[surbhijain93]

Extreme swelling and color change - what to do?

by surbhijain93 on Sun Mar 02, 2014 4:01 am

Hi all,

My father is on his 5th cycle of BTD [bortezomib, thalidomide, dexamethasone].

Though his latest reports show M Spike not seen, he has very extreme swelling in legs and face. His legs are swelled up like balloons and also the color of his legs have changed to reddish-blue. His eyes also have swollen and eyelids seem to fall down and his eyes appear very small. We are very frightened particularly of the color change.

Please tell what should we do now?

[Dr. Ken Shain]

Re: Extreme swelling and color change - what to do?

by Dr. Ken Shain on Sun Mar 02, 2014 11:25 am

I would suggest that you hold therapy and seek medical evaluation.

It may be "benign" and progressing over weeks it may be associated with disease/therapy associated issues. Holding therapy and outpatient supportive care may be enough. The discoloration is curious, but can be associated with a number of issues.

However, if it has progressed over days and is symptomatic, he needs to be evaluated more quickly. There is a very low incidence (very rare) of a serious condition called Clarkson Syndrome, or idiopathic capillary leak syndrome, associated with paraprotenemias. Although this syndrome usually improves with control of disease, it has, at least by a case report in a Taiwanese patient, been "associated" with bortezomib (Velcade) and requires hospitalization and supportive care.

If there are issues with breathing, swallowing, mental status changes or other critical issues- this becomes an emergent issue for medical evaluation. These are a bit concerning; however, unfortunately, I cannot say a lot more without a direct evaluation.

Hopefully, this is nothing too serious and is reversible. Please keep us updated.

I have posted the below references for your reading: the Taiwanese case report mentioned above and the Mayo Clinic experience.

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Ann Pharmacother. 2010 Mar;44(3):587-9. doi: 10.1345/aph.1M585. Epub 2010 Feb 11.
Recurrent capillary leak syndrome following bortezomib therapy in a patient with relapsed myeloma.
Hsiao SC1, Wang MC, Chang H, Pei SN.
Author information 1Division of Clinical Pharmacy Services, Department of Pharmacy, Chang-Gung Memorial Hospital-Kaohsiung Medical Center, Kaohsiung, Taiwan.

Mayo Clin Proc. 2010 Oct;85(10):905-12. doi: 10.4065/mcp.2010.0159. Epub 2010 Jul 15.
Idiopathic systemic capillary leak syndrome (Clarkson's disease): the Mayo clinic experience.
Kapoor P1, Greipp PT, Schaefer EW, Mandrekar SJ, Kamal AH, Gonzalez-Paz NC, Kumar S, Greipp PR.
Author information 1Division of Hematology, Mayo Clinic, 200 First St SW, Rochester, MN 55905, USA.