We've returned from Mayo; most likely for the last time. Richard's numbers are all way off the chart. I'll add them at the end for those who,like me,like numbers. The deal breaker is the huge plasmacytoma in his abdomen that is displacing his bladder and starting to cause renal obstruction.
The options include a very toxic multi drug chemo regimen that requires hospitalization during administration and extended transfusion support. It's guaranteed to knock the Beast on its ass for a short time, but this Beast is too strong and will return...guaranteed.
Actimid (pomalidomide) is another option, but not likely to help since the Beast has already figured a way around both thalidomide and Revlimid.
High dose steroids (IV Solumedrol) may shrink the mass and possibly beat the Beast back to a level where other things could be considered, but this scenario is not likely.
Richard is speaking with the local oncologist today about the IV steroids, so will add more about that later.
My heart is breaking.....
11 comments:
I wish I could you give you a big, long hug. Hang in there.
Hi TK,
I am so very sorry to read this news. I hope the oncologist comes up with some way to get around the beast and whack it in the behind. Do keep us all posted.
Like Ed, I am sending you a hug... from Italy,
Margaret
My heart goes out to you both. I wish for you days of peace, one at a time.
I am so sorry to hear this news. I will be thinking of you.
You don't know me, but your post came up on my Google Alert for plasmacytoma. My heart breaks for you. I also realize that the time you have together, whether short or longer than you might be thinking, will have so much meaning for you both.
I'm writing from the hospital where we have lived since the second of my husband's 15 radiation treatments because it caused some damage to his L-5 vertebra and he has a lot of pain (was supposed to be out-patient). That was early December, he was diagnosed with pc and smoldering myeloma Nov 28, the day after our anniversary. we go to Mayo Feb 2, for now we are just focused on getting him up on his feet and reducing the pain.
If this is a sliver of hope, we have a friend whose mm went into amyloidosis (heart) seven years ago. His numbers were bad.
He has beaten the odds with the new meds that have come out since his diagnosis, in spite of setbacks and other complications (blood clots, infections) . They have twins who were about a year old when he was diagnosed.
I send you energy for the days you need it.
Thank you for sharing your story.
-Julie
I read your information more closely. To my surprise, you too are in Cedar Rapids. We are at Mercy Hospital here. We live in Vinton. The friend I mentioned is a dentist at the low income children's clinic at St. Lukes.
If I can offer a listening ear, you can find me at juliezim@mchsi.com.
My heart breaks for you. I've followed your blog anonymously for the last year, my husband's grandfather passed away from multiple myeloma in 2003 and this blog came up in a search for mm.
I work in a pharmacy in a cancer institute in Canada and see all of the investigational drugs being tried for multiple myeloma. The Beast will be beaten one day, I hope.
((HUGS))
I am struggling to find appropriate words. I know there is nothing I can say to make it better. But I am sending hugs and warm thoughts. Take care of each other.
My heart aches for you. Your news is the kind that every loved one of a Myeloma patient hopes will never come, but which we know eventually will. I'm sending you a big hug.
I wish I had words for you, but I don't. I am aching for you and I am just so, so sorry.
Oh my. Dr. L at Mayo has said that pomalidomide has actually worked for some folks for whom Revlimid has failed. But I'm sure you met with her.
Our hearts are heavy for you and Richard.
Don
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