OK, he's married. It was a great wedding, and they are an insanely beautiful couple. She looks like a wee blonde fairy Barbie doll, and he looks like a slightly befuddled Ken. Worked fine.
Bone marrow biopsy and port-a-cath getting done in the morning, and treatment infusions start Tuesday.
My doctor thinks that I should just do the Kyprolis and dex, but not the Pomalyst, for now because he thinks my ANC runs a bit too low for the whole thing. They may add that later.
One thing at a time. The next thing, and the next thing. Isn't that how we all handle this stuff? Do the next thing, then the next one, ...
Forums
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Indolent vs aggressive relapse: what's the difference?
Congratulations on the marriage. So proud of you for your strength and perseverance. Will be thinking of you this week, be tender with yourself, you will do fine!! All the best wishes-
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Hummingbird
Re: Indolent vs aggressive relapse: what's the difference?
Thank you.
The port-a-cath is in and the bone marrow biopsy is done.
May I say, to all those who have had bone marrow biopsies both with and without anesthesia (like me) that anesthesia is better?
'Course, I have five kids and my opinion of 'natural childbirth' is pretty dim, too.
Mind you, it took 'em five tries to find a vein in my hand that would work, but I figured, hey, this is the last time anybody is going to have to do that (and do NOT anybody tell me I'm wrong about that one because I don't want to know).
They put me in a room with a CT scanner, mapped my back side, the doctor said I'm going to start now, and the anesthesiologist stepped in front of me so I could see her put the sleepy stuff in the IV. And I woke up in the recovery room.
Woo hoo! Best bone marrow biopsy ever!
So my butt is a bit sore. Pffft.
Only way in the world to do this.
The port-a-cath was done under sedation, but I mostly slept through that one, too. Didn't even feel the locals going in to numb up the area.
I can do this. Next?
In fact, I may embroider that on something and hang it on my wall. Or put it on a t-shirt.
We CAN do this, right?
The port-a-cath is in and the bone marrow biopsy is done.
May I say, to all those who have had bone marrow biopsies both with and without anesthesia (like me) that anesthesia is better?
'Course, I have five kids and my opinion of 'natural childbirth' is pretty dim, too.
Mind you, it took 'em five tries to find a vein in my hand that would work, but I figured, hey, this is the last time anybody is going to have to do that (and do NOT anybody tell me I'm wrong about that one because I don't want to know).
They put me in a room with a CT scanner, mapped my back side, the doctor said I'm going to start now, and the anesthesiologist stepped in front of me so I could see her put the sleepy stuff in the IV. And I woke up in the recovery room.
Woo hoo! Best bone marrow biopsy ever!
So my butt is a bit sore. Pffft.
Only way in the world to do this.
The port-a-cath was done under sedation, but I mostly slept through that one, too. Didn't even feel the locals going in to numb up the area.
I can do this. Next?
In fact, I may embroider that on something and hang it on my wall. Or put it on a t-shirt.
We CAN do this, right?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Indolent vs aggressive relapse: what's the difference?
Haha! I totally agree! I've had both ways, and after the first one, I always get put out!
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Janet1520
Re: Indolent vs aggressive relapse: what's the difference?
Janet, high fives on that!
I admire all those here who think that bone marrow biopsies are 'no biggie." I truly do.
I'm just not one of 'em and hey. It's Tuesday. I have decided that I have the absolute right to be a whiner, a complainer and a total pain in the rear to everybody on Tuesdays. It's dex day.
I admire all those here who think that bone marrow biopsies are 'no biggie." I truly do.
I'm just not one of 'em and hey. It's Tuesday. I have decided that I have the absolute right to be a whiner, a complainer and a total pain in the rear to everybody on Tuesdays. It's dex day.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Indolent vs aggressive relapse: what's the difference?
I just had a bone marrow biopsy yesterday in preparation for my stem cell transplant June 5. They didn't put me out but gave me Ativan to make me a little loopy. I could feel some pushing and hear the drill, but no pain.
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mtsmith - Name: mtsmith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb '16
- Age at diagnosis: 56
Re: Indolent vs aggressive relapse: what's the difference?
Just an update. In spite of the fact that my bone marrow biopsy shows less than 5% plasma cell involvement, my M protein is only barely there (and they aren't really certain it is, actually, there, that is), my light chains are dead normal (but then, they were normal when I was diagnosed in 2013 when my bone marrow was 75% involved), and everything systemically looks really good still, I'm looking at a second bone marrow transplant this fall.
Seems that plasmacytomas in the skull don't contribute to things blood tests can identify.
The odd thing here is that the thing that got my doc all excited was a 'thing' on a rib. That disappeared on the next X-ray as an 'artifact." No plasmacytoma on the rib. No wonky blood tests. But because he was concerned about the thing on the rib (that turned out not to be a 'thing'), he sent me for CT / MRI / full body x-rays, and there they were: holes in my head that shouldn't be there.
One of them is beginning to cause headaches. I think. Maybe. 'course, that COULD just be: son married, niece GETTING married on the Fourth of July and having a baby in September, and my kids having to move with a whole six weeks notice while they are rehearsing "ANNIE" at their community theater group and finding out that Dad has a leaky heart valve and Mom is relapsing with Crohn's disease and my sister having to deal with the wedding, the baby, having to fly to Indiana to deal with her mother-in-law (who has dementia), etc.
AND she's the one who has to be my caregiver for this. In the doctor's office today, she's the one who cried and I don't blame her one little bit.
At any rate, options were discussed, up to and including radiation. Going with the transplant since the results were so positive the last time. Still are; All those blood tests are lying and saying that I'm in complete remission and doing just dandy, except of course I'm not.
I am confused, and not happy, and I don't have a local oncologist any more since the guy who has been dealing with me for four years is moving, his replacement will only be here for a couple of months, and I have NO idea who is going to replace him except that she is a she and she's Indian. That's it.
I will manage, of course. WE all do. but dang, sometimes this isn't easy, is it?
Seems that plasmacytomas in the skull don't contribute to things blood tests can identify.
The odd thing here is that the thing that got my doc all excited was a 'thing' on a rib. That disappeared on the next X-ray as an 'artifact." No plasmacytoma on the rib. No wonky blood tests. But because he was concerned about the thing on the rib (that turned out not to be a 'thing'), he sent me for CT / MRI / full body x-rays, and there they were: holes in my head that shouldn't be there.
One of them is beginning to cause headaches. I think. Maybe. 'course, that COULD just be: son married, niece GETTING married on the Fourth of July and having a baby in September, and my kids having to move with a whole six weeks notice while they are rehearsing "ANNIE" at their community theater group and finding out that Dad has a leaky heart valve and Mom is relapsing with Crohn's disease and my sister having to deal with the wedding, the baby, having to fly to Indiana to deal with her mother-in-law (who has dementia), etc.
AND she's the one who has to be my caregiver for this. In the doctor's office today, she's the one who cried and I don't blame her one little bit.
At any rate, options were discussed, up to and including radiation. Going with the transplant since the results were so positive the last time. Still are; All those blood tests are lying and saying that I'm in complete remission and doing just dandy, except of course I'm not.
I am confused, and not happy, and I don't have a local oncologist any more since the guy who has been dealing with me for four years is moving, his replacement will only be here for a couple of months, and I have NO idea who is going to replace him except that she is a she and she's Indian. That's it.
I will manage, of course. WE all do. but dang, sometimes this isn't easy, is it?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Indolent vs aggressive relapse: what's the difference?
All good thoughts.
My husband's relapse presented as perfect bloodwork and a plasmacytoma on the skull. He did radiation, but then over a few months his bloodwork started creeping up and he went back on treatment. He's not able to do a transplant because Cytoxan damaged his lungs, so the team agreed melphalan was too risky.
Very annoying when the disease doesn't behave as expected. Whatever happened to indolent relapses with lots of warning in the labs!
My husband's relapse presented as perfect bloodwork and a plasmacytoma on the skull. He did radiation, but then over a few months his bloodwork started creeping up and he went back on treatment. He's not able to do a transplant because Cytoxan damaged his lungs, so the team agreed melphalan was too risky.
Very annoying when the disease doesn't behave as expected. Whatever happened to indolent relapses with lots of warning in the labs!
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Indolent vs aggressive relapse: what's the difference?
I dunno, Lisa!
While I'm sorry your husband is dealing with this, I'm really glad I'm not crazy and that this sort of thing really does happen.
Mind you, I'm feeling a little odd ... ironic, perhaps? That after all these years of being told that my various ills are 'all in my head,' to have one turn out to actually BE 'all in my head.'
While I'm sorry your husband is dealing with this, I'm really glad I'm not crazy and that this sort of thing really does happen.
Mind you, I'm feeling a little odd ... ironic, perhaps? That after all these years of being told that my various ills are 'all in my head,' to have one turn out to actually BE 'all in my head.'
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Indolent vs aggressive relapse: what's the difference?
You are fortunate if you have a choice about anesthesia for bone marrow biopsy. My specialist only does them manually with a local. It is exceedingly painful. One nurse had the sole job of holding me still. They have a sound proof room for these! I would love to be "out" for my next one!
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Hummingbird
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