Hi, I have had M.M. for almost a year now. . I do not know what happens I am in a remission now.
Charlotte
Hi scot, I do not understand why part of my post was taken away I said I was paralyzed by velcad shot.
Hi Charlotte, and welcome, most of us here are patients and came here for help. I have been a patient since June of 2011 and still am not in remission so you are one of the lucky one's Maybe. I think your other post is in another discussion AWOL with Leslie. Has your doc stopped all treatment and did they discuss a stem cell transplant with you. That may be the next step to make the results last. Has remission come from just velcade or did you also receive dexamethasone or revlimid. I have had all of the above, the stem cell was done in January and my expert started me on aggressive maintenance therapy in February for 11 months. I just now am pushing the threshold for remission, I hope. I do not know the latest test results as they were just done on Friday. I know that no matter what they should do blood work on a regular basis and watch you closely. Allow nothing less as you are the boss. There are many stories here, explore and read Learn from others. Some of the stories are scary while others encourage but most importantly for you is that all are educational. MM is unique to each person and reacts differently for each one of us. Teach yourself so you know if your doctors are being prudent, learn the symptoms for each of us so you can watch yourself. Be prepared to get scared as this is a scaring unrelenting illness. For me I know the treatments will most likely never end at least that is how it feels, Gods grace has carried me thus far. I have found that through remembering the good days that it helps with the bad ones. Lately it seems like all I have is bad ones but compared to others mine are still good. I feel like I need to change my expectations for each day, time will tell. Be strong and continue the fight.
Your friend and fellow patient
Rodney
God Bless you Rodney, Yes I was on Revlimid also along with velcade , It was the velcade that paralyzed my legs, This I know from my cancer Dr. this was one of the side effects of it. I am looking forward to learn a lot from this sight. I know that some of it will be scary because this is a scary disease. But I do appreciate all your input. God Bless you Rodney
Charlotte
Hi char and rodney - I have only made an initial post and wondered if this site was all that active. My MM has been a nightmare including velcade foot paralysis and in and out of remission. Currently, I am in relapse and on chemo -Alkoran. Nice to know there are others out there! Best wishes. Bob
bob said:
Hi char and rodney - I have only made an initial post and wondered if this site was all that active. My MM has been a nightmare including velcade foot paralysis and in and out of remission. Currently, I am in relapse and on chemo -Alkoran. Nice to know there are others out there! Best wishes. Bob
Char said:
bob said:Hi char and rodney - I have only made an initial post and wondered if this site was all that active. My MM has been a nightmare including velcade foot paralysis and in and out of remission. Currently, I am in relapse and on chemo -Alkoran. Nice to know there are others out there! Best wishes. Bob
Bob. so foot paralysis are you doing therapy? I have found therapy helps I am paralysis from the waist down.
bob said:
Hi char and rodney - I have only made an initial post and wondered if this site was all that active. My MM has been a nightmare including velcade foot paralysis and in and out of remission. Currently, I am in relapse and on chemo -Alkoran. Nice to know there are others out there! Best wishes. Bob
Char said:
Bob. so foot paralysis are you doing therapy? I have found therapy helps I am paralysis from the waist down.
Char said:
Char said:Bob. so foot paralysis are you doing therapy? I have found therapy helps I am paralysis from the waist down.
The way I understand MM?..it that is is never truly in remission. If your Kappa Light Chain is under 100,then you do not need treatment. Some doctors call it as in remission if the numbers are under 100- 200.
rodney said:
Hi Charlotte, and welcome, most of us here are patients and came here for help. I have been a patient since June of 2011 and still am not in remission so you are one of the lucky one’s Maybe. I think your other post is in another discussion AWOL with Leslie. Has your doc stopped all treatment and did they discuss a stem cell transplant with you. That may be the next step to make the results last. Has remission come from just velcade or did you also receive dexamethasone or revlimid. I have had all of the above, the stem cell was done in January and my expert started me on aggressive maintenance therapy in February for 11 months. I just now am pushing the threshold for remission, I hope. I do not know the latest test results as they were just done on Friday. I know that no matter what they should do blood work on a regular basis and watch you closely. Allow nothing less as you are the boss. There are many stories here, explore and read Learn from others. Some of the stories are scary while others encourage but most importantly for you is that all are educational. MM is unique to each person and reacts differently for each one of us. Teach yourself so you know if your doctors are being prudent, learn the symptoms for each of us so you can watch yourself. Be prepared to get scared as this is a scaring unrelenting illness. For me I know the treatments will most likely never end at least that is how it feels, Gods grace has carried me thus far. I have found that through remembering the good days that it helps with the bad ones. Lately it seems like all I have is bad ones but compared to others mine are still good. I feel like I need to change my expectations for each day, time will tell. Be strong and continue the fight.
Your friend and fellow patient
Rodney
Hi Char. - I apologize for taking so long to reply. Had trouble negotiating this website! I have had severe peripheral neuropathy in my feet since March, 2012, due to Velcade. I also had extreme pain in my right leg and could not move. I was hospitalized for several months including PT - inpatient, at home, and outpatient, since. I have drop foot in my left foot and use a wheelchair or walk with AFO’s and cane. My balance is poor but getting better, between Chemo sessions.
My heart goes out to you regarding your paralysis. Let me know if I can help in any way. Best wishes, Bob
bob said:
Hi Char. - I apologize for taking so long to reply. Had trouble negotiating this website! I have had severe peripheral neuropathy in my feet since March, 2012, due to Velcade. I also had extreme pain in my right leg and could not move. I was hospitalized for several months including PT - inpatient, at home, and outpatient, since. I have drop foot in my left foot and use a wheelchair or walk with AFO's and cane. My balance is poor but getting better, between Chemo sessions.
My heart goes out to you regarding your paralysis. Let me know if I can help in any way. Best wishes, Bob
Hi Bob, well I have shingles on the right side of my head all the way down to my waist no open sores but just bumps that itch. I also have neuropathy on both legs from feet to hips .I am in remission but I am unable to walk greeeeeeeeeeeeee.
Char said:
bob said:Hi Char. - I apologize for taking so long to reply. Had trouble negotiating this website! I have had severe peripheral neuropathy in my feet since March, 2012, due to Velcade. I also had extreme pain in my right leg and could not move. I was hospitalized for several months including PT - inpatient, at home, and outpatient, since. I have drop foot in my left foot and use a wheelchair or walk with AFO's and cane. My balance is poor but getting better, between Chemo sessions.
My heart goes out to you regarding your paralysis. Let me know if I can help in any way. Best wishes, Bob
Trial
Can’t seem to be able to send messages. Will try when I have more patience
bob said:
Can't seem to be able to send messages. Will try when I have more patience
That's ok I will look for your post latter. God Bless.
Char said:
bob said:Can't seem to be able to send messages. Will try when I have more patience
Bob if you are trying to send an email to Char she must be in your friends list, posting on the blog or discussion can be done by typing in the reply box and then adding the reply by pressing the add button on bottom right. Your reply's are being posted so you are doing the correct thing here. I hope all is well and you are feeling better, I would suspect that you are working through the fog that some of the meds can cause. If you need more help please ask and I will try to assist you, just remember that I also am a patient and under treatment.
God Bless
Rodney