This is going to be a little short, but my father, 67, was just diagnosed with a very aggressive form of myeloma in October with p53 deletion.
He is not well and had a severe reaction to the Revlimid, and they just started him now on thalidomide with his chemo. My mother, who also has breast cancer, is not doing well and is overwhelmed.
I please need some guidance from someone who has gone through a similar experience, my mother needs some guidance.
Thank you
Forums
6 posts
• Page 1 of 1
Re: Experiences with p53 deletion
Hi Chivonne,
So sorry to hear what is going on here with your dad.
First off, I'm not a doctor, so please verify all this with one.
"p53" is a gene locus that controls some pretty important functions in a cell's lifecycle. It is located in a region of ones' chromosomes known as 17p13. So, p53 is often absent when one has a 17p deletion (also known as del 17p). You can find a lot of articles on the web and in the Beacon related to the 17p deletion.
It can be harder to treat a patient with del 17p, but that doesn't mean it's impossible.
Note that there have been some studies that have shown that thalidomide may not be that effective for treating del 17p patients. For example,
PL Bergsagel et al, "Improving overall survival and overcoming adverse prognosis in the treatment of cytogenetically high-risk multiple myeloma," Blood, Feb 7 2013 (full text)
But there has been some positive news for del 17p patients who have used Pomalyst (Pomalyst is in the same family of drugs as thalidomide and Revlimid).
"Additional Analyses Of Pomalyst Plus Low-Dose Dexamethasone Studies Presented At ASH 2013," The Myeloma Beacon, Jan 6 2014.
There are also other drugs and drug "cocktails" to consider, but a multiple myeloma specialist should really be recommending any new drug to consider, including something like Pomalyst.
Is your dad working with a doctor that specializes exclusively in multiple myeloma? This is probably the single most important thing that your dad can be doing at this time, especially with a high-risk form of multiple myeloma.
So sorry to hear what is going on here with your dad.
First off, I'm not a doctor, so please verify all this with one.
"p53" is a gene locus that controls some pretty important functions in a cell's lifecycle. It is located in a region of ones' chromosomes known as 17p13. So, p53 is often absent when one has a 17p deletion (also known as del 17p). You can find a lot of articles on the web and in the Beacon related to the 17p deletion.
It can be harder to treat a patient with del 17p, but that doesn't mean it's impossible.
Note that there have been some studies that have shown that thalidomide may not be that effective for treating del 17p patients. For example,
PL Bergsagel et al, "Improving overall survival and overcoming adverse prognosis in the treatment of cytogenetically high-risk multiple myeloma," Blood, Feb 7 2013 (full text)
But there has been some positive news for del 17p patients who have used Pomalyst (Pomalyst is in the same family of drugs as thalidomide and Revlimid).
"Additional Analyses Of Pomalyst Plus Low-Dose Dexamethasone Studies Presented At ASH 2013," The Myeloma Beacon, Jan 6 2014.
There are also other drugs and drug "cocktails" to consider, but a multiple myeloma specialist should really be recommending any new drug to consider, including something like Pomalyst.
Is your dad working with a doctor that specializes exclusively in multiple myeloma? This is probably the single most important thing that your dad can be doing at this time, especially with a high-risk form of multiple myeloma.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Experiences with p53 deletion
Thank you so much for your reply. My dad is working with a myeloma specialist at Roswell Park in Buffalo, NY. He had a bad reaction to the Revlimid and they are trying the the other drug.
I will let my mom see your reply. We are just very stressed over this and my dad is very sick right now. Anyone to talk to about this is comforting because we know no one who has gone through this.
I will let my mom see your reply. We are just very stressed over this and my dad is very sick right now. Anyone to talk to about this is comforting because we know no one who has gone through this.
Re: Experiences with p53 deletion
My mother and father met with his doctor yesterday, not very promising. He has been in kidney failure since October and that is hindering his treatment as well.
I feel I have lost all hope, and now all we do is cry. This is a horrible disease and has taken everything out of my father, who just cries now. It is horrible when you have to watch the strongest man you have known grow so weak with disease.
I am praying for a miracle.
I feel I have lost all hope, and now all we do is cry. This is a horrible disease and has taken everything out of my father, who just cries now. It is horrible when you have to watch the strongest man you have known grow so weak with disease.
I am praying for a miracle.
Re: Experiences with p53 deletion
Chivonne,
I'm so sorry to hear that this is going on. I feel for you and your family.
I might suggest a consult with a different institution and specialist. I am still a bit concerned that the doc is recommending thalidomide at this stage (but I am not a doctor, nor do I understand the bigger treatment picture here, so this may in fact be the right choice under the circumstances).
But different specialists and institutions can have quite different approaches to the exact same challenge. Memorial Sloan Kettering is one institution in NY that comes to mind, but I'm not that familiar with what other institution would be closest to Buffalo, NY.
I'm so sorry to hear that this is going on. I feel for you and your family.
I might suggest a consult with a different institution and specialist. I am still a bit concerned that the doc is recommending thalidomide at this stage (but I am not a doctor, nor do I understand the bigger treatment picture here, so this may in fact be the right choice under the circumstances).
But different specialists and institutions can have quite different approaches to the exact same challenge. Memorial Sloan Kettering is one institution in NY that comes to mind, but I'm not that familiar with what other institution would be closest to Buffalo, NY.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Experiences with p53 deletion
Thank you, my mother was in contact with the cancer institute of Arkansas, but my father is too weak to travel.
I will be going with them to their next appointment, and I am going to tell them if the thalidomide does not work to try the Revlimid again with a strict regimen of antihistamines. Not that I am a doctor, but I was reading people with reactions to this have done better combining it with antihistamines.
I am just hoping something works.
I will be going with them to their next appointment, and I am going to tell them if the thalidomide does not work to try the Revlimid again with a strict regimen of antihistamines. Not that I am a doctor, but I was reading people with reactions to this have done better combining it with antihistamines.
I am just hoping something works.
6 posts
• Page 1 of 1