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DIFFUSE LARGE B CELL LYMPHOMA

MANNU
Posts: 2
Joined: Sep 2013

HELLO EVERYONE,

My son who is 18 now was dx PRIMARY MEDIASTINAL DIFFUSE LARGE B CELL NHL in jan 20013, stage 3 advanced

we were upset as shud be. he was intially given 4 R chops followed by petsacan. about 70 % of the desease had gone the lymphoma was only left in the 6th rib and primarry mediastinal region rest of the places it had vanished, like L%< S$ , coller area etc, majorly was left in mediastinal region. about 8 cms big as compared to the initial 17 cms. we all were thrilled and happy that R CHOP is working well on him. 2 more RCHOPs suggested followed by pet, now the horror came back to haunt us, the lymphoma progressed, from 8 cm to 10 cms in size, although no new lesions seen, little bit still left in the 6th rib also. now salavage treatment suggested by doc, R DHAP all of them above were done in an interval of 21 days as was RDHAP. petscan again done after this 2 RDHAP, again there is remission but partly not CR. nw the size goes down drastically low. say nw it is 6 cms, again happy not completly as were expecting complete remission. Dr said idally there shud be 2 more R DHAP but we convinced lets hve one more first and then do pet. again nw the desease shows progression not much as mediastinal is stable, but 6th rib progressed little bit and new lesions seen in kidney. this was too much terrifying, didnt knw where to go what to do. Although doc had earlier suggested will go in for Autologus stem cell transplant, but that has best results when there is complete remission. met many other docs in different hospitals showed my sons report got there advise .  2 senior docs suggested go for 1 more chemo HYPER C VAD and then followed by high dose chemo ( BEAM ) and then stem cell transplant. also we were suggested to do stem cell harvesting before going for any new chemo regimen. we did harvesting nw after lot of consultation our doc decided to try R ICE. at the moment on the 3rd day of R ICE sitting besides my son, who is confused if he will survive and i m as usual feeling pity and sad for him. Anybody cud suggest if whatever is happening is common or it happens. if the lymphoma shws progression again then waht to do or if the r]lyphoma shws remission but not complete then shud we do another RICE before the stem cell transplant or go for the transplant immidiately, our next pet is due on 30th sept. waiting eagerly for the replies.

coachmike
Posts: 132
Joined: Oct 2011

Mannu

Hi im mike and my story sounds a lot like your sons. I was diagnosed with DLBCL in my neck and chest cavity. I did four rounds of R EPOCH 4 Rounds of Hyper C VAD and after scans they couldnt tell whether the cancer was gone. They could only tell with 98 percent certainty that the cancer was in remission, which left us with a choice of waiting to see or going ahead with the auto transplant. After much prayer and advice I went for the transplant. I had promised myself from the begining to GO BIG and NEVER GIVE UP! So thats what I did. It has been over a year since my transplant and I look back on it as one of my best decisions made. You see, im over 1 year cancer free! The transplant does have its hardships and anyone who says its cake is gotta be a little nutty but IT IS DOABLE. It is one of the best methods of treatment available right now. Please feel free to bring any questions to me that you can think of and ill do my best to give you my perspective. When I was going through the transplant I promised myself that when it was over and done I would reach out and help those who were dealing with the possibility of a transplant.

Shoopy
Posts: 210
Joined: Jul 2013

Mannu,

My situation is a bit different than your son's but I figured I'd share what I can.  Also, I'm about 30yrs older than your son.

I was diagnosed with DLBCL stage IV in May of 2013.  It is/was confined to my lymph system so I have no lesions or masses (other than an enlarged spleen and nodes).  I started the normal first line treatment of R-CHOP.  After two treatments, my oncologist realized it wasn't working.  He encouraged me to switch to a doctor at Roswell Park Cancer Institute.  That doctor recommended R-DHAC (different from R-DHAP).  I have received two treatments so far and last week they conducted a PET and CT scan.  I was told this week that my scans showed that I was 95% cancer free.  The plan is to receive a 3rd R-DHAC (which I'm in Roswell right now receiving) then proceed to stem cell transplant.

I had made up my mind that I was going for the SCT even before I start the R-DHAC.  The doctor told us that without the STC; it was a good bet the lymphoma would return within 1-2 years due to it's aggressiveness.  There still isn't a guarantee it won't return within that same timeframe with the STC but the numbers show it's going to delay it's return and gives me a shot at it never returning.

My doctor has said it's best to do the harvest when 'cancer free' but sometimes that's not possible.

I don't know if any of this helps.  I will keep your son in my thoughts and prayers.  Feel free to ask any additional questions.

Karl

 

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