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mattymatilda avatar

Diagnosed with MGUS and CHIP with M spike

Blood Cancers & Disorders | Last Active: Nov 23 6:10pm | Replies (41)

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@mattymatilda ownership I felt like you have written my story. I have an oncologist hematologist that will not say the words. I am scheduled for my first bone marrow biopsy on Tuesday. I’m terrified not of the biopsy but the results. I was a year ago diagnosed with MGUS and I have suffered. Chronic fatigue has changed my trajectory of my life. I am so slow and wobbly and tired all the time I’m 77 and prior to last year I was busy Active, grandma of six world traveler and active member of my community in church. This has totally put the brakes on my life and I just struggle each day to get out for my 2 mile walk and it exhaust me to the point that I can do nothing else. The doctor said I may have slipped to marginal splenic lymphoma, but we just don’t know yet of course. Texas Oncology has been short on getting four page signed pathology report over to the hospital so they can set up my appointment. The scheduler at the hospital took pity on me and went ahead and scheduled an appointment so I could arrange for my son to take me. So I have it scheduled, but they don’t have the proper documents yet. Hopefully they will have them by Monday. How hard can it be to fax over four pages signed by the doctor. Nevertheless, I appreciate what you have said about the bone marrow biopsy because I need to know what I’m dealing with. The uncertainty is making my mind go to the dark side and I don’t need that. I need information I can work with. I think I can work with anything if I know what it is. I hope things go well for you. I hope you get the diagnosis and the treatment you need and deserve. We all need that. I just want to be someone’s priority. And yes, I’m in Houston and wouldn’t it be wonderful if I could go to MD Anderson However my insurance doesn’t go there isn’t that special ? My husband had cancer and was able to go to MD Anderson because he was still working and had the best insurance money goodbye. But it was before he retire he didn’t get to retire. There is not a Mayo Clinic near me either, I would have to do some serious traveling, but I would do it. If someone said come we have a trial going on. Come check us out I would do it. I want to live my goal for my whole life was 105 and this might just cut me short.

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Replies to "@mattymatilda ownership I felt like you have written my story. I have an oncologist hematologist that..."

@4kleo i'm so sorry to hear what you're going through. I completely understand. It is beyond frustrating to keep being pulled along without knowing what's happening. The fatigue you describe is exactly like mine. It's like I can only do one thing per day. Cook a meal. That's all I can do for the day. Go get groceries. That's all I can do for the day.
I'm glad you feel good about the bone marrow biopsy. Just remember to ask for the sedation from your doctor. You won't feel a thing and they got my results back within four days. Sending all my good thoughts your way please stay strong and I'm sure once you have some answers It will be much easier.

@4kleo
Hi just read this and I am angry on your behalf!!
Are you saying MD ANDERSON DOES NOT TAKE MEDICARE ??
You can still change to another insurance before December 5 or 7 th
What ever you do ! Get insurance which will cover good cancer center!!
I have Medicare advantage plan ! They are helping me pay for my life saving drug !!
My husband insurance company would not pay for it !! Just example how different coverage can be!!
I am assuming you are on Medicare because of your age !! I hope you have some one to help you with good insurance coverage!!
Maybe I am wrong but I CAN NOT IMAGINE THAT HOSPITAL LIKE MD ANDERSON DOES NOT ACCEPT MEDICARE
GOOD LUCK WITH THAT