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Does anyone have mantle cell Non-Hodgkins Lym

flowingchi
Posts: 5
Joined: Jan 2009

I would love to speak with anyone who has MANTEL CELL Lymphoma.
WHat treatments did you do? and when were you diagnosed. My husband was diagnosed sept. 11, 08 and has undergone 5 out of 6 rounds of RCHOP. Now the Pet scan show "no cancer" and yet the doctors say " IT WILL COME BACK" So what treatments are people doing after they go through their initial treatment. Are you waiting.. are you doing stem cell replacement.. are you doing Ritaxin maintenence How long is the longest remission for MANTLE CELL .. i would love to speak with someone.

gmusgrove
Posts: 15
Joined: Mar 2009

flowingchi

I was dx with MCL (Mantle Cell Lymphoma) on 04/15/08. The cancer was located in the lympnodes in my colon and in a couple other areas. I was stage 2E. Cancer was found during a colonoscopy. I started with 2 rounds of R CHOP chemo then had another colonscopy. Then had 2 more rounds of R CHOP then my third colonscopy. The colonoscopy showed the chemo had done a major reduction of the cancer. I had 2 more rounds of R CHOP and was schedule for a SCT (Stem Cell Transplant). My oncologist told be that the MCL could return within two years and that to reduce the chance of the cancer coming back the transplant was recommended. I went to Dallas, TX to Baylor University Medical Center / Texas Onocology for the SCT. My cancer was not in my bone marrow and I was able to use my own SC. After harvesting my SC I received a heavy dose of chemo call BEAM. The transplant was in 09/08 and by 12/08 I was in remission. My last colonoscopy in Dec. show that there was no sign of the cancer. I am now have my blood tested and see my oncologist every two months. I am 53 years old. Reading about MCL was only a few years ago they would do the first chemo and then wait to see if it would come back. But since a lot of casing showed a return of the cancer, SCT seems to be a more first plan. I pray you husband is doing well. Also where was his cancer. If you need to talk let me know. gmusgrove

easyed1948
Posts: 2
Joined: Mar 2012

10/04 - diagnosed with MCL - there are othere things but......

10/05 - chemo sytarts - r Hyper CVAD - dropped the Vindicrisine element as it was "turning off" my fingertips and especially my feet

11/05 - (1 week only) ICU because "they think" the chemo shrank tumors on the intestine so I developed peritinitis and so had a bowel re-section including the removal of the ileo-secal valve - So far, peeing is frequent and pooping is frequent and explosive even after I dropped milk (rats) - for 7 years

2/06 - home resting

4 /06 - stem cell collection

7/06 - stem cell transplant

7/07 - certify scuba - no chemo

3/12 - re-currence - 30-day plan with bendamusitine and rituxin

11/12 - re-insertion of chest port (I whined about sore arms) - onto the 90-day plan with rituxin

Now, there's that mengioma...

I don't know everything but, I been down the road a bit.

 

easyed @

www.herschamoley.org

 

 

 

 

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