[Trudy K]

Diagnosed in December 2012, have TP53 gene

by Trudy K on Tue Apr 09, 2013 4:47 pm

I am a 59 year old woman diagnosed in December 2012 and have the TP53 gene at diagnosis which calls for a poor prognosis and outcome. I have been unable to find or get in touch with any other people who have this profile and was wondering if anyone can give me some feedback or has any information. I would love to hear that some of them have also been 10 year survivors.

Thank you.

Trudy

[Morank]

Re: Diagnosed in December 2012, have TP53 gene

by Morank on Sat Apr 13, 2013 1:17 am

Hi - my husband has the 17p TP53 deletion as well.....he was dx'd last year at the age of 48. Did 3 cycles of RVD and then 6 cycles of CyBorDe. Never got to a complete response (M-spike was still at 0.5) so we decided to go forth with the stem cell transplant. He had his Jan 31, 2013 so he's about day +71 and doing really well. We don't have any results as to whether or not the stem cell knocked his m-spike down or not (bone marrow biopsy is scheduled for around day +100). He is back at work (a little more than part-time) and other than missing his hair and the ongoing fatigue he's feeling good. Due to the deletion, he did start maintenance chemo 2 weeks ago...just Velcade every other week which seems manageable. Of course this is not the 10 year survival story that you were hoping to hear but he is 15 months and counting. If you have a facebook account there is a group on there (Multiple Myeloma Support Group) that has more people that tend to answer questions it seems to me anyways.

Good Luck -
Kim

[Sunny]

Re: Diagnosed in December 2012, have TP53 gene

by Sunny on Mon Apr 22, 2013 8:06 am

Kim

Thank u for your reply. I am so happy to find even one other person w tp53. I can't find anything but negative things on the Internet. Good luck to you and your husband. Please keep me posted

[heddleandhook]

Re: Diagnosed in December 2012, have TP53 gene

by heddleandhook on Tue Sep 15, 2015 12:43 pm

Morank, and Sunny, ( ie. Kim and Trudy)

How are you doing? any updates?

I have TP53, and planned SCT next week. Then plan is for twice a month Velcade for maintenance.

[brandyjoco]

Re: Diagnosed in December 2012, have TP53 gene

by brandyjoco on Thu Nov 19, 2015 11:42 am

My husband was just diagnosed as smoldering multiple myeloma with the TP53 gene. It is a mutated one with 17%. I would be interested in hearing how everyone is doing.

We will get the results of his PET/CT tomorrow morning and then will set up an appointment with a specialist to see what treatments he may need.

[tpt]

Re: Diagnosed in December 2012, have TP53 gene

by tpt on Fri Dec 11, 2015 9:18 pm

My dad has p53d. He had fractures in may 2010. After ASCT in 2013 he is still in remission until today. He had no maintenance at all. Though the numbers are slightly leaving the normal range, it has been generally stable over the past 1 year. His myeloma is nonsecretory (Kappa FLC). He is turning 65 next year.

I think Velcade changes the game for those with p53. With many drugs approved, i believe those with p53 have an even better chance of beating it.

Always stay happy and be positive. This will not only encourage yourself but also your caregivers. Remember, caregivers are also under a lot of pressure in dealing with the pain of their loved ones. Your sickness must not make them suffer even more. Stay strong! God bless you all!