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Patient-to-Patient > Patient Stories

Last edited: 06/29/2013

 

PATIENT STORIES 

Providing hope, inspiration and sometimes invaluable lessons

  Patient Stories 
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Encouragement & Tips  
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Treatment Experiences
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Experiences
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Stem cell rescue 
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Radioimmunotherapy
(RIT

In Memorial

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Jamie (1776 - webmagic)
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Lisa de Parry
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Charles Brennan 
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Page Irby
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Antonio Reis
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CLL Memorial
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Remembering Mildred - mom (my hero and friend)
OTHER GROUPS
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Hodgkins Lymphoma Stories WebMagic
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WebMagic - Our Stories
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CancerGuide Stories
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Patient SCT Stories Cyberfamily

Shared Patient Signatures 

 

NOTE Individual experiences cannot inform us about the risks of the protocol to others or the potential to help others.   Be mindful that each lymphoma and patient can be unique.  See Factors that Determine Treatment Decisions 

Also see Perspective: On Letting the Patient Decide, and the limitation of personal accounts  

And Testimonials versus Patient Stories Evaluating medical claims 


Personal Stories and Guidance:

To have your story posted, send it via e-mail by clicking here.


Encouragement and Tips

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Andrew:
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on the Resolving of Fear Stemming from the Diagnosis of MALT lymphoma
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MALT in the eye with commentary and questions
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Andy: 
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On Letting the Patient Decide, and the limitation of personal accounts
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Andy's journal:  from diagnosis to treatment
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Anjou:  Her doctors doubted her symptoms and missed the diagnosis of lymphoma
  
"The mailman was right, the doctors were wrong. I was not totally crazy, I had cancer." 
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Barbara on W&W for MALT
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Betty: Indolent NHL, still untreated
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Bruce: diagnosed with NHL in 1986
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Daisy: Caregiver's perspective on hair loss - it isn't really a vanity issue
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Diana: My experience with Chlorambucil for treating MALT
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Ian:  20 year war continues ... 
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Gene Wilder video Story, blocked by FOX for copyright reasons ... Boo!
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Group threads: 
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Changing jobs with cancer 
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ESHAP experience treating T-cell lymphoma - PTCL-NOS type
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Living with the "beast" -  Patients Helping Patients
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Jama: 
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My bio
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"A Good List" - CureMagazine
  
Providing humor, wisdom and encouragement.
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In praise of an exceptional doctor and scientist - Thanks to Dr. Levy 
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Jama: Social Security Disability Benefits (Guidance) 
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Joy: Lymphedema and anti-embolism stockings 
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Karl: 
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Our experience with Alternative Medicine
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Lucky to have Follicular (or any indolent) Lymphoma?
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Ken: Having this type of cancer isn't "THE END"
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Ken G: I took this disease a little too lightly
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Kim: I waited way too long with my pain
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Linda:  Story of hope and perspective
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LovesToRead: 
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What Cancer Can't Do
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My Journey with Lymphoma
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Laurie: well I finished my radiation today
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Lucy:  Wigs - I got to the point that I hated the wig
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Margaret: Neulasta Reaction: "Sometimes the older things work well too."
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Mark: Chemo tricks and tips
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Paul Klein: 
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The Ten Commandments for Cancer Survival
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Who gets cancer? Why Me!
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Sands: Parasites and NHL 
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Sandy: On feeling Lost
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Steve: "Unpanic" and find a doctor you trust (MALT)
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Tarzan:
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Another vine waiting for me
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My fear is "NOTHING"
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WebMagic board:
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Being around kids when you receive treatment?  Tips from Patients

 


Treatment Experiences:

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A: MALT affecting eye - Treated successfully with CHOP
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Allan: Transformed follicular treated with SCT including HD Bexxar - with Sep 2007 update
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Andrea: Rituxan plus CHOP ... hasn't been so bad
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Andy's journal:  from diagnosis to treatment
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Barbara: Mycosis Fungoides
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Barry: Update on bladder lymphoma (Mastocytosis)
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Bill: Diagnosed with significant bone involvement; treated successfully ... 
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BG: Remission after diagnosis with advanced indolent Lymphoma with bone and bone marrow involvement
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CH: Bendamustine overcomes refractory nhl
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Christopher:  Battle Against Lymphoblastic Lymphoma (NHL) - caringbridge.org 
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Connie: MALT: Radiotherapy with Amifostine, a drug that protects healthy tissue from radiation 
MALT
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Daughter: Chemo was effective for CNS lymphoma, but caused blood clots.  Trapease started too late.
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Don: CHOP + Rituxan succeeds after CVP fails to work optimally
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Fran: "We saw Dr. Fenske yesterday" (fighting MCL) - www.caringbridge.org
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Graham: MALT with & false positive HIV - Graham's story
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Group post: 
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Jainine: Successful treatment using Total Lymphatic Radiotherapy for stage III follicular NHL 
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Judy: The doctor may be the expert on the procedure, but I am the expert on my body and my life
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Karl & Joanne: Radioimmunotherapy following chemo  
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Matt: Waldenstrom's - great response using Fludarabine and Rituxan
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Maureen: MALT affecting the eye
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Michelle: One year remission so far, despite relapses and change to DLBCL
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Nancy:  Jeff's response to Rituxan after relapse following CHOP-R
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Peter:  follicular, allo SCT
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Sheila: brachytherapy story
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Susan: I've had a good year on Revlimid treating grade III fNHL
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Sofie: spleen removal; overcoming allergic reactions to rituxan
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Rich: 
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Surviving Transformation
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"Thin" Decisions - Patient perspective on consulting experts and making treatment decisions
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Shirley: CLL turned out to be Splenic lymphoma
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Tony: My CVP experience in the randomized Id vaccine trial
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Tony: Sharing his experience with CVP in the Vaccine Trial

    

Stem Cell Transplants (SCT):

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NEW Tips and Questions to Ask PAL
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Allan: Transformed follicular treated with SCT including HD Bexxar - with Sep 2007 update
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Cyberfamily stories about SCT Stories
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Iva: Suggestions for going through Stem Cell Transplant
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Mark: The decision process and experiences with autologous stem cell transplant
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Marrow.org: Bone Marrow transplant stories

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Molly: Tandem SCT for DLBCL - ALL clear after 4 years!
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Steve: Cautionary Story: Harvest stem cells when your marrow is clean

Radio-immunotherapy (Bexxar, and Zevalin):

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Betsy: Profile of Hope
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Karl: Joanne: Bexxar preceded by stem cell collection
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Jan: I'm here today because of a woman named Lynne Murphy 
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Rick: Zevalin experiences - details and response
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Tony Hines - Lymphoma Files
Also see Our Encouragement page - PAL & Art - This is Lymphoma 

Lend a hand to PAL:  Donate a Used Vehicle or Make an Email-Pledge or, Donate by Mail  or 

Donate online with a credit card. It's easy, safe and secure: 

 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright © 2004,  All Rights Reserved.