Hi Chris,
Sorry to hear that. But I hope your treatment works. There are many treatment options these days and the hope is always there.
Forums
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Extramedullary disease on the head / skull
Hello-
Just wanted to chime in with a little encouragement. While extramedullary disease is considered more aggressive, that doesn't mean things are hopeless.
My husband was originally diagnosed 6.5 years with a plasmacytoma on his rib (destroyed most of the rib) and had many other lytic lesions. He also had an M-spike of 3.7. Started with Velcade/dex, had a transplant in Jan, 2012. He has not had a measurable M-spike since then, but he gets extramedullary tumors on a regular basis (many dozens if you add them all up).
He has spent the last 4.5 years alternating between chemo (when there are too many tumors in too many places, staying on chemo until it stops working) and radiation (when the tumors are low in number and in isolated spots). The radiation doesn't bother him, so it can be a nice break from the chemo.
There are a lot of tools in the doctors' arsenals these days, so keep your hopes up.
Just wanted to chime in with a little encouragement. While extramedullary disease is considered more aggressive, that doesn't mean things are hopeless.
My husband was originally diagnosed 6.5 years with a plasmacytoma on his rib (destroyed most of the rib) and had many other lytic lesions. He also had an M-spike of 3.7. Started with Velcade/dex, had a transplant in Jan, 2012. He has not had a measurable M-spike since then, but he gets extramedullary tumors on a regular basis (many dozens if you add them all up).
He has spent the last 4.5 years alternating between chemo (when there are too many tumors in too many places, staying on chemo until it stops working) and radiation (when the tumors are low in number and in isolated spots). The radiation doesn't bother him, so it can be a nice break from the chemo.
There are a lot of tools in the doctors' arsenals these days, so keep your hopes up.
Re: Extramedullary disease on the head / skull
Ladyaero,
Thank you so much for your feedback. It's extremely helpful to know. There are not many similar stories that I am coming across, where a person has numerous plasmacytomas, like your husband and my sister. I am glad these can be managed in your husband's case, and that he tolerates radiation well. Of course, every case is different, but it is a great encouragement to hear such stories. Especially now that my sister feels she would not tolerate another transplant. She decided that from now on she will go for less drastic treatments, such as milder-than-melphalan chemo or radiation.
Thanks again for your post, and I wish you and your husband a great holiday season!
Thank you so much for your feedback. It's extremely helpful to know. There are not many similar stories that I am coming across, where a person has numerous plasmacytomas, like your husband and my sister. I am glad these can be managed in your husband's case, and that he tolerates radiation well. Of course, every case is different, but it is a great encouragement to hear such stories. Especially now that my sister feels she would not tolerate another transplant. She decided that from now on she will go for less drastic treatments, such as milder-than-melphalan chemo or radiation.
Thanks again for your post, and I wish you and your husband a great holiday season!
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Extramedullary disease on the head / skull
My multiple myeloma is a lot different then your sister's, but I just wanted to say a few things to you.
Thank you for sharing all these details of your sister's and your journey! Not everyone likes to post, but a lot of people do read the forums and can learn from each other. I know I have learned so much from reading posts and continue to learn from everyone.
I am glad you sister has you in her corner. Support during these times is so very important. I don't know where I would have been without all of the support I have had from my husband, family, and friends. They have helped me as much as the doctors.
I hope your sister is doing ok after her transplant. I had one a couple years ago and lucky for me, mine went smoother then any I have read of.
Wishing your sister nothing but the best of health and care for many good years to come. Please know that it will take a long time after her transplant to bounce back, but in the end hopefully it will all have been worth it, like it has been for me.
Terri
Thank you for sharing all these details of your sister's and your journey! Not everyone likes to post, but a lot of people do read the forums and can learn from each other. I know I have learned so much from reading posts and continue to learn from everyone.
I am glad you sister has you in her corner. Support during these times is so very important. I don't know where I would have been without all of the support I have had from my husband, family, and friends. They have helped me as much as the doctors.
I hope your sister is doing ok after her transplant. I had one a couple years ago and lucky for me, mine went smoother then any I have read of.
Wishing your sister nothing but the best of health and care for many good years to come. Please know that it will take a long time after her transplant to bounce back, but in the end hopefully it will all have been worth it, like it has been for me.
Terri
-
Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: Extramedullary disease on the head / skull
Hi Terri,
Thank you very much for your support. I am glad you are doing well. We are keeping a positive attitude and taking one day at a time. Comments like yours make all the difference.
Thank you very much for your support. I am glad you are doing well. We are keeping a positive attitude and taking one day at a time. Comments like yours make all the difference.
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
25 posts
• Page 3 of 3 • 1, 2, 3