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CLL - Referral to CLL Specialist
Blood Cancers & Disorders | Last Active: Oct 13, 2019 | Replies (16)Comment receiving replies
Hi, @jvertalka - I can imagine it would be very unpleasant news to suddenly have your infusions of the immunoglobulin (IVIG) you've been on for 2 years suddenly cancelled due to a shortage reported by the infusion center, especially as they have made a tremendous difference in your health.
I wanted to let you know that I moved your post about shortage of immunoglobulin into this existing discussion where other members are talking about chronic lymphocytic leukemia (CLL) so you can connect with others who have this disease or another form of leukemia and may have encountered a similar situation. Hoping that members like @bflattenor @81ue @lesliem7600 @oceantroll @pokeyspride2002 @ssid @dougmann @robbhiller will join in and offer input on the shortage, the cancellation of the infusion and how to handle this situation. @1nan also may have some thoughts.
What has your hematologist recommended you do with your treatment at this point, in light of the shortage you encountered, jvertalka?
Replies to "Hi, @jvertalka - I can imagine it would be very unpleasant news to suddenly have your..."
I sent a message to him on the Mayo message board, and a nurse replied that I should check with other infusion centers in the area. I'm afraid I think this reply demonstrates how Mayo medical personnel (wonderful in many ways) often don't have a grip on what healthcare is like in other parts of the country. Every infusion center I called said my doctor would have to call them - not me. Called my local primary care doc and he is on vacation until next week. No one else in his practice (about 20 docs total) could handle it. So I'm waiting on his return call, hopefully this week.
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Hi,
This discussion has been dormant for 6 months. Perhaps there is a better location for the question.