Hello Group, I am thinking of trying 2cda on a study basis and would appreciate any input for you all. My name is Jeff and I have been in a PR from 6 CHOP's for 15 months. Last week we detected the first progression. Slightly larger spleen. Blood counts still normal and no nodes involved yet. Of course I have the option of continuing to watch and wait but I think I prefer to proceed at this time with 2cda.

Questions for the group.

• 1. Will I lose my hair again?
• 2. Any success stories out there for 2cda and relapsed MCL?
• 3. Will this preclude my from future BMT?
• 4. Will this eliminate me from future studies, treatments ?
• 5. Any other questions I should be asking my Onc?

Thanks, Jeff
DX MCL 2/97 6 CHOP's completed 6/97

2-CdA has shown good response rates on relapsed and refractory low-grade lymphomas. There have not been many studies done with MCL specifically. See
cancernet.nci. nih.gov/cgi-bin/cancer-phy_show?file=pro12208.html
www.lymphoma.org/pages/clinlist.html

There are no known reports of durable remission with 2-CdA that I know of for MCL.

re 3. Will this preclude my from future BMT?
re 4. Will this eliminate me from future studies, treatments?

2-CdA is hard on the bone marrow and T-cells. Opportunistic infections are common, even after the chemo is stopped. Its effects on the bone marrow are long term and usually preclude doing an autologous stem cell transplant and other clinical trials. Transplants work best in general after the first remission...

re 5. Any other questions I should be asking my Onc?

What's the next course of action if this doesn't work?

Tom

I am a 53 year old and I have mantle cell lymphoma dx 5/97 and treated with 8 cycles of CVP with PR. Beginning 4/98 after seeing progression of the disease, I began 4 cycles of 2Cda consisting of 5 days of treatments per cycle. Cell flow cytometry and bone marrow biopsy (bone marrow involvement of 40% at the beginning of the 2 CdA) have recently confirmed CR. No one could be more surprised than me!! I had been cautioned by one of the doctors on one of the lists that I should not encourage the use of 2 CdA because it wasn't considered an aggressive tx for mantle cell lymphoma. He said I should write back in six months in October to report my status. I am reporting astounding success and all with minimal side effects during tx--perhaps some fatigue and suppression of the white cells, but never so that I needed neupogen shots. My counts always rebounded so I could receive the next tx. I am feeling more energetic than I have since dx--like my old self!

My onc is actively researching my next step in this war against MCL and my only sibling has been tested for an Allo transplant. Auto PBSCT has not been ruled out--still looking at statistics--and am considering Rituxan as the next tx since MCL ALWAYS always always comes back--as my onc likes to tell me. I would be happy to answer any questions anyone may have and would love to have input on what others have done withe MCL when they reached remission. My onc intends to keep on treating relentlessly. I would love to have some nice quality time, but am afraid to watch and wait. What have others done? I am a daily lurker, only respond privately to individuals because I did not want to give false encouragement regarding 2CdA. NOW I am ready. Good luck to all those fighting this dread disease and know I pray daily for all those in the group. You truly are my cyber family!! Sandy in Illinois

My Dad had 2cDA and I am not sure his bone marrow ever recovered from it. He eventually developed an opportunistic infection - never prophylaxed - and died from it. Please discuss these issues with your oncologist.
David

Hello all!

Due to all the questions I received following my post yesterday concerning my success with 2CdA treatments for my relapsed MCL, I decided to try to answer most of the questions in one post. Also, I am a newbie on the computer and don't know how to cut and paste, so please bear with me.

2CdA, also commonly known as cladribine and leustatin, has the long name of 2-Chlorodeoxyadenosine. It is a chemo drug belonging to a group called antimetabolites that are used to interfere with the growth of cancer cells, which are eventually destroyed. The growth of normal body cells may also be affected . Antimetabolites kill resting as well as dividing cells. There are three drawbacks to the use of 2-CdA which I found in my research and a person should discuss with their onc. First, using a purine analog like 2-CdA may make stem cell harvesting more difficult. Two, 2-CdA hits the T-cells hard, allowing opportunistic infections to occur. And three, like platinum-based agents, uses of these agents may make you ineligible for certain clinical trials.

As for how the 2-Cda was administered to me---I was given infusions of the drug mixed in a bag of fluids for five days in a row. Each I-V took approximately one and a half hours to administer. No pre-med anti-nausea medicine was necessary. Each five-day course was considered to be one cycle. I received four cycles of 2-CdA spaced three weeks apart. (I understand that 6 cycles are also sometimes given--but my onc says "more doesn't necessarily mean better".) Low blood counts ( for me the white count and the platelet count ) and fatigue were my only side effects. My counts always bounced back without neupogen or epogen shots or transfusions. I also experienced a few mouth sores, but never bad enough that I could not eat or drink. Even with low counts, my activities were never restricted ( I swam, played volleyball, worked with my flowers, vacationed at the ocean, went to malls and large gatherings ) and I never got any serious infections--not even a cold. ( I did pick up a strep infection from my daughter which penicillin knocked down immediately.)

Please understand, I am not endorsing this treatment--just reporting that it worked for me. I realize that every MCL patient has his/her own history and with this dread disease what works for one may not work for another. I also know that my remission time will be limited and the reason my onc gave me the 2-Cda was to try to give me some nice quality time with my family this summer--which it did!! I am eternally grateful for that and never expected a true remission. Even though I am in this remissive state, we are quickly and actively researching my next treatment--which may very well be a transplant of some type. I have tried to avoid the transplant for as long as possible, hoping the researchers could obtain some better statistics and newer protocols. But I do realize that they want us MCLers for the BMT when we are in remission. My onc and I hope to make this decision this week about the next treatment. (It does seem unfair that I can't just ENJOY for a while!!)

I know this has been quite long and I hope I have answered everyone's questions.I know what tough decisions you are all making . I pray that the cure for all NHLers is truly just around the corner. Hang tough till then.

Sandy in Illinois

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Gathered by Vera Bradova © 1998
Updated 10-25-1998