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Any treatment/medication helping Capillary Leak Syndrome? #SystemicCapillaryLeakSyndrome #Immunotherapy #opdivo #stage4melanoma

#SystemicCapillaryLeakSyndrome

I keep hoping the next treatment my oncologist and rheumatologist start me on will get rid of this swelling. It’s taken over my life. I tried IVIG- which semi brought down swelling for a few days. It was really difficult to get approved by insurance. I’m now on Anakinra, which hasn’t given any relief yet.

My Capillary Leak Syndrome started over a year ago which led to me being taken off immunotherapy and being hospitalized for sepsis. I’m looking for anyone going through this awful disease. Please get back to me!

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Has anyone had an experience with #Immunotherapy ?

My mom was diagnosed with cancer for the second time. This time we caught it because of a chronic cough that won't go away. She also has pneumonia on top of everything and some other bacterial infection. Even though the cancer is in the same place as her first #BreastCancer , it is currently in the lymph nodes and cannot be operated on given the location. We do not know if it is #LungCancer or something else. The doctors are suggesting a new FDA approved treatment with immunotherapy and chemo if it is lung cancer. Please share if you know anything! It would be really helpful!  #Cancer

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Is there anyone who would like to share their experiences with Xolair (Omalizumab, Mast Cell Stabilizer) treatments?

I am 4 months in on mast cell stabilizer treatments of omalizuab (300 mg/26 days). This is layered over 40mg of Rupatadine daily.
I have a vast amount of systematic symptoms as it took a long time to receive diagnosis....I feel like things are beginning to slightly improve, however the side effects offset this positive improvement, especially in the first two weeks after treatment

#AutoimmuneAngioedema #Urticaria #MastCellActivationDisorder #MastCellActivationSyndrome #MastCellDisease #Xolair #Immunotherapy #Fibromyalgia #ChronicPain #Lymphedema #DemyelinatingNeuropathies foll

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I.went thru chemo for bladder cancer and found out yesterday that although the tumor shrank, cancer has spread to bone and thru muscle.

#Immunotherapy

3 comments