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Does MGUS cause red blood cells (RBCs) to drop?
Blood Cancers & Disorders | Last Active: Oct 16 5:56pm | Replies (16)Comment receiving replies
I met with a Cancer PA. I asked questions but there are always more that pop up that you did not think to ask. All my blood work is good except for Kappa Free LC which is 45 but has not changed in six months. What has me concerned is a girlfriend, much younger than me, has a Kappa Free LC number higher at 62 and she developed Multiple Myeloma. She was very insistent that there was medication that could bring my number down. She also wanted me to get a Pet Scan saying she didn't want me to go through what she did. Now I heard from her family that her Cancer has gone into her leg. I am really scared, and everyone says, oh don't worry, you are fine, but am I? I have other issues leading to not breathing well and of course high cholesterol, but this blood protein is a real concern for me.
Thank you for your suggestions. I will write down my questions. My daughter did go with me but has since dropped the practice. I have been referred to a school hospital for the damage in my lungs due to GERD and hiatal hernia. Getting old is no fun.
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@bocky
“Getting old is no fun.” Indeed! I feel that!
One of the things that has helped me the most is finding the right physician who is a good match with me. I didn’t get my first choice from all the recommendations of trusted friends, but after seeing this hematologist/oncologist two or three times I felt very confident in his knowledge and, his investment in my health. That made all the difference. I stopped reading everything I could get my hands on on the Internet and instead, writing down my questions and asking them of him. He tells me what he thinks, but then he also tells me about the studies and data that support his opinion. I like data.
Do you want a physician to work with you who treats multiple myeloma on a daily basis, not someone who has a general practice. A general practitioner may have some experience, but if you were getting a surgery or colonoscopy, you would want someone that does many of these procedures every week, not someone who does the procedures three or four times a year. Sometimes the generalists ego gets in the way I believe. They are reluctant to refer to a specialist. That’s a big red flag for me.
Although your friend progressed to multiple myeloma, that doesn’t mean you will. They not only look at your cap and numbers, but they will also look at the ratio and other health concerns. A hematologist/oncologist is going to look for signs that there is progression. They may do a bone marrow biopsy and, they will do scans to make sure that your bones are free of lesions that are a telltale sign. That’s why your friend suggested the scan. I get scans and blood draws every six months.
Especially since you have a friend who had a bad experience, it will make you anxious until you get some definitive answers. One of the questions that I asked that was helpful “at what point Will you begin to treat me? What would my numbers look like that you believe would be the threshold for progression?”
You have to advocate for what you need. As soon as you leave the doctors office, they move onto the next patient. It’s important that you tell them what you need and gently move them along until you get it or they explain to you a logical reason why you cannot have what you want.
I’m sorry that your daughter has stopped going with you. Do you think you could ask her to accompany you again?