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I am a 35 year wilms tumor survivor

joseph38
Posts: 5
Joined: Feb 2004

Hello Folks, I am a 35 year wilms tumor survivor. I had my left kidney taken out when I was 2 1/2 years old. On Tuesday of I will be 38 years old. I am doing great. Would like to know if there are any other wilms tumor survivor here. Thankyou

JoannePasillas's picture
JoannePasillas
Posts: 10
Joined: Sep 2010

karen did ur husband have or has Wilms?

beccabee
Posts: 3
Joined: Oct 2010

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!

bubbles2011
Posts: 2
Joined: Mar 2011

Hi - I'm 45 years old and I had wilms tumor when I was 4 yrs old. left kidney removed and radical chemo and radiation. ( 1960's style ) I always had that hard scar right around my belly button from the radiation. I have many late effects that really started when I turned 30. I started having digestive problems and experienced a couple of really bad blockages. I eventually had surgery to remove adhesions and scar tissue from by intestines. The hard lump near my belly button is now gone. I do still experience blockages, but I now know what types of food to stay away from. Overall, I can say i had a pretty normal adolescence. Lots of good times and my experience has given me a real zest for life! Most important thing is to know your own body and take charge of your own health. Many doctors need to be directed because we are definately special cases!

michelej3
Posts: 4
Joined: Oct 2010

I am 43 and had wilm's when I was nearly 5. I had right kidney removed, chemo & radiotherapy (also quite radical). Really interesting to read your story and others. I am interested in learning more about your digestive/intestinal side effects. Reply if you can. Thanks

gregrach
Posts: 2
Joined: Nov 2010

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
Posts: 2
Joined: Nov 2010

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
Posts: 1
Joined: Dec 2010

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
Posts: 1
Joined: Jan 2011

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!

JeffMyers
Posts: 5
Joined: Jan 2011

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!

jasaul
Posts: 2
Joined: Mar 2011

Hi Jeff- thank you for your post. I am a mom of a beautiful, vibrant 2 yr old girl who was just diagnosed with Wilms of right kidney. It gives me so much hope and faith that I can read about ADULTS who have gone on to live productive, full lives! This is terrifying and reading your post really helps!

Zeyad
Posts: 3
Joined: Aug 2011

Hey Jeff!! I am so happy to hear of your "success" story!! I am a wilms tumor survivor. Got it at age 5 was stage IV. Recent graduate in Medicine .. You can guess what made me choose that path. Want to ask you, ever had any problems with fertility? any info would be GREAT!! I am too scared to get a semen analysis, want to hear it from you first ..

nikkicole
Posts: 1
Joined: Jan 2011

I am also a Wilms Tumor Survivor. I am now 27 years old and I had my left kidney removed at age two. I am doing well and I feel very blessed. :)

gkersh
Posts: 1
Joined: Feb 2011

Had my left kidney removed when I was almost 2 in 1969. Only had radiation. Would never known it was missing if I didn't have the scar. I am a dad with two kids.

I do have a question for all you 40+ yr. survivors. Last couple of years I have had a significant reduction in my energy levels and major hot flashes. My Dr. said my testosterone had dropped to the level of a male in their 70s and started me on testosterone replacement. Its been a couple of months now and I have only seen modest improvement. Has this happened to anyone else out there. I was thinking since they removed the kidney and the adrenal gland that it might be related.

Chyna
Posts: 2
Joined: Mar 2011

Hello!!! Im a mother of an 7yr old that has wilms I just found out Jan/2011 her left kidney was removed and she had radiation and is now doing Chemo she is in week 5 of chemo and it is really making her sick and she do soooo good when she dont have the chemo do anyone know any risk if I wanted to stop the chemo

oliviabellebndgk
Posts: 2
Joined: Mar 2011

I may not be as old as you, but I'm a 15, almost 16 year old cnacer survivor. I had Wilms tumor stage 4 when I was five and six years old. I get through surgery, Chemo, and Radiation. I'm doing wonderful as well:) Ive been looking for somebody to share my experience and emmories with. if you're interested, you should email me.
oliviabellebndgk@gmail.com

Thank you, and I hope to hear from you soon.

jasaul
Posts: 2
Joined: Mar 2011

It gives me so much hope as a mom, reading your email along with so many others. My 2 yr old daughter was just diagnosed with wilms tumor and this has been a frightening time. To read that there are so many people who have gone on to live long, productive lives gives me so much hope! Thank you for sharing!

oliviabellebndgk
Posts: 2
Joined: Mar 2011

I've been in remition for ten years now. I have nothing wrong with me although I do have to take a lot of precautions but they're nothing too big of a deal. I live a normal life, just have to be careful about coming to all appts, not taking the wrong meds that can hurt my kidney, and staying out of the sun. i also cannot play contact sports without a kidney sheild, but that's not a big deal. It doesn't bother me at all:) I wish your daughter luck and she's in my prayers <3.

CH
Posts: 4
Joined: Jun 2011

I am a 44 year old male. I was diagnosed with 3rd stage nephroblastoma at 2 1/2 months old and treated at what was then a very tiny Orange Memorial Hospital in Orlando, Florida. That was pre-Disney Orlando in 1967 and well before the sophistication of what is now Orlando Health. Because the tumor was 3rd stage (larger than the kidney and had completely errupted) when it was discovered they opperated the next day removing the right kidney. The surgeon had said the tumor disentegrated into wheat chaffe like seeds and fell back into the abdomen so they sprayed the inside with some sort of chemical. Later I was exposed to high level radiation in equipment sized for adults and they did the best to wrap me in lead, etc. I received Cytoxin orally for at least a year. Growing up was relatively normal, however, I began developing scholiosis due to half the spine being hit and one side of each vertebrae was growing at a slower rate than the side that was not hit. I wore a brace to try and minimalize this effect. Mainly the brace just flattened out the side of the already weakend rib cage. The right cage only grew to about half the normal size of the other. At 18 they fused over 20 vertebrae and inserted 3 long s shaped herrington rods to hold the structure in place and follow the sway of the back. Fortunately this did not involve the neck or lower back so my range of motion is normal. On a possitive note, I awoke nearly 2 inches taller. I have now had this back longer than the first. I snow ski and water ski so I can't really say it has been an issue. Also at 18 I had my last solid stool. Every possible reason was studied but the final conclusion was that the section of the intestines that absorbs water finally gave out due to long term radiation exposure. Radiation can concentrate in the intestines. At 23 the right hepatic flexture of the large intestine (which was nearly behind where the removed kidney was) atrophied to near collapse and fearing a rupture they removed this via a colon resection. Because the skin on the right abdomen is as taught as a drum, they made a long incision toward the normal side. I thus have two parrallel scars down the abdomen. Since my last name is starts with an H, I always joke that if they go in again I will have them go perpendicular across those. When married in my 20s I discovered I was unable to have children and after 13 years of marriage and heartache (we went all over the country trying different things) we divorced for this and other reasons. She did not want to adopt and it was difficult being with someone so unhappy. Aslo in my 20s I devleoped high blood pressure and continue to take 10 mg of benezepril to this day. This may have nothing to do with the Whilm's and radiation as high blood pressure runs in my family. Although not very high, with one kidney they prefer it stay low. I also take tricor, but this has more to do with the pizza, beer, and hamburgers. Frankly, most men in their 40s take something. Recently I began getting weekly b12 injections and a monthly iron drip for annemia as it appears the intestines are loosing their capacity to absorb more nutrients and the chronic diarreah doesnt help. Ironically, this doesn't present much of a problem as I can eat whatever I want and at 5'9" weigh 130 pounds. Since I work out daily it is nearly all muscle. Not bad to look this svelte at 44. Generally I feel pretty good. My only worry, like many of you have expressed, is the worry of what other shoe is gonna drop...not so much cause I couldn't handle it, but because of the insurance worry. I have always managed, even though self employed, to have health insurance. It has become such a ridiculous issue in this country I finally changed parties from a life long republican to a democrat. We used to have a republic but it is rapidly becoming a plutocracy. Those of use who truly understand what a miracle health care is, and what a disaster the way our private system works need to speak out. I doubt my parents could have afforded our system now had been born more recently but before the important healthcare reforms.

AmynBri
Posts: 6
Joined: Feb 2012

oliviabellebndgk,

My 9 year old daughter was diagnosed last month (Jan. 2012) with Stage 4 Wilms. I am interested in hearing your story and experiences with your wilms. She has not yet had her radical nephrectomy or the resection of the large tumor in her right lung as they are waiting for the chemo meds to shrink those down to a size that is safer for resection. I am very scared for her. She starts an trial treatment at week 7 (yesterday marked week 5 of her treatment). What was your treatment like? What effects have you had? Do you or your parents wish you had done anything differently? Do you have any advice to give?

You have to wear a kidney shield? Why is that? Is it because of the nephrectomy or something else?

I would love to hear from you.

~Amy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Amy, just in case you didn't spot it, oliviabellebridgk gave her email address above (on March 18th 2011) and invited contact with her at

oliviabellebndgk@gmail.com

I hope she can help you and I wish the very best for you and your Daughter.

smaupin
Posts: 4
Joined: Nov 2012

I was diagnosed with Wilm's tumors when I was 5 years old and, in the last 30 days, I have walked my daughter down the aisle and organized my 45th high school reunion! (Yes, I said 45th!). I remember being afraid, feeling "different" and missing out on some opportunities. But I also remember the nurses racing my wheelchair down the hall, the farmer from next door bringing me wild flowers from his field in his dirty overalls and the cheerleaders from my brother's high school letting me sit on the bench with them. Fighting cancer and radiation was part of my life and gave me the sense that i could accomplish anything if I tried hard enough. With your love and support, your daughter will be just as fortunate. smaupin@accelrva.com

mroyal60
Posts: 12
Joined: Jun 2011

1960 at age 6 months as infant. I am now 51 years old. Took right kidney and had radiation. I have a 26 yr old son.
I have the crooked body of where the seam down the seat of pants never goes straight down the body. As I walk it eventually makes my pants twist to the point I must go readjust to get the zipper or the button back to the midline.

I have late effects from radiation.

I too am on the lookout for people older than me. Mostly to see what the future may hold

I HATE water yuk

My first post so not sure if it replies to JOseph38 only or if it goes to bottom of other stories. Hey Joseph38 please tell me3 how to do this if I did it wrong. Thanks

b_churchley
Posts: 2
Joined: Jul 2011

Im 35 and was just diagnosed 3months ago with having a tumor on my right kidney they where going to leave it cause it was not growing but my c t scan i just had showed it grew a hair so now im waiting to hear when my surgery will be and which kind they are going to do. My specialist told me im the youngest he has ever seen with this type of tumor on my right kidney its normally people in there 70s who get it. iv been having burning pain on my right hip area not sure if its from the kidney or arthritis. it also runs down my leg into my foot and feels like i walked on glass. but Im glad to see your doing well and that makes me feel better. I have three special needs children that need me so im fighting all the way to stay healthy. if any one else has had the same as me please let me know how things are now.

Thanks so much

B.J

RoxAnnaF
Posts: 2
Joined: Apr 2012

I had surgery in March 1965. My pediatrician tried to tell my mom it was from me eating gum. He also told my mom I wouldn't live.

That being said I had the surgery in Rapid City SD by a urologist, both he and the hospital did the surgery at no charge because they were unsure of the surgery. And of course a stay in the hospital then radiation started shortly after that. Not knowing the extent radiation and cobalt treatments that bombarded my left side from my mid rib cage to my hip on the left side.

My ribs have never grown on my left side and are still the size of a 3 year old, lack of working back muscles have been an issue, but I found good chiropractic treatments alleviate and help with the induced scoliosis and pain and wished I had started them as a youth.

I had 3 children but my doctor was not happy with me worried about the strain and high bloodpressure associated with child birth. Some hbp with first child but other 2 were normal.

I have some hip deterioration I am watching as I get older, but after 2 heart tests a stress and mri. My heart appears good.

My right kidney is enlarged due to the lack of a left kidney, but doctor thinks that is consistent.

I wear lots of pants with elastic waist or pull string waist, very rarely find good fitting bottoms.

mroyal60
Posts: 12
Joined: Jun 2011

Right kidney removed in 1966 at age 6mos. Looking for senior citizens AARP card holders and Wilms hx :) YES!I am happy to type 52 years survivor.

Had radiation only. Few body problems not kidney problems. Curved spine and whats looks like a big shark bite out of right side of body. Gets deeper each passing year Have a high hip and a low hip really a sag and muscle problem at waist line due to deep scar on one side (Asymetric torso)so clothes choosen by their camo effect.

Thank you for posting as I have never considered there might be gender specific
effects and differences. Please share if you are comfortable

Anyone out there have the shark bite torso effect??

RoxAnnaF
Posts: 2
Joined: Apr 2012

YES!! I have a huge difference from left to right side, and use my shirts to cover the inconsistency in my left side. It seems the skin didn't grow when I did. My ribs are small and didn't grow, no back muscle, etc., Oh and my belly button is pulled way over to the left :)

leejcarr
Posts: 4
Joined: May 2009

im a 40 yr survivor now just wondering if you have health issues, i do wondering if you can contact me at my email weedog@live.com

carson00
Posts: 1
Joined: Nov 2012

Hello, my son was diagnosed with Wilms Tumor at the age of 21 months old.It was the end of March 2002. He does have health problems that were caused by chemo. He has bladder, bowel, and a mild mental diagnoses. He just got dianosed with a slight case of Autism. We do not know if it was caused by Chemo or not. His right kidney had to be removed. His tumor was the size of a grapefruit. His bladder was normal size before chemo. Now it only holds 7 oz. As it has shrank. He had dactomyisin and vincristine. Sorry about the spelling. The dactomyoson didn't give him any side effects but he got really sick and weak with the vincristine. He had to undergo Three blood transfusions and two platelets. The drs. Said he will be unable to have kids which breaks my heart. He has been in remission for 10 yrs but at high risk of getting it back. He was in stage 2.

smaupin
Posts: 4
Joined: Nov 2012

I was born in 1949 and diagnosed with Wilm's Tumor in 1954. My right kidney was removed and I was scheduled for 35 doses of radiation. After my stomach was "burned black" (according to my cousin who told me about it about 5 years ago), my father stopped the radiation "against medical advice." He said that if I died it should be from the disease, not the radiation. The tumor metatasticized to my left lung 2 years later. A second operation removed the tumor and a small piece of my lung.

My old-school parents never told me I had cancer (perhaps avoiding having to acknowledge it). They told me I had a "growth" and that removing it cured me. While in college I met a nursing school student at the university where my operation was performed. She was a little skeptical of my description of a simple growth as the cause for my scars and she wheedled her way into medical records to check it out. At age 20, my future wife sat me down and explained that I had nearly died of cancer.

Other than quarterly trips to the doctor,many, many chest x-rays and one leg that was 3/4 inches shorter than the other and related back pain, I experienced few side effects as a youth. The biggest issue was not playing football. I begged for permission to play, but my parents said "only if the doctor okays it. In December of every year I would go to my doctor and ask him to sign my physical so i could play. Every year, he said "maybe next year." Finally, in December of my junior year in high school, he said "if you are still crazy enough to want to play you can give it a try." At age 17, with no experience in organized football, I tried out for varsity. After a slow start, i ended up playing offense and defense and kicking on a team that went undefeated and won a state championship!

Today, I have several lasting side effects. Most noticeable is the same ill-fitting clothes mentioned above caused by one skinny side and one "normal" side. I am so glad to see the posts on this blog. I have been saying for years that I cannot find blue jeans to fit and everyone thinks it is just an excuse for wearing only khakis. My spine is curved slightly with one side of each vertebra slightly larger than the other. I have had a "weird" medical history including sarcoidosis (very rare for a white male), multiple bilateral neuropathies. I also have a world class ability to generate colon polyps. In the past 7 years, I have had 8 colonoscopies and have had 49 polyps removed from my colon. My single year record is 13.

I had the good fortune of meeting the Dean of the Medical School of the university where I had the surgeries and was treated with cobalt radiation and, out of curiosity, he initiated a search for my medical records. They were located along with thousands of others from the same era as the result of a special project he launched. I have almost an inch thick notebook of records including a diagram showing how the radiation was administered nd a log of the treatments. The radiation was "pinpointed" using a lead shield nearly the size of a sheet of notebook paper covering the left side of my abdomen and the radiation bombarded the entire right side. Not surprisingly, all of the polyps mentioned above were found on the radiated portion of my abdomen.

One consideration that I think long term survivors should consider is damage to the capillary system. Apparently, the radiation used in this era badly dmamges the bodies ability to heal. The incision scar from the kidney operation (the radiated side) is jagged and very wide. The incision on the other side is a thin line. I have also had a very minor operation on my lower abdomen on the radiated side and the scar is wide and ugly. It took months to heal. I am told that I should try to avoid any kind of surgery on that side if at all possible.

Again, I am thrilled to find this blog. After reading through most of it, I thought I might be the oldest survivor, but I believe I was knocked out of first by at least one person. Like everyone, I have met many people struggling with a new or an old diagnosis of cancer. It has been very rewarding to be able to tell them I am a 50+ year survivor. It almost always brings a smile to their face and I hope people reading this blog will gain from my story as well.

Thanks for listening - and if anyone knows the name of a good tailor who specializes in hard to fit people, please send it along.... smaupin@accelrva.com

momon
Posts: 2
Joined: Apr 2013

Hi Joseph..I had my partial nephrectomy last April 3..my adult wilm's is stage 1,favorable histology..and its size is 2cm...I don't know if I should have an additional treatment for this...I have discussed this with my doctor but I don't think if he's sure..he referred me to another oncologist and was advised to have chemotherapy for 18wks.I asked for a second opinion..the doctor said I may not have an additional treatment cos it's only 2cm...I don't know what to do...but if I have a choice, I don't want to have chemo becos I'm scared that chemo may have the same damage as the disease.

hannahjayne1994
Posts: 1
Joined: May 2013

I was diagnosed with a wilms tumour when i was 22 months, i was a stage 3. im now 18 and other than a dodgy immune system i am really health. The future worries and puts alot of stress on me. I was just wondering if anyone has had any late effects as they have gone through adulthood.  

 

Thanks Hannah 

p3ps1cola
Posts: 2
Joined: May 2013

my daughter had stage 3 wilm tumor when she was about 24 months and she will be turning 22yrs old this year.  She is a healthy young adult with occasional headaches but I think thats cause of life issues from trying to balanceso much at one time such as college, work and relationship.  

leila2013
Posts: 2
Joined: Oct 2013

My daugter (4 years )has wilms Tumor, and we are still waiting for the results from the pathologist...we are very woory about. I hope she will be like your daughter survival of the disease

leila2013
Posts: 2
Joined: Oct 2013

My daugter (4 years )has wilms Tumor, and we are still waiting for the results from the pathologist...we are very woory about. I hope she will be like your daughter survival of the disease

p3ps1cola
Posts: 2
Joined: May 2013

Hello Joseph, My daughter diagnose with a Wilm Tumor shortly before she turn 2 years old.  Two days before she turn 2 yrs she had one of her kidney removed and 2 days after she started chemo.  By the grace of God she will be turning 22 yrs old this year and is doing good.

redbeard0206's picture
redbeard0206
Posts: 10
Joined: Mar 2011

I'm a 46 year survivor. Diagnosed at age 6. Nephrectomy of left kidney then had cobalt, cosmagen Digitoxin and a couple other chemicals. I think Mom said chemicals were experimetal at the time.

I developed the scoliosis while in the 70's. High blood pressure in my 30's., Diabetes in 2008.

Diagnosed with renal carcinoma Nov. 2010 Had metasis in spine removed Dec. 2010 and partial nephrectomy of right kidney in Feb. 2011.

280rounds of radiation began in March 2011 and started Sutent.

mean56
Posts: 11
Joined: Nov 2009

Hello everyone!

 

I hope this discussion is still ongoing. I was so relieved to ifnd this discussion. I was born with Wilm's in 1956. My surgery was at Columbia Presybeteriasn in NYC. Have also been told that I am the youngest survivor. I was days old. My parents did not share much information so getting some of it here. I grew up normally and WT never held me back [ I always thought I could do anything anyone else could do. If anyone ever asked "what does it feel like to have 1 kidney I would just laugh - it was all I knew and I thought I was normal. Was told I would not be able to have children twice. The last time I had to have a tube & overy removed due to endrometriosis. They had to take my good one and I was told that it looked like a 10 year olds tube & ovary. I have 3 children/miracles. Ladies, so happy to meet you because we have sooo much in common. Nice to meet you gentlemen also! 

I wanted to introduce myself, read all of your comments again, bask in the knowkedge that you are there, you exist and we are eexperiencing so much of the same effects. I knew in my head that the radiation caused and is causing some of the things I have. I feel validated and empowered and relieved.

 

Once again, so nice to meet you. I am so frateful that you are here.

Mary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Mary, thanks for sharing your inspiring message about your sense of empowerment and relief.

mean56
Posts: 11
Joined: Nov 2009

Curious to know if any of you had tried alternative treatments for type II diabetes? Because the pancreas has physically been damaged by raadiation - would that be a cause if diabetes is not in the bloodline? In our cases - can it be cured?

I am researching since I was just diagnosed. There is nothing better than your words/thoughts. and a doctor that gets it. 

 

Anyone know how I could get my medical records from that time frame. I have nothing at all. I guess my parents didn't want to remember it.

Thank you ! 

Mary

NanoSecond's picture
NanoSecond
Posts: 503
Joined: Oct 2012

Hi Mary,

The Beta-Cells in the pancreas manufacturer insulin, the major hormone that regulates the level of blood glucose in the bloodstream.  It certainly is possible to damage these cells by exposure to radiation.  If so, you will not be able to produce enough insulin to keep your blood glucose in check (i.e. diabetes).

I don't suffer from Type II Diabetes - but I do know that you can greatly help ameliorate the problem by following a low carbohydrate diet - essentially the same kind of diet that I recommend for anyone suffering from metastatic cancers.

If you are interested in the details of this diet - plus lots of other valuable information about what "proper" nutrition can do to help fight or prevent RCC please email me at:

n.feldman@videopost.com

And I will respond with my guide to nutrition attached.  It is a 61-page .pdf file.

In addition I would suggest discussing with your oncologist the use of the drug Metformin.  It wiil both help deal with your diabetes and work to limit tumor proliferation.

Hang in there,

 

-Neil (NanoSecond)

 

astar4ever
Posts: 1
Joined: Jan 2014

Hi All,

My daughter was diagnosed with Wilms Tumor in September of 2011 at the age of 1. It was as you all know one of the toughest things I had ever dealt with. That entire experience opened me up to another way of thinking when it comes to the medical industry. I will try and make this story short. So i decided not to give me daughter the chemotherapy. I also told the doctors that I would no longer allow them to give her any more xrays or CT scans. I did not want her to have any type of radiation. Her right kidney was removed and that was it. The doctors did not like my decision of not giving her chemo and the other medications. They actually went as far as calling Child Protective Services on me stating that I was endangering my child. My daughter was a stage I Wilms patient. I decided to take her to a holistic doctor and treated her through healthy eating (we are now vegans) and proper vitamins, herbs, and supplements. She is now 3 and will be 4 in May. She is doing WONDERFUL. I have since allowed her to have MRI's at Johns Hopkins Hospital to check if anything has come back and there has been no return. She can still have children in the future, doesn't have any side affects and will lead a "normal" life. I am very sad that these doctors would push chemotherapy, which I got the doctor to admit that it is actually POISON on such young children and babies. My daughter is living proof that the radiation and chemo is not needed!! I wish everyone the best of luck as I am only here to spread a little different information.

Or
Posts: 1
Joined: Jun 2014

Hi all! 

I'm a 29yo male from Israel, I had wilms tumor when I was at the age of 18 months and had my right kidney removed. It was so weird reading all the posts here about all of your lifetime experiences because it felt so familiar. Since I remember myself I've always felt so embarrassed and ashamed of my scar and my curved right side of the body and always "hated" all kind of activities that could or may involve taking of my shirt, every time I had to give an excuse why I don't want to go to the beach/pool while all my friends having the time of their life :-( As well as with the opposite sex, I felt so uncomfortable with my body and tried  to hide it as much as I could in every intimate situation i've been to.

Few years ago I went to a plastic surgeon hoping he could provide me some good new regarding of "fixing" my deformity (same problem with the hip, pants here) but unfortunately he told me there is nothing he can do because it is too "internal" and complex than I think and it is just too risky and not worth the risk. I remember I was devastated that day since all my life I was hoping that one day it can be "magically" fixed...I guess I was wrong.

As far as I remember I never had special health problems that I can relate to the cancer, but after reading all of the comments above about how different issues can start after people turned 30 made me feel a bit anxious.

 

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