They’ve all been more pink/red. Most of them look like skin blemishes/small pimples? So we were never alarmed by them. The larger one on his forearm did look more like psoriasis or like a fungal patch. His primary pointed it out at his yearly physical and prescribed a steroid cream and a antifungal cream which ultimately made it angry and it flared up and grew more puffy and red and bumpy which alarmed us so we made an appt with a dermatologist. They’ve never bothered him though. And we’re not sure what the cause is.
We’re working closely with both an oncologist and a dermatologist that work together treating cutaneous lymphoma in their clinic at UCI. They both have provided us with those options.
He did have a PET/CT last month - all was clear. He had blood work done as well - all was good, I’m sure they will take blood again in the future, but haven’t discussed a timeline.
Intralesional steroid injections are steroids that they inject directly into the skin lesions to shrink them.
IV rituximab is a immunotherapy drug that they administer intravenously at the infusion center. It would be 4 weekly infusions for a month. This medication specifically targets a protein on the abnormal b cells and kills them. However, the downside of this medication is that it also kills the “normal” B cells so he would be immunocompromised for 6 months to a year after the last dose. Doctors are offering this as an option because he has multiple spots on his skin.
If it was just one spot like yours, excision or laser radiation to the spot would have been an option.
I’m hesitant to do the immunotherapy, just because of the side effects and am leaning more towards the steroid injections and then watching and waiting.
We meet with oncologist again in 3 weeks after she presents his case to her co-workers to hear their recommendations as well.
I wish I could upload pictures here to show you.
Hi!!
I thought my pinkish/red raised nodule on my forehead which started as a dot and grew to 1cm X 1 cm was a completely innocent pimple. I thought to myself I won’t squeeze this. I’ll leave it and it will just disappear naturally. When it didn’t and continued to very slowly grow over 3 years ……. I made the appointment with a Consultant Dermatologist and was told it was a Basal Cell Carcinoma. It was excised. 3 monthly later I was called back and told the biopsy came back and it wasn’t a BCC. I was stunned/extremely upset. I was told I was a 1 in 3 million person and this PCMZL is extremely rare. Cause unknown. So it’s good to chat.
I was over the moon to learn your husband’s PET/CT scans were completely clear. So happy.
At my last bloods 2 weeks ago I was told by the nurse that the bloods tell them nothing?! I’m going to ask my Consultant Haematologist what exactly that means? I will let you know what she says.
I wish you could upload pictures too. I don’t know what a fungal patch would look like? Is it completely white? And does it have a completely flat white scaly grainy texture? Does it look like a flat white scaly grainy perifungal wart? Or is it a flat pinkish/red scaly grainy texture? Thank you
I pray all is really good news from the oncologist in 3 weeks. Please let me know.
I personally wouldn’t have the drug. I personally would investigate myself the injections more fully before making a decision on them. These are extremely difficult personal decisions to make.
Take Care. Kindest thoughts and regards