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Anyone familiar with or been treated with R-IVAC?

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

Hi.. I'm a 42 yo diagnosed with a high grade "double hit" lymphoma in July 2012: it is considered one of the most aggressive sub classes of DLBCL with an add'l mutation characteristic of BL. I've completed six cycles of DA R-EPOCH. I've seen four oncologists, including three specializing in lymphoma. My primary onc recommended 8 cycles of DA R-EPOCH + CNS Prophylaxis. The 2nd onc from MSKCC recommended 6 cycles of DA R-EPOCH + CNS Prophylaxis + "mop up" with SCT. The other two lymphoma specialists recommend a more aggressive regimen, essentially higher dosages of MEGA chemo, but they don't think CNS Prophylaxis or SCT is necessary since my BMB was negative for lymphoma & the cancer had not metastasized.

The onc from John Theurer Cancer Center at Hackensack UMC recommends "mopping up" with a more intensive treatment called IVAC, which includes MEGA IV dosages of Ifosfamide, Etoposide, Methotrexate & Cytrabine. I'm ruling out SCT: the decision is whether to finish my treatment with R-EPOCH or to try the more aggressive IVAC for at least 2 more cycles. BTW...After cycle 3, the CT Scan showed that the tumor in the mesentery shrunk from the size of an avocado to the size of an olive. I had a PET Scan today. I expect the tumor to be gone; although the cancer could be microscopically present in the blood & lymphatic system. Would very much welcome any input and experience with this regimen. Thanks!

JP

-DX: "Double-Hit" NHL | High Grade, Bulky Stage II Translocations: BCL2 (common with DLBCL) & c-MYC (common with BL)

-Treatment: DA R-EPOCH & CNS Prophylaxis, Aug - Dec 2012 (6 cycles) + R-IVAC starting Jan 2013

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

Would like to provide an update on my progress with DHL. I completed the seventh cycle of high-dose chemo therapy, and my first round of R-IVAC (previous six cycles were DA R-EPOCH). I received more than twice as much chemo from once cycle of R-IVAC than I received in six cycle of R-EPOCH combined. The doctors say you can't compare them quantitatively...the heck I can't. They're not the ones getting 36 grams of toxins pumped into their bodies in 5 days.

I'm feeling okay even though I've been severely neutropenic & thrombocytopenic for 4 days & counting (Jan 14 - Jan 17). My ANC has been at 0.0 since Mon & my platelets were at 9 & dropping (normal range is 150-400) on Mon. I had my first transfusion of platelets on Tue, and it's up to 32 (still very low). I'm on Day 8 of the neupogen injections. I get another CBC today (Jan 18) & hope that my ANC & platelets go up. The hospital I'm going to is flooded with flu patients. Influenza outbreak + very low WBC is a bad combo, but I'm still holding on! :-)

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi JP,

Just wanted to say hi, I don't know about the treatments that you're going through but I'm sending you lots of positive energy. You can do this...you're gonna make it! Stay strong (((huge hugs))) 

Sincerely,

Liz

dlicon's picture
dlicon
Posts: 1
Joined: Mar 2013

I have just completd 4 cycles of HYPER-CVAD for very aggressive Burkitt's lymphoma and am now told I will be starting R-IVAC today. They are only calling it 'IVAC' but I am al getting Retuxin ( i think that is he R plus intrathecals in parallel. PET scan appear to have killed initial problems but now I have issues in another area

I would love to talk to you more about your situation and process and share info.

David Licon
www.facebook.com/liconslymphomafight

catlinwade
Posts: 8
Joined: May 2011

I had DH lymphoma, stage one (no mets). Highly agressive, tumor went from pea size to lemon size in two weeks. Diagnosed in 2011. Got 6 rnds of R-Epoch with rituxin, 20 cycles of radiation and a SCT. Long year ! As of today's date 4/2013, I am healthy and happy with some minor issues (numb feet, toasted salivary glands on one side) and have learned to live with them. I exercise daily, was able to bowhunt for elk last year and generally feel great. Have had two colds and my body dealt with them just like the used to. Have traveled to Europe and Belize with no problems. There is hope for folks with this very agressive cancer. Good luck and be persistant, stay positive and don't be sedentary no matter how bad you feel.

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