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Michelle: One year remission so far, despite relapses and change to DLBCL

More detail on what worked and didn't work for me. 

Remember each case is unique, don't get discouraged that some didn't work for me. 

Original scans showed neck, armpits, 16 cm chest mass, spleen involvement, and lymph nodes around kidney involvement. Biopsies showed bone marrow involvement and follicular indolent and aggressive cells in the lymph nodes.


8 rounds given 14 day apart left me with about 20% of my cancer left over. A biopsy of a lymph node under my left arm showed only follicular indolent cells left. Small amount of good news, the aggressive cells appeared to be gone.


Clinical trial. Great new treatment, no side effects. Meant for follicular indolent cancer. Unfortunately after 3 rounds my scans
showed the subcutaneous Large B-cell NHL cells on my back. This is bad news. As follicular people, we do not want the the cancer to spring up outside of the lymph nodes. The doctors don't like transformation of the cancer and they don't like to treat more than one type. They don't have as great of success with these scenarios.


Back to the nasty traditional chemo that makes you sick and makes your hair fall out. Only this didn't work for me either, after two treatment my spots on my back had grown. Large B-cell outside the lymph system is a mean sucker.


Really nasty stuff. I had to be hospitalized for my two rounds. They like to keep a close eye on you with this one. It did the trick and got rid of the last of the follicular indolent and the Large-B Cell. My second round was used to prepare me for harvesting for a stem cell. They drop your counts really low with this and then rebound you with lots of Neulasta and Aranesp.

Auto Stem Cell Transplant using BEAM and Zevalin

Harvest was relatively easy, two days of about 4 hours hooked up to what looks like a dialysis machine. It has some miraculous filter to pull out stem cells. Zevalin was outpatient, also relatively easy. Thank God for new inventions. BEAM wasn't any worse than the previous chemos except the one where you have to eat ice for an hour while it infuses to keep from getting mouth sores. That was odd. I spent one week in the hospital for the BEAM and two more waiting for my counts to come back up. 

Sounds like a long time but five years ago people spent two months waiting. They weren't fortunate enough
to have Neulasta and Aranesp. After that I just had to get my strength and my immune system back. Platelets are still only 75 but my anemia was gone after 6 months and my white blood cells were 100% after 9 months. I am just now getting my childhood immunizations after a year. MD Anderson predicts that 70% of their stem cell transplant patients will get long term remission. 

From reading online I guess that means 5-10 years. We are so lucky with all of the research going on for Non-Hodgkins Lymphoma. As a well-read cancer survivor, I am extremely hopeful that they will have even better treatments when my cancer comes back. They told me they are keeping an allogeneic stem cell transplant in their back pocket for me. That way I get someone else's immune system to fight my cancer. I am glad to put that one off until they make advances, too many
risks of chronic health problems from that for my taste.

The moral of the story. We need the old chemos to knock the disease down and the new treatments like Rituxan and Zevalin to keep it away longer. The new treatments give me hope. I lost my father in 2000 to NHL Large-B Cell and my uncle in 2002 to NHL Mantle Cell. Both died within three years of diagnosis. I have to hope that the new treatments will make the difference for me and you. We have some living to do....

~ Michelle (nhl-follic)

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