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Re: Diana's CAR T-cell therapy journey
Thanks for your brave, funny updates, Diana. Am wishing you all the best, and I hope that the tests that get done for you show the cancer in a complete rout!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Diana's CAR T-cell therapy journey
I hope you are doing well, Diana. I have a referral to discuss the possibility of taking part in the same CS1 CAR T-cell trial you are in, so I appreciate your updates. Aloha and God Bless! Bo.
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Bo808 - Name: Bo
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb' 2017
- Age at diagnosis: 54
Re: Diana's CAR T-cell therapy journey
Update:
Woo hooo! I have a keyboard I can type on without skipping all over the place! You have no idea how hard it is to deal with a laptop keyboard when you have peripheral neuropathy. Yes, I'm booorred. Not just keyboard deprived. However, it's all good now.
When I signed up for this, I knew I was in a fight, but I thought: Four weeks tops, and this time I won't lose my hair. "They" lied. I'm here for the summer. And I've lost every dark hair on my head. I am now officially a very thin (hair wise, not me-wise) white-haired old lady. I feel really good, though. The folks here treat me like a queen, even though I have no control over my schedule, and the rules about 'no visitors' are very strictly meant.
The doctor is extremely careful about my labs. One way or another, if they are up or down a point, I get whatever I need to put them where they need to be. Sometimes that means 8 shots a day of something subcutaneous (doesn't hurt, by the way), but right now those have been discontinued. My labs are going the right direction.
The doctor said that it's like he's being a weather man. He can see the hurricane coming, and it's headed right for my house. In the meantime, I'm sitting in a leaky boat in the sunshine enjoying the glorious day. I haven't felt this good in months, frankly. It's quite a disconnect to get up from a bathroom break at 4 a.m. and be greeted by a bunch of nurses with blood products for me because my values showed a point low at midnight.
But I'll take it. I have a computer that works now. All is well.
Other than that? I think we are winning this one.
Woo hooo! I have a keyboard I can type on without skipping all over the place! You have no idea how hard it is to deal with a laptop keyboard when you have peripheral neuropathy. Yes, I'm booorred. Not just keyboard deprived. However, it's all good now.
When I signed up for this, I knew I was in a fight, but I thought: Four weeks tops, and this time I won't lose my hair. "They" lied. I'm here for the summer. And I've lost every dark hair on my head. I am now officially a very thin (hair wise, not me-wise) white-haired old lady. I feel really good, though. The folks here treat me like a queen, even though I have no control over my schedule, and the rules about 'no visitors' are very strictly meant.
The doctor is extremely careful about my labs. One way or another, if they are up or down a point, I get whatever I need to put them where they need to be. Sometimes that means 8 shots a day of something subcutaneous (doesn't hurt, by the way), but right now those have been discontinued. My labs are going the right direction.
The doctor said that it's like he's being a weather man. He can see the hurricane coming, and it's headed right for my house. In the meantime, I'm sitting in a leaky boat in the sunshine enjoying the glorious day. I haven't felt this good in months, frankly. It's quite a disconnect to get up from a bathroom break at 4 a.m. and be greeted by a bunch of nurses with blood products for me because my values showed a point low at midnight.
But I'll take it. I have a computer that works now. All is well.
Other than that? I think we are winning this one.
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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
Wow, Diana, congrats on doing so well so far on this journey. You have such a positive attitude, and I am glad to hear that you are feeling well too. It's too bad you lost a lot of hair, but nobody has good hair right now anyways, since the salons are closed and haircuts are not available, at least where I live. I lost all my hair before also, from the stem cell transplant a decade ago, but it did grow back in well. Good luck day by day, and thanks for the update.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Diana's CAR T-cell therapy journey
I love, love, love reading that, Diana! Keep on keepin' on!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Diana's CAR T-cell therapy journey
Thank you so much for sharing your journey, Diana. I love reading your posts and love your positive attitude and sense of humour!
Wish you a long long lasting remission.
Wish you a long long lasting remission.
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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:
Well, I'm still here at the cancer center. They are still keeping a very close eye on my labs, and today (woo hoo) I get another PT scan, followed by a bone marrow biopsy tomorrow. Lots of study tests when one is in a new trial.
The good news is, all my labs are going the right direction, and they keep very close tabs on that. No blood products needed last night, though they have resumed the Neupogen shots if my white
cell count is down, which it seems to be a bit. Altogether I feel better than I have in months, but you all know that already. This makes me a bit bored, but I'm finding stuff to do.
Mind you, some of that stuff is a bit odd, like my kids are sending a video game requiring reflexes to a woman who has, at the moment, severe peripheral neuropathy. That'll be interesting. Oh, you know that intense burning sensation you can get in your feet with peripheral neuropathy? Try ice packs. Sleep is very nice.
I'm getting a little whiter haired, a little balder, and I'm getting sores where my implants anchor my dentures, but I'm dealing with all that. Good things, mostly, all around.
Well, I'm still here at the cancer center. They are still keeping a very close eye on my labs, and today (woo hoo) I get another PT scan, followed by a bone marrow biopsy tomorrow. Lots of study tests when one is in a new trial.
The good news is, all my labs are going the right direction, and they keep very close tabs on that. No blood products needed last night, though they have resumed the Neupogen shots if my white
cell count is down, which it seems to be a bit. Altogether I feel better than I have in months, but you all know that already. This makes me a bit bored, but I'm finding stuff to do.
Mind you, some of that stuff is a bit odd, like my kids are sending a video game requiring reflexes to a woman who has, at the moment, severe peripheral neuropathy. That'll be interesting. Oh, you know that intense burning sensation you can get in your feet with peripheral neuropathy? Try ice packs. Sleep is very nice.
I'm getting a little whiter haired, a little balder, and I'm getting sores where my implants anchor my dentures, but I'm dealing with all that. Good things, mostly, all around.
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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
Dear Diana,
Good to hear about your results. Being bored is a good sign in a way. If you were sick all the time, you wouldn't feel like that.
Take care.
Good to hear about your results. Being bored is a good sign in a way. If you were sick all the time, you wouldn't feel like that.
Take care.
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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:
All my labs are still going the 'right' way, though I'm having some major side effect issues from the dex and other things. Peripheral neuropathy is really nasty, and I have a problem with 'bobble head' syndrom. Well, I call it that. I'm fine lying down and sitting, but as soon as I get up, whew, dizzy and everything spins.
I'm told that this will eventually improve when they start cutting out all the stuff, and I have to say that all the "stuff" seems to be doing the job. My last PET scan was incredibly encouraging, according to the doctors, and they are treating the problem with dex with antibiotics. Weird, though. I've never felt like this, and it's all very new. Still, everything is going the way everybody else wants it to go. Turns out that 10% of the CAR-T cells they gave me (rather than the full dose) are really doing the job.
Still don't know when they'll send me home, though. I do know that, given the last two nights, sending me home would be a very bad idea. I need too much help. Still, things are happening. Good things. This CAR T-cell trial may or may not help me (though it looks very much as if it is), but it is certainly going to help other people!
Have a great weekend, everybody. Stay safe.
And be glad that, unlike me, you have not had to have COVID-19 tests three times so far.
All my labs are still going the 'right' way, though I'm having some major side effect issues from the dex and other things. Peripheral neuropathy is really nasty, and I have a problem with 'bobble head' syndrom. Well, I call it that. I'm fine lying down and sitting, but as soon as I get up, whew, dizzy and everything spins.
I'm told that this will eventually improve when they start cutting out all the stuff, and I have to say that all the "stuff" seems to be doing the job. My last PET scan was incredibly encouraging, according to the doctors, and they are treating the problem with dex with antibiotics. Weird, though. I've never felt like this, and it's all very new. Still, everything is going the way everybody else wants it to go. Turns out that 10% of the CAR-T cells they gave me (rather than the full dose) are really doing the job.
Still don't know when they'll send me home, though. I do know that, given the last two nights, sending me home would be a very bad idea. I need too much help. Still, things are happening. Good things. This CAR T-cell trial may or may not help me (though it looks very much as if it is), but it is certainly going to help other people!
Have a great weekend, everybody. Stay safe.
And be glad that, unlike me, you have not had to have COVID-19 tests three times so far.
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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
Thanks, Diana, for the recent update. I hope that you are feeling better soon too.
I think it is a good idea to be in hospital if you can be, since with the COVID-19 pandemic it is difficult to stay safe from that virus. I know what you mean about the dex and the COVID-19 tests. I take dex once a week now, and it does throw me off my game for two or three days. Also, the COVID-19 test I had was a bit uncomfortable, having a swab up the nostril. It gave me good information about the viruses in my system, which thankfully did not include COVID-19.
Take care!
I think it is a good idea to be in hospital if you can be, since with the COVID-19 pandemic it is difficult to stay safe from that virus. I know what you mean about the dex and the COVID-19 tests. I take dex once a week now, and it does throw me off my game for two or three days. Also, the COVID-19 test I had was a bit uncomfortable, having a swab up the nostril. It gave me good information about the viruses in my system, which thankfully did not include COVID-19.
Take care!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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