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Jan 5, 2019 04:25PM
I am desperately seeking any advice or suggestions and wondering if anyone else had the dignicap failed? I had the very unfortunate and devastating experience of being one of the first persons to use the dignicap at my infusion center, and the nurse had no idea what she was doing, so she put me in two different size caps, a medium silicone with a large over that, and both were too big, and were not eve my head, much less freezing it, during my very first infusion. I ask the nurse, ‘how many other patients had she fitted?’ She said, “we do this all the time.” I was a nervous wreck the day of my first infusion, my biggest concern was making sure things were done right with the dignicap. My 40th birthday was less than3 weeks away and had latched on to any chance or hope that I could save my hair, or at least half of my hair, was a glimmer of of positive, that I very much needed, after such a rough year, I felt some ease, thinking I wasn’t going to have to lose all my hair on my 40th birthday. On the day of my first infusion, the nurse seemed even more unsure of what she was doing. I had read every single thing I could about how to fit the caps and tips on the dignicap website, and watched tube videos, but I was so overwhelmed when everything was happening, things just happened to fast, and even when I asked the nurse several different times, ‘if the machine was on,’ or,’ explained that I wasn’t feeling very cold, and ask her how other patients respond to this, she said, ‘everything is fine’ ‘calm down and relax.’
Everything was not fine, and I woke up on my 40th birthday to 90% of my hair coming out in huge chunks. I was absolutely devastated. My insurance does not cover any of this, and I have continued to use the dignicap, because I do believe it would have worked if the nurse had known what she was doing and/or just been honest with me. If the nurse had just said that she was new at fitting caps, I would not faulted her at all, and then I would have been happy to help figure out which was the right fit for me. Since she lied, and then was so obviously unclear of what she was doing, this has made me a nervous wreck and caused serious awkwardness anytime I have to be at that infusion place. I have one infusion left, and I will use the dignicap again in hopes to keep the very thin see through layer of hair I have left on my head, safe from the taxotere and hoping my hair will rebound quicker and that my hair will fill in sooner. I am wondering if anyone else has had this or anything similar happen with dignicap or any cold cap and what should I do, or can I do? I am in shock that this happened to me, and the awkwardness that has followed with the nurse at the infusion place. I don’t ever want to go back there again, so I will be so glad to get this last infusion over with. My hair is so fragile and still continues to come out in clusters of full strands, on a daily basis. I can’t afford a wig after the money spent on dignicap and I fear my hair is too fragile for a wig. The amount of hair loss is basically 85-90% of my hair all over my head is gone except a thin see-through layer, and I have the very front of about a quarter inch of hair from the front of my face by my ears. Luckily it is very cold where I live and I can just wear a beanie 24/7, but I am still devastated and have no idea what to do. Please help, any tips advice is so greatly appreciated.
7/12/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2-
7/26/2018 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary