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Refractory DLBCL - Anyone?

Shoopy
Posts: 210
Joined: Jul 2013

I had my second PET scan today.  I've only had two R-CHOP treatments.  Doctor is concerned that I'm not reacting to treatment like he first thought.  Third R-CHOP is suppose to be on Friday, July 19th.  I know I shouldn't self-diagnose but I've noticed the nodes along my jaw and in my pelvis the last 3-4 days.  These areas were never impacted before.  Anyone else go throught this?

I've read up online about the next line of treatment (and the prognosis).  R-ICE does not sound fun at all!

Any input appreciated while I wait a day or two for results.

Thanks,

Karl

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Karl,

I am curious as to what would make the doc think so early-on in your treatment that things are not working well ?  Blood tests ?  I hope his worry is unfounded, and that the meds are working.

I had a different disease, and took different meds, and have been "clean" now for about 4 years, but I also know that if I relapse my treatment would be R-ICE, or a mega-dose option called Hyper R-ICE.  

Another pre-SCT combination often used is Hyper-CVAD, but I cannot receive that, since I have already met my lifetime max of Adriamycin.  I read a bit about R-ICE, but not too many contributors here have written about it.   Perhaps someone will.

I hope it is not necessary for you, regardless of how harsh it may or may not be.

max

Shoopy
Posts: 210
Joined: Jul 2013

The thing that initiated My doc's concern was that my spleen (originally the size of a large grapefruit) had not completely returned to normal after two treatments.  It went down by only 50%.  Now, the thing that concerns me is the fact that I can feel lymph nodes in places I couldn't before (jaw line & pelvis).  I don't know if that's normal or not.

Rocquie's picture
Rocquie
Posts: 496
Joined: Mar 2013

After 2 cycles of R-CHOP, a PET scan revealed that my lymph nodes (especially spleen) had shrunk considerably. After my 4th R-CHOP, some abdominal nodes, which had not been present before "lit up" in my PET scan. The Radiologist wrote on the report "relapse after treatment". My doctor was very concerned, even though he told me not to put too much weight on the Radiologist's comments, since he didn't know what my treatment plan was. Indeed, my treatment was not complete. But my doctor referred me to Duke Universisty for a consultation with a bone marrow transplant specialist. I was so scared! I knew I had to get a grip on my emotions, that falling apart emotionally was not going to help heal my body.

I prayed and many other people were praying for me. I started using Guided Imagery, which I highly recommend. I especially benefitted from the work of Diane Tusek who has the voice of an Angel. (Her work is easily found via Google).

After my 6th R-CHOP, my PET scan showed complete remission! I am now receiving Rituxan maintenance for 2 years. I did not need to pursue the BMT route (which requires R-ICE first) but I know it is there if I ever need it.

I have never believed in living my life worried about the future and I won't start now. I am writing this for you because I want you to feel there is hope and to encourage you to try not to worry too much. When you find yourself worried and paranoid, seek out ways to make your mind leave you alone.

Sending my prayers and (((hugs)))

Rocquie

 

 

Shoopy
Posts: 210
Joined: Jul 2013

Thank you for the encouragment.  It is greatly appreciated.  I've always been the type of person who has thought about the future...planned for the future.  I've always thought about the 'what-ifs'.  You make a great point...I need to focus on the now.

I have managed to work about 4 hours per day in my office and the rest from home.  That has been a good distraction. 

My doctor called me and said that he will get the PET scan results today and we'll discuss them tomorrow morning.  I'm supposed to have my 3rd R-CHOP tomorrow. 

I'm going to look into the Guided Imagery and Diane Tusek.  I also need to work very hard at turning some of this over to God. 

I appreciate the prayers and hugs.  Whatever happens tomorrow...we'll keep fighting this thing!

Karl   

Shoopy
Posts: 210
Joined: Jul 2013

Met with doctor today and he confirmed that my PET scan shows the cancer is not responding to R-CHOP.  There are new lymph nodes in my jaw line, groin, armpit...these weren't lighting up on previous PET scan.  The doctor took the liberty of scheduling an appointment with a doctor at Roswell Cancer Institute (which is about 10 miles from us).  He thinks they might be able to offer me something other than R-ICE w/ SCT...but not sure until we meet with them.

Mentally, I'm in a better place than I thought I was.  I'm figuring God put in this position to beat this thing so that I can talk to others that might need to go through it in the future.

illead's picture
illead
Posts: 540
Joined: Aug 2012

I'm so sorry, that is not what you wanted to hear.  It is good though that you are going to see another doctor.  Hopefully he will have a better alternative for you.  I know you are probably getting a ton of suggestions etc., and I'm sorry if this adds to your supply, but just thought I would throw this out there.  My husband Bill has Mantle Cell Lymphoma.  He was treated with Bendamustine, (Treanda).  It is fairly new and the last time we saw his onc, he told us that it was doing so well that they are now using it for other lymphomas.  Bill has been in remission for a year and a half.  I realize this is a shot in the dark and that each type of lymphoma has different factors etc. so it probably is not even an option, but it may be worth mentioning.  Just a thought.  We sure wish you the very best and we always pray for the doctors, that they will do the best possible there is to do.  Keep up the good spirits if possible and know we are all here to support you.  Bill & Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Very sorry to hear of your bad news regarding the PET scan.  Share what Rosewell says, if you are so inclined.  Worst case, the SCT might be highly successful.

Praying for you specifically this day,

max

Shoopy
Posts: 210
Joined: Jul 2013

Illead: Thanks for all the kind words and prayers.  I don't mind the suggestions--one of the reasons I'm here (the other is to hopefully offer suggestions for others Laughing).  I will ask about the Bendamustine.  I see where it's currently in Phase III trials due to end in September 2013.  The trial is closed but one never knows.  I was slightly disappointed because the Roswell website mentioned another new drug used to treat people in my situation but the drug company just dropped.  Maybe Bendamustine will be available.

Max:  I will be so inclinded.  Not in my nature to take without giving.

The piece of good news is that I will be able to donate my own stem cells because the cancer is not in my bone marrow.  There's a higher success rate in these cases.  Plus, the PET scan showed it only in my lymph system...

Faith, family, friends, prayer, positive attitude...and a ton of toxic drugs! Laughing

 

allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

Hi Karl,

  Darn...hate to hear this news. Frown I have Follicular NHL,(currently in remission), and don't know all of the particulars with your cancer. Just makes me sad when chemo quits working or relapse happens. I'll be keeping you in my prayers and will appreciate hearing how things go for you. Take care and best wishes. Sue

(Follicular NHL-grd2-stg3-typA-Dx 6/10-age 62) In remission. 

Rocquie's picture
Rocquie
Posts: 496
Joined: Mar 2013

Karl, I'm sorry to hear the R-CHOP is not working for you as planned. But I'm thankful you found out after only 2 treatments. I'm very happy to hear you live so close to an excellent Cancer Instutite and that you have a referral to go there. I am glad to see you in a positive place in regards to your treatment, and indeed, your future.

Let us know when you are going to Roswell, so we can be praying for you. . .

My prayers to you and your family,

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Karl,

I have been assisting an older friend with Stage 4 Prostate for some time now. You may know that "normal" PSA is about 0-3.  His has been an astonishing 935 for some time now ! He has fought this 13 years now, feels OK, and has NEVER had any cancer-induced pain !  So many new drugs are hitting the market in Prostate cancer that the docs almost cannot choose among them. He just began Jevtana, and next Friday they will test him for results.  He finished Zytiga last year, after it quit helping

I hope Rosewell has a new trick in the bag for NHL when you see them.  It is also good news about your negative bone marrow involvement.  I remeber my oncologist telling me mine was negative over 4 years ago.  I asked, "That will help, right?"   He responded, "The treatment is the same either way, but your odds improve significantly without marrow involvement."   Blessed words !

My slogan here, and my state's motto, is "While I breath, I hope."

max

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