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Support > Patient-to-Patient > Patient Experiences & Guidance

Last edited: 03/12/2008

 
STORIES 
  Patient Stories 
Encouragement & Tips  
Treatment Experiences
General
Stem Cell
Transplant/rescue 
Radiotherapy & RIT 
OTHER GROUPS
WebMagic - Our Stories
CancerGuide Stories
CLL Memorial
Patient SCT Stories Cyberfamily

Shared Patient Signatures 

Important Note: 

"
What could be absolutely correct for one patient may be ruled out for another and the critical factors might never make it into the story"  

Adapted from On Letting the Patient Decide, and the limitation of personal accounts  

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

 

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

    

SCT:
Allan: Transformed follicular treated with SCT including HD Bexxar - with Sep 2007 update
Cyberfamily stories about SCT Stories
Iva: Suggestions for going through Stem Cell Transplant
Mark: The decision process and experiences with autologous stem cell transplant

Marrow.org: Bone Marrow transplant stories

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

Radiotherapy, Bexxar, and Zevalin:
Betsy: Profile of Hope | BLog - The Advocacy Seed Grows
Karl: Joanne: Bexxar preceded by stem cell collection
Connie: MALT: Radiotherapy with Amifostine, a drug that protects healthy tissue from radiation 
MALT
Rick: Zevalin experiences - details and response
Tony Hines - Lymphoma Files
Also see Our Encouragement page - PAL & Art - This is Lymphoma 

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Disclaimer:  The information presented 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. 
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