1. < Blood Cancers & Disorders

Anyone have Follicular Lymphoma with low IgG, IgM and gamma globulin?

Posted by nschlacht @nschlacht, Jun 18 9:07am

Recently diagnosed with FL and initial bloodwork workup showed low IgG and IgM and low gamma globulin and positive immunization. I am negative for lymphoma in blood (via Flo Cytometry) but positive in lymph node and tissue mass. I’ve not had any treatments yet and my PET scan is scheduled in 2 weeks. Any others have immunoglobulins at diagnosis?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 28 12:04pm

Hi @nschlacht, I'm tagging a few other follicular lymphoma members like @valandsheri @quimbie @puddknocker @traceyt @vonbaron36 @bogie60 @lee59 @susanlim @caracello22 to join this discussion.

If I've calculated correctly, you will have your PET scan next week to help determine the treatment plan. How are you doing?

REPLY
1 reply
valandsheri | @valandsheri | Jun 29 6:14pm

Hi! My husband was diagnosed with FL a year and a half ago. This isn’t what you asked, but thought I’d join in with you. At diagnosis his bloodwork was all within normal parameters. Five rounds of Rituxan together with four rounds of bendamustine and after that his IgG, IgM, and gammaglobulin are low. His hematologist says that it should turn itself around with time. The great side effect of all this is that his last two PetScans showed no evidence of disease! He has a Deauville score of 1. As Lori would say “he is unremarkable”!!! Next scan is in September. Hoping for the best for you!!

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1 reply
nschlacht | @nschlacht | Jun 30 7:03am
In reply to @valandsheri "Hi! My husband was diagnosed with FL a year and a half ago. This isn’t what..." + (show)
@valandsheri

Hi! My husband was diagnosed with FL a year and a half ago. This isn’t what you asked, but thought I’d join in with you. At diagnosis his bloodwork was all within normal parameters. Five rounds of Rituxan together with four rounds of bendamustine and after that his IgG, IgM, and gammaglobulin are low. His hematologist says that it should turn itself around with time. The great side effect of all this is that his last two PetScans showed no evidence of disease! He has a Deauville score of 1. As Lori would say “he is unremarkable”!!! Next scan is in September. Hoping for the best for you!!

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Thank you so much for sharing your journey and good luck in September. Sounds like your husband had a great response to treatment ! Rituxin/bendamustine appear to be a great combo. Did your husband initially do a Wait and See before this treatment? I may need some help in addition to healthy diet and exercise to boost my immunoglobulins before any treatment. My PET scan is on Wednesday. Hoping for the best.

REPLY
1 reply
nschlacht | @nschlacht | Jun 30 7:14am
In reply to @colleenyoung "Hi @nschlacht, I'm tagging a few other follicular lymphoma members like @valandsheri @quimbie @puddknocker @traceyt @vonbaron36..." + (show)
@colleenyoung

Hi @nschlacht, I'm tagging a few other follicular lymphoma members like @valandsheri @quimbie @puddknocker @traceyt @vonbaron36 @bogie60 @lee59 @susanlim @caracello22 to join this discussion.

If I've calculated correctly, you will have your PET scan next week to help determine the treatment plan. How are you doing?

Jump to this post

My PET scan is on Wednesday morning along with a heme/oncology follow-up later in the day. I’m sure I will find out more about how to address low immunoglobulins before any treatment begins. Thank you for connecting me with others.

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1 reply
valandsheri | @valandsheri | Jul 1 8:43am
In reply to @nschlacht "Thank you so much for sharing your journey and good luck in September. Sounds like your..." + (show)
@nschlacht

Thank you so much for sharing your journey and good luck in September. Sounds like your husband had a great response to treatment ! Rituxin/bendamustine appear to be a great combo. Did your husband initially do a Wait and See before this treatment? I may need some help in addition to healthy diet and exercise to boost my immunoglobulins before any treatment. My PET scan is on Wednesday. Hoping for the best.

Jump to this post

Good morning, he was on Wait and Watch for about a month and a half. It wasn’t that things changed quickly, it was that his FL was in the bone marrow (his PEtCT lit up like a Christmas Tree), he was having some symptoms (back pain and unintentional weight loss) and he was on the edge of possible B cell transformation to the aggressive form of FL. I hope I’m relaying that correctly. He was 75 at that time and in great shape to handle treatment and both he and his hematologist felt treatment was the best route. So far, so good! Good thoughts headed your way - stay in touch!

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2 replies
nschlacht | @nschlacht | Jul 1 3:36pm
In reply to @valandsheri "Good morning, he was on Wait and Watch for about a month and a half. It..." + (show)
@valandsheri

Good morning, he was on Wait and Watch for about a month and a half. It wasn’t that things changed quickly, it was that his FL was in the bone marrow (his PEtCT lit up like a Christmas Tree), he was having some symptoms (back pain and unintentional weight loss) and he was on the edge of possible B cell transformation to the aggressive form of FL. I hope I’m relaying that correctly. He was 75 at that time and in great shape to handle treatment and both he and his hematologist felt treatment was the best route. So far, so good! Good thoughts headed your way - stay in touch!

Jump to this post

Thank you for sharing and I’ll keep in touch.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 5 11:26am
In reply to @nschlacht "My PET scan is on Wednesday morning along with a heme/oncology follow-up later in the day...." + (show)
@nschlacht

My PET scan is on Wednesday morning along with a heme/oncology follow-up later in the day. I’m sure I will find out more about how to address low immunoglobulins before any treatment begins. Thank you for connecting me with others.

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@nschlacht, I hope your appoinments went well and that you learned more about next steps.

REPLY
nschlacht | @nschlacht | Aug 18 2:22pm
In reply to @valandsheri "Good morning, he was on Wait and Watch for about a month and a half. It..." + (show)
@valandsheri

Good morning, he was on Wait and Watch for about a month and a half. It wasn’t that things changed quickly, it was that his FL was in the bone marrow (his PEtCT lit up like a Christmas Tree), he was having some symptoms (back pain and unintentional weight loss) and he was on the edge of possible B cell transformation to the aggressive form of FL. I hope I’m relaying that correctly. He was 75 at that time and in great shape to handle treatment and both he and his hematologist felt treatment was the best route. So far, so good! Good thoughts headed your way - stay in touch!

Jump to this post

Hi there. I’ve been thinking about you and your husband. September is coming soon. Sending you guys lots of positive vibes. My PET scan on July 3 also lit up like a Christmas tree but cancer wasn’t in my bone marrow. Even tho the PET scan did not match my needle biopsy which showed low grade FL my oncologist started me on Chemo-RCHOP. I had my first on July 31 and it wasnt a good start. Prior I had 2 lymph nodes removed for another biopsy that showed FL level 3a. I’m not sure I’m on the right course but for now sticking with it. My second round of chemo is Aug 21 - wish me luck. Keep in touch

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