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Re: Diana's CAR T-cell therapy journey

by dianaiad on Sun Feb 23, 2020 8:17 pm

Thank you for the good wishes, everybody.

Real quick update: Just got an email from the cancer center radiology department reminding me that I have a PET scan due on the 26th (Wednesday) (a scan from 'the base of the skull to the top of the thighs). It's a ''reminder' of an appointment nobody told me about in the first place.

Made me grin.

Now the cancer center treats me like a queen every time I go down there, but someone needs to work on communication skills. ;)

First, the largest lesions I have are found above 'the base of the skull' (maxillary sinus, lower jaw, back of the head) and in my thighs. Though I do have the one in my left arm and ribs. Therefore, a PET scan that ignores the area where the lesions are might be, er, not as useful as it needs to be. I discussed this earlier with my doctor and he had to change the orders for my last PET scan.

Second, we won't know whether my blood has 'cooked' sufficiently (is ready for infusion) until Tuesday at the earliest, so while a PET scan might be a good idea on Wednesday, it is by no means assured. They don't want to do any further testing until they know it's a go.

At least, that's what I was told.

So, is someone in a bigger hurry than I thought?

Ah, well. Things seem to be going well, yes?

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

by dianaiad on Mon Feb 24, 2020 10:53 pm

Update Two:

I got The Plan today.

Day after tomorrow, PET scan, lab tests, echo- and electrocardiograms, skeletal survey, meeting with my doctor.

Next Monday, March 2, bone marrow biopsy and admission to the hospital the following day. That is, if all the tests come back as everybody is hoping that all of the tests come back.

A little excited. A lot scary. I did ask if it was okay for me to get a French manicure before I was admitted, because a French manicure allows the nursed to 'see' the oxygen saturation levels (being clear or only slightly pink tinted). I got the answer back that this French manicure was probably okay.

(grin) I really was kidding about the manicure, y'know.

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

by dianaiad on Thu Feb 27, 2020 1:29 am

Today was the 'long day' of tests and x-rays; echo- and electrocardiogram, PET scan, chest x-ray, and bone scan. And lots of lab tests. My personal 'best' was 21 vials, seven years ago. Today's was only 18. Whoot! The nurse decided she didn't really need a pregnancy test.

They did insist upon the HIV and Epstien Barr test, though. I remember thinking, why not corona­virus? I mean, we do have a case of that in Santa Clarita, and I have to drive through there on the way to cancer center, right?

(Shaking head) Sometimes one simply wonders, y'know?

OK, doctors say it's official. I'm in. Bone marrow biopsy on Monday, admitted to hospital on Tuesday, myeloma drug therapy for the first week, infusion of CAR-T cells for the second, and if all goes well, come home at the end of that week.

Woohoo!

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

by Nancy Shamanna on Thu Feb 27, 2020 10:12 am

Good luck Diana. Hopefully all will go really well with your CAR T-cell treatment!

Maybe you could have the manicure since they measure oxygen saturation with the little clip that goes on the finger. along with when the blood pressure is measured. That is what happens when I go for treatments

Nancy

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

by Mike F on Thu Feb 27, 2020 11:53 am

It's good to hear that you passed the tests and are moving on to therapy, Diana! Here's hoping it goes well and works even better!

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

by dianaiad on Thu Feb 27, 2020 2:15 pm

I'm so relieved, .and yet, I'm not.This has been a wild roller coaster of a ride. My caregiver's lives have changed so much.Though my 'caretaking team' is still as varied and wide as it ever was, individually they need more help than I do! So figuring out who can interrupt their lives to help me out for the next couple of weeks is, believe it or not, harder than it was with my transplants, where I was figured to be 'out of commission for six to eight weeks, not just two.

On the other hand, it is just two weeks, not six, and evidently week one is the myeloma drug therapy only; and lightly done at that. I won't even lose my hair! Any side effects should be easily managed; I'll be right there to ask for crackers, for instance. ;) I think what I'll be, mostly, is bored.

Silly bored. Lets see. Knitting project, check. Embroidery thing. check. Smart phone. Check. I-pad. Check. Lap top. Check. Hand quilting project. Check. Painting easel with all the bells and whistles. Check.

Wait.

What did I do for this stuff in the '90s? I know I did something. Oh. yes. Books. Make sure Audible, Kindle and Nook are downloaded and upgraded. Check.

Charging cords and plugs. Check..

Almost makes me want to stick around for another hundred years to see what my great grand kids come up with for entertainment. ;)

We;ll see what week two brings, after the infusion of CAR-T cells, when week two rolls around.

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

by goldmine848 on Fri Feb 28, 2020 8:22 pm

It is very helpful to us all that you are posting as you go through this new treatment. We all wish you the best and look forward to hearing more from you.

goldmine848
Name: Andrew
When were you/they diagnosed?: June 2013
Age at diagnosis: 60

Re: Diana's CAR T-cell therapy journey

by dianaiad on Fri Feb 28, 2020 10:54 pm

mini update:

Got the call from the cancer center. The bone marrow biopsy is 'on,' and I get to show up on Monday at 8 a.m. for it. My daughter will drop me off and go do paperwork. Then she'll come get me, and we will come home, where I will get that manicure.

Any prayers coming from you guys will be humbly and gratefully received. So will simple good wishes from the non-believers.

I would really like this to help me, personally, but it's perfectly fine if it doesn't, and only helps other people.

G'nite. ;)

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

by Arizonan on Sat Feb 29, 2020 10:40 pm

You are helping us all with this clinical trial.

Best wishes,

David

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

by Christa's Mom on Mon Mar 02, 2020 5:56 pm

Diana,

Best of luck! Thank you for being so brave. We are all pulling for you!

Lyn

Christa's Mom
Name: Christa's Mom
Who do you know with myeloma?: Husband
When were you/they diagnosed?: September, 2010
Age at diagnosis: 53

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