I am a 35 year wilms tumor survivor

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  • mudshark
    mudshark Member Posts: 7
    #22
    oldest Wilms survivor?
    You are NOT ALONE- I was diagnosed in August of 1957-I was 3 and 1/2 years old.Operated on in the Chelsea Naval Hospital in Boston, Mass. They took my left kidney and spleen, then bombarded me with radiation for what seemed like forever. I live in central New York state, about 35 miles north-east of Syracuse, which meant trips back to Boston every month, then 3 months, then six months, then finally once a year untill I was 18. At the 15 year mark, I was cut loose from Chelsea and continued with chek-ups at Griffis AFbase hospital untill I turned 21, and lost dependent status. My Dad retired from the Navy after 20 years the year I was born-1954 which allowed me dependent status in the first place. On the 15th of February this year, I turned 56, which makes me a 53 year cancer survivor. I can't find anyone that seems to have lasted as long as I have, and I would love to hear from any other long-term survivors.
    My e-mail is paul.retired@live.com good health and long life to all
  • mudshark
    mudshark Member Posts: 7
    #23
    oldest Wilms survivor?
    You are NOT ALONE- I was diagnosed in August of 1957-I was 3 and 1/2 years old.Operated on in the Chelsea Naval Hospital in Boston, Mass. They took my left kidney and spleen, then bombarded me with radiation for what seemed like forever. I live in central New York state, about 35 miles north-east of Syracuse, which meant trips back to Boston every month, then 3 months, then six months, then finally once a year untill I was 18. At the 15 year mark, I was cut loose from Chelsea and continued with chek-ups at Griffis AFbase hospital untill I turned 21, and lost dependent status. My Dad retired from the Navy after 20 years the year I was born-1954 which allowed me dependent status in the first place. On the 15th of February this year, I turned 56, which makes me a 53 year cancer survivor. I can't find anyone that seems to have lasted as long as I have, and I would love to hear from any other long-term survivors.
    My e-mail is paul.retired@live.com good health and long life to all
  • mudshark
    mudshark Member Posts: 7
    #24
    oldest Wilms survivor?
    You are NOT ALONE- I was diagnosed in August of 1957-I was 3 and 1/2 years old.Operated on in the Chelsea Naval Hospital in Boston, Mass. They took my left kidney and spleen, then bombarded me with radiation for what seemed like forever. I live in central New York state, about 35 miles north-east of Syracuse, which meant trips back to Boston every month, then 3 months, then six months, then finally once a year untill I was 18. At the 15 year mark, I was cut loose from Chelsea and continued with chek-ups at Griffis AFbase hospital untill I turned 21, and lost dependent status. My Dad retired from the Navy after 20 years the year I was born-1954 which allowed me dependent status in the first place. On the 15th of February this year, I turned 56, which makes me a 53 year cancer survivor. I can't find anyone that seems to have lasted as long as I have, and I would love to hear from any other long-term survivors.
    My e-mail is paul.retired@live.com good health and long life to all
  • mudshark
    mudshark Member Posts: 7
    #25
    oldest Wilms survivor?
    You are NOT ALONE- I was diagnosed in August of 1957-I was 3 and 1/2 years old.Operated on in the Chelsea Naval Hospital in Boston, Mass. They took my left kidney and spleen, then bombarded me with radiation for what seemed like forever. I live in central New York state, about 35 miles north-east of Syracuse, which meant trips back to Boston every month, then 3 months, then six months, then finally once a year untill I was 18. At the 15 year mark, I was cut loose from Chelsea and continued with chek-ups at Griffis AFbase hospital untill I turned 21, and lost dependent status. My Dad retired from the Navy after 20 years the year I was born-1954 which allowed me dependent status in the first place. On the 15th of February this year, I turned 56, which makes me a 53 year cancer survivor. I can't find anyone that seems to have lasted as long as I have, and I would love to hear from any other long-term survivors.
    My e-mail is paul.retired@live.com good health and long life to all
  • karencrisp
    karencrisp Member Posts: 3
    #26
    Hi
    I am new to this site and discussion board. I am the carer for my husband who is stage IV grade 3.
    I just have to say you are a miracle. Congratulations to you. You are a true survivor and a model for hope for all out there
    Karen
  • mudshark
    mudshark Member Posts: 7
    #27
    emdicaro said:

    what is the issue?
    The daughter that can't have children or the daughter who feels she was not loved enough? I can't have children and I have three brothers, one felt that the love was not being shared equally amongst all the children. He demonstrated his feeling through violent behavior and verbal abuse. Now as an adult he understands that his health and experience in a healthy body far exceeds any slight he may have felt from a parent. He had to reconcile his feelings with himself, not with the parents. As far as not having children and having a freakishly small waist, it never bothered me. What is most important is staying healthy through diet and exercise and taking this particular life and shaping it into something unique and special. Something the world has never seen.

    having kids
    What's all this about not being able to have kids? I'm a 53 year survivor of Wilms and I'm happy to say that I have a daughter and grand daughter.Maybe because I was diagnosed before chemo was invented---who knows? Neither has had any kidney problems, Thank you LORD
  • zumomma
    zumomma Member Posts: 6
    #28
    lorzpav said:

    wilms
    Hi, I am a 24 year old survivor of Wilms tumor aswell. I was diagnosed when I was 12 at stage 4. I am wondering the same question as you, whether I can have children. The doctors never told me or my parents that I couldn't but after reading lots of people stories I'm having lots of doubts. I'm also really scared of the long-term effects that other people are talking about. I haven't experienced any yet and don't really know what to look out for....

    pregnancy
    I had WT at age 5 in 1973. I remembering hearing the drs. tell my parents that they thought I might be able to have children, they just didn't know for sure, or if they would be "normal." I had no trouble conceiving; the pregnancies were tragic, complicated, and relatively normal. I buried my first 2 sons due to extreme prematurity. I have 2 boys and 2 girls. I needed to have a procedure done for the last 4 pregnancies to help keep me from going into labor too early. The kids were all born 3-6 weeks early, even with the intervention, but only 2 had to stay in the hospital ( a week each). All of my kids are "normal" LOL! They are all enrolled in a non-invasive study for children of WT survivors. No one can know for sure about the infertility/pregnancy stuff until it happens/doesn't happen. There doesn't seem to be a yes or no answer. I think much of the complications for pregnancy stem from which kidney was removed, treatments used, and other factors such as relapses, stage of the cancer, and just plain old family history.

    I'd be glad to talk to you more about this.
    Zuma
  • erin3746
    erin3746 Member Posts: 3
    #29
    beckasweird said:

    wilms
    Hi! I am a 24 year old survivor, diagnosed when i was 6, stage 4...
    and had my left kidney removed + chemo and rad treatment. and I just really want to know for sure whether or not i can have children... Ive always assumed i couldnt, but i have been looking it up and its given me a spark of hope... anyway, if anyone has any experiences with this issue id love to hear about them...

    Wilms
    I am a father of 6 1/2 year old with wilms tumor right kidney removed she now has it in the lungs we take here for her first 5days of chemo.she is stage v would be nice to speak to you and maybe you can give me some hope :)

    Hope to hear from you
    Rick
    Medic528@gmail.com
    My daughters web site
    http://www.caringbridge.org/visit/erinperez
  • cavenezia
    cavenezia Member Posts: 2
    #30
    cvb53 said:

    54 year survivor of Wilms
    Would like hear from someone who has experienced early menopause or chronic pancreatitis along with scoliosis and other problems due to scar tissue from radiation in the 50's-60's Thanks.

    Hi,

    I was diagnosed with a Wilms tumor in 1966 at age 7, and this was only discovered because earlier in the day I had accidently fallen from the emergency exit of my moving school bus! My parents were told that I wouldn't survive the month. I had surgery followed by a 3 year regimen of Cobalt radiation and Dactinomycin (experimental at that time) at Riley Hospital (John Donahue, M.D.) in Indianapolis.

    I survived pancreatitis and ARDS at age 29. I had thought that the pancreatitis was caused by overindulgence (alcohol, smoking and poor diet...at the time, evidently not showing much gratitude for having been given a second chance!), gall stones and had been taking prednisone for a skin rash, too, just prior. I didn't realize that being a Wilms survivor might predispose one to pancreatitis.

    Had thought I was unable to conceive, but eventually had 2 children (at age 39 and 41) and shortly thereafter went into Menopause.

    My current issue is related to my scoliosis. It was never a problem (aside from not being able to find jeans that would fit my odd hip-to-waist ratio) until recently...now, because of the muscle atrophy from radiation and also, I imagine, because of my age, my spine is sort of collapsing to the side. It causes major muscle spasms and I'm unable to walk or run more than 20 paces without collapsing. My Orthopedic surgeon has recommended Pilates...and if that doesn't work, surgery.

    This has been an amazing rollercoaster of a journey...lots of bad coupled countered with lots of good. I still LMAO when complimented on my Jessica Rabbit figure and unnaturally thick mane of hair! (I usually credit it as a fringe benefit of 60's cancer treatment.) Now, if I can just manage to keep walking...

    C
  • JoannePasillas
    JoannePasillas Member Posts: 10
    #31
    karencrisp said:

    Hi
    I am new to this site and discussion board. I am the carer for my husband who is stage IV grade 3.
    I just have to say you are a miracle. Congratulations to you. You are a true survivor and a model for hope for all out there
    Karen

    Hi ther my husband who is 37
    Hi ther my husband who is 37 yrs old was just diagnosed in July of 2010 with wilms and I want to find anyone else who has had wilms in their adult hood....
  • JoannePasillas
    JoannePasillas Member Posts: 10
    #32
    karencrisp said:

    Hi
    I am new to this site and discussion board. I am the carer for my husband who is stage IV grade 3.
    I just have to say you are a miracle. Congratulations to you. You are a true survivor and a model for hope for all out there
    Karen

    karen did ur husband have or
    karen did ur husband have or has Wilms?
  • michelej3
    michelej3 Member Posts: 4
    #33
    cavenezia said:

    Hi,

    I was diagnosed with a Wilms tumor in 1966 at age 7, and this was only discovered because earlier in the day I had accidently fallen from the emergency exit of my moving school bus! My parents were told that I wouldn't survive the month. I had surgery followed by a 3 year regimen of Cobalt radiation and Dactinomycin (experimental at that time) at Riley Hospital (John Donahue, M.D.) in Indianapolis.

    I survived pancreatitis and ARDS at age 29. I had thought that the pancreatitis was caused by overindulgence (alcohol, smoking and poor diet...at the time, evidently not showing much gratitude for having been given a second chance!), gall stones and had been taking prednisone for a skin rash, too, just prior. I didn't realize that being a Wilms survivor might predispose one to pancreatitis.

    Had thought I was unable to conceive, but eventually had 2 children (at age 39 and 41) and shortly thereafter went into Menopause.

    My current issue is related to my scoliosis. It was never a problem (aside from not being able to find jeans that would fit my odd hip-to-waist ratio) until recently...now, because of the muscle atrophy from radiation and also, I imagine, because of my age, my spine is sort of collapsing to the side. It causes major muscle spasms and I'm unable to walk or run more than 20 paces without collapsing. My Orthopedic surgeon has recommended Pilates...and if that doesn't work, surgery.

    This has been an amazing rollercoaster of a journey...lots of bad coupled countered with lots of good. I still LMAO when complimented on my Jessica Rabbit figure and unnaturally thick mane of hair! (I usually credit it as a fringe benefit of 60's cancer treatment.) Now, if I can just manage to keep walking...

    C

    38 year survivor of Wilm's Tumour
    Hi,

    I was diagnosed in 1972 at age 4 years 11 months. So glad to read about other long term survivors of Wilm's. I had surgery, radiotherapy and chemotherapy. Was diagnosed with early invasive cancer of the cervix at age 22. I suffer from scoliosis, back pain, right sided atrophy and discomfort. I also have uneven breasts and a rotated and uneven pelvis. Despite all of this life has been good to me. I have 2 beautiful children and a loving husband. I would love to hear from other long term survivors (especially in Australia where I am from)

    M :)

    p.s I too have always had trouble getting clothes to fit properly!!
  • tobeme1130
    tobeme1130 Member Posts: 2
    #34
    mudshark said:

    oldest Wilms survivor?
    You are NOT ALONE- I was diagnosed in August of 1957-I was 3 and 1/2 years old.Operated on in the Chelsea Naval Hospital in Boston, Mass. They took my left kidney and spleen, then bombarded me with radiation for what seemed like forever. I live in central New York state, about 35 miles north-east of Syracuse, which meant trips back to Boston every month, then 3 months, then six months, then finally once a year untill I was 18. At the 15 year mark, I was cut loose from Chelsea and continued with chek-ups at Griffis AFbase hospital untill I turned 21, and lost dependent status. My Dad retired from the Navy after 20 years the year I was born-1954 which allowed me dependent status in the first place. On the 15th of February this year, I turned 56, which makes me a 53 year cancer survivor. I can't find anyone that seems to have lasted as long as I have, and I would love to hear from any other long-term survivors.
    My e-mail is paul.retired@live.com good health and long life to all

    maybe I am the oldest two time wilms survivor
    Hello Paul glade to see there are more like us out there. About me i was born on November 30 1960. MEDICAL BACK GROUND: On April 9 1963 I had a right nephrectomy followed by extensive radiation and chemotherapy for a wilm's tumor. On February 14 1964 I had surgery for a recurrence again followed by extensive radiation and chemotherapy. On April 5 1989 I had cholecystectomy, operative cholangiography, enterolysis and release of duodemal adhesions and appendectomy. On February 13 2009 I had emergency surgery which involved cystoscopy, resection of left ureteral orifice, remove of stone and placement of a double-J stent. What problem have you had along the way? best wishes Eric
  • beccabee
    beccabee Member Posts: 3
    #35
    17 year old survivor
    Hi, I'm 17 years old...I was diagnosed with wilms tumor when I was 15 months old. I had a nephrectemy(spelling?) and was on Chemo thereapy for 6 months. I was on achtinamiacinde and vencristine, and was allergic to achtinamiacinde so they put me on adrianmiacin(an older drug)

    I am cancer free now, but ever since I was little I've had this thing I call a "fat pad" it's a mass in the middle of my abodmen under and surrounding my belly button. I loose and gain weight under it.I have had it my whole life, but in the past month it's grown and I know it's not me gaining weight because I've lost weight. Even when I lay down it is clearly visible and you can see my pulse in my stomich. I've been to three or four doctors about it and no one has been able to figure it out and nothing shows up on an ultra sound.

    Has anyone else had this problem? Please let me know!
  • gregrach
    gregrach Member Posts: 2
    #36
    Hi there,
    I'm a 34 year old
    Hi there,
    I'm a 34 year old survivor of Wilms Tumour. Had my right kidney out in 1983 when I was 7. I was unusually old to get this type of cancer. I had 20 months of chemo. I am doing very well. Have two healthy children even though I was told I might not have any. No other issues at all so far.
  • Lynnette05
    Lynnette05 Member Posts: 2
    #37
    Wilms Tumor Survivor
    I am also a survivor. I am now 62 years old. My tumor was discovered when I was 4 years old in 1952. I had a 2% survival rate. Still live and kicking.
  • viktoriacl
    viktoriacl Member Posts: 1
    #38
    Lynnette05 said:

    Wilms Tumor Survivor
    I am also a survivor. I am now 62 years old. My tumor was discovered when I was 4 years old in 1952. I had a 2% survival rate. Still live and kicking.

    38 yo survivor
    Can relate to many on here! So glad to find this! I was diagnosed at age 4 1/2 years old. I recieved Vincristine,Adrenamyacin,radiation(full abdomenal) and a right nephrectomy. I was treated at the Dana Farber and Children's hospital in Boston Ma. I am now 38. I have the tiny waist issue too! I have a bad back also. I got my period at age 13 but it became sporatic at best. I then started with hot flashes. I started taking HRT at that time and have ever since. I have 3 children that are all adopted :)
    I really thing as the years went on they really improved the Chemo and really narrowed the radiation. The earlier the treatment the more radical it seems to have been. I know that what was done for me at that time was what they new worked! I'm thrilled they were able to do what they could at that time. Glad to meet all of you on here!
  • Ubik32
    Ubik32 Member Posts: 1
    #39
    viktoriacl said:

    38 yo survivor
    Can relate to many on here! So glad to find this! I was diagnosed at age 4 1/2 years old. I recieved Vincristine,Adrenamyacin,radiation(full abdomenal) and a right nephrectomy. I was treated at the Dana Farber and Children's hospital in Boston Ma. I am now 38. I have the tiny waist issue too! I have a bad back also. I got my period at age 13 but it became sporatic at best. I then started with hot flashes. I started taking HRT at that time and have ever since. I have 3 children that are all adopted :)
    I really thing as the years went on they really improved the Chemo and really narrowed the radiation. The earlier the treatment the more radical it seems to have been. I know that what was done for me at that time was what they new worked! I'm thrilled they were able to do what they could at that time. Glad to meet all of you on here!

    Chemo but no radiation
    Hi everyone! I am 32, I was diagnosed age 6 (84 or 85). I had my right kidney out and had about 18 mths of chemo but didnt have any radiation. I had actinomycin D, Adrianmycin and Vincristine. I was given about 15% chance of remission but all clear.

    I have no long term side effects that I know of. I dont have any spinal problems, and my period came at age 10 and has always been regular and normal. My body is totally normal and symmetrical....as for early menopause that hasnt happened so far. Are alot of these long term effects due more to radiation? Are there any others here who did not have radiation? I am curious to know what are possible effects from just chemo.

    Thansk guys! Happy new year!
  • eaprende
    eaprende Member Posts: 1
    #40
    photoman said:

    Hello Joseph,

    I am a 42yo survivor of Wilm's Tumor. Surgery in '64 along with radiation and chemo. At the time I was in M.D.Anderson (end of '64/early '65) there were eleven other kids there like me and I'm the only one that made it. I'm glad to be here!

    I understand that the survival rate for Wilm's Tumor is MUCH higher now and that's good news!

    David

    Hi David
    I am 25 years old and I am also a cancer survivor. I was diagnosed when I was 3. I had it on my left side. The funny thing is that my mother had it when she was young as well. She was nine months old when she got diagnosed. She passed away at the age of 39 ten years ago from the radiation affects. God bless you in the fact that you are healthy! I mean that from the bottom of my heart.

    When I had this horrid disease I had relapsed and it was on my aorta. I went through a different number of treatments. The doctors had lost hope and I showed them wrong. It has been 22 years since I was diagnosed and I am cancer free since I was 6 years old.

    This is a question for anyone that wants to reply. I was told that I have nodule on my right lung. I have made an appointment with an oncologist to have tests done. Has anyone been diagnosed with other forms of cancer since treatment of WT?

    Elizabeth
  • JeffMyers
    JeffMyers Member Posts: 5
    #41
    Another Wilms Tumor Survivor
    My name is Jeff Myers I am a 40 year Wilms Tumor Survivor. I was 2 and had my right Kidney removed. At 42 years old I am happily married with 3 daughters. I teach our Churchs Teen Sunday School Class and am a Deacon in my Church. All I can say is Gods been good!

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