Anyone diagnosed with Primary Central Nervous System (CNS) Lymphoma?

Posted by clavallee2 @clavallee2, Dec 18, 2019

Any one been diagnosed with Primary Central nervous system lymphoma?

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@kbaron

Hi, I would love to get in contact. I have a family member who has recently been diagnosed with CNS Primary Large B Cell Lymphoma and we are researching all forms of treatment.

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Hi @kbaron, how is your family member doing? Have you decided on a treatment path?

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I was diagnosed with primary CNSLymphoma in 2019. I went through 6 rounds of MRT chemo, then stem cell transplant. I have fully recovered. I pray the same for you. Have you seen LLS.org? It is a helpful website with an abundance of resources.

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@mepowers

I’d be happy to talk with you or email. You can send me your contact info, or we can correspond over private message.
Regards,
Marci

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Hi @mepowers, that is kind of you to share with @kbaron by email. It's best to share contact information by using the secure private message function rather than posting emails in the public forum. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.

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@kbaron

Hi, I would love to get in contact. I have a family member who has recently been diagnosed with CNS Primary Large B Cell Lymphoma and we are researching all forms of treatment.

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I’d be happy to talk with you or email. You can send me your contact info, or we can correspond over private message.
Regards,
Marci

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@mepowers

Hi @clavallee2, I am in remission but had Large B cell CNS Lymphoma. I had three different treatments. I had Rutiximab which is a biologic for 8 treatments, high dose methotrexate which is an infused Chemo and Temodar which is an oral Chemo. The high dose Methotrexate had to be administered in the hospital which was a four day stay every time it was administered. I’d be happy to answer any questions you have about my experiences. I’m three years in remission this month. Two more years, and they call me cured.

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Hi, I would love to get in contact. I have a family member who has recently been diagnosed with CNS Primary Large B Cell Lymphoma and we are researching all forms of treatment.

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@colleenyoung

Any update, @shellcat25? Did he have his consult?

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Yes it’s scheduled for the first part of September!

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@shellcat25

Hello! We received a phone call from Mayo. He’s been approved!! Now waiting for Insurance to approve the consultation. Then we will run down to AZ. Very excited to this next step. Thanks for checking in.

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Any update, @shellcat25? Did he have his consult?

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@colleenyoung

Hi @shellcat25, I thought I'd check in. Did you and your husband decide to get an appointment at Mayo Clinic in Arizona? How are you both doing?

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Hello! We received a phone call from Mayo. He’s been approved!! Now waiting for Insurance to approve the consultation. Then we will run down to AZ. Very excited to this next step. Thanks for checking in.

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@shellcat25

Scottsdale would be best for us. Yes, we’d love any suggestions! Thank you!

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Hi @shellcat25, I thought I'd check in. Did you and your husband decide to get an appointment at Mayo Clinic in Arizona? How are you both doing?

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@loribmt

Hi @shellcat25 You and your husband have been on quite a journey already. When you’re ready for the next step of the stem cell transplant at Mayo, there are a number of us willing to share our experiences to make that adventure easier for you with tips and suggestions for lodging, favorite/necessary items to have for the lengthy stay, requirements for post SCT, etc..
Which campus will your husband be visiting?

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Scottsdale would be best for us. Yes, we’d love any suggestions! Thank you!

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