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Non Hodgkin's Lymphoma- Watch & Wait Approach

Blood Cancers & Disorders | Last Active: Apr 13 11:51am | Replies (199)

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@becky1024

Well Jackie, if you’ve ever read about me and my various post, I must have the worst body in the world. Yes, I’m in the watch and wait game like you, however I’m in that critical stage you don't want to be in. Back in 2019, I discovered something was wrong with my blood work that nobody seemed to care about. So I begged my new pcp to have my blood checked out more carefully. Since I’m my own medical health activist all my life, I could tell something was drastically wrong. Sure enough, within 48 hours, I received a call from my hospital’s cancer clinic. My pcp had told them to look at my blood results and they wanted to see me immediately. Naturally, I’m scared that I already have the big “C”. I’m to see an Oncologist and Hematologist and after many blood, urine and other tests, they said I had a rare condition called MGUS. With more months and tests, they narrowed it down to an even rarer blood condition that’s diagnosed as Kappa light chain IgM blood. So it’s the waiting game but over the last 6 months, my bad guys are progressing.

To clarify this for you, MGUS means I have precancerous cells roaming around my body. Because it’s Kappa IgM, those cells will most likely progress into full blown cancer and they are already slowly progressing according to my blood test in May 2022. Now depending on how it progresses, I’ll either end up with Non Hodgkin’s Lymphoma or an even rarer form of Lymphoma known as WM, Waldenstrom Macroglobulemia, that’s a mouth full. So I’m back to the waiting game but other symptoms are popping up, intense itching below the knees, my Lymphatic system is blocking up, I’ve lost 27% of my body weight, swollen Lymph glands above and below my mid line (not good), one or the other if better but both is definitely not good news. So as you can see, this has taken over 3 years to get to this point and I’ve told my Doctor, no cancer’s going to kill me, my heart will. That’s because I have a 1 in a million heart birth defect that will kill me any second. So if you have a question, just ask. And yes, you can go the rest of your life without any further complications, that’s why you’re playing the watch and wait game to keep an eye on you. Good luck, Becky1024

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Replies to "Well Jackie, if you’ve ever read about me and my various post, I must have the..."

Thank you for your honesty and strength and courage. My puny little Splenic Marginal NHL is a little issue compared to all that you have faced. Prayers for you, regardless @sally2022