It may be the best option, instead of some protocol that damages your health only to fail to cure. The notion of using cart t cell therapy as a last resort seems cruel when it gives the best remission rates.Has anyone heard of Thraxton HDL nanoparticles?? It's suppose to attach to HDL that feeds cancer and starves the cancer WITHOUT chemotherapy.
I have just been diagnosed with WM and am on a watch and wait as well. I've been referred to have a pet scan by my hematologist. I do not have symptoms now. It is a scary feeling not knowing what to expect. I'll be following this group to keep in touch with what others are experiencing. I know that diet has not much influence on this diagnosis but am interested to hear how others have managed or altered their diets, if at all. Thanks!
Hi,so glad to read your note. I have also just been diagnosed with WM and have so many ups and downs.
I am experiencing tingling in hands,however I am mostly concerned about the thickening of the blood and the complications that could result from it!
I can not really offer any information,as I was just diagnosed 3weeks ago. Hope to hear from others. Thank you
I have just been diagnosed with WM and am on a watch and wait as well. I've been referred to have a pet scan by my hematologist. I do not have symptoms now. It is a scary feeling not knowing what to expect. I'll be following this group to keep in touch with what others are experiencing. I know that diet has not much influence on this diagnosis but am interested to hear how others have managed or altered their diets, if at all. Thanks!
Thank you for reaching out for support. WM is a very rare blood cancer. While it can be an overwhelming diagnosis, there are treatment options and hope. I was diagnosed with Waldenstrom’s Macroglobulinemia in 2014 and was immediately referred to a WM specialist at Mayo to coordinate my care with my Mayo Rochester specialist.
I contacted the International Waldenstrom’s Macroglobulinemia Foundation, I.W.M.F., for support and amazing educational resources. If you go to the following website: https://iwmf.com/join-the-iwmf/#
you can then click on the JOIN button. You will receive a new member packet with invaluable WM information.
Hi,so glad to read your note. I have also just been diagnosed with WM and have so many ups and downs.
I am experiencing tingling in hands,however I am mostly concerned about the thickening of the blood and the complications that could result from it!
I can not really offer any information,as I was just diagnosed 3weeks ago. Hope to hear from others. Thank you
Since you are experiencing tingling in your hands, you may want to contact the IWMF’s LIFELINE resource and contact a volunteer for Peripheral Neuropathy. The IWMF also provides worldwide support groups and you can join more than one. May I ask if you are experiencing more symptoms?
Thank you for reaching out for support. WM is a very rare blood cancer. While it can be an overwhelming diagnosis, there are treatment options and hope. I was diagnosed with Waldenstrom’s Macroglobulinemia in 2014 and was immediately referred to a WM specialist at Mayo to coordinate my care with my Mayo Rochester specialist.
I contacted the International Waldenstrom’s Macroglobulinemia Foundation, I.W.M.F., for support and amazing educational resources. If you go to the following website: https://iwmf.com/join-the-iwmf/#
you can then click on the JOIN button. You will receive a new member packet with invaluable WM information.
Since you are experiencing tingling in your hands, you may want to contact the IWMF’s LIFELINE resource and contact a volunteer for Peripheral Neuropathy. The IWMF also provides worldwide support groups and you can join more than one. May I ask if you are experiencing more symptoms?
Since I am very new to this, I was hesitant to or not sure what I felt applied to WM. After reading information given to me by my Dr. ,I realized I also have Reynaud's. I did not associate this with WM,as I have had this for some time and was told " nothing"could be done ,but never thinking it would be connected to WM,or was serious.
Ignorance is bliss,I guess since I did not pursue more information on this.
I thank everyone for responding and for assuring me I am not alone.
Thank you for reaching out for support. WM is a very rare blood cancer. While it can be an overwhelming diagnosis, there are treatment options and hope. I was diagnosed with Waldenstrom’s Macroglobulinemia in 2014 and was immediately referred to a WM specialist at Mayo to coordinate my care with my Mayo Rochester specialist.
I contacted the International Waldenstrom’s Macroglobulinemia Foundation, I.W.M.F., for support and amazing educational resources. If you go to the following website: https://iwmf.com/join-the-iwmf/#
you can then click on the JOIN button. You will receive a new member packet with invaluable WM information.
Since you are experiencing tingling in your hands, you may want to contact the IWMF’s LIFELINE resource and contact a volunteer for Peripheral Neuropathy. The IWMF also provides worldwide support groups and you can join more than one. May I ask if you are experiencing more symptoms?
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It may be the best option, instead of some protocol that damages your health only to fail to cure. The notion of using cart t cell therapy as a last resort seems cruel when it gives the best remission rates.Has anyone heard of Thraxton HDL nanoparticles?? It's suppose to attach to HDL that feeds cancer and starves the cancer WITHOUT chemotherapy.
I have just been diagnosed with WM and am on a watch and wait as well. I've been referred to have a pet scan by my hematologist. I do not have symptoms now. It is a scary feeling not knowing what to expect. I'll be following this group to keep in touch with what others are experiencing. I know that diet has not much influence on this diagnosis but am interested to hear how others have managed or altered their diets, if at all. Thanks!
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3 ReactionsHi,so glad to read your note. I have also just been diagnosed with WM and have so many ups and downs.
I am experiencing tingling in hands,however I am mostly concerned about the thickening of the blood and the complications that could result from it!
I can not really offer any information,as I was just diagnosed 3weeks ago. Hope to hear from others. Thank you
-
Like -
Helpful -
Hug
2 ReactionsThank you for reaching out for support. WM is a very rare blood cancer. While it can be an overwhelming diagnosis, there are treatment options and hope. I was diagnosed with Waldenstrom’s Macroglobulinemia in 2014 and was immediately referred to a WM specialist at Mayo to coordinate my care with my Mayo Rochester specialist.
I contacted the International Waldenstrom’s Macroglobulinemia Foundation, I.W.M.F., for support and amazing educational resources. If you go to the following website: https://iwmf.com/join-the-iwmf/#
you can then click on the JOIN button. You will receive a new member packet with invaluable WM information.
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Like -
Helpful -
Hug
5 ReactionsSince you are experiencing tingling in your hands, you may want to contact the IWMF’s LIFELINE resource and contact a volunteer for Peripheral Neuropathy. The IWMF also provides worldwide support groups and you can join more than one. May I ask if you are experiencing more symptoms?
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3 ReactionsThank you so much for sharing your experience. I have joined the I.W.M.F and look forward to educating myself .
Appreciate your prompt response!
.
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5 ReactionsSince I am very new to this, I was hesitant to or not sure what I felt applied to WM. After reading information given to me by my Dr. ,I realized I also have Reynaud's. I did not associate this with WM,as I have had this for some time and was told " nothing"could be done ,but never thinking it would be connected to WM,or was serious.
Ignorance is bliss,I guess since I did not pursue more information on this.
I thank everyone for responding and for assuring me I am not alone.
Take are to all!
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4 ReactionsThank you for the information,I will pursue.
Thank you,thank you! Please excuse any errors in responding, trying to figure out the system.
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1 ReactionI did join today. Thank you for the info!
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3 ReactionsYou are so welcome, it is such a comfort to be able to communicate with others!😇
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