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Anyone else been diagnosed with CVID and MGUS and have multiple cancer

Posted by hgearhart @hgearhart, Feb 4 10:16am

I had squamous cell carcinoma of the cervix and had surgery that removed everything except my right ovary. Then had Igg. After remission though I had dr’s argue 5years on autoimmune & CVID w lung involvement & Adult onset CF. Poss MS lesions. Mass in my duadenum later, now MGUS w positive antibodies and lesions all over. Positive Kappa/Lambda …. I’m scared this is MM I asked for a PET scan or cystogenic-karyotype and because my labs are bad then fine(ad nauseum) I’m not being taken seriously. Anyone help?

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Mentor
Patty, Volunteer Mentor | @pmm | Feb 4 10:59am

@hgearhart
I’m so sorry you’ve had so much to deal with. As a MGUS patient I feel as though my health monitoring is sometimes a bit overwhelming, I can only imagine what challenges you face.
It does sound as though you are frustrated that your concerns aren’t being taken seriously. There are established thresholds that differentiate MGUS from smoldering and Multiple Myeloma. You might start with your hematologist/oncologist and ask for him or her to answer all of your questions. You can’t make informed decisions until you have all the correct information. Ask about bone biopsy, the cause of the lesions, blood analysis numbers and any other questions you have and then what are your treatment options. If you can’t get information from your provider, perhaps a second opinion is warranted. I don’t know what is available in your area, but a cancer treatment center that treats Multiple Myeloma is your best bet. MGUS is not cancer, but it is a precursor condition for Multiple Myeloma and it’s essential that your provider is well prepared to treat you if necessary.
I know when you Google Multiple Myeloma it will scare you, but they have made remarkable advancement in the past decade and it is a treatable disease. I hope you never cross that threshold but the good news is that if you do, there is treatment.
I wish I could be more helpful about your specific questions, but there are so many variables and the person who can best address this with any specificity is your doctor. Be assertive about getting the information you need. Advocating for your health is important.
I’m wishing you the best possible outcomes. Let us know how you fare with all of this.
Patty

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1 reply
hgearhart | @hgearhart | Feb 14 8:30pm
In reply to @pmm "@hgearhart I’m so sorry you’ve had so much to deal with. As a MGUS patient I..." + (show)
@pmm

@hgearhart
I’m so sorry you’ve had so much to deal with. As a MGUS patient I feel as though my health monitoring is sometimes a bit overwhelming, I can only imagine what challenges you face.
It does sound as though you are frustrated that your concerns aren’t being taken seriously. There are established thresholds that differentiate MGUS from smoldering and Multiple Myeloma. You might start with your hematologist/oncologist and ask for him or her to answer all of your questions. You can’t make informed decisions until you have all the correct information. Ask about bone biopsy, the cause of the lesions, blood analysis numbers and any other questions you have and then what are your treatment options. If you can’t get information from your provider, perhaps a second opinion is warranted. I don’t know what is available in your area, but a cancer treatment center that treats Multiple Myeloma is your best bet. MGUS is not cancer, but it is a precursor condition for Multiple Myeloma and it’s essential that your provider is well prepared to treat you if necessary.
I know when you Google Multiple Myeloma it will scare you, but they have made remarkable advancement in the past decade and it is a treatable disease. I hope you never cross that threshold but the good news is that if you do, there is treatment.
I wish I could be more helpful about your specific questions, but there are so many variables and the person who can best address this with any specificity is your doctor. Be assertive about getting the information you need. Advocating for your health is important.
I’m wishing you the best possible outcomes. Let us know how you fare with all of this.
Patty

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Thank you. I have enlarged lymph nodes and my urine electrophoresis was full of lots of protein and “many unidentifiable” my primary care is ordering a current bone scan and lymph node biopsies. I am waiting for my appointment with Mayo. I live in a small town and the health care providers here in Idaho are unfortunately not well versed in this. I’m down to 95lbs and I just damaged 3 disks in my back. I’m so scared. Thank you for your information.

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Mentor
Patty, Volunteer Mentor | @pmm | Feb 15 2:41pm

@hgearheart i’m so glad that you are going to Mayo. I think even in more densely populated areas, PCPs don’t know much about MGUS. The mayo clinic is sort of one stop shopping and you can see all the different subspecialty areas there.
It is scary when you don’t have all the information and it seems like so many different things are going wrong with your health. I’m so sorry you’re having to go through this. I hope that you will soon get the information that you need to make informed decisions about your medical care. It always makes me feel more confident when I have a game plan.
Patty

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