JESS

Jess remember when you posted a link to your web page about the Wall Of Hope. I visited and saw the picture with your tribute to the Stop NHL Message Board Family and when I saw Dave P. in Canada you sent a motivating warmth through my body, you reached out and touched me from the west coast. That picture sits on the wall in my office with this caption written under it. "Givers are rewarded in ways takers will never experience". Jess your a giver. Channel all the well earned good things everyone is saying about you and forget about stats. Back in the early 90's when I was stat hunting I did find some hope in a high median. I then set out to raise that number. You go Girl !!!

Jess is the new kid on the block and is leading the changing of the guard and always has an advocacy project brewing. Loved the beads idea.

dx'd 5/2000 follicular small cleaved, stage 4 tx 7/2000 - 11/2000 CHOP+Rituxan, six rounds each
12/8/2000 - declared in molecular remission - relapse 11/02

Stay strong Jess sending positive thoughts your way.


NEPTUNE

Neptune is the mysterious one. One that helped me in the earlier days to feel at home in the complexity of a medical nightmare. Despite what she herself was going through she found time to help others and ease our journey, sometimes posting from her hospital bed. Those earlier posts were my bible to getting well and I only wish I had the insight back then to save the wise words she typed. I've lost contact with Neptune like most of us and I'm too scared to mention anything on the Message Board and Neptune know that I think of your kindness and wisdom often. I remember one post where not 1 but 2 first time regulars found the strength and inspiration to post because of you, which speaks volumes of your presence to others on the net. Remember you do not have to say you just have to be and you facilitate and you will still speak volumns to us and us to you. You will always be a part of the STOP NHL Family.



Heart transplant for congenital defect, 12/94, lifelong immunosuppressive therapy.
Diagnosed with T-cell lymphoblastic lymphoma, stage 4B- 8/96. CHOP- no remission. M-BACOD
- remission 1/97.
Relapse 5/97- ProMACE CYTABOM- remission 8/97
Relapse 2/98- Autologous BMT 3/98
Relapse 1/99- Monoclonal antibody treatment, response, no remission.
Allogenic BMT 9/99
Relapse 4/00- Phase 1 clinical trial, good response, no remission quite yet.
Plus all the side effects that come with long term treatment... kidney problems, low counts, blah blah blah.Still fighting!

10/03 have major complications from treatment, too numerous to go into.

Just recently Neptune has been gracing the Stop NHL Message Board with her presence and wisdom. So good to see you back.

REED


Reed -  Dx'd Sept 19. 1991.  9-19-91 (ed.'s message   just look at that date!!!!) (Old classification) Nodular mixed stage 4 10 cycles of Mitoxantrone, recurrance and morphed into large cell, diffuse.  Bone marrow transplant (TBIrradiation and high dose methotrexate, Cyclophosphomide, Ardiamycin, Prednisone, and I think everything else)  Atologous, no match. Stem cell removal from affected marrow, experimental modification, reinsert and poof, here I am.  They don't do these anymore.  I live in the Hill country area of Texas - northwest 70 miles from San Antonio, right up the Pedernales River from President Johnson's Texas White House. Have some cows about, too many cats, and a couple of dogs, Pete and Stubby. Been here for years but thinking about pulling stakes and heading out soon. Have a 16yr old boy who doesn't wish to go to war (nor does his dad). Life's too valuable for that, cancer taught me this. 2 miles of driveway doesn't seem enough anymore. Need to go where no herbicides were ever used, land management is sound and balanced, the water's clean enough to drink, and people are happy. Not too many places like that left anymore but I know there still are, that's where I'll end-up and ya'll are welcome to come-by anytime.

SHIRLS

I was dx in February 1996 with non hodgkins lymphoma low grade, had CHOP x six and went into remission for 2 years. Recurrence in July 98, trialed a new drug (in Australia) called Rituxin, which instead of 6 months chemo, is only four injections over four weeks. 19/5/99 recurrence of this dreaded disease. Redx as Mantle Cell Lymphoma Stage IV with bone marrow involvement. Oncologists advise me to get my affairs in order as chemo won't help and he thought I would have approximately 2 - 4 months to live.

On the 5th Aug 99 I had Iodine-131 Radiolabelled Rituximab (called Bexxar) - great hope here. I am only one of nine people in Australia to have this treatment which was given to me at Fremantle Hospital, it was not a trial - trials were still starting in the rest of the world. Under Australian rules if you are terminal then you can request any treatment and receive it. The nine people who had Bexxar were all terminal, results are still not out - but I understand that all but one are still alive (and that dear old lady was in her late 80’s) (I wish my friends in the States had this same opportunity.) Stage I trials had been held by the University of Michigan (United States) and this showed that 28 of 34 patients completed treatment with 78% achieving a response and 50% achieving a complete response (CR) The median duration of response was 357 days and for CR it was 471 days with 4 CRs having a duration of 1000 days (maximum = > 1460 days). I have not received an update on the Phase I Experience yet.

I am writing this on the 28th December 2000 and can honestly say that I feel better today than I have felt for five years. I am in complete remission. My last tests on the 4th December were totally clear and I do not have to have more tests until April 2001. Relapse April 2001 stem cell harvest frozen for future transplant, commence MabThera x 4 on the 16th May 2001 with a “hot dose” on 24th May. Another remission and now living life to the fullest. 

My husband and I live on the canals in Western Australia. We live in a small town called South Yunderup which is about 100 kms south of the capital city of Perth. We sell real estate and deal exclusively in waterfront properties - and love it. I love to read (anything), walk, computors (although only a novice), gardening. Love life, my husband Reg, my kids, Samantha (33), Nathan (30) and Marnie (32) and my dog Tiffy (a poodle).

Shirls had a relapse but has made a great recovery and is still completing her to do list.

Shirls -  (Australia) (59) .   Mantle Cell Lymphoma Stage IV. CHOP 96, RITUXIMAB 98 and Hot MabThera July 99 (20 months good remission) April 2001 stem cell harvest frozen for future transplant, commence MabThera x 4 on the 16th May 2001 with a “hot dose” on 24th May.    Husband - Reg.

TRUDI & BRUCE

Saku Koivu Foundation