here with us and is now feeling lousy. His skin is at it's worse. His ichthyosis has stepped up 100 times worse than it ever has been. His feet are so swollen and cracked that when he steps out of bed in the morning the pressure breaks open the cracks and they bleed, he has had a few full body rashes that hurt so much he spends the day in bed, his fingers are tight and stiff and he has now, for the first time in his life developed ectropion to beat the band. His eyes will not shut and he has a steady stream of tears leaking out. His eyelids are completely turned out. His Dr. is setting him up with an opthamologist.
I was wondering if anyone else has experienced this that has had cancer. I have also seen that lymphoma is also one of the main causes of acquired ichthyosis. Could Jason also have acquired ichthyosis as well as hereditary? I also worry that the ectropion could remain permanent or is there a chance it will go away on it's own? Any info would be greatfully appreciated. Sorry this is so long winded.
Edited by mary bellucci (08/28/14 10:42 AM)