Update:
OK, today is the big day. I think. My organizational nurse called and told me I need a blood transfusion before the T cells, then I get the T cells.
One thing that got me a bit flurmuggled. They tested me for COVID-19 yesterday. I'm negative, of course, but now I know what it's like to be tested. Big build up, the test itself was nuttin.
I asked , and nobody knew, until someone told me it was because my daughter had tested positive last week. She's fine, and actually happy about it. She's a medical technician, and now that she's "had it," she figures she can help more people as soon as she is out of quarantine.
The thing is, she lives 800 miles (1300 km) away from me, and I haven't had personal contact with her since Christmas. Go figure. Anyway, it seems that my white blood cell count and platelets are just that much too low, therefore the blood transfusion.
It's a great deal of 'hurry up and wait.' Used to that.
On the other hand, the view out my window is fantastic, and my daughter is bringing my easel. All will be well if only I can remember all the right answers to 100-7, 93-7, and so forth. That messes me up every time, when I'm fully in my (sorta) right mind!
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: Diana's CAR T-cell therapy journey
Diana, you’re awesome, regardless right or wrong math answers!
Good luck, we are with you, just get it done!
Good luck, we are with you, just get it done!
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borber - Name: borber
- Who do you know with myeloma?: me
- When were you/they diagnosed?: January, 2017
- Age at diagnosis: 60
Re: Diana's CAR T-cell therapy journey
Update:
Dang, I hate this laptop!
Okay, that was my whine for the day. I'm still in the hospital, I still have no side effects from the T-cell infusion, and everyone here is watching me like hawks (or mother hens, whichever personality is foremost). The infusion was on April 3rd, and it is now April 7th.
Nuttin.
No fever, no headache, no mental confusion (more, at least, than normal; I still can't count down by 7's from 10). I'm told that: Just wait!
Evidently I'm just a tad unusual, so don't get all hopeful, those of you who are still awaiting your own T-cell adventures. On the good side, I think the mass on the back of my head is getting smaller. Maybe. The one in my maxilary sinus is pretty much gone. No swelling. I can even wear my dentures, though I'll need to get the uppers relined.
On the other hand, I'm so bored!
(I did mention that I hate this laptop, yes? It keeps jumping around and doing weird things.)
Dang, I hate this laptop!
Okay, that was my whine for the day. I'm still in the hospital, I still have no side effects from the T-cell infusion, and everyone here is watching me like hawks (or mother hens, whichever personality is foremost). The infusion was on April 3rd, and it is now April 7th.
Nuttin.
No fever, no headache, no mental confusion (more, at least, than normal; I still can't count down by 7's from 10). I'm told that: Just wait!
Evidently I'm just a tad unusual, so don't get all hopeful, those of you who are still awaiting your own T-cell adventures. On the good side, I think the mass on the back of my head is getting smaller. Maybe. The one in my maxilary sinus is pretty much gone. No swelling. I can even wear my dentures, though I'll need to get the uppers relined.
On the other hand, I'm so bored!
(I did mention that I hate this laptop, yes? It keeps jumping around and doing weird things.)
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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: Diana's CAR T-cell therapy journey
Thank you for this update, I’m happy that so far you’re doing well after the procedure. Wish you to continue the same way during the following treatment plan!
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borber - Name: borber
- Who do you know with myeloma?: me
- When were you/they diagnosed?: January, 2017
- Age at diagnosis: 60
Re: Diana's CAR T-cell therapy journey
Wow. Thank you for the update. We are all rooting for a good outcome.
David
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Diana's CAR T-cell therapy journey
Update:
Well, last night was an adventure. I had some orthostatic blood pressure problems (that's when one's blood pressure plummets when one stands up) and got a bit dizzy. Didn't last long, and I feel fine this morning, but I'm on "fall risk," complete with the bright yellow wrist band and instructions to call someone if I want to get out of bed.
Ick.
At least I don't have to use the bedside commode at night. I refuse.
They are telling me that my "cheeks are rosy," and everybody is standing around waiting for the fever (and the mental problems) to show up. Downright eager, if you want to know. And I'm a disappointment. I told them that I simply don't run fevers, at least not that can be measured. If I'm at 98.6 F (37 C) that IS a fever, and I've been doing that for three or four days. They don't agree with me. (shrug) Never mind. I could be shaking with the chills so hard that they'd be evacuating the hospital for a 7.5 quake, and my temperature wouldn't read more than 99 F (37.2 C). I'm tired of attempting to explain this. So I let them all just worry that I'm not getting one. A fever, that is. I certainly won't die of it.
Anyway, it seems that the CAR-T cells are making themselves felt, just in very subtle ways. That's okay with me.
In sum, I'm doing well. Very bored, and I want to go home now.
Well, last night was an adventure. I had some orthostatic blood pressure problems (that's when one's blood pressure plummets when one stands up) and got a bit dizzy. Didn't last long, and I feel fine this morning, but I'm on "fall risk," complete with the bright yellow wrist band and instructions to call someone if I want to get out of bed.
Ick.
At least I don't have to use the bedside commode at night. I refuse.
They are telling me that my "cheeks are rosy," and everybody is standing around waiting for the fever (and the mental problems) to show up. Downright eager, if you want to know. And I'm a disappointment. I told them that I simply don't run fevers, at least not that can be measured. If I'm at 98.6 F (37 C) that IS a fever, and I've been doing that for three or four days. They don't agree with me. (shrug) Never mind. I could be shaking with the chills so hard that they'd be evacuating the hospital for a 7.5 quake, and my temperature wouldn't read more than 99 F (37.2 C). I'm tired of attempting to explain this. So I let them all just worry that I'm not getting one. A fever, that is. I certainly won't die of it.
Anyway, it seems that the CAR-T cells are making themselves felt, just in very subtle ways. That's okay with me.
In sum, I'm doing well. Very bored, and I want to go home now.
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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: Diana's CAR T-cell therapy journey
Diana, it seems to me anyway during this time it is good that you are under the close watching.
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borber - Name: borber
- Who do you know with myeloma?: me
- When were you/they diagnosed?: January, 2017
- Age at diagnosis: 60
Re: Diana's CAR T-cell therapy journey
Dear Diana,
I am soooo happy for you. So happy to read once again that CAR T-cell therapy is a real hope for all of us. I am waiting to get into a trial here in Belgium, but the COVID lockdown is delaying any opportunity.
You did not lose your sense of humour and that is a good sign!
Take good care of yourself and thank you for keeping us informed.
I am soooo happy for you. So happy to read once again that CAR T-cell therapy is a real hope for all of us. I am waiting to get into a trial here in Belgium, but the COVID lockdown is delaying any opportunity.
You did not lose your sense of humour and that is a good sign!
Take good care of yourself and thank you for keeping us informed.
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jane84 - Name: jane84
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 11,2012
- Age at diagnosis: 44
Re: Diana's CAR T-cell therapy journey
Update:
jane84 - I think they pulled strings for me, if you want to know the truth. My doctor told me flat out that my multiple myeloma wasn't looking at the calendar or paying attention to the virus, and I needed to get in the trial right now.
Given the difference between the way I've felt over the last couple of months, and the way I feel now? I think it's working. I'll admit that for the last several months I've felt always achy, weak, miserable, no appetite, and nausea always.
For the first time in this entire journey I felt like dying was a viable alternative. But now? I want to put a chicken coop in my back yard, plant roses, start some potatoes, sew something. Today I spent the day eating a good breakfast, lunch, and soon dinner and the nausea hasn't hit me yet. I think it will, but not until 6 or 7 pm. That's miraculous!
Anyway, I'm still on 'bed arrest,' so that I have to call when I go to the bathroom, and I still require Neupogen (filgrastim) shots.
So, things are going very well. My nurse told me that she has a "discharge" today who was on a CAR T-cell trial (but not the same one I'm on) and he has no sign of cancer. None. Zip.
That won't happen with me, but hey. I'll take 'stable' any day. Have good days, everybody!
jane84 - I think they pulled strings for me, if you want to know the truth. My doctor told me flat out that my multiple myeloma wasn't looking at the calendar or paying attention to the virus, and I needed to get in the trial right now.
Given the difference between the way I've felt over the last couple of months, and the way I feel now? I think it's working. I'll admit that for the last several months I've felt always achy, weak, miserable, no appetite, and nausea always.
For the first time in this entire journey I felt like dying was a viable alternative. But now? I want to put a chicken coop in my back yard, plant roses, start some potatoes, sew something. Today I spent the day eating a good breakfast, lunch, and soon dinner and the nausea hasn't hit me yet. I think it will, but not until 6 or 7 pm. That's miraculous!
Anyway, I'm still on 'bed arrest,' so that I have to call when I go to the bathroom, and I still require Neupogen (filgrastim) shots.
So, things are going very well. My nurse told me that she has a "discharge" today who was on a CAR T-cell trial (but not the same one I'm on) and he has no sign of cancer. None. Zip.
That won't happen with me, but hey. I'll take 'stable' any day. Have good days, everybody!
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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: Diana's CAR T-cell therapy journey
That is awesome news! I am so happy to hear you aren't experiencing any major side affects and you feel you are already benefiting from the CAR T-cell therapy.
Thank you for sharing your journey, it gives us all hope.
I hope you get to go home soon.
Rhonda
Thank you for sharing your journey, it gives us all hope.
I hope you get to go home soon.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
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