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Old 06-20-2011, 08:03 AM #1
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Gyrene Gyrene is offline
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Thumbs up Sudden onset of PN

I too had that "sudden" onset of PN, but at the time, it was confined to my feet. Just started hurting one morning when I got up. Felt like I was standing on crushed shell.
Several tries with different foot doctors produced a variety of conclusions, none of which worked.
Finally went to a neuro, and he diagnosed it as PN, but said that he wanted to sent me to a hematologist. Kind of surprised, but went anyway.
After some testing, and a bone biopsy, he told me that I had CANCER. Yup, kinda threw me for a loop.
Turned out that I had what is called Waldenstroms Macroglobulinemia. I have a hard time even trying to remember how to spell the darn thing.
Anyway, I have a bad white blood cell that refuses to die, and keeps reproducing itself. You're supposed to have about 350 in your bloodstream at any given time, and I had over 8,000. No more room for red blood cells, so I was also anemic at the same time. The WM is not curable, but thankfully it is treatable. Life expectancy is 5 to 7 years, but some have lived for 10, and even 15 years. Only the Good Lord knows, but that's good enough for me.
I have been on Rituxan infusion every three months now for about two years, and the bad cell count is now down to about 2,000, and falling.
As was hoped, the PN is sort of tracking the WM. As the bad cell count falls, the PM backs off as well. It still gives my feel hell, and there's one finger that still fells like it is always asleep, but the majority of the real pain has diminished quite a lot. I still have trouble if I walk too much, but my neuro has put me on a locally formulated product to use as a foot rub. It contains several products, all of which are geared to reducing PN pain.
I hope you find the answers you seek, and that they lead you in a direction that corrals all your fears. Semper Fi
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"Thanks for this!" says:
mrsD (06-21-2011)
Old 06-21-2011, 02:15 AM #2
Rosie33 Rosie33 is offline
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Rosie33 Rosie33 is offline
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Quote:
Originally Posted by Gyrene View Post
I too had that "sudden" onset of PN, but at the time, it was confined to my feet. Just started hurting one morning when I got up. Felt like I was standing on crushed shell.
Several tries with different foot doctors produced a variety of conclusions, none of which worked.
Finally went to a neuro, and he diagnosed it as PN, but said that he wanted to sent me to a hematologist. Kind of surprised, but went anyway.
After some testing, and a bone biopsy, he told me that I had CANCER. Yup, kinda threw me for a loop.
Turned out that I had what is called Waldenstroms Macroglobulinemia. I have a hard time even trying to remember how to spell the darn thing.
Anyway, I have a bad white blood cell that refuses to die, and keeps reproducing itself. You're supposed to have about 350 in your bloodstream at any given time, and I had over 8,000. No more room for red blood cells, so I was also anemic at the same time. The WM is not curable, but thankfully it is treatable. Life expectancy is 5 to 7 years, but some have lived for 10, and even 15 years. Only the Good Lord knows, but that's good enough for me.
I have been on Rituxan infusion every three months now for about two years, and the bad cell count is now down to about 2,000, and falling.
As was hoped, the PN is sort of tracking the WM. As the bad cell count falls, the PM backs off as well. It still gives my feel hell, and there's one finger that still fells like it is always asleep, but the majority of the real pain has diminished quite a lot. I still have trouble if I walk too much, but my neuro has put me on a locally formulated product to use as a foot rub. It contains several products, all of which are geared to reducing PN pain.
I hope you find the answers you seek, and that they lead you in a direction that corrals all your fears. Semper Fi
I'm sorry for all your troubles, but I'm happy you found the problem and you are staying on top of it. I would be interested to know what the foot rub product is that you are using. Stay positive and God bless.....
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Old 06-24-2011, 02:12 AM #3
DVCal DVCal is offline
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Quote:
Originally Posted by Gyrene View Post
I too had that "sudden" onset of PN, but at the time, it was confined to my feet. Just started hurting one morning when I got up. Felt like I was standing on crushed shell.
Several tries with different foot doctors produced a variety of conclusions, none of which worked.
Finally went to a neuro, and he diagnosed it as PN, but said that he wanted to sent me to a hematologist. Kind of surprised, but went anyway.
After some testing, and a bone biopsy, he told me that I had CANCER. Yup, kinda threw me for a loop.
Turned out that I had what is called Waldenstroms Macroglobulinemia. I have a hard time even trying to remember how to spell the darn thing.
Anyway, I have a bad white blood cell that refuses to die, and keeps reproducing itself. You're supposed to have about 350 in your bloodstream at any given time, and I had over 8,000. No more room for red blood cells, so I was also anemic at the same time. The WM is not curable, but thankfully it is treatable. Life expectancy is 5 to 7 years, but some have lived for 10, and even 15 years. Only the Good Lord knows, but that's good enough for me.
I have been on Rituxan infusion every three months now for about two years, and the bad cell count is now down to about 2,000, and falling.
As was hoped, the PN is sort of tracking the WM. As the bad cell count falls, the PM backs off as well. It still gives my feel hell, and there's one finger that still fells like it is always asleep, but the majority of the real pain has diminished quite a lot. I still have trouble if I walk too much, but my neuro has put me on a locally formulated product to use as a foot rub. It contains several products, all of which are geared to reducing PN pain.
I hope you find the answers you seek, and that they lead you in a direction that corrals all your fears. Semper Fi
WOW, You must be a strong person to be keeping it all together. I hope they find a treatment to rid your body of this cancer before it is too late. Don't give up hope.
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Old 01-06-2012, 10:49 AM #4
grete grete is offline
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grete grete is offline
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Quote:
Originally Posted by Gyrene View Post
I too had that "sudden" onset of PN, but at the time, it was confined to my feet. Just started hurting one morning when I got up. Felt like I was standing on crushed shell.
Several tries with different foot doctors produced a variety of conclusions, none of which worked.
Finally went to a neuro, and he diagnosed it as PN, but said that he wanted to sent me to a hematologist. Kind of surprised, but went anyway.
After some testing, and a bone biopsy, he told me that I had CANCER. Yup, kinda threw me for a loop.
Turned out that I had what is called Waldenstroms Macroglobulinemia. I have a hard time even trying to remember how to spell the darn thing.
Anyway, I have a bad white blood cell that refuses to die, and keeps reproducing itself. You're supposed to have about 350 in your bloodstream at any given time, and I had over 8,000. No more room for red blood cells, so I was also anemic at the same time. The WM is not curable, but thankfully it is treatable. Life expectancy is 5 to 7 years, but some have lived for 10, and even 15 years. Only the Good Lord knows, but that's good enough for me.
I have been on Rituxan infusion every three months now for about two years, and the bad cell count is now down to about 2,000, and falling.
As was hoped, the PN is sort of tracking the WM. As the bad cell count falls, the PM backs off as well. It still gives my feel hell, and there's one finger that still fells like it is always asleep, but the majority of the real pain has diminished quite a lot. I still have trouble if I walk too much, but my neuro has put me on a locally formulated product to use as a foot rub. It contains several products, all of which are geared to reducing PN pain.
I hope you find the answers you seek, and that they lead you in a direction that corrals all your fears. Semper Fi
Hello,

I'm so sorry to hear that you've been dx with WM.

I had a sudden onset of peripheral neuropathy in both feet in Oct 2010 and was also diagnosed with cancer (Waldenstroms Macroglobulinemia) 6 weeks later. My PN is severe. I can't wear shoes and I can only be on my feet for an hour a day.

1) Would you be able to clarify somewhat ... "bad white blood cell that refuses to die, and keeps reproducing itself". What kind of "blood cell"? You had over 8,000 of something (?). What something? What is the unit? Are you talking about IgM? Was your IgM level 8,000 mg/dl??

2) I suppose you, like me, had chemotherapy first and then Ritux maintenance (you say every 3 months). This is important to me: at what point in time did the PN get a bit better. Was it during chemotherapy or much later??

By the way, the life expectancy of WM is now 12 years - it was 5-7 years a few years ago. New treatments (e.g. using Rituximab in the chemo combo) has extended the life expectancy.

Take care,
Grete
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