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Patients Against Lymphoma

 

Support > Patient to Patient > Patient Signatures & Treatment Summaries

Last update: 02/28/2006

Shared Patient Signatures & Tx DetailsFamous People with Lymphoma | Mantle Cell Site | Stories

A patient signature is summary of your diagnosis & treatment history. They provide a concise way of communicating a complex history with other patients and caregivers. A treatment summary is much like a signature, except that it contains more detail. 

Rationale: Creating a treatment summary helps you to communicate more effectively with doctors and experts you will consult. Similarly, patient signatures let others patients quickly review the treatments and outcomes you've experienced related to your diagnosis. Sharing signatures may also provide an new way to communicate the burden of living with lymphoma to the public and to our representatives.

How to participate: Click here to e-mail your signature, and we will include it below.  If you want to send a detailed summary, attach it as a file, or insert the text into the same e-mail.  

To help you create a signature and treatment summary for your own use click here to download a text file. It contains a model for the creation of a signature and treatment summary.

Common Abbreviations: DX = diagnosis, TX = treatment, BMB = bone marrow biopsy, W&W = watch & wait
CR = Complete Response, PR = Partial Response, SD = minimal response, Stable Disease, DP = disease progression

- Shared Support Group Signatures & Treatment Details -

JoanneS DX 1/96 @ age 44 = nhl-low follicular, Stage III, no bone marrow involvement - W&W
Suspect: chronic throat infection, SV40 virus
11-96 antineoplastons Clinical trial (PR)
11-97 DX = suspected transformation, not confirmed by FNA
12-97  6xCHOP - (CR) , relapse 8 mo DX = same as original (low grade)
12-99  Rituxan 8x (SD)
06-00  anti-cd22 clinical trial (SD)
04-01  Rituxan 4x (4/20) seq with oral  low dose PEP-C (PR)
12-01 Repeat PEP-C (PR)
04-02 Favrille idiotype vaccine (stable)
11-02 Rituxan + CpG (Stable)
 
01-03 oral low dose PEP-C (PR-90%)
 
04-03 Inteferon-alpha-2b
 
07-03 Favrille idiotype vaccine (Stable)
 
07-04 oral low dose PEP-C 4 week + 2 week every other day (~90% response) bone marrow negative for NHL (PCR)
 
11-04 stem cell harvesting - Cytoxan, Neupogen
 
01-05 Bexxar
03-06 - CRu
Detailed Summary
________________
Barry Pollock, 50 years old , Brisbane, Australia. 
Diagnosed low grade B cell lymphoma in bladder,July 2001

Treatment: 6 courses of CNOP, then ESAP with stem cell harvest & transplant

October, 2002: stage 2, currently on antibody treatment
Patient's story
Hortensia NHL- Low - small, follicular, mixed, large cell In 97 Stage IV - Involvement Bone Marrow Dx  93
95 CNOP
97 CVP + Anthracycline
98 Interferon A x 12 mo.
99 Rituximab
02 w&w
________________
Branko Age 29 Dx 03/2002 conjunctivae, B cell lymphoma, marginal zone lymphoma of MALT type Stage I, no bone marrow involvement.
Tx 05/2002 - Rituxan 4x
________________
Manfred, Age: 52  Germany
Year of DX: 1997 (age 47)
DX—bronchial maltoma, Stage IA
TX—antibiotic, for Helicobacteria (although test was negative)
TX—W&W
Detailed summary

 

CarolL   DX 1/93 = lymphomatoid papulosis, subcutaneous, asymptomatic. TX, none.
06-95 DX (biopsy) subcutaneous lesion = highly aggressive nhl; lung lesion biopsy = large and small cells, well-differentiated.

06-95 TX, 6xCHOP

06-95  DX—original dx was flawed and had been malignant Malt-nhl.

06-99  DX, Malt in breasts (biopsies), now Stage IVA.  – DX Malt encasing an optic nerve and in muscle of other eye. “Well-differentiated Malt, but behaves like follicular.”

10-99   TX- radiation X17 to upper face (eyes)

02-00 -DX – New lesions under shoulder muscles and in arms, not biopsied. TX, Rituxan 4x.

08-00 – TX (maintenance) Rituxan 4x, caused flare-up of Hepatitis C.

09-00—-09-01 -TX Rebetron treatment for HCV.

06-02 –TX cataract surgeries (cataracts caused by CHOP, worsened by radiation)

07-02 –Scans reveal no change in various lesions (kidney, liver, mediastinal)
Present W&W
Detailed summary
Jama Beasley (DX 46) Female - NHL follicular, mixed cell, Stage III-B, no BM involvement, 22 centimeter mass life threatening with vena cava compression. Jehovah's Witness (no blood products).
 
09-94 Chemo CVP X 8
10-94 Fludarabine added and alternated monthly w/CVP  Bulky mass reduced by 85%. Fludarabine fried liver  and was discontinued after 3 courses.
 7-95 Stanford-Levy Monoclonal Idiotype Antibody KLH Vaccine x 5 (1 shot each arm (L & R) every 30 days) Nodes continued to shrink post-vaccine
Physicians: David Maloney, Frank Shu, Thomas Davis, Ron Levy, Sandra Horning & Charlotte Jacobs
6-96 CR to Present
 
Present medical problems (complications of chemo):

Chronic Fatigue, Obesity, Allergic Trigger Asthma & Multiple Chemical Sensitivity. Suspect tooth decay & varicose veins but could be incidental to chemo.
Kurt DX 10/98 = nhl-low
CAREGIVER (wife) Mary K.
SLL / colon, stage IV
40% Bone Marrow
Age @ DX = 55
Discovered on 1st. Colonoscopy
Cancer Center MDACC
DX Details: 9/98- Immunohistochemical studies showed cells are B-Cell, positive for CD20, CD45, and bcl-2 and neg. for CD3. B-Cells aberrantly express the CD43 antigen. Flow cytometry studies show monoclonal population of B-Cells positive for IG Lambada, CD19, CD20, CD5, and CD23

Suspect: Chronic Sinusitis, SV40 Virus, Occupational Hazards

10/98- FND+Rituxan (8mo.)+ Interferon (1yr.) Trial
1/01-   Relapsed
4/01-   Rituxan + Leukine x's 4
6/01-11/01- 6/02 testing = remission
1/03-   Next testing schedule  W&W

 
Cathy  DX 6/00 38yr @ DX nhl-low, follicular, Stage IV, 10% bone marrow
involvement 1-2cm nodes in underarm area and neck.
11/99 - biopsy of underarm node came back negative
5/00 - biopsy of neck node dx as nhl
6//00 - bmb - 10%
6/00 - 8/02   w&w only, currently only one node detectible to me; small nodes in stomach area seen on CT.


Yearly CT Scan shows no major changes.  Tumor burden remains low. Seen at Mayo Clinic in Scottsdale, AZ

TX Under Consideration:
Only when necessary, Rituxin, and/or vaccine

Main Concerns:
When to start tx, am I waiting too long.  Health is excellent right now
except for knowledge of nhl.  Anxiety because of age and 2 small children. 
Became a stay at home mom shortly after dx
Connie,  Female,  Illinois Age: Current 42 1st diagnosis --38  second occurrence--40

5/98 MALT of the Parotid (Right)  removal of gland and radiation. 
12/99  2nd Diagnosis MALT of the Parotid (Left) removal of gland and radiation. 
So far so good.
 
Heather Age: 52, Female, Australia, 
Age at DX: 45

1995 DX: MALT lymphoma in Thyroid. Hashimoto's thyroditis. Stage: first DX - low grade/second dx - medium grade

1995: TX--Right lobe of thyroid was removed 

Late 2001 DX--Another lump and MALT lymphoma was diagnosed after 
needle biopsy. 

Early 2002: TX--Left lobe was removed 

Am now on Thyroid replacement therapy. Nothing else

Looking for common factors (example: polio vaccine): Had polio in 1954 Polio vaccine in 1956
Detailed Summary
Betty: Age: 60
DX--2001 Aug. non-Hodgkin’s Lymphoma, follicular, small cleaved cell type, (low grade) B cell, 5% bone marrow involvement.
Dr. J. P. Colgan, Mayo Clinic Rochester, MN. Medical Advice:
Watchful Waiting.
Betty's story

 

 
Linda, Age: 44, California

1996: DX breast MALT, Stage I

04-96 06-96: TX 5 ½ weeks radiation

1998: DX Malt in other breast

03-99 TX: Paracelsus Clinic in Switzerland, biological medicine treatments

 

Page 1996: DX--follicular B cell indolent nhl
1996: TX--localized radiation
2001: Node harvested for SK vaccine
Rituxin x 4 (Platelets dropping are my 'indicator' - and they are)
JUNE 27th, first vaccine - Charlottesville, VA
Janet Age: 51, Age at DX: 49

DX--gastric MALT, Stage I

2000—Radiation x4 weeks

Current: W&W

Also has: Lymphocytic Colitis
Detailed summary
Michael EW DOB: 15.7.1956, DX: 3-00: MALT Lymphoma stomach, helicobacter pylory, Stage E 1 (no malt in other places), no symptoms,

Helicobacter 1st away after eradications-therapy,

wait and watch therapy (all three months Endosonographie, biopsies), Member of a study about Malt-lymphoma in Münster (Germany, Dr. Koch, Leader of the Multi-Center-Study)

results: sometimes full remission, sometimes little remainders/rests of infiltration, all three months controlled by biopsies of the stomach

I feel very healthy; no complaints
Lisa, Age: 47, Age at DX: 45

2000 DX = MALT lymphoma in R. Breast with bone marrow involvement: Stage IV-A

TX = W&W
Detailed summary
Becky, 48 yr. @ DX 6/00 = nhl-low follicular, Stage 4a, 'slight' bone
marrow involvement, < 5%. "Extensive" tumors throughout, but not bulky.
2/01 - Biopsy breast lump, nhl - low follicular.
DP 4/02: New and growing nodes around collarbone area.

Suspected causes: Chronic sinus infections, SV40 virus, environmental
exposure.

Currently in W & W. Few supplements, mainly probiotics, tumeric, lifelong vegetarian diet + salmon 2x week. Healthy as a horse, 'cept for NHL.

TX considerations: Rituxan +/or vaccine.

Consulted with experts at two major research sites.

Treatment team includes local oncologist + Dr. Leo Gordon, Chief of
Hematology, Northwestern Medical Center, Chicago.

Main Concerns: When to start tx and move out of W & W.
János (60 y/o male)
Derbyshire, England. 
DX: (Aug.2001) NHL, Indolent, Follicular, Stage III, Grade B.
TX: (Aug.2001) CNOP x 6
TX: (Jan.2002) Rituxan x 4
RTX: (Mar.2002) 15 x Radiation
(May 2002) In remission !!!
__________________
Glen E DX 3/89 @ age 39 NHL-Low, small
follicular, Stage IV bone marrow involvement
3/89 CVP x 6
11/92 Fludarabine x 6
3/99 Ritxan x 4
3/00 Fludarabine x 6
__________________
Linda, age 44, Female, California, Diagnosis Age: 38 Stage: I

Common Factors: All childhood vaccines, mono (Epstein Barr Virus)

1996 DX, Maltoma in right breast, Stage I 

1996, DX, Maltoma in left breast 1998

1996, TX,5.5 weeks radiation on right breast, low doses

1999, TX, natural treatments “biological medicine” at Paracelsus Klinic in Switzerland 
Details: Case history Linda-CA
Christine C 
DX:  11/1990,  Age @ DX = 42 yr.
NHL - indolent, small cleaved, follicular,  well differentiated  Stage I a (cellular level disease/no mass, no BM involvement)

Suspect: various chemical exposures, 
         SV40 virus

Symptoms: sporadic debilitating fatigue

01/91     TX - Radiation 
03/96     TX - Chlorambucil (CR)
08/98     Watch & Research
06/02     Biopsy for Favrille  idiotype vaccine trial
__________________
Sally (TX) age 59 at DX 10/93
Indolent follicular NHL 
Stage IV (bone marrow involvement)
Abdominal tumors

10/93 TX CVP x 8 started 
CR 3/94

Some residual peripheral neuropathy 
(damage to nerve endings) caused 
by Vincristine. 

Have enjoyed eight years in wonderful health having made no changes in diet or supplements since diagnosis.
Janet Age: 51, Age at DX: 49
DX--gastric MALT, Stage I
2000 Radiation x4 weeks
Current: W&W
Also has: Lymphocytic Colitis
__________________
Janet, Age: 51, Age at DX: 49
DX--gastric MALT, Stage I

2000 - Radiation x4 weeks

Current: W&W 

Also has: Lymphocytic Colitis
__________________
Rich, Age 45, Male, Minnesota
 
DX Age: 44
 
2002, DX, Stage One Maltoma in Thyroid. in the background of Hashimoto’s Thyroiditis.
 
May, 2002, TX--Subtotal Thyriodectomy Subsequent tissue biopsy revealed Maltoma
 
September, 2002, TX Soon to undergo radiation to neck area for six weeks.
Detailed summary
Shirley, dx. Cll 1/97
1997,1998, 1999, TX--multivitamins, herbs, exercise, w&w,
 
2000, pneumonia, anemia, started procrit injections, still w&w
 
2001, enlarged spleen, swollen glands, more nodes,
 
12/2001, Splenic lymphoma with villious lymphocytes,
 
12/2001- 2/2002, TX--8 courses of Rituxan
 
March, 2002, remission, normal lab counts Sept. 2002
 
Shirley’s Vision of Hope is found in the Details attachment.
 
Patient's story
Linda Current Age: 44, California, Age at DX 38 DX: 1996 Maltoma in right breast 1996, in left breast 1998, Stage I
Medical History: Healthy except mononucleosis at age 12 and 18. Appendicitis at 28. Tonsils removed at 4. Delivered 3 kids. 1986, 1988 and 1993. 3 miscarriages in between child #2 and #3, lost right tube.

Common Factors: All childhood vaccines, mono (Epstein Barr Virus)

TX: 
Spring 1996: Radiation for 5.5 weeks on right breast, low doses
March 1999: natural treatments at Paracelsus Klinic in Switzerland

Medical History Since Diagnosis: Healthy

Comments: Swiss doctors believe that Epstein Barr Virus may mutate into maltoma. 

Job, Family: Commercial real estate broker, own firm for 13 years, married, 3 kids ages 16, 13½ and 8½.
Terry DX 5/91= nhl-low follicular, Stage III, no
bone marrow involvement - W&W
Suspect: enlarged groin lymph node

11-91-3/93 antineoplastons 

4/93-Chlorambucil

5/95- Radiation right inner thigh flare up

7/97- Radiation left elbow flare up

10/99-8X Rituxan

01/00-1/01 -intensive holistic treatment diet, homeopathy, colonics, thermal treatments, supplements, accupuncture, psyconeuroimmunotheraphy, light treatment, exercise, etc. 

1/01 9XHyper CVAD- (CR) , relapse 12 mo DX = same as original (low grade)

08/02-8X Rituxan & Pentostatin Clinical Trial 70% (R)
 
Shirley, dx. Cll 1/97
1997,1998, 1999, TX--multivitamins, herbs, exercise, w&w,
 
2000, pneumonia, anemia, started procrit injections, still w&w
 
2001, enlarged spleen, swollen glands, more nodes,
 
12/2001, Splenic lymphoma with villious lymphocytes,
 
12/2001- 2/2002, TX--8 courses of Rituxan
 
March, 2002, remission, normal lab counts Sept. 2002
 
Shirley’s Vision of Hope is found in the Details attachment.
Patient's story
 
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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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