Deauville Score 2

Sandy Ray

Well I posted inside a thread but thought I would post it in a new discussion because threads sometimes get old or jumbled.

Finished RCHOP July 3 ,2017.  PET scan in early September showed some activity and a Deauville Score of 4. My local Oncologist wanted me to go out to MD Anderson since my spleen was so enlarged and the areas of activity were on the spleen. He thought they might do a biopsy of the spleen and felt better about me having that done at MD Anderson.

Well they did another CT with contrast and PET scan. Their results Deauville Score of 2 complete response to treatment! So enjoyed a trip to MD Anderson with my wife. Took a little side trip to Houston Zoo and nice dinner out. Did not enjoy the contrast so much but the test results were quite welcome.  Flew back home to Alabama and spent some time with the grandkids. 

Still getting back some strength gaining weight and enjoying life. The tough times hopefully make us appreciate the good times and those who make the good times special.

Thanks for all the prayers and well wishes. 

Sandy Ray

dana-mihaela

Sandy Ray

Congratulation for your second good scan. This is why my doctor does not rely on PET scan that much. They can be deceptive and show some activity when it is none. I wanted to say that when you posted first time about your scan it was also so close to finishing chemo to be already a relapse.

Very glad for you, good luck

Dana

yesyes2

PET Scan scorings

I have had more PETs than I should have had during and after my 2 bouts for NHL.  I was receivng PET/CT 3 times a year for about 4 years.  In all that time I never heared of the Deauville Scoring system.  All PET/CT scans were done at the same center and they only used SUVs.   Although done at a community hospital all scans were sent to UCSF for review by my Hemotologist/Oncologist at that facility.  Is this scoring system new or more favored on the east coast?  Very curious.

Thanks,

Leslie

yesyes2

Sandy Rae

Congratulations, great news,

 

po18guy

yesyes2 said:

PET Scan scorings

I have had more PETs than I should have had during and after my 2 bouts for NHL.  I was receivng PET/CT 3 times a year for about 4 years.  In all that time I never heared of the Deauville Scoring system.  All PET/CT scans were done at the same center and they only used SUVs.   Although done at a community hospital all scans were sent to UCSF for review by my Hemotologist/Oncologist at that facility.  Is this scoring system new or more favored on the east coast?  Very curious.

Thanks,

Leslie

PET/CTs

Less scanning and lower rads per scan is coming to be the norm, for obvious reasons. Since 2008, I have had 45+ CT series and probably 15 PETs. Secondary Myelodysplastic Syndrome (MDS) may be attributed to that radiation, but we will never know. I have received more background radiation than Methuselah, who reportedly lived 969 years. Guiness book stuff?  

PBL

Deauville

Deauville is a posh seaside resort in Normandy, France. The Deauville scale was established during a medical congress a few years ago.

The Deauville score relates tumor uptake values to those of the liver and the mediastinum. Here is how it works:

"The scale ranges from 1 to 5, where 1 is best and 5 is the worst. Each FDG-avid (or previously FDG-avid) lesion is rated independently.

1. no uptake or no residual uptake (when used interim) 
2. slight uptake, but below blood pool (mediastinum) 
3. uptake above mediastinal, but below or equal to uptake in the liver
4. uptake slightly to moderately higher than liver
5. markedly increased uptake or any new lesion (on response evaluation)"

(extracted from: https://radiopaedia.org/articles/deauville-five-point-scale)

Basically, as I understand it, post-chemo any number from 1 to 3 is considered "complete response". However, these imaging techniques being very sensitive, the patient's carbohydrate/sugar intake and physical activity in the 48 hours prior to the PET can have significant impact on the results (i.e., the scoring).

PBL

Evarista

Very good news, Sandy!

Couldn't ask for a better outcome, right?  Surely worth the trip.  I have the good fortune of being at an NCI-designated cancer center. Even so, I do know people here who go elsewhere for second opinions (MDA, Sloan-Kettering).  Just a reminder to others that it is very possible to have yourself & your case "managed" by those NCI-center specialists while receiving your treatment at your local facility.  Again, I know quite a few people who have done that and if you can manage the finances of the trips, it may be worth doing for some. 

Glad you are well and hope to catch up with you on the strength recovery...I'm up to 3 to 4 miles per day walking + treadmill and my big milestone this week was climbing stairs hands-free!  Hang in there everyone.

 

illead

Great news

I too think I got lost in the middle of that thread so am planning to post another about our trip to MDA.  As before, many congrats, I know you are greatly relieved.  We have been wanting to go to the zoo the past two times and were definitely going to go on Friday until they scheduled Bill for a neupoghen shot.  We're trying to figure out how to get there by the rail or bus but don't seem to get any definte answers from anyone.  We don't rent a car, just take the hotel shuttle but it doesn't go to the zoo.  Is it a nice zoo, it looks huge on the map.

Becky

po18guy

Great news!

I consistently recommend that cancer patients at least consult (if not receive treatment) with a National Cancer Institute designated comprehenive cancer center. They have the best and brightest, conduct clinical trials and possess the latest research data.

Sandy Ray

illead said:

Great news

I too think I got lost in the middle of that thread so am planning to post another about our trip to MDA.  As before, many congrats, I know you are greatly relieved.  We have been wanting to go to the zoo the past two times and were definitely going to go on Friday until they scheduled Bill for a neupoghen shot.  We're trying to figure out how to get there by the rail or bus but don't seem to get any definte answers from anyone.  We don't rent a car, just take the hotel shuttle but it doesn't go to the zoo.  Is it a nice zoo, it looks huge on the map.

Becky

Zoo

The zoo is OK. They were doing a lot of exhibit update. We road the shuttle to MD Anderson since we do not rent a car when we go. It is about a mile walk to the zoo. We walked there and back and while at the zoo. Of course we took a few rest stops in between. Amazing how much a few months changes things . In March when we first went to MD Anderson walking down the hall would have been a colossal feat.  That was my longest amount of walking since I was diagnosed. I slept good that night with all the walking and the good news from the doctor.

Sandy Ray

Rexmax

Good news Sandy Ray!

Great to hear your good news! I started the Rituxan maintenance this past Monday. Will be getting my post chemo Pet mid January. If anyone has any info on do's and don'ts on the maintenance program I would really appreciate it thanks. Wishing all a great day...

illead

Hi Sandy Ray

We know what you mean, Bill was in a wheelchair to get around MDA the last time, they even hung it on the back of the tram while we rode to the Mays bldg for his petscan.  It made me sad to wheel him around.  Those kind of things are not in our vocabulary.  It was worse when he was first diagnosed though.  It is amazing how fast lymphoma reacts to chemo and how fast the patient rallies back.  So glad that is over for you too.  Thanks for the info on the zoo, maybe next time in Dec. we will go.  I am sure there was a lot of clean up and fixing to do after Harvey.   

Rexmax, Bill did fine on Rit maintenance, we just lived our normal routine and he had no problems with it, hope the same for you.

Becky

lindary

Rexmax said:

Good news Sandy Ray!

Great to hear your good news! I started the Rituxan maintenance this past Monday. Will be getting my post chemo Pet mid January. If anyone has any info on do's and don'ts on the maintenance program I would really appreciate it thanks. Wishing all a great day...

Rituxan maintenance

Mainly, enjoy the time. I brought some favorite snacks. Cheese Nips, apple slices, yougurt, brownies (Fiber One) and of course a large bottle of water. Sometimes the puzzle from the paper and always a book to read. It's not always easy to take a nap there so I usually took one when I got home. In fact, that was my only plan for the time after treatment. 

It is so much more relaxing than chemo.