Low values on SPEP enough to diagnose hypogammaglobulinemia?

Posted by mar2a @mar2a, Jan 16, 2022

Earlier this year I had an SPEP test and at the bottom of the test it said "Consistent with hypogammaglobulinemia. Serum free light chains or urine immunofixation should be considered if plasma cell dyscrasias are a possible clinical diagnosis."

My doctors didn't comment on that and I totally forgot about it until now. I'm undergoing chemotherapy for bladder cancer and last week they had to postpone my chemo because my neutrophils are too low.

Is that one comment from the lab enough to say I have hypogammaglobulinemia or did I need further testing to actually be diagnosed? Has anyone with hypogammaglobulinemia had a problem because of it when they underwent chemo?

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@mar2a Hello, you’ve certainly asked a good question and I don’t really know the answer. You need to ask the doctor specifically. If you don’t have an appointment coming soon, use the patient portal. Doctors usually check the portal daily and can answer patients’ questions. But, also, the doctors do pay close attention to lab values. The fact that you’re on chemotherapy can easily change the lab values and a lab person doesn’t know that you are on chemo, so the automatic responses go on the report. The doctor does know about the chemo and can let the comment go by, forgetting that patients read everything! But ask the question of the doctor!!
You also mentioned that you’re getting chemo for bladder cancer. Are you tolerating it ok? Did your doctor explain why low neutrophils have delayed the latest dose?

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Thank you for your response. Just to clarify, I had the SPEP test approximately 6 months before I showed any symptoms of bladder cancer. The test was ordered by a neurologist who was investigating why I was having multiple falls. The oncologist team is very good about explaining things and I do contact them through the patient portal. I haven't contacted the neurologist because now that I've been diagnosed with cancer, that's my major priority. I'm going to ask my oncologist if he thinks it's going to complicate chemo and go from there. When I got the test results, I happened to be speaking to a cousin who told me she and her daughter both have/had hypogammaglobulinemia, which really made me wonder, but as I said, when I was diagnosed with cancer, that became my main focus. I totally forgot about the hypogammaglobulinemia until now.

I've done only one cycle of the chemo (carboplatin and gemcitabine) and so far I'm tolerating symptoms well. Tomorrow we try again, if my neutrophils are back up.

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@mar2a

Thank you for your response. Just to clarify, I had the SPEP test approximately 6 months before I showed any symptoms of bladder cancer. The test was ordered by a neurologist who was investigating why I was having multiple falls. The oncologist team is very good about explaining things and I do contact them through the patient portal. I haven't contacted the neurologist because now that I've been diagnosed with cancer, that's my major priority. I'm going to ask my oncologist if he thinks it's going to complicate chemo and go from there. When I got the test results, I happened to be speaking to a cousin who told me she and her daughter both have/had hypogammaglobulinemia, which really made me wonder, but as I said, when I was diagnosed with cancer, that became my main focus. I totally forgot about the hypogammaglobulinemia until now.

I've done only one cycle of the chemo (carboplatin and gemcitabine) and so far I'm tolerating symptoms well. Tomorrow we try again, if my neutrophils are back up.

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I'd like to also bring @ldestella and @autumn12575 who have experience with hypogammaglobulinemia into this discussion. They may have some insight to share.

@mar2a, I agree that bladder cancer and treatment is the primary focus right now. Before cancer, what led to your needing investigation that showed this finding on your lab report?

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@mar2a Well, I didn’t do so well on that one, did I? I added an article for you on hypogammaglobulinemia. What i noticed was that hypogamma….. affects the immune system as does chemotherapy thus making you more susceptible to infections.
https://www.healthline.com/health/hypogammaglobulinemia.
You might want to try a search for other people or discussions by using the Connect search. Go to the very top of this page where you will see a ‘search’ box. Type in ‘discussions hypogammaglobulinemia’ and hit the search button. This will take you to a choice of discussions that you can read. Try it!
You had the SPEP test done by a neurologist because of frequent falls. Was any diagnosis made at that time or were you referred to a specialist?

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@becsbuddy

@mar2a Well, I didn’t do so well on that one, did I? I added an article for you on hypogammaglobulinemia. What i noticed was that hypogamma….. affects the immune system as does chemotherapy thus making you more susceptible to infections.
https://www.healthline.com/health/hypogammaglobulinemia.
You might want to try a search for other people or discussions by using the Connect search. Go to the very top of this page where you will see a ‘search’ box. Type in ‘discussions hypogammaglobulinemia’ and hit the search button. This will take you to a choice of discussions that you can read. Try it!
You had the SPEP test done by a neurologist because of frequent falls. Was any diagnosis made at that time or were you referred to a specialist?

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I have only a tentative diagnosis of possible vestibular problems. I was prescribed vestibular physical therapy to help while I waited to see a specialist. It helped some and helped me figure out to walk more safely, but then the day after the CT that identified the bladder tumor, I fell again, so it's not foolproof. Even though the bad fall was at the end of August, the vestibular specialist they referred me to is so booked up I won't be seeing him until next month. I'll still be undergoing chemo then (and after that, surgery), but I'm not going to give up my appointment and wait another 5 months just to get started. I'm hoping to at least get started on this.

I did try searching for just hypogammaglobulinemia, but didn't find much. I'll try it again with 'discussions' and see if that helps.

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@colleenyoung

I'd like to also bring @ldestella and @autumn12575 who have experience with hypogammaglobulinemia into this discussion. They may have some insight to share.

@mar2a, I agree that bladder cancer and treatment is the primary focus right now. Before cancer, what led to your needing investigation that showed this finding on your lab report?

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Hello-
I see this as a very catch 22! I have hypogammaglobulemia aka CVID with predominant B cell damage. Have you seen an immunologist about the possibility of CVID? Without doing, in my opinion only, stat antibodies (tx for CVID) and getting those up enough to handle the chemo. I have had this dz, I discovered because (I’m a pushy old nurse) of numerous amounts of antibiotics. To this day, I have had 121 antibiotics five years. So many more questions, feel free to pm me with questions! Many prayers
Lisa

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Not exactly, but needs to be pursued via a simple IgG panel bloodwork

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@mar2a

I have only a tentative diagnosis of possible vestibular problems. I was prescribed vestibular physical therapy to help while I waited to see a specialist. It helped some and helped me figure out to walk more safely, but then the day after the CT that identified the bladder tumor, I fell again, so it's not foolproof. Even though the bad fall was at the end of August, the vestibular specialist they referred me to is so booked up I won't be seeing him until next month. I'll still be undergoing chemo then (and after that, surgery), but I'm not going to give up my appointment and wait another 5 months just to get started. I'm hoping to at least get started on this.

I did try searching for just hypogammaglobulinemia, but didn't find much. I'll try it again with 'discussions' and see if that helps.

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Mar2a, here's another discussion about hypogammaglobulinemia and common variable immune deficiency (CVID)
- Hypogammaglobulinemia https://connect.mayoclinic.org/discussion/hypogammaglobulinemia/
- Asthma, COPD, CVID and MAC https://connect.mayoclinic.org/discussion/new-member-5/

Thank you @ldestella for responding to my tagging you and for sharing with Mar. I appreciate your offer to private message each other. I'd also like to point out the benefit of discussing together here in the forum. I was thanks for your discussion with @autumn12575 that I was able to connect you and Mar. I'm sure she is grateful that you shared your story on the forum. I'm equally confident that the conversation here will help countless other members who may post in the future. 🙂

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@ldestella

Hello-
I see this as a very catch 22! I have hypogammaglobulemia aka CVID with predominant B cell damage. Have you seen an immunologist about the possibility of CVID? Without doing, in my opinion only, stat antibodies (tx for CVID) and getting those up enough to handle the chemo. I have had this dz, I discovered because (I’m a pushy old nurse) of numerous amounts of antibiotics. To this day, I have had 121 antibiotics five years. So many more questions, feel free to pm me with questions! Many prayers
Lisa

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Thank you for responding. I haven't seen an immunologist yet. Today is a chemo day for me and I'll ask my oncologist if he thinks I should see an immunologist or at least have an IgG panel with my regular bloodwork.

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@mar2a

Thank you for responding. I haven't seen an immunologist yet. Today is a chemo day for me and I'll ask my oncologist if he thinks I should see an immunologist or at least have an IgG panel with my regular bloodwork.

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Absolutely!! We have to advocate for ourselves these days

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