Hello Diana,
I hope that you are doing well and recovering from the treatments you have had. Best wishes and take care!
Nancy
Forums
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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
Hi guys,
This is Diana's oldest daughter writing this. Mom is no longer able participate in online forums, which is something she dearly loved doing. I know that several of her doctors and nurses read this forum, and if they do, they are more than welcome to post here with what they can. Many of them have mentioned reading her words and her participation in the community to help fight this thing. I don't know all of the technical words, so forgive me if I say the wrong thing, you'd think after 7 years I'd understand it, but I don't.
Technically speaking, the T-cell therapy worked. So on that front there is a lot of hope; they are moving in a good direction. As many of you know, my Mom didn't have many options left to her in treating her myeloma. She is also an incredibly selfless and strong woman, and she went in to this trial knowing full well the results were a complete unknown.
Because she has been updating everyone, I asked her today if I could post updates for her and she said, "okay, yes please, and tell them I love them," which is a good amount for her as of late.
So from here on out, I'll be updating as best I can, though fair warning, the news aren't good, and the short story is that as of today Mom is transitioning to hospice care after being at the cancer center for nearly 4 months. The myeloma has really taken over.
While things were looking good and it seemed the T cells were doing their job, and they were (her myeloma was going away, one of her facial lesions totally disappeared and is still gone), she developed some complications with a BK virus in her kidneys and bladder as well as HHV6 in her brain. Somewhere between the two, her cognitive status started dropping.
While treating these complications, many of the T cells ended up being killed off. They've tried like crazy to treat these complications, but the BK virus was being really stubborn to the point of her requiring a kidney stent. In the meantime, the myeloma woke up and started progressing again. They made an effort to radiate the large lesion on her head, and it helped, but only temporarily.
Since then, the myeloma has spread to her lungs and we suspect elsewhere. There are really no more additional treatments they can do, and her mental status is, for a lack of better word, plummeting.
Although she is actually well aware of what's happening, she's just struggling to communicate and doing many of things one tends to do in the dying process.
So as of this afternoon, she is transitioning to hospice care. I'll have more news later. This is obviously never good news for anyone. But what I can say is that I'm so proud of her. She knew how risky this was, but she wanted to do it in order to further the research. What I can share is that when we were talking to the team the other day she said, "But did I help?" She cared less about herself and more about helping the research and helping others with this disease. I can tell you this is exactly the kind of woman she is, giving and giving and giving.
She has been treated like absolute royalty the last few months being locked in with no visitors allowed thanks to COVID-19. So many staff members tell me how much they love her. So when they told me last week to get down here, and that I was approved, I knew things were heading in this direction, even though we'd seen it because she was communicative and was having trouble talking on the phone. They are NOT letting anyone in here unless it's dire, and I appreciate the staff being so kind, because they are all aware that having a family support person in here right now is not good. I feel so much for the other patients here, this isolation isn't good for any of them emotionally, which is a major factor in the outcome of their care.
Anyway, I will certainly update here as I can. The next few days we are transitioning to a bungalow here on campus until the hospice agency can get everything setup at home for her, because she was very clear that she wanted to spend her days at home with family, which is all that more since she hasn't actually seen any of them since March.
Thanks again, 2020, or as one of my Mom's nurses said (and it made my Mom giggle like crazy):
If 2020 were a drink, what would it be named?
Colonoscopy Prep
This is Diana's oldest daughter writing this. Mom is no longer able participate in online forums, which is something she dearly loved doing. I know that several of her doctors and nurses read this forum, and if they do, they are more than welcome to post here with what they can. Many of them have mentioned reading her words and her participation in the community to help fight this thing. I don't know all of the technical words, so forgive me if I say the wrong thing, you'd think after 7 years I'd understand it, but I don't.
Technically speaking, the T-cell therapy worked. So on that front there is a lot of hope; they are moving in a good direction. As many of you know, my Mom didn't have many options left to her in treating her myeloma. She is also an incredibly selfless and strong woman, and she went in to this trial knowing full well the results were a complete unknown.
Because she has been updating everyone, I asked her today if I could post updates for her and she said, "okay, yes please, and tell them I love them," which is a good amount for her as of late.
So from here on out, I'll be updating as best I can, though fair warning, the news aren't good, and the short story is that as of today Mom is transitioning to hospice care after being at the cancer center for nearly 4 months. The myeloma has really taken over.
While things were looking good and it seemed the T cells were doing their job, and they were (her myeloma was going away, one of her facial lesions totally disappeared and is still gone), she developed some complications with a BK virus in her kidneys and bladder as well as HHV6 in her brain. Somewhere between the two, her cognitive status started dropping.
While treating these complications, many of the T cells ended up being killed off. They've tried like crazy to treat these complications, but the BK virus was being really stubborn to the point of her requiring a kidney stent. In the meantime, the myeloma woke up and started progressing again. They made an effort to radiate the large lesion on her head, and it helped, but only temporarily.
Since then, the myeloma has spread to her lungs and we suspect elsewhere. There are really no more additional treatments they can do, and her mental status is, for a lack of better word, plummeting.
Although she is actually well aware of what's happening, she's just struggling to communicate and doing many of things one tends to do in the dying process. So as of this afternoon, she is transitioning to hospice care. I'll have more news later. This is obviously never good news for anyone. But what I can say is that I'm so proud of her. She knew how risky this was, but she wanted to do it in order to further the research. What I can share is that when we were talking to the team the other day she said, "But did I help?" She cared less about herself and more about helping the research and helping others with this disease. I can tell you this is exactly the kind of woman she is, giving and giving and giving.
She has been treated like absolute royalty the last few months being locked in with no visitors allowed thanks to COVID-19. So many staff members tell me how much they love her. So when they told me last week to get down here, and that I was approved, I knew things were heading in this direction, even though we'd seen it because she was communicative and was having trouble talking on the phone. They are NOT letting anyone in here unless it's dire, and I appreciate the staff being so kind, because they are all aware that having a family support person in here right now is not good. I feel so much for the other patients here, this isolation isn't good for any of them emotionally, which is a major factor in the outcome of their care.
Anyway, I will certainly update here as I can. The next few days we are transitioning to a bungalow here on campus until the hospice agency can get everything setup at home for her, because she was very clear that she wanted to spend her days at home with family, which is all that more since she hasn't actually seen any of them since March.
Thanks again, 2020, or as one of my Mom's nurses said (and it made my Mom giggle like crazy):
If 2020 were a drink, what would it be named?
Colonoscopy Prep
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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
Hello to you and Diana and your family.
It is very good of you, Diana's daughter, to fill us in on what has been happening with your mother. I am so sorry, though, to hear about the complications that interfered with the T-cell therapy. Am sending best wishes and virtual hugs your way. Diana's posts were always upbeat and funny too.
Best regards,
Nancy
It is very good of you, Diana's daughter, to fill us in on what has been happening with your mother. I am so sorry, though, to hear about the complications that interfered with the T-cell therapy. Am sending best wishes and virtual hugs your way. Diana's posts were always upbeat and funny too.
Best regards,
Nancy
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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
Dear “Diana’s daughter,”
Like most of us here in the Forum, I have followed your mother’s postings very carefully. Her story is dramatic and of great interest to those of us dealing with multiple myeloma. Beyond that, her spunky and defiant attitude, combined with a devilish wit, made for great reading.
Since her most recent posting in May, which was so positive, I have checked the Forum every day hoping to find a new post. When I saw that there was a new message, I was so excited, and then so devastated.
Thank you so much for taking the time to write a detailed and frank report. It had to be very difficult for you. I think I sense a lot of you mother’s spirit in what you wrote.
Although your post was upsetting and sad, most of us in the Forum want to face reality (when absolutely necessary!).
Again, I so much appreciate your updating us about Diana’s status. She is dear to us!
Like most of us here in the Forum, I have followed your mother’s postings very carefully. Her story is dramatic and of great interest to those of us dealing with multiple myeloma. Beyond that, her spunky and defiant attitude, combined with a devilish wit, made for great reading.
Since her most recent posting in May, which was so positive, I have checked the Forum every day hoping to find a new post. When I saw that there was a new message, I was so excited, and then so devastated.
Thank you so much for taking the time to write a detailed and frank report. It had to be very difficult for you. I think I sense a lot of you mother’s spirit in what you wrote.
Although your post was upsetting and sad, most of us in the Forum want to face reality (when absolutely necessary!).
Again, I so much appreciate your updating us about Diana’s status. She is dear to us!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Diana's CAR T-cell therapy journey
I am so sad and disappointed about the bad news, as I was always excited to read what Diana wrote. She is so strong and positive, with such a good sense of humor.
Sorry for my English, I am from Belgium and it is a bit difficult to find the right words in these circumstances. I am sending her virtual hugs and I continue to wish her the best.
Jane
Sorry for my English, I am from Belgium and it is a bit difficult to find the right words in these circumstances. I am sending her virtual hugs and I continue to wish her the best.
Jane
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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
Diana's posts were always a hoot to read. I am truly sad about this turn of events and wish Diana and her family all the best during this process.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Diana's CAR T-cell therapy journey
My best wishes as well. I loved reading Diana's posts, and I can only aspire to maintain the kind of attitude, strength, and humor that she's shown throughout this difficult journey.
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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 for posting about your mom. She has always been so upbeat. I will pray for a miracle and keep your family in my prayers.
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Diana's CAR T-cell therapy journey
Thanks for posting about your Mom. She is a great writer, with a funny, unique style. Hearing about her progress, even when it’s poor, is educational for all of us.
Please let your mother know her many readers are thinking about her.
David
Please let your mother know her many readers are thinking about her.
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
Blessings, Diana, and thank you for sharing yourself to all of us.
You are in my thoughts
Carol
You are in my thoughts
Carol
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caroldancey - Name: C Dancey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 67
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