Forums
3 posts
• Page 1 of 1
Father was diagnosed with multiple myeloma
Hi Everyone My name is Renee and My father was diagnosed in july 2013 with multiple myeloma we have no Idea what to do My father weighed 178 in May 2013 he is currently at 124 he started Revlimid on August 18, 2013 and was on that for three days and had a MRI with the die and went into renial failure one day after that his does of Revilmid is 5mg and he does dialysis three days a week when he started his kidney were at 5% to date they are working at 27% he has so much back pain and does not eat well everything taste bad to him we Give him ensure with his meals but doesnt seem to help I dont have any idea what questions to ask his doctors please we are desperate to help our Dad. He has started to forget things which is not like him we think he might be depressed we have moved him out of his house and into our sisters house because he wont eat so now we cook all of his meals and do his meds for him.......we feel so lost and stupid cause we dont know what to ask and we don't know if doctors are being straight with us. We dont understand what any of his blood work means. any help would be great
-
reneupstateny - Name: Rene
- Who do you know with myeloma?: My Father
- When were you/they diagnosed?: July 9 2013
- Age at diagnosis: 70
Re: Father was diagnosed with multiple myeloma
Renee: I'm so sorry to hear about your Dad, but glad you reached out to this forum.
The most important thing you can be doing is to work with a specialist that is focused on mutliple myeloma. Most of these multiple myeloma specialists are very open and will be honest with you.
If he is truly only on Revlimid and nothing else, there are several other drugs that can be added to the Revlimid to make it more effective. There are also different combinations of other drugs that can be used if he is not responding to his current chemo. There are also drugs that can help with any bone damage and pain that he may have as a result of the multiple myleoma (he may have fractures in his spine if he has a lot of back pain? The MRI results would tell you this).
Many of the general purpose cancer specialists just aren't that aware of all the multiple myeloma treatment options that exist today.
If you let us know what part of the country you are in, the folks on the forum might be able to give you some advice on where to find multiple myeloma specialists in your area.
The most important thing you can be doing is to work with a specialist that is focused on mutliple myeloma. Most of these multiple myeloma specialists are very open and will be honest with you.
If he is truly only on Revlimid and nothing else, there are several other drugs that can be added to the Revlimid to make it more effective. There are also different combinations of other drugs that can be used if he is not responding to his current chemo. There are also drugs that can help with any bone damage and pain that he may have as a result of the multiple myleoma (he may have fractures in his spine if he has a lot of back pain? The MRI results would tell you this).
Many of the general purpose cancer specialists just aren't that aware of all the multiple myeloma treatment options that exist today.
If you let us know what part of the country you are in, the folks on the forum might be able to give you some advice on where to find multiple myeloma specialists in your area.
Last edited by Multibilly on Wed Nov 13, 2013 2:50 pm, edited 1 time in total.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Father was diagnosed with multiple myeloma
Hi Renee,
I just registered on this site today. My Dad was diagnosed with Stage 3 multiple myeloma in July of this year as well. He too, has gone into kidney failure and is now dialysis dependent three times a week. I was hoping to find others in this same situation as his spirits are pretty low right now.
I really have no words of wisdom for you. This is definitely a nightmare. I am just learning all about protein levels and creatinine myself. I just wanted to let you know that you are not alone. There are many people available to help. Please find an oncologist with specializes in multiple myeloma. My Dad is 78 and on Velcade. They were going to add in the Revlimid but once he went into kidney failure they decided not to. We also had a consultation with specialists at the Cleveland Clinic. They were wonderful.
My big thing right now is making sure that my Dad's kidney doctor and oncologist speak to each other more often to insure his treatments are complimentary of each other.
Also, reach out to your local American Cancer Society. They have loads of resources for you.
I wish you and your family the best.
Pam
I just registered on this site today. My Dad was diagnosed with Stage 3 multiple myeloma in July of this year as well. He too, has gone into kidney failure and is now dialysis dependent three times a week. I was hoping to find others in this same situation as his spirits are pretty low right now.
I really have no words of wisdom for you. This is definitely a nightmare. I am just learning all about protein levels and creatinine myself. I just wanted to let you know that you are not alone. There are many people available to help. Please find an oncologist with specializes in multiple myeloma. My Dad is 78 and on Velcade. They were going to add in the Revlimid but once he went into kidney failure they decided not to. We also had a consultation with specialists at the Cleveland Clinic. They were wonderful.
My big thing right now is making sure that my Dad's kidney doctor and oncologist speak to each other more often to insure his treatments are complimentary of each other.
Also, reach out to your local American Cancer Society. They have loads of resources for you.
I wish you and your family the best.
Pam
-
PamT - Name: PamT
- Who do you know with myeloma?: My Dad
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 78
3 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories