I am looking for some advice on how to live with what appears to be a chronic form of SCLS.  I was diagnosed with Stage 2A Triple Negative Breast Cancer in 2017.  I had a lump removed and started into Chemo.  By December of 2017, I was swelling over my entire body and it was getting worse with each dose of Chemo.  I started to research all of my symptoms that weren't typical with Chemo side effects and arrived at the conclusion that they all fit SCLS minus the drop in blood pressure.  Because of the lack of drop in blood pressure, the doctors wouldn't entertain anything other than I was seeing a side effect of the Chemo and to progress on.  My doctor assured me that the swelling and other side effects would go away after Chemo.  Every dose made everything worse and finally I told them I was done and didn't finish the Chemo.  The Oncologist wouldn't listen to my pleading that something was wrong and wished me good luck but he couldn't help me.  I started to research further and provided more evidence that it fit SCLS.  He discussed it with the drug company and immediately started me on 30mg Prednisone but still would not agree that it was CLS and again told me good luck and that he couldn't help me.  I started working with a different doctor and she referred me to a Nephrologist.  She and the Nephrologist had me admitted to the hospital and monitored my fluid intake and output.  They couldn't find anything medically wrong with me, discharged me, and told me to start weaning myself off the steroid because I was seeing side effects from it and most of the tests needed done without steroids affecting them.  By the time I made it off the steroid, I was swelling horribly and couldn't breathe. I had started radiation therapy in the meantime in the same building as the Oncologist.  The radiation team said they had never seen swelling of the entire body like I was and that I needed to immediately go upstairs and see the Oncologist.  He refused to see me and said I should see a Nephrologist again.  I saw my family doctor and she immediately put me on 6mg of Decadron steroid and scheduled me with a different Oncologist. Now after 6 months of being on and off steroids and otherwise untreated, the new Oncologist wasn't believing that it was CLS either but was at least looking and listening.  I was able to get Dr. Druey from the NIH to work with my new Oncologist to treat it as CLS.  I was started on IVIG but at a low dose because I am still swelling out of my skin and can't handle the fluids of a full dose of IVIG.  I am 10 days past my second monthly dose of IVIG and I am swelling more that I ever have.  I have not been able to come off the steroids without having increased swelling.  The side effects of the steroids are killing me.  I am so weak, have trouble breathing, my body feels heavy like I'm carrying cement in my veins, and the steroid itself is causing swelling of the face, neck, and spine so much that I have trouble with my nerves being pinched causing numbness.

I have only researched on this site before but today I created an account to ask if anyone can help me find ways to live with this swelling.  I need to find a way to get off these steroids before they kill me.  As it is, I can only go to the bathroom and back without having to stop and catch my breath.  When I take the steroids, I can feel the pressure on my spine and face and the numbness increase until the steroid starts to wear off and it is time to take another one.  The steroid helps to keep the swelling down but isn't keeping me from swelling entirely and without the steroid I swell quickly.  I know that my quality of life would be much better if I can get off these steroids but does anyone have a suggestion of how and keep the swelling somewhat under control?  

It is well known that Gemzar (gemcitabine), a chemotherapy drug used to treat certain types of malignant tumors, including some cases of ovarian, lung, pancreatic and breast cancers, can cause capillary leaks that lead to swelling disorders. Check out and see if that is what you were given, because then you may also be able to lean on the manufacturer to help you financially and otherwise to get well.  Patients are usually treated and resolved with steroids, but there are cases in the medical literature where the phasing out of the steroids leads to a return of the capillary leaks and thus the swelling.  These are known as instances of "chronic" capillary leak syndrome, and unfortunately little is known about how to treat them successfully.  I am glad that you got Dr. Druey to work with your new oncologist; he and his colleagues are expert in various swelling disorders.  You may wish to insist that you be seen in person in NIH's Clinical Center if your local physicians are unable to help, or that you be referred to the Mayo or Cleveland Clinics for a comprehensive consultation.  (Make sure, of course, to get a preauthorization from your insurance company.)  I'm afraid that there is little useful advice that we, patients who suffer from classic SCLS, can give you.  I'm very sorry!