[dianaiad]

Diana and Darzalex (daratumumab)

by dianaiad on Thu Nov 15, 2018 4:16 pm

A few weeks ago my oncologist team learned of a new clinical trial in my area of a CAR T-cell therapy. They thought I would be a good candidate for it, and I'm excited. I've heard some very good things about CAR T-cell therapies.

I'm in pretty good health, actually. Kidneys and liver doing well, and I have tolerated the treatments so far. Well, I'm not dead or stuck in a wheel chair, and my bone damage is minimal. I am 'high risk,' however, with the P-17 and T;4:14. I've done pretty well so far, all things considered: six years, two bone marrow transplants, and I'm still be bopping around.

I relapsed last spring, less than six months after my second autologous transplant. The Revlimid maintenance wasn't doing the job, and I had a lytic lesion on my sixth rib that decided to sit up and make itself felt.

So my doctors switched me to Pomalyst. I had some big side effect problems with that, though it was working to get my 'numbers' down. '

My team had a consultation, and wanted to know if I would be interested in joining that CAR T-cell trial (which is, evidently, currently on hold). However, this trial is for people who are on their 'last legs,' so to speak. That is, they have to have used pretty much every treatment available before they relapsed.

For some reason, to them that means everything I've done except Darzalex (daratumumab. They aren't counting Pomalyst in the mix. So I have been changed from Pomalyst plus dexamethasone to Darzalex, Revlimid, and dex.

I was told that my first infusion would be inpatient because close to 40% of patients can have severe side effects and need to be monitored closely. For some reason, the inpatient option was not used for me. Instead, the first infusion was split into two very long days at the local infusion center.

That was fine with me! Frankly, I've been in the hospital, and I got a lot more attention in the infusion center. I had nurses checking on me (maybe it was the Santa Claus doll I was knitting) every two or three minutes. They were all very careful, and as soon as I started having a reaction, and I did, they were dealing with it instantly. I have cough variant asthma, and that stuff gave me a really bad attack of it.

However, pump someone up with enough steroids and Benadryl (diphenhydramine), and asthma doesn't stand much of a chance. It turned me buggy, but I could breathe! Good thing, too, except for my sister and nurse. Dexemethasone turns me into a talking machine and I can't seem to stick to one topic longer than two minu ... wait ... a SQUIRREL!...

Oh, sorry. What was I saying?

So day one was cut short, and day two was approached with great caution. I was premedicated with steroids and Benadryl (and twice my usual dose of blood pressure medication) and started very, very slowly. They had a nebulizer right there, ready to hand.

And I was fine. Side effects galore, of course, but they were from the Benadryl and the steroids, not the Darzalex. Now I get to take 25 mg of Revlimid every day, have an infusion every week for several months, and see if that knocks everything down.

If it does, wonderful. If it doesn't? Well, then I will be fully eligible for the CAR T-cell trial and I'll still have Pomalyst in the treatment queue.

Anyway, That was my first day on Darzalex. Thank heaven's for a port.

[goldmine848]

Re: Diana and Darzalex (daratumumab)

by goldmine848 on Thu Nov 15, 2018 7:14 pm

That's quite a story. Attitude is everything when dealing with treatments and its side effects and you have a great approach to the challenges that you are facing. Keep up the positive vibes!

[Pepperink]

Re: Diana and Darzalex (daratumumab)

by Pepperink on Fri Nov 16, 2018 9:16 am

Diana,

As a fellow member of the "Darzalex Club," I am very interested in following your experiences along that line.

As a big fan of your writing style, I look forward to anything you post.

I have read most of your past posts, and behind your somewhat laid-back and ironic comments there is a lot of struggle and pain.

You have shown, and continue to show, great courage in the face of a bad hand. You are an inspiration to many others who feel overwhelmed at times.

God Bless!

[kjpoppit]

Re: Diana and Darzalex (daratumumab)

by kjpoppit on Tue Nov 20, 2018 12:40 am

Good luck with your treatment. Like you I have the same high risk factors and just finished my second auto transplant. I will be doing Kyprolis and dex for maintenance. The plan is to keep Darzalex in mind for my next relapse. Hopefully that won’t happen for awhile. Then maybe CAR T after that. Hopefully CAR T will be more readily available when my time comes.

[Mike F]

Re: Diana and Darzalex (daratumumab)

by Mike F on Tue Nov 20, 2018 11:34 am

Great report, Diana! A lot of us will likely end up on Darzalex so it's good to know what to expect.

I hope my attitude stays as good as yours - keep be bopping!

[dianaiad]

Re: Diana and Darzalex (daratumumab)

by dianaiad on Wed Nov 21, 2018 3:13 pm

Second week on Darzalex (daratumumab)

I showed up at 8:30, having taken my dexamethasone, blood pressure medications, and the loratadine (Claritin). I brought my nebulizer, the medications for that, and my inhaler, all ready to go. Didn't need them at all. Whee!

I also, of course, brought my completed Santa, so I could show the nurses what he looked like all dressed, and the companion reindeer to finish knitting. All ready for the long day. I had my sister with me, and she worked on a baby blanket for my granddaughter (due in March, currently named "Christine,' or Chrissy for at least this week).

They premedicated me with the Benadryl (diphenhydramine). Wow, that stuff hits fast. They also gave me an extra dose of steroids, then started the Darzalex.

Now last week my blood pressure just kept climbing during the treatment, until it got all the way to 169/70. Dang, when your blood pressure is that high, that stupid cuff hurts.

This week, though, my blood pressure stayed low. In fact, at one point it was the lowest I've seen it in years, 90/40. No wonder I was sleepy and dizzy most of the time. One thing; when it is that low, you can hardly feel the cuff when it inflates.

By the end of the day, though, it had climbed up to 164/40. Nobody seemed worried at all about it, either up or down. I was curious about it though. Normally on days when I take that much dex, my blood pressure goes way up and stays that way. Does anybody have a clue why it would be down?

Anyway, other than that, everything went very, very well, I'm a bit shaky today, but that's pretty typical with the dex, for me. I did remember something important from the last time I was on Revlimid. Take it in the morning, or else I won't get any sleep (it causes insomnia for me), and a loratidine a day prevents 'Revlimid rash,' at least, again, for me. It's only been a week on the Revlimid, but I'm already dealing with neuropathy and muscle cramping in my hands and feet.

Well, that might be due to the increased pace of "Christmas knitting," but I'm going to blame it on the Revlimid.

[Nanjeanne]

Re: Diana and Darzalex (daratumumab)

by Nanjeanne on Wed Nov 21, 2018 7:27 pm

My husband will have his fourth infusion of Dara on Friday. After his first infusion he hasn’t had any reaction so will be the 90 min one finally!

Good luck to you and and all who are on this journey. Love reading your posts!

[borber]

Re: Diana and Darzalex (daratumumab)

by borber on Wed Nov 21, 2018 8:15 pm

Diana,

As many others have, I've carefully read all your topics, all of them are really helpful for attitude and of course very informative. Thank you and best wishes with this next journey!

P.S. And you know what? You're a real writer! ))

[Nancy Shamanna]

Re: Diana and Darzalex (daratumumab)

by Nancy Shamanna on Thu Nov 22, 2018 9:30 am

Dear Diana, you are an inspiration for your determi­nation to improve your health by under­going these strong treat­ments. Along with all the other well-wishers, I hope that all the treatments work to put you into a remission. I have not taken Darzalex, but have undergone two years of 25 mg. Revlimid plus weekly Dex, and know about the cramping in the hands while doing needlework and knitting. I switched over to my sewing machine then, since I have always enjoyed the fibre arts. Your knitted santa and reindeer sound nice. I am doing crafts now too, for gifts and the tree, and am even finishing up a correspondence class in counted canvas work! Congratulations on the upcoming arrival of a grandchild, for that is just marvellous! It is helpful for others to read your cheery posts too, about the treatments you are taking now.

[dianaiad]

Re: Diana and Darzalex (daratumumab)

by dianaiad on Mon Nov 26, 2018 8:09 pm

Communication.

It's a good thing.

I had (as I hope all of you have had) a lovely Thanksgiving. It was a little tough, because my niece, who hosted it this year, lives thirty miles (50 km) from us as the crow flies. If you just get on the road and go straight, though, it's about 20 miles (have you actually watched crows fly?) .

Lot's of good food, lot's of good company, and Shani (the niece) removed her Thanksgiving apron and showed us her "The turkey isn't the only thing in the oven!" T-shirt. She had also, very discretely, posted a picture of an ultrasound on her fridge. Not that that was new; she kept a picture of an ultrasound of her first baby there. You had to look closely at the date to see an anomaly.

Then of course there was the giggling between her and her mother in the corner, wondering who would win 'the pool.' Took some of us longer than others.

So now my baby thing making deadlines have doubled; granddaughter in March, grandniece eight weeks later. Well, I'll certainly have something to do during Darzalex infusions!

Especially when they do stuff like they did today. I got there, got the Benadryl (and whoof, does that stuff do a number on me!) and steroids to pretreat me. Took an hour and a half for the pre­treatement, and then I waited, for about an hour. Finally, at about noon, the nurse came in and told me that they were sorry, but they didn't have the medication. They were only sent half a dose.

So, I have to come in tomorrow to do the infusion. It's a darn good thing I have stuff that needs doing that I can do better at the infusion center than I can do at home, like uninterupted knitting. It wasn't all bad, though. I was supposed to come in on Wednesday for Zometa, so I asked if, since they had already hydrated me through the roof, couldn't they just give me the Zometa now, and then I wouldn't have to come back on Wednesday?

A lot of hemming, hawing, and dithering, then, sure. So I got the Zometa today, and I'll get the Darzalex tomorrow. Works for me!

As far as the Darzalex side effects go, I'm a little curious. On 10 mg Revlimid, my WBC was always very low: really skating the bottom line. Now, however, with 25 mg of Revlimid and the Darzalex (both of which are supposed to be a problem with one's ANC), my own ANC is solidly in the middle of 'normal.' 6.5, at my last test. On the other hand, my platelets, though still good, are definitely falling. 234; the curve is a very straight line. If the numbers progress according to the last three tests, my next one will see them 'under the limit.' I don't know what is done when that happens, but (shrug) we'll see.

At this point I think that the Darzalex isn't giving me much grief (unless there isn't any to give me, just sayin'), but the Revlimid and dex are up to their old tricks: neuropathy, muscle cramps, insomnia until I crash. You know, same old, same old.

I'll write more about my aborted Darzalex journey tomorrow, after I actually get the Darzalex. ; 'scuse me, I have two baby dresses to knit, two quilts to make, and a carry on bag for my sister. Before Christmas.

Hey. at least I got out of jury duty.