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Has anyone one had refractory DLBCL?

BrianK232
Posts: 13
Joined: Aug 2015

I was diagnosed with DLBCL in April.  Just a few days before my last scheduled treatment of R-CHOP, I felt a lump in my abdomen.  I got the treatment and my PET was moved up to this past Friday.  I had started with one larger tumor and 2 smaller ones.   The smaller ones appear to be gone, but the larger one (which had shrunk by about 50% after round 3) is now larger, though I believe still smaller than original.  Initial size was 6.6 x 4.4 x 3.2 cm with 11.1 SUV  and in June was listed as 4.6 x 2.4 cm and only minimally FDG avid.

I have an appointment for another bone biopsy Wednesday.   My Doctor has also given me information about a trial for MEDI-551.  This drug attacks the CD19 Protein instead of the CD20 Protein that Rituxin targets.   The doctor feels that based on the frowth of the tumor while undergoidn treatment that I have a resistence to the Rituxin.  The suggested plan is to do the MEDI-with ICE.   

Just curious what kind of success others may have had with Secondary treatments.  I know stats are mostly outdated, yet at the same time I know with each treatment that does not work my odds take a hit.  I am determined to beat this beast though and just hoping that I make the right decisions in how to attack it.  

Thanks in advance for any information and sharing.

Max Former Hodg...
Posts: 3699
Joined: May 2012

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
Posts: 13
Joined: Aug 2015

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.

Max Former Hodg...
Posts: 3699
Joined: May 2012

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.

max

BrianK232
Posts: 13
Joined: Aug 2015

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.  

 

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

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
Posts: 13
Joined: Aug 2015

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?

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

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. 

BrianK232
Posts: 13
Joined: Aug 2015

I will keep you posted.  With CHOP everything seemed off for the first week after.   We will see how it goes this time.

BrianK232
Posts: 13
Joined: Aug 2015

Just wanted to share a brief update.   I finished round 2 of RICE this past Saturday.   Feeling good overall.   No affects in the hospital and the only affects at all appear to be a slight drain in energy as well as my mouth feeling off.  More the tongue almost feeling like the taste buds have exploded or like a layer of something is over it.   Wierd for me and makes it hard sometimes to want to eat or drink just due to the sensation.

 

I have a PET scan scheduled for 10/15.  If all goes well there I will have my final round of RICE 10/23.  Unfortunately that is my sons 7th birthday and I will be stuck in the hospital, but a small price to pay to potentially celebrate many more birthdays with him.   From there it would be a stem cell transplant.  Hoping to get more information about that at my next appointment.   I am not to sure of the process,   Doctor does seem optimistic though as at my last appointment he did a manual examination and indicated that he believes the tumor had shrunk.   Continuing to move forward and hope for the best.  

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

After my second RICE all the counts went down. White cell count came up first with the platlets making a sudden surge a few days before the next RICE. Red cells and Hemoglobin did not come up so when I had the 3rd RICE I ended up getting 2 transfusions of blood, one before the chemo started and another 2 days later. Went in on Thur and came home on Sun. Sat night I slept the best I ever had for being in the hospital. Nurse let me sleep in the morning so I didn't get up until 9 am instead of my usual 7 am. When I got home I slept off and on the rest of Sun. Monday Rituxan treatment and chemo fog. That afternoon and Tues spent on phone getting other test scheduled and rescheduled. Still had the chemo fog. Today chemo fog not bad, it kind of comes and goes. I know the counts are going down because my energy levels came up a bit on Tues and now seem to be down. It seems like each round of RICE has hit the red cells & hemoglobin harder. 

I am guesing that I will be doing SCT in Nov. I have 2 adult kids with birthdays in Nov. Oldest will be 35. I am probably going to miss Thanksgiving too. I am gratful that my kids have decided to pick it up and organize somethng for Thanksgiving. My husband will need it. I am guessing you may be doing SCT around Christmas. That would suck too.

As for tests. So far I had to see the dentist to make sure there are no infections in the teeth or gums. Next week I happen to have an appt with my primary dr, not part of pre-SCT but it doesn't hurt. In 2 weeks I have a PET & CT scan scheduled, same day, and then a few days later the Bone Marrow biopsy. From what I was told by the SCT team, if all looks good I will have tests on lung & heart. Somehwere in there is the drug to stimulate the t-cell growth. There wll be one shot at the dr office and the rest given at home. Then the harvesting of the cells later. Do't have dates on those yet. 

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