Lymphoma

For nearly two years, Layla was evaluated and treated for suspected relapsing polychondritis, a rare inflammatory disease affecting cartilage, along with amplified pain syndrome (AMPS). She received biologics and other medications, but we continued searching for answers. Although specialists had different opinions about her diagnosis, a recurring theme was the possibility of an underlying complex pain syndrome.Meanwhile, my father was battling mycosis fungoides, a rare lymphoma, and my mother was living with Alzheimer's disease. I spent my days advocating for my father while Layla underwent treatments and received home instruction, trying to be there for my husband, Zach, and our older daughter, Eliana, too.my father died in March 2026. Days after his funeral, we moved my mother into assisted living, and I took Layla to Mayo Clinic. It was there that we first learned about Red Ear Syndrome, a rare and poorly understood condition that offered a different perspective on her symptoms.That August, as Layla's ear flared again, I became sick. Painful mouth ulcers left me barely able to eat or drink. I was diagnosed with pemphigus vulgaris, a rare autoimmune blistering disease, and began steroids and Rituximab infusions.Through instagram, I discovered Dr. Alon Seifan of NeuroWell, a physician I might never have found otherwise. He began approaching Layla's symptoms through Red Ear Syndrome, complex regional pain syndrome (CRPS), and migraine-related mechanisms. His approach to treating her migraines was different from what previous neurologists had tried, and we're finally seeing encouraging results. As Layla's medical journey evolved, so did our understanding. Today, we're exploring the possibility that her symptoms are primarily neurological and pain-related rather than autoimmune.#Pemphigus vulgaris #redearsyndrom e #ComplexRegionalPainSyndrome
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Hello everyone,
I’ve been taking methotrexate for years and I never had a problem with it. The past two weeks, whenever I take my methotrexate I get a fever and swollen lymph nodes. This would last for about two days, the feeling is awful.
My oncologist tested me for lymphoma because I had some symptoms of it but all my tests were negative. Now this is happening to me. I never came across this before. Has anyone else noticed this before, or had a similar experience like what I experienced. Thank you for your response in advance. 💚💚💚💚

Hi, my name is JasperBegonia. I'm here because my big brother died about six months ago and I’ve just learned that COD was suicide. Gunshot wound to the head. He did it in the parking lot at ups where he worked for 48 years. I just got a copy of his death certificate so it’s confirmed after his wife tried to hide this tragedy. My husband died 3 weeks after my brother but from a non curable lymphoma. I don’t have anyone to talk to but pray for my heartache to end.
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Has anyone here been diagnosed with BII? In 2010, I was diagnosed with breast cancer, and because I had Hodgkin’s lymphoma in the early 90’s, I opted for a double mastectomy. My insurance covered reconstructive surgery, so I got silicone implants. While I’d already been diagnosed with fibromyalgia several years before the BC diagnosis, the symptoms seem so much worse the past couple years, which now include daily headaches (among other things).

It has made me wonder if I may have BII, but unfortunately there isn’t a test that confirms one way or the other. The only solution is to have them removed. I’m hoping to talk to someone else that has dealt with this, as I really don’t know what to do. It could just be my fibromyalgia getting worse, right? How could I know? Hoping someone here knows something.

Thanks for reading.

Hi, my name is Tahoetexi. I've been diagnosed with possible lymphoma. All of my test results haven't been finished. I'm trying to keep a positive attitude and believe I don't have lymphoma. My biological mother died of bone cancer when she was 80. That was 10 years ago. I'm now 70, soon to be 71. I don't feel bad, just full of anxiety and depression over my diagnosis. I'd like to hear from others and their experiences in hopes to get a more positive attitude. I've been receiving so many ad's regarding cancer treatments. I'm really confused. I'm definitely stressed and a worrier!! Thank you !!

#MightyTogether #Anxiety #Depression #Grief #Cancer

I have chronic lymphoma, now combined with post-septic-shock from a kidney infection. I’m scared that I’m not going to live very much longer. The little bit of research I allow myself indicates that the odds are all against me. I’m only 51, and I feel even younger inside.

It makes me sad that I might not ever get to go to Europe, go skiing, or find a life partner.

I’ve been thinking lately that not everybody gets to have a great life.
All my 5 siblings do, but I don’t. Thats just the way it is.

I guess it comes down to… you can’t always get what you want. Some people are dealt a shitty hand in life, and just have to deal with it the best they can.