I am sorry to read that your levels indicate the need for plasmapheresis due to hyperviscosity syndrome. I was diagnosed in 2014 and required plasmapheresis prior to treatments.
If you have not already done so, I recommend that you contact the International Waldenstrom’s Macroglobulinemia Foundation (IWMF). Once you join, they will send you a New Member Packet. Any information you share with them is confidential and the educational materials are available online and, if need be, you can receive paper copies.
I happen to be a support group leader for the MN/W.WI Support Group. I had four different treatments, starting in 2014.
We are all different. The IWMF connects you with the WM community worldwide. Do not hesitate to contact me if you have questions or concerns and need direction.
I find it interesting that this conversation thread ended in November 2023. Is it continued somewhere else? I’ve recently been diagnosed with Waldenstrom + MYD88 and hyperviscosity syndrome. I’ve learned so much from reading everyone’s comments. I was going to be on “watch & wait” but I guess my numbers aren’t looking so good so he wants me to do an Apheresis this week. Would love to know how these folks are all doing today. If not continuing anywhere, I’m grateful for all the info folks shared.
I am sorry to read that your levels indicate the need for plasmapheresis due to hyperviscosity syndrome. I was diagnosed in 2014 and required plasmapheresis prior to treatments.
If you have not already done so, I recommend that you contact the International Waldenstrom’s Macroglobulinemia Foundation (IWMF). Once you join, they will send you a New Member Packet. Any information you share with them is confidential and the educational materials are available online and, if need be, you can receive paper copies.
I happen to be a support group leader for the MN/W.WI Support Group. I had four different treatments, starting in 2014.
We are all different. The IWMF connects you with the WM community worldwide. Do not hesitate to contact me if you have questions or concerns and need direction.
Hello @suznsl, Welcome to Connect. Many of the members in this discussion are still active and I'm hoping they also will welcome you and share experiences and suggestions. You can tag a specific member using their @ member name like I did here for you. To see if a member is active, just click the member profile icon to the left of the post and it will show you when they were last active along with a link to their profile. Click on the image below to see what it looks like.
You can also post any questions you might have to see if others have experience to share with you.
I find it interesting that this conversation thread ended in November 2023. Is it continued somewhere else? I’ve recently been diagnosed with Waldenstrom + MYD88 and hyperviscosity syndrome. I’ve learned so much from reading everyone’s comments. I was going to be on “watch & wait” but I guess my numbers aren’t looking so good so he wants me to do an Apheresis this week. Would love to know how these folks are all doing today. If not continuing anywhere, I’m grateful for all the info folks shared.
Hello @suznsl, Welcome to Connect. Many of the members in this discussion are still active and I'm hoping they also will welcome you and share experiences and suggestions. You can tag a specific member using their @ member name like I did here for you. To see if a member is active, just click the member profile icon to the left of the post and it will show you when they were last active along with a link to their profile. Click on the image below to see what it looks like.
You can also post any questions you might have to see if others have experience to share with you.
I find it interesting that this conversation thread ended in November 2023. Is it continued somewhere else? I’ve recently been diagnosed with Waldenstrom + MYD88 and hyperviscosity syndrome. I’ve learned so much from reading everyone’s comments. I was going to be on “watch & wait” but I guess my numbers aren’t looking so good so he wants me to do an Apheresis this week. Would love to know how these folks are all doing today. If not continuing anywhere, I’m grateful for all the info folks shared.
Hi Colleen, I see that you referenced me as “Watch & See” for Waldenstrom disease. I have been undergoing chemo since August 2023. Treatments are consecutive days once every 4 weeks with Rituximab and Bendamustine. Also receive IVIG infusion of Octagam every 4 weeks for immunodeficiency.
Still undergoing treatments as of this posting.
Cheers
I have been seeing an oncologist twice a year for my watch since 2010.
So far I feel very blessed. My heart condition is of more concern. I’m 81 yrs old.
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I’m thankful you joined the IWMF for access to their resources and support.
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2 ReactionsThank you! I did recently join the IWMF community. Appreciate your info and advice.
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2 ReactionsI am sorry to read that your levels indicate the need for plasmapheresis due to hyperviscosity syndrome. I was diagnosed in 2014 and required plasmapheresis prior to treatments.
If you have not already done so, I recommend that you contact the International Waldenstrom’s Macroglobulinemia Foundation (IWMF). Once you join, they will send you a New Member Packet. Any information you share with them is confidential and the educational materials are available online and, if need be, you can receive paper copies.
I happen to be a support group leader for the MN/W.WI Support Group. I had four different treatments, starting in 2014.
We are all different. The IWMF connects you with the WM community worldwide. Do not hesitate to contact me if you have questions or concerns and need direction.
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6 ReactionsThank you so much for the tips!
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1 ReactionHello @suznsl, Welcome to Connect. Many of the members in this discussion are still active and I'm hoping they also will welcome you and share experiences and suggestions. You can tag a specific member using their @ member name like I did here for you. To see if a member is active, just click the member profile icon to the left of the post and it will show you when they were last active along with a link to their profile. Click on the image below to see what it looks like.
You can also post any questions you might have to see if others have experience to share with you.
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Like -
Helpful -
Hug
3 ReactionsI find it interesting that this conversation thread ended in November 2023. Is it continued somewhere else? I’ve recently been diagnosed with Waldenstrom + MYD88 and hyperviscosity syndrome. I’ve learned so much from reading everyone’s comments. I was going to be on “watch & wait” but I guess my numbers aren’t looking so good so he wants me to do an Apheresis this week. Would love to know how these folks are all doing today. If not continuing anywhere, I’m grateful for all the info folks shared.
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2 ReactionsWhat is this disease and what is the watch and wait?
Hi Colleen, I see that you referenced me as “Watch & See” for Waldenstrom disease. I have been undergoing chemo since August 2023. Treatments are consecutive days once every 4 weeks with Rituximab and Bendamustine. Also receive IVIG infusion of Octagam every 4 weeks for immunodeficiency.
Still undergoing treatments as of this posting.
Cheers
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3 ReactionsYes, it seems like other parts of the body begin declining also.
I see her every 3 months. My Chronic Kidney Disease is my concern. I am 83
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