NHL Who's Who
Page 4 of 6
|
E-mail |
Date DX |
Cancer Details |
Family Details |
| [email protected] Suzzanne Wagemann Southern California, USA 46 yrs. |
03/00 | One day no lump, next day HUGE egg-shaped lump above my left collarbone. I hot-footed it to the medcare clinic. Something, I never do, but something told me in my gut to check it out QUICK. The dr. told me possibly Lymphoma. Next day, the surgeon said Maybe Cat Scratch Fever. Never felt good about that diagnosis. 2nd surgeon said...need a biopsy. Results...Non Hodgkins Lymphoma. 2nd lab said...follicular, mixed cell. Tests said...stage IIB. The Oncology Dr. considered Watch and Wait, when they still thought it was small cell only. When all the results came in, which included large cell... treatment: Rituxin/CHOP chemo x4, remission, radiation x 25 clean up. Next tests in January/01. | Married, with the best hubby in the universe! Total of 7 children; 3 grown with their own kids (we have 5 grandkids), 4 kids still at home. Our oldest is 30 yrs (I was a child bride ~(.^^.)~ and youngest is 5 yrs. The last 4 are adopted. I guess life was getting too quiet. Quiet??? Silly me. We are a Foster Care Home (presently) and Emergency Shelter Care (on hold), which has brought many heartwrenching experiences and many wonderful rewards. |
| [email protected] Phyllis R. Markel Bismarck, ND 1/22/34 |
I am in remission at this point |
||
| [email protected] DONNA MOHR 2117 W AINSLIE 10-29-37 |
Lymphoma 2nd time around. had 16 years ago and now 4 years of fighting. | 6 children, lots of grandkids, and 4 great grandkids. | |
| [email protected] Christy Wainwright Butler Georgia Feb. 28, 1972 |
Sept. 00 | dx Sept. 00, large cell follicular, found in female organs, neck, ans spleen. They have said stage III but from what I am learning it should be stage IV. First treatment was BACOP and now doing new one on Monday - Rituxan. | I have four children Spence 12, Aaron 3, Kari 5, and Shelby 8. Married 7 years to Mike...Great guy!! Have 3 turtles and a cat. |
| [email protected] Michael Sarin Toronto , Canada May 1st, 1935 |
October 6, 2000 | May 2000, generalized lymph node enlargement + mediastinal nodes++. Spontaneous resolution. Cause remained elusive. September return of same process with night sweats. Lymph node Biopsy from L.Groin revealed Non- Hodgkin's Lymphoma. Good response to Prednisone 60 mg after 3 weeks tapered to 50 mg and then tapering by 10 Mg every week. So far so good. Resolution of all symptoms. At Princess Margaret Hospital , having typing of treatment for further Chemotherapy possibilities. Also have Type 2 Diabetes worsened by Prednisone use, but so far controlled bt Gluconorm 4 Mg before meals and metformin 500 Mg three times a day. Will update details about NHL. type and Chemotherapy when decision made to treat. | A physician, off work for the last 2 weeks because of fatigue. 4 Boys ages 34 to 28. High stress level at present. |
| [email protected] David Karasik N. Bethesda, MD 4/23/71 |
July 2000 | Primary cutaneous b-cell lymphoma, stage 1E. Had two small tumors (half inch?) on back of neck. 4x CHOP + 20x radiation (4 weeks). Completed treatments on 12/11/00. Doing just fine, so can you! | No family history. |
| [email protected] Sarah E. Woodward Seattle, WA 22 |
Oct 2000 | Father went into hospital due to fever and flu like symptoms (age 49). His kidneys were dehydrated and so they gave him fluids and antibiotics. His white blood count soared and after three days he was moved to ICU. Doctors searched frantically to discover type of illness. Thought it was a rare virus. Infection left kidneys and moved to lymph nodes and spleen. Did a lymph node biopsy after in the hospital one week. His white blood count continued up to 83,000. Died on October 13th, 2000 after 10 days in hospital with no diagnosis. Now, a month later they are almost 100% lymphoma but not sure what type since it moved at an unheard of rate. God is with my family and our father. Blessings to you all. |
|
| [email protected] Miroslav Koubek Prague,Czech Republic 08/20/1953 |
03/1997 | Diffuse centroblastic/centrocytic, Intermediate grade, StageII (involvement one tonsil and one node on my neck) or IV (involvement marrow very probably, but not verified unambiguously). Treatment in The Faculty Hospital Kralovske Vinohrady - 6 CHOP (04-08/97). CR 09/97 verified 03/98, 06/98, 10/98, 04/99, 11/99, 10/00). I went for a walk 10KM daily (tempo 6-7KM/h) during the treatment (my doctor didnīt recommend !!). 1999, 2000 I ran the Half Marathon race and the Ski race Jizerska 50 - Worldloppet (time 4h38min, the best personal time 3h45min on my 23 years). |
Married, dauther (1981) -medical student, son (1984) |
| [email protected] arun kapur bombay 54/1946 |
09-09-00 | stage1A NHL predominantly follicular small cleaved cell type. dx after surgical removal of tumor 3"x 2.25" x 1.5" from left axilla. uninvolved bone marrow. the neoplastic cells express cd-20 & are -ve for cd3 and bcl-2. Advised w&w. wonder what the future holds? any one with with similar dx & experience please share info. | no family history of such disease |
| [email protected] Jan Paul Brindle Venice, CA 43 |
October 10, 2000 | Diagnosed with large diffuse intermediate grade mediastinal lymphoma on 10/00. Grade 1 tumor 7.2 cm in diameter located in chest cavity. 6X CHOP followed by 28 days of radiation. Clinical remission achieved after 4 rounds of CHOP. Now doing great and enjoying life. Thank you to everyone at UCLA Santa Monica Cancer Center | |
| [email protected] Cindy Winn Livingston Dallas, Texas June 3, 1947 |
Feb. 1999 | Discovered bump on neck, dx 2/10/99, aggressive grade, large B-cell, stage 3A (neck, arm, chest, pelvis), CHOP 6x (2/23/99 - 6/11/99), Rituxan 4x as hopeful maintenance therapy (7/13/99 - 8/3/99). CT scans on 5/18/2000, 10/30/2000, 5/7/01, 10/30/01 and 7/29/02 show no evidence of disease, which puts me 3 years in remission! YEAH!!! |
Married to my favorite friend, Steve. We have twin boys - grown and out of the nest!
|
| [email protected] Deena Weintraub New York 6/27/42 |
9/99 | Diffuse, Large B-Cell nhl, large tumor in abdomen, Stage 1V. Four months of chemo at Memorial Sloan-Kettering, then stem cell transplant in Jan/Feb., 2000. Complete remission, hopefully cured. | Married to the lovely but notorious Steve; 2 grown daughters, insane dog. |
| [email protected] Mac Sells Knoxville, Tennessee 9/4/41 |
May 2000 | MANTLE CELL LYMPHOMA. I had no symptoms. Treatment: Rituxan x 8 (minor decrease in tumors); CHOP x 4 (18% decrease in tumors & bone marrow clear); Hyper CVAD & Methotrexate/Ara C regimen (clinical remission); Auto Stem Cell Transplant - July 24, 2001 - complete remission |
Wife is Beth. We have two daughters, both married and with children - our five grandchildren. |
| [email protected] John Hewitt Kentucky 03/31/55 |
07/12/00 | Quit work 6/12/2000 to help care for partner's mother. Moved to family farm. Going to bed July 2, 2000 (yea, 2weeks after taking a hiatus from work for a little while), found several lumps in right groin. Like so many of us, was assured that it was nothing to worry about. Took 1 week round of antibiotics, lumps were not affected. Saw primary MD, he was reassuring that it was no doubt nothing, but suggested a biopsy "just to make sure". Being an RN, I agreed to that, and not take the W&W approach. Saw a surgeon (also a personal friend) who did bx that week, and got results of "small, non-cleaved NHL", right groin was the bx site, PET scan showed left groin involvement, and questionable axilla involvement. Started Rituxan and Fludura the next week. So far, so good. Would like to hear from others with same dx, and your outcome. | Mother dx with leukemia about 1994, her mother deceased yrs ago 2nd breast cancer, her sister deceased 2 yr ago with same. Negative family history of any lymphoma that I am aware of. |
| [email protected] Sandra Proebstel LaGrande, OR 05/26/74 |
4/00 | Large B-Cell lymphoma. Large mass in chest. Large hole in skull. Had 6 CHOP with 2 more to go. Mass in chest responded well to CHOP so far. | Married and one son who is 23 months old |
| [email protected] Noelle Winn Winsted, Connecticut 43 |
12/97 | Diagnosed in December of '97 with lg.B-Cell diffuse non-hodgkins lymphoma, stage 1E. Extra nodal in breast. Surgery, CHOP X6 and Radiation. Presently in remission. | No family history of lymphoma-various other cancers: breast, colon & stomach. After 19 years of 'dating', I married a wonderful man who was an excellent personal 'physician' throughout my illness. Also have a 27 year old son. |
| [email protected] Julie Hellendrung New Ulm, Minnesota 56073 4-7-73 |
9/7/00 | NHL - diffused Large b cell, Aggressive, high grade, stage IV with Liver involvement. started CHOP on 9/15/00.Interested in hearing from others. | |
| [email protected] Peter Nebauer Berowra Heights,Sydney, Australia 40 |
05/05/2000 | Follicular Small Cleaved Cell Lymphoma) intra-abdominal and pelvic tumours, with bone marrow & considerable small intestinal nodes. A small lump on my chest wall first became apparent in 1988 but was overlooked. On routine examination by surgeon to repair hernia enlarged spleen was detected in May 2000. CT Scans, Marrow Biopsy, Lymph Node & Lump biopsy revealed Lymphoma. Undertook CVP Chemo first (due to thinning of intestinal wall due to shrinking tumours) and will start my 2nd of 6 planned CHOP Chemos on Thursday 31st Sept 2000. My hair started coming out in clumps only today. My Lymphoma is CD20 positive so I will have Anti-body treatment after CHOP. | I am 40 years old & have two lovely Children Elaine(13 Years) & Ali (10 Years) I have not told them yet as I dont want them to worry. I was re-married to a wonderful lady Karen on 05/08/2000 who is a fantastic support (and gives great injections). |
| [email protected] Sjur Rosholt Billingstad, Norway 17 Febr. 1950 |
Sept. 99 | Diagnosis Large Bcell NHL stage 2. Sept. 99. Treated with 8 CHOPs. The tumour disappeared after the second round - very positive. After 5 months in remission relapse in one lung. I am now treated with a combination of Metyl gag. Vepesid and Holoxan leading up to high doses chemotherapy, stem cell transplant and body radiation therapy. Due to my medical team at the national Norwegian cancer hospital the prognosis in general is slightly over 50% for this kind of treatment. Wonder if i will make it? |
Married to Sigrun two daughters Ellen and Kaja. We also have a wonderful Newfoundlands dog- Cleo. God bless all of you! Keep spirit high! |
| [email protected] Lloyd E Joiner 102 s lamar st 8-29-1943 |
11-02-1999 | Did 5 cycles of chop. 2 days left of radiation treatment. Still have to do a few more radiation treatment. Waiting. | |
| [email protected] Susan Furca Reno, NV Chuck DOB 1944, me 1946 |
8/99 | mixed B-cell follicular stage IIA; 11/99 dx NHL mass behind right eye (now stage IV) irradiated successfully; back to W&L (also Type 1 diabetic) |
Married since 1966. Chuck enjoys hunting (for the table), duplicate bridge, cooking, woodworking. I play duplicate bridge with him, enjoy gardening and needlework, dabble at pottery on and off, and am an orchid hobbyist. We have a daughter, an asst. DA in SLC, UT, a grandson born in 1996, and another on the way; three dogs (Pepper -- curly-coated retriever, Einstein -- standard poodle, and Shasta -- Irish wolfhound /Airedale/?? mix). Midwesterners and avid Cubs fans. |
| [email protected] MARY FULPPYE VALDOSTA, GA. 4-24-54 |
5-2000 | MANTLE CELL MANTLE ZONE VARIANT LYMPHOMA DIAGNOSED IN MAY 2000 TO MY 51 YEAR OLD BROTHER, TOMMY. HE IS ON HIS 4TH ROUND OF CHEMOTHERAPY. | |
| [email protected] darlene speide Iowa city, Ia 11/28/52 |
11\96 | dx 11/96 with large cell diffuse stage iv intermediate grade b cell lymphoma, 6 chop, bmt using my stem cells done in august 1997 at University of NE at Omaha. Went home September 1997. Have been in remission since. | I have one son Jonathan born 10/1/1991. Single parent |
| [email protected] Bernhard Varnskuehler Arnsberg, Germany 67/02/02 |
August 1994 | In summer 1994 I discovered a stone-hard lymph node near my neck, sized an shaped like a walnut. Staging at the university hospital of Kiel, Germany (including biopsy, ct and ultrasonic scans, bone marrow and liquor analysis) found stage IIA "high malignant, centroblastic b-cell NHL", which appears to be diffuse large cell NHL in the REAL-classification. I got 5 rounds of CHOEP chemotherapy (CHOP plus Etoposide) and subsequent irradiation of the thorax. This certainly was a hard time, but it was worth the effort. Fortunately I am staying in complete remission since then. In October 2000, about 6 years after the beginning of my own NHL story, I will join the lymphoma research group at the institute of pathology at the university hospital of Luebeck, Germany. There I will be doing some research work on immunotherapy of lymphomas and ovarian cancer, for example. |
While still being in therapy, I married Beatrix in December, 1994. We have two sons, Veit (3 years old) and Arne (one year). |
| [email protected] Julie walker Port Perry, Ontario 30 |
July 2000 | I have been diagnosed with peripheral T-cell non-hodgkins lymphoma. I am presently going through the staging process at Sunnybrook hospital in Toronto. I have been ill from various ailments for 10 years now. I believe the cancer symptoms started about two maybe three years ago. I was treated like a hypochondriac for years. My tumor was found in my uterus. I had to fight with the doctors for a hysterectomy, only through my own persistence this was found. I seem to have a hard time finding anyone with this same cancer, or someone my age. I am to start CHOP in September. I feel very alone and scared. Since my last entry, I have found my staging at 4 Involving bone marrow. The docs started chop right away. I don't feel too bad, a little confused at times. Still lots of hope for recovery. Thank you all who have responded. I don1t feel so alone anymore. I have peripheral T cell Lymphoma and I plan to fight it all the way. |
I have two children 11, 4, boy and girl. I am a single mother. I am a hairdresser and I work with the handicapped. Presently not working at all. My family is adjusting with great dificulty. |
| [email protected] Lisa Eagleson for Brad Eagleson Little Britain, Ontario 33 |
September 1999 | My husband was diagnosed with low grade follicular non-hodgkins lymphoma in September of 1999. He had a lump on his neck for about six months before he had it looked at and when he finally had it removed he was diagnosed. He had the usual tests done and a small node showed up in his chest, close to his heart. He went through 9 sessions of CHOP and has been in remission since June of this year. He is to go back in a couple of weeks for a check up which will take place every 3 months. | Brad is married to me, Lisa, has a son (who will soon be 4 years old) and a daughter (who is turning a year old soon). Our daughter was 2 days old when he was diagnosed and it was alot for us to deal with for a couple of months. |
| [email protected] Irving Jorgenson 8103 E. Southern Ave 70 |
Member of family diagnosed with Follicular | ||
Robert Pompe Park Rapids, MN 59 |
August 2000 | DX'd August 14, 2000. Experienced high fever and some back and leg pain. Catscan showed and obstruction of the small intestine which was removed. Diagnosed with Stage IV NHL to begin chemo in September after a second opinion at the Mayo Clinic. Small nodules discovered on the liver and stomach with involvement in the bone marrow. Doctor seems to be very optimistic and we pray that he is right. Short period of remission before it was discovered to be in the brain and spinal fluid. Began radiation treatments in mid-Dec. Passed away 1/2/2001. | |
| [email protected] Bobbie Thoerner Bellingham, WA 47 ish |
10/16/97 & 06/11/00 | 1997 Dx NHL low grade follicular small cell stage I. Localized Radiation x25 to the jaw, neck and upper chest. Had enlarged node in abdomen which was missed during original dx and numerous ct scans. Found a lump in skin on outside of shoulder for one year. Brought it to the attention of my onc and he didn't find it disturbing. Finally convinced my regular Doctor to remove it and received dx of low grade mixed cell stage IV in June. Changed Oncologists and at w/w until October when stem cell harvesting will be done for possible future mini transplant. Will be receiving I.C.E. and Rituxan at that time. Currently very fatigued, night sweats, but am very optimistic. If anyone has had this combination of chemotherapy I would be most interested in hearing from you. | Married 20 years - to the same man ;o}. Three wonderful, successful and amazing grown sons and one outstanding daughter-in-law. Oh, almost forgot, two cats. |
|
Trudi Kean |
June 1998 |
Follicular B Cell in abdomen and upper chest. 6x CHOP and 45 Radiation treatments put the disease into remission (since April 1999).
Indolent tumors returned near the intestines in April 2002. Watch and Wait was recommended. Tumor growth and new tumors (spleen and diaphragm) changed the course. 3 cycles of Chemo (CHOP without Vincristine) plus Rituxan will help determine suitability for stem cell transplant. Chemo began on 25 Feb 2003. MRI and CT showed that tumors in spleen, diaphragm, and near left ear were no longer visible. Tumors near intestines were all smaller than 1/3 inch. Stem cell harvest chemo begins on 9 May, and will end on 20 May. Harvest is planned for the first week of June 2003. |
Tom answers all e-mail. |
| [email protected] LAURA MCDANIELS GRAND RAPIDS, MI 24 |
JUNE 30, 2000 | FATHER DX WITH NON-HODGKIN'S LYMPHOMA, DIFFUSE LARGE B-CELL IN STAGE 4B, 1 ROUND OF CHEMO | |
| [email protected] TC Hofelich Midland, MI 3/26/53 |
5/00 | dx 5/00 testicular lymphoma, Stage I B-type large cell, r.r. orch. 5/00, chopx6 (2 down 4 to go), methotrexate + Cytosar in lumbar punctures x 5n (4 to go), rad to follow chemo. |
Wife Mary Jane, kids Alicia (15 8/2000) and Marty (12 as of 8/2000) |
| [email protected] Donald M. Crisman Chicago, Illinois 68 |
6/00 | Non Hodgkins Lymphoma-indolent,Follicular small cleave cell,B cell,Stage 2 | Older Brother died of Lung Cancer 3/00 smoker-I also smoked quit 1965 |
| [email protected] Annonymous U.S. 5/12/43 |
January 2000 | Non-Hodgkins-Follicular-Lymphoma. Probably has had it for 4 years or more. Has experienced problems with inadequate health care due to bad health insurance. Has also seen 5 different doctors within a period of three months at the local cancer care center. Currently seeing a doctor that is not local and looking forward to a different treatment other than leukeran. Enlarged spleen, severe pain, fatigue, and internal bleeding are symptoms. | My mother has had some of the worse health care imagineable. Doctors have ignored her symptoms for years. If they hadn't ignored these symptoms treatment could have started early and she probably would be living a better life now. Siblings have been unsupportive. As the only child I stand alone beside her and encourage her to never give up. My only wish is for her to be here when I receive my B.S. degree in December. If there is anyone in there late fifties or older that has fought hard and survived we would love to hear from you. I am doing all I can to convince my mother that there is still hope. Can you help me? |
| [email protected] Patricia McDaniels Grand Rapids, MI 4-4-1952 |
7-1-00 | aggressive large b-cell diffuse non-hodgkin's lymphoma has not started treatment yet | Chris is 50 years old, he has been sick for at least over a year. Not until about 1 month ago did they find out that he might have lymphoma, we will edit this once we get more information. |
| [email protected] Carla LoConte Vitale Boston, MA 26 |
9/18/97 | Large diffuse b cell; treated with 8 CHOPS and five weeks of radiation. Father dx in 5/97 with Hair cell leukemia. Scans clear ever since. | great parents and younger sister. My husband has been with me since high school- we were married 4/24/99. He was my strength during my treatment and continues to be everyday. We have two cats that we spoil terribly. I would love to talk with a young person like myself with similiar situation- someone who understands the treatment and deals positively with the future. Stay well and enjoy! |
|
[email protected]
Sandra Beth St.Denis |
March 1988 | March 1988, diagnosed as B-cell, low grade, non-hodgkin's lymphoma, follicular. Chemo in hospital Mar. CHOP, FOLLOWED by neck to groin light radiation 20 x's Self-injected interferon, but dropped it after a few months.remission. Then oral chemo, various drugs.Interim Then radiation in 1988 to lower spine, hips, femur, patella. second round on spine area and groin - acetabulum - in 1999 In October, 2000 10 Cobalt=60 to dura of brain, no hair yet (Jan. 26th, 2001) Back in for more MRI'S, LARGE mass around lower spine where it joins coccyx - so more radiation on-going as I write, and a rest, then the big Rituxan and fludarabine. Now I am getting concerned.Never have I been sick, sick, sick, but the being unable to walk and move without terrible pain is the hardest to deal with. Hopefully, we will find a vaccine or the correct combination of less toxic drugs to kick this disease out and down forever. Undergoing series of four (4) treatments one month apart, with Rituxan and fludarabine plus cytoxin.Doctor "pleased" so far. They will have to give me a CYANIDE pill to get rid of me off this earth!!! This is supposed to be a lame joke. Second round of chemo is going more smoothly than first, have anti-nausea tabs this time. |
Married, Joseph, my caregiver and companion. High school steadies. Two lovely daughters Liana, in Toronto working, owner of two gorgeous Lab dogs. And Natalie, our U.S.A. export, working and living outside of Denver. Husband also from Canada The love Cco. ski, hike, bike, rollerkate, camp, entertain. Love those mountains. Even grown children have a hard time accepting that mother has cancer, one barely acknowledges it, and one wants to know everything and is very sensitive. Husband came around after 6 or 7 years and is slowly getting better about it. He has an anger thing that surfaces occasionally. (Due to suppression). I don't have trouble with self-expression and talk |
| [email protected] Fred S. Hubbard Iowa 03-15-40 |
05-25-00 | Mixed cell follicular and diffuse large B cell. Indolent and intermediate grade. Stage III/IV. Began CHOPx6 recently. My dad would be interested in hearing from others about what to expect (he is only through the second cycle of his CHOP therapy). |
Married to Joan for 34 yrs. Two sons, 30 and 33. One grandaughter, 2 (almost-7/10/00). I am the eldest son and am interested in hearing about others travails with this disease. Specifically a human spin on pt personal feelings after treatment, not more medical journal articles! Todd email- [email protected] |
| [email protected] Leo Wood Northampton U.K. 24/Jan/1946 http://www.thatch.org |
5/June/1998 | Aggressive Peripheral T cell Lymphoma Stage 2b First Dose CHOP 18/8/98 8 Course 21 day interval Radio Therapy 21 daily doses full mantle plus 4 localised on arm pits Feb March /99 Biopsy clear of NHL 16/9/99 CT Scan clear NHL Nov 99 - Bladder cancer, possible CHOP Involvement - ongoing Intravesical Chemo Tired, tingle finger. Still here ! |
Wife, 2 children (18-20) 2 cats, 2 parrots, dog, Grandma |
mary kent savannah, ga 5/4/65 |
Oct 99 | low grade, b-cell, follicular 34 yr. mother of 4 yr and 18m. Oct. 20th, 1999 diagnosed. Chemo only. In remission as Mar. 6, 2000. Doing well. Cat done ev. 3month. Next one in Aug. Getting nervous already. | Loving husband of 11 years, son 4, daughter 18m, 2 dogs. |
| [email protected] C. Alexander Goodsiol, Saskatchewan, Canada Paul... January 13, 1953 |
October 1999 | Paul is 47, he is my husband. He was diagnosed with NHL in the fourth stage. The doctors gave him 2 years with chemotherapy. He felt it wasn't worth it, he had been getting blood transfusions every 2 weeks. He has not had a transfusion for 25 weeks now. He has been taking vitamins and different herbs since he was diagnosed. He was just into see the doctor on the 5th of June and although they do not have any explanation. He is feeling much better. 100% actually and his blood count is in the normal range. It looks like all traces of NHL are gone. If there is anyone out there with the same experiences, please feel free to e-mail us...Please excuse any spelling errors!! |
We have a daughter who will be 19 on the 29th of June and a son who is 15.Our daughter is in the Canadian Armed Forces Our son will be going into grade 10 in September. |
| [email protected] John Dobson Albury, NSW, Australia 61 years old |
November 1998 | B Grade follicular Non Hodgkins Lymphoma, treated with Chemotherapy (CHOP) and subsequently Rituxan (Mabthera). Feeling good these days but a bit tired, always waiting for the symptoms to return, Night sweats, swollen Lymph nodes, lethargy and all that sort of rubbish. The treatment has left me with several side effects, sore heel bones, Aesophogitis (spelling?), a degree of insomnia.I would be interested in contact from other treated NHL patients with similar experiences. | Married to Maddy (short for Madeleine) Two daughters Angela and Jacqueline,One son Richard, five grand children - Jessica, Ben, Emma, Matthew & Luke. |
| [email protected] Will Austin Moncks Corner, SC 9 year old |
2/98 | T-cell Lymphoblastic Non-Hodgkins Lymphoma Stage IV. Frequently tired and getting up in the middle of the night thirsty. Family history diabetes, went for physical. Dr. found enlarged spleen, initial testing showed anemia, suspected viral infection, initial BM aspiration was clean, two weeks later kidney and BM biopsy confirmed NHL. Started ALL protocol, 108 treatments. BM was clear after first 6 treatments, no signs of cancer, completed protocol 4/00, first monthly checkup 5/00 all is well, watch and wait. | |
| [email protected] Gloria Van Dusen Mallorytown, Ontario, Canada January 25, 1951 |
June 1995 | Low Grade NHL large cleaved B cell, Stage I. Received 17 radiation treatments in September 1995 to original tumour site. Rediagnosed in January 1999. Tumour found in left abdomen in lower back area, nestled beside kidney. Small tumour clusters in upper diaphram area near liver and aerota. W&W until February 2000 when CVP chemo was started after tumour in abdomen had enlarged to 12 cm X 9 cm X 6 cm. Tumour has shrunk but considered partial remission only. | Married for 28 years to Roger. Have 3 children - Christy who is married to Scott Kilgore from Lebanon, Pennsylvania. Christy and Scott live in Naples, Italy where Scott is in the U.S. Navy. Christy teaches at the International School of Naples. Our son, Joe is 23 and works for a company who install telephone switching equipment. My youngest, Laura is 19 and attending St. Lawrence College in Kingston. I am presently in the empty nest stage of my life and loving it. |
| [email protected] James J. Mezhir Buffalo, NY 26 |
May 1989 | I was diagnosed with NHL at the age of 16. I underwent 17 hours of surgery and had chemotherapy for 12 months. I have been in remission since June of 1990! | |
|
[email protected]
Trudi Walton |
07/98 | low-grade, follicular small cleaved nhl, indolent, stage III, No BM, W&W | 2 daughters, 24 and 26, Younger one out west. |
| [email protected] Karolyn Jones |
My Dad, Doug (age 57) was dx'd 1996 with low grade stage 4, chop, etoposide, radiation, transformed to mixed - treated with cepp and rituxan. Died Sept 10, 1996. | Dad's cousin was dx'd with low grade stage 4 12 years ago. | |
| [email protected] Mary K. Schmelter wife of Kurt Humble, Texas Me?..hummmm Kurt 57 |
October of 1998 | Rare SLL of the colon and SLL/CLL (48%) of the bone marrow. Stage IV Treatment is an experimental trial at MDAnderson.... FND with Rituxan followed by one year of interferon. Went into remission about the 4th month of treatment and remained that way through the year of interferon. As of May 5th of 2000, declared DISEASE FREE! Now we W&W...... | Married 34 very happy years and raised two adopted children (one boy & one girl). Now grandparents to two beautiful granddaughters. Thanking God for everything! |
|
[email protected]
|
3/97 | Dx large cell diffused NHL. Massive tumor in chest area, one lung. Neg. BMB. Had 4 CHOP treatments, no rad. Still in remission as of 5/1/00 - to the great surprise of my Drs. who gave me a very poor prognosis! Miracles happen. Continuing to be in remission as of 07/02!!! | Married 49 yrs., son, daughter, 3 great cats |
| [email protected] April Pliska Show Low, AZ 11/25/62 |
04/14/00 | NON HODGKINS LYMPHOMA, FOLLICULAR CENTERED, SMALL CLEAVED CELL TYPE, STAGE I | |
| [email protected] George Mathis Clewiston Fla. 48, Dec.28, 1951 |
Jan.1999 | Begining with a bad cough for several months,to the point of choking with it. Also began having problems swallowing. Initial X-Rays revealed large mass between lungs putting pressure on esophagus. Biopsy stated large B cell, intermediate grade NHL. Had 6 courses of CHOP and was in remission. Within 6 months discovered lump on center of thigh. Biopsy showed it had returned and CTs revealed another mass on the left kidney. Because of early return, Doctor recommended stem cell transplant. Was given 2 "mega" doses of chemo followed by strong dose of Cytoxin. When cells began to re-grow, stem cells were taken, prepared and frozen. In hospital for 8 days getting "mega-mega" doses of chemo. and stem cells re-implanted on March 6, 2000. Now 60 days out still weak but slowly getting better and prognosis is good. |
|
| [email protected] Bart Hucker Barrie, Ontario, Canada 1950/12/28 |
Feb 14/00 | Right axillary lymph node - low grade malignant lymphoma, follicular predominantly small cleaved, B-cell type |
Married, 1 girl 7 yrs, 1 boy 21 months |
| [email protected] Charlie Revie Las Cruces, New Mexico, USA 10 Nov 40 |
5/99 | Discovered small lump under left ear 4/99; dx'd 5/99 high grade diffuse large B-cell stage 2b (neck and shoulder); tx was 3xCHOP 22xRT (3700 rads); current prognosis is "in complete remission, hopefully cured." Medical history of low platelets and 10% enlarged spleen suggests I might have had this NHL as early as Dec 97 but it was not evidenced or suspected as a result of several scans and studies. I am now "watching and living" because I don't have time for "watching and waiting (worrying)." Since then I have had a myocardial infarction (Feb 00) not related to NHL or Tx. In Mar 00 this was followed by a blood clot on my right kidney (possible chemo related--5%; more than likely related to cardiac meds--95%). Prognoses for NHL, heart and kidney, are excellent. | Just Lady Gwen, me, and two cats. We occassionally get to spoil the grandchild. |
| [email protected] Hazel Jarvis wife of Richard Jarvis Rothwell, Nortthamptonshire, UK 24 (Richard is 34) |
8/6/99 | Husband diagnosed with high grade NHL stage II in June 1999, underwent 8 sessions of CHOP and was in remission for 6 weeks before relapsing. Had 1 dose of IVE and MiniBEAM both of which did not work and is currently waiting to have a BMT in May. June 1999 After a years battle with NHL, my husband Richard lost his fight on the 29/6/00. Sorely missed and much loved by all. |
Just the two of us!!! Plus a mad Basset Hound called Peanut |
| [email protected] MJ Stevens Las Vegas,NV 2/11/56 http://home.att.net/~cashuin/ |
4/13/2000 | Adult Non-hodgkins Lymphoma-follicular,small-cleaved B-cell etc..... Well-I can't believe I haven't edited since my diagnosis! Had 2 4-view CAT scans (neck, chest, abdomen, pelvis) Nothing much shows-watching the area where the biopsy was done (positive showing) and keeping careful eye on neck node (questionable area). PET scan shows nothing more than those areas. Still Watchful Waiting stage. Mammogram will be done this month. Visit with Oncologist scheduled for April. Oncologist said that I have "the laziest,slowest-growing, most indolent lymphoma" she has seen after the results of the PET scan came back. Keeping fingers and toes crossed that all continues on the same track for at least 20 years! Good luck and God Bless to all here. |
|
| [email protected] Patrick L. Boland Westchester, Il suburb of Chicago April 1, 1936 |
1991 | Diagnosed as CLL in 1991. Wait and watch. Treated eventually at Hines Veterans Hospital in Chicago. NHL diagnosed in late 1993. Underwent chop therapy Jan. thru June, 1994. In remission until Dec. 1995. Received Fludarabine treatment, 6 applicatins from Jan. thru June, 1996. In remission until December of 1999. Again started chemo in Jan, 2000. Received three treatments consisting of Mitoxantrone, Fludarabine and Sargramostim. Started on Rituxin on March 30, 2000. 1st of four applications. Normal allergic reaction of flushing redness, itching and feeling vwry warm, sweating. All allergic symptoms arrested with drugs by nursing crew. No ill effects. I remain very hopeful. | Four grandchildren. Five daughters and two sons. Three brothers and two sisters. |
| [email protected] Susan Murphy Killingworth, Ct. 39 |
july99 | DX. Lg B-Cell NHL Stage 1A, 5XChop,22Sessions of Radiation Complete Dec99 Remmission |
|
| [email protected] Leslie W. Bjorklund, Jr. Germantown, TN 52 |
February 2000 | Diagnosed with intermediate stage non hodgkins lymphoma. Combination of mixed follicular cell type. First noticed enlarged lower eyelids of both eyes. Eye disease doctors treated for blocked eye ducts. To no avail, I then went to an Opthalmic surgeon who took eyelid tissue for biopsy sample. Results were non specific. I was later sent to a doctor who specializes in blood chemistry and cancer treatment. All blood work, ct scan of chest, brain, brain stem, orbits, sinus, etc. revealed no lymphoma. A later exam by same doctor revealed a swollen lymp node on left side of neck and recommeded to have it removed. Initial biopsy revealed benign. A more indepth biopsy revealed malignant NHL. I was given the smart drug of Rituxan x 4 and have seen a remarkable reduction to the inflamation of both eyelids. There was no negative reaction to the introduction of Rituxin into my system. One could go right out for a round of golf minutes after treatment. Where I go from this point? I am sure that more ct scans, blood checks, etc. will be the protocol. Any one desiring to know about this drug, please write me. I believe it will be the cure of the future. | Married, 1 daughter age 16 |
| [email protected] Ann M. Snider Maytown, Alabama (Birmingham) 1/30/44 |
11/96 | Dx: follicular small cleaved cell lymphoma (mass in parotid). Staging after dx. showed thyroid nodule,lymphadenopathy in left & right anterior neck, in mesenteric aortocaval nodes,shotty retroperitoneal nnodes. Watch & Wait. 9/97 Mass in throat. Started fludarabine x 4 treatments. Blood counts were too low after 4th treatment could not continue. CT showed reduction of mass. W&W again. 8/98 Admitted with WBC 900, Platelet Count 65,000, elevated LFT's, chills & fever. Etiology unknown. Back on W&W. | During the time I was taking chemo my husband became very ill and passed away 3/17/98. We were married almost 33 years. He was dx with lung cancer about 10 days before he died. I have one son who has three children. Jennifer age 14,beautiful, takes dancing, piano. Jason age 11 likes to read, plays baseball & soccer. Joseph (JoJo) age 4 is the clown in residence, he just never stops. I also have a great nephew, Alex age 6, who calls me grandma. I think this is very intresting since my grandchildren call me Mimi. I enjoy my grandchildren, some crafts, traveling, reading, and my family. I also enjoy participation in my town government. I have held a seat on the council and have been very active with the needs of the town. I retired due to health 2/98. I had been a nurse since 1964. I had worked for the University of Alabama Hospital / clinics for 28 years. |
| [email protected] Goran Krstevski Prilep Macedonia FYROM 16.03.1971 |
07.1998 | NHL - Diffuse large cell. 1998 first chemo & radiotherapy. 1999 summer second chemo& radiotherapy. Last chemo in December 1999 year, last radiotherapy February 2000.Feeling WELL. | single& VERY recluse |
| [email protected] Anne Campbell Chicago 5-22-46 |
9/92 | Dx 1992, low grade follicular B-cell NHL, mixed large & small cell, 80% bone marrow involvement, stage 4. Tx 1997-Fludarabine. Tx 1998-Rituxan. Tx 2000-Rituxan. Tx 2001-Rituxan. | Live with vocal 15 1/2 year old Siamese, Mr. Dana! |
| [email protected] Charin Smith Oswego, NY 5/65 |
Summer 98 | NHL-malt stage I - also diagnosed with Sjogrens Syndrome (similar to Lupus). Not receiving any treatment for NHL. Watch and wait!! Perfactly fine with me! | Husband, 2 children, 2 step children, dog and a cat |
| [email protected] Mrs Jenny Bodnarchuk Guernsey Channel Islands UK 30th January 1948 |
Feb.1998 | Wife of John who had stage IV high grade Non Hogkins Lymphoma and died 25th December 1999 | Wife of John who had stage IV high grade Non Hogkins Lymphoma and died 25th December 1999 |
| [email protected] jack jolin 7-19-38 |
3-91 | recurrance of non hodgins lymphoma in 3-99 | |
| [email protected] Carl Murdock Ohio 11/24/46 |
Dec 16, 1999 | I have been dignosed with NHL-Mantel Cell. Will begin CHOP in combination with Rituxan with in the next week or so. | |
| [email protected] Chrissy Greig-- Wife of Lance Burnaby, British Columbia, Canada 28...march 1, 1971 |
01/99 | SLL/CLL, stage IV, spleen and bone marrow involvement...was W & W, starting Fludarabine on Feb. 7th, 2000....wish us luck! | Married for 6 years, we have a wonderful 1 year old daughter name Ciara and two spoiled cats name Murphy and Shamu. |
| [email protected] Sheila French Big Flats, New York 44 |
12/98 | NHL, low-grade, follicular, center-cell, stage lll. Treatments to date : CHOP x1, Fludarabine x 4, Rituxan x 4 .......w&w as of 8/99. | Husband Scott (25 years),2 adult children: daughter, Shannon and son, Stephen, and two very beautiful grandaughters |
| [email protected] George Wilson Spokane, Washington 5-15-51 |
Feb '94 | Diffuse mixed cell, stage IV, intermed NHL. Node involvement:neck, axillary,chest and groin. Approx. 50% bonemarrow inv.CHOP x 6,refractory after 4th treatment.Collection for stem cell transplant,July 94, but didn't follow through, poor prognosis for successful transplant.(Less than 10%)Bone marrow inv increased to over 80%.Fludarabine for nearly 2 years(approx.5 tr. per month) until no more benefit. Several rounds high dose (can't recall all protocols). High doses of Solumedrol Sept '97 until developed atrial fib. Rutuxin x4 Apr'98. Heart attack Sept'98. Another round Rutuxin x4 Feb'99. Will begin higher dose Rutuxin x8 in Jan. | wonderful wife Pam, 5 children all grown, 8 grandchildren (9th on the way). Great family and friends - my support system. |
| paradise@flandersjewellerycollectio ABRAHAM ROLAND BELGIUM 17.11.48 |
Follicular NHL | MARRIED, 2 BOYS | |
[email protected] Karl Schwartz Staten Island 8/20/50 http://www.lymphomation.org |
Joanne: 1/96 | My spouse, Joanne, has low grade follicular lymphoma | I am the list owner of NHL-info (formally NHL-other) Our list includes a diverse group of Non-Hodgkin's Lymphoma patients, caregivers, and some medical professionals. The spirit of our group is to inform, and provide help for patients in need. Members post questions and advice about alternative, complementary, experimental and conventional therapies. We exchange strategies for watch and wait, and discuss experiences with therapies of all kinds. We post clinical trial information, news, published studies, and provide links to invaluable Web sites, like LRFA and the NHL survivor's guide. We insist that all posts are respectful. We ask that information posted include references, and that members present (not promote) treatments or support ideas. |
Page 4 of 6