Has anyone one had refractory DLBCL?

Welcome, Brian.

A large percentage of our members here are in or have been through salvage therapies, and many others are in "maintenance," often for years.  They will share their stories.  DLBCL is not uncommon, so you will no doubt hear specifically from DLBCL patients as well.

The experience of second-line therapy is as varied as is the experience with first-line:  it runs from total success to anywhere short of total success.  Most folks who are in maintenance for years live healthy and active lives, and are thankful for their well-being, and have hope for the future. When I was getting first line treatment six years ago, a fellow walked in to the infusion center and jumped up in the chair while reading a newspaper. The RN came over and exchanged some small talk, and in an hour the guy was gone; he acted the way most guys act in a barber shop.  I spoke with him briefly, and he said he had been coming in for something like ten years. I did not probe and ask what his cancer was.... My point is that people can acclimate to anything, as necessary.

MEDI 551 is apparantly quite new; most of what I could find on it related to its general safety for trial use. There are not a lot of trial results out there yet. You are of course correct: it is quite similiar to Rituxan, a "monoclonal antibody," targeting the CD-19, verses the CD-20 cells.   It is possible that someone else here has already had some experience with it however.  I hope so.

I encourage our DLBCL patients to get on board here with Brian.   Reading here is certainly a live-and-learn experience !

http://www.bloodjournal.org/content/122/21/1810

max

BrianK232 said:

I had the Bone Marrow Biopsy

I had the Bone Marrow Biopsy last week and it came back negative.   

 

In terms of my tumors, the larger one is now 4.7 X 2.4 cm, so maybe .1 cm larger, but it did state that increased FDG uptake was not evident.   So it looks like the smaller one is still there and slightly larger, it is now 3.2 X 2.7 cm, so about .3 cm increase.  Additionally there are 2 FDG avid lymph ndes in the area.  

I did sign up for the trial, but will not get randomized until tomorrow or Friday.  I am scheduled for an appointment on Tuesday to start either the Rituxin or Medi-551, prior to the ICE.   The drg will be either 2 or 7 days prior to ICE respectively.  We did talk further about the CHOP-R treatment and, it was clarified that I could have had a resisitence to any of those drugs as opposed to just the Rituxin.  

Trying to stay positive at this point.   Some people have beat this with 2nd or 3rd line treatments, why not me?  Thank you all in advance.

Good luck with this trial, Brian.

You seem to be linked up with excellent providers, which is a big plus.  I have read stories of folks here who walked away from third-line treatment, and never had cancer again.

The negative bone marrow biopsy is very good news that will improve your chances also.

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BrianK232 said:

So I was randomized and I got

So I was randomized and I got RICE as opposed to ICE with the MEDI-551.   Hoping now that it was one of the CHOP drugs that I was resistant to and not the Rituxin.  Staying Positive for better results this time.  I go in Tuesday for the Rituxin and then start the ICE in Thursday.  

 

I had my first RICE treatment about 2 weeks ago. I have FNHL and the 6 rounds of R-CHOP failed to get the cancer into remission. I had no problems with the R-CHOP and the RICE went smoothly too. The hard side of RICE is that the one drug, Ifosfamide is hard on the kidneys. Even though they also give MESNA to protect the kidneys they up the saline and keep the water jug full. Drink as much water as you can. Be prepared for frequent trips to the bathroom. You want to flush your system as much as you can. When I got home the first 48 hours was drinking water and going to the bathroom. After that I no longer felt like a water balloon.

BrianK232 said:

Thank you for the tip.   I

Thank you for the tip.   I will drink plenty of fluids.  Did the RICE affect your tastebuds at all like the R-CHOP did?  Just curious, that was one of my bigger issues with the R-CHOP?

The taste buds have been affected. Somethings taste ok and others not so much. When I had R-CHOP that taste bud weren't hit too bad until around the 5th cycle. Then everything tasted like cardboard except very spicy foods. (Mexican, Thai, Indian) With the RICE, at least so far, it has been more that some foods just get a weird taste. Yet other foods taste the same. Haven't been able to figure out why the difference. I'll be interested to hear your RICE experiece.